About

I’m a man in search of a dream, both literally and figuratively.

My dream is to sleep again.

In the solitude of that sleep, I will be able to dream and allow my brain and body to heal and enjoy life the way it’s supposed to be enjoyed.

It sounds simple, doesn’t it? Sleeping. Just close your eyes and drift off into another world and leave your current one behind.

For some of us, it’s the most difficult part of our lives.

I cannot sleep like a normal person because of muscle twitches and jerks at the VERY second I begin to fall asleep.

Every single time I begin slumber, a twitch and jolt from my rebellious body wakes me up.

I’m not alone either. Some call it hypnic jerks, or sleep myoclonus, or sleep starts. I call it torture.

This blog is to bring those of us suffering from this condition together. This is our voice. I’m finished suffering by myself and not knowing how to explain this to doctors or others. Let’s help each other gets our lives back. We don’t have to feel alone and helpless anymore.

1622 thoughts on “About”

  1. Any update from’ tmwcns ‘. Have you found anything that has helped at all?

    • Hi Michelle, that’s great that p5p works consistently, I had a few days where I felt it did hellp, bunch afraid to take more than 2 capsule which are 36-50mg each as the bottle. Says take 1. You were taking 200mg right? I’m back on taking endep 5mg as this brain arousals or noises are driving me nuts. Anyone tried endep?

  2. Has anyone looked into chronic hyperventilation syndrome?

    I also have this sleeping problem for a year now. It started with a period of stress, which caused a disturbance in my breathing pattern. My brain is now adjusted to it, and it might cause really weird symptoms like:
    Fatigue, muscle spasms, panic attacks, headaches, depersonization and many more.

    The symptoms are caused by a lack of CO2 in the body, which makes the blood less acidic. Your body tries to balance out the PH by producing acid from different areas of the body, which makes your body out of balance.

    I don’t know if it’s the cure. I have this weird sleeping problem, and I also have been diagnosed with chronic hyperventilation. Maybe it’s just a coincidence, but I really hope it’s the cause of this sleeping problem. I am starting therapy soon

    In any case, do some research on Buteyko or pranayama yoga. Both techniques are about increasing the bodies tolerance to CO2 levels.

    Wish you luck.

    • I give up maybe that’s the best idea of all

    • Michelle said:

      Bryan that’s really interesting. My sleep problems started at the same time as breathing problems. I initially started seeing a doctor because I felt like I couldn’t breathe. I wasn’t hyperventilating but i felt like I wasn’t getting enough air so I had to take deep laboured breaths to try to get some air. I went to a breathing clinic and did some tests and all were normal. I don’t know if they test CO2 but my oxygen levels were fine. The breathing problems eventually went away on their own and got replaced with sleep problems. Supplements that help with GABA production have been helping with the twitching and adrenaline rushes I would get in my sleep. The weird thing for me is every time one problem gets fixed it gets replaced by a new one. So confusing. I’ll have to do more research on this hyperventilation syndrome. How did you get diagnosed? Was there a specific test they did for diagnosis?

      • Yeah exactly, for me this also started with breathing problems. and eventually got replaced by sleeping problems.

        Can I ask you what tests you did?
        If it is hyperventilation, there will be no problem with your oxygen levels. There is a misconception that you get more oxygen when you breath more: your blood has a maximum saturation level for oxygen. However, when you breath too much, you can lose carbon dioxide which is the problem. A lack of carbon dioxide also causes your blood vessels to contract, therefore not enough oxygen and blood is provided to your organs. You get the feeling of suffocation, while breathing more is the cause of it.

        After prolonged periods of stress and anxiety, you will be hyperventilating unconsciously. If this takes too long, your brain will adjust to this breathing pattern.

        I live in the Netherlands, here we have something called hyperventilation provocation test. You are asked to breath heavily for 3 minutes long. If you are a over breather, your body will react to this negatively really fast. While you are doing this, they are also measuring the amount of CO2 you are losing. Also if you are a overbreather, you will recover from this very very very slow. (Don’t do this at home, as this is dangerous: I almost fainted, always do this with an expert watching)

        There are a lot of other methods, but I don’t know of them. However i have heard that measuring the blood for CO2 levels is not very accurate.

        This hyperventilation syndrome is s very new disease due to the stressing modern lives, so not many doctors know of this syndrome. You have to do a lot of research yourself and convince your doctor of it.

        I hope this helps you, message me if there is any news.

        Good luck

      • Interesting, I’m always experiencing shortness of breadth when the jerks are at there worst and feel like I need to suck in air. It somdtimes lasts for a week

      • I am no doctor, but I believe that those jerks are mini panic attacks from the body.
        Our mind wants to sleep, while the body and nervous system is still active due to overstimulation from our breathing throughout the day.

        This past year I have wondered, if I really got some disease, brain damage, nerve damage, epilepsy etc. why is only my sleeping impacted? Why can I still function normally (expect for sleeping)
        Also, I noticed that many people with this sleeping problem started with some kind of period of anxiety and stress.
        After research I came with two possible theories:

        1) Diffiency in electrolytes (magnesium, calcium, pothasium, etc.) and vitamins (vitamin B12 & vitamin D)
        2) chronic hyperventilation syndrome

        I really don’t know if this sleeping problem is caused by chronic over breathing, but I have not encountered this yet at any of these forums, which is completely logical: “why would a doctor check your breathing when you come to him with sleeping disorders.”
        After reading your comments I am starting to get hope now. Hope you do so too. It’s worth the shot!

      • Jessica said:

        Hey Bryan-

        Is this the same Bryan that got this crap from trying a research chemical?

        Are you thinking that the chemical was not the culprit and that there is another issue going on? I know you have struggled with this for some time- 3 years? I ask these questions because I see people healing a lot sooner than me when they get this crap from benzos like I did. I’ve wondered if my progress will take years as I’ve made little to no progress in the 9.5 months off of clonazepam. One pressing question that I’ve wanted to ask you… Do you feel like you’ve made any leaps in healing since your first year with this? Did you have other symptoms, like burning skin or rapid heartbeat? Sorry to ask so much of you. Wishing u all the best.

        Jessica

      • Hey Jessica,

        I am not the same Bryan, maybe I should change my username haha.

        No, for me this problem started after a month of a lot stress and anxiety.
        Sorry can’t answer your questions as I am not that person.

        what I can say is that my sleeping problems came along with a bunch of other weird symptoms like, breathing problems, panic attacks, muscle tension. all these symptoms are gone now, my sleeping problem is the one that has stayed.

        If you got some weird, vague, unexplainable symptoms as well, I should definitely take a look at chronic hyperventilation.

        I am no doctor, I am simply pointing out a possibility which has not been mentioned yet.

      • Medications definitely do it . Once the Jeanie is out of the bottle it may never go back in . Ive been dealing with it for 3 yrs now .

      • Mine came out of the blue, or from what I believe was a hair straightener product that I reacted from bad smell which that night I woke I’m a panic, as never had an issue before that… How is zoloft going for you Mark?

      • Still not sure . Definitely has side effects . When I take it at night the jerks go crazy and when I take it in the day I’m exhausted . But I’m happier a bit it seems . Definitely has sexual side effects . There is no doubt . I have side effects to everything I take and I wish it was in my head but it isn’t . Im starting to resign myself to just knowing I’ll have this forever and every day is a fight . Sometimes when I wake up jerking I just go take enough of whatever to knock me out . If that’s what I have to do that’s what I have to do . I’m almost to the point of not caring about getting addicted to a drug . I’ve said this before Xanax xr will make you sleep but it’s so addictive after 3 months taking it getting off of it broke me down totally . I felt like so bad I can’t explain it .

      • Jessica said:

        Hey everyone… Have you tried seizure drugs not in the benzo family? Gabapentin, keppra, etc. I’ve gone 2 nights in a row with zero sleep and ready to lose my mind. I don’t know what to do. I was getting by with up to 4 hours sleep on no meds but now I’m suffering horribly again. I can’t take a benzo! They are poison to me. Do any of you have lots of other symptoms? I’ve got horrendous burning skin, vibrating legs, nausea, fatigue, and fast heartbeat. I’m in misery. Hypnic jerks have ruined my life. I’m ready to throw in the towel.

        Mark… Have you taken many benzo doses over the last 3 years? Perhaps this is a reason for still having them? I know we are all different, just curious of your thoughts on your situation. Do you ever have zero sleep nights?

      • Michelle said:

        I was prescribed Gabapentin which is also prescribed for epilepsy and restless leg syndrome. It worked for me to get rid of the twitching and jerking. Since it worked I figured the twitching had to be related to the GABA neurotransmitter so I started taking P5P and Taurine because the help with production of GABA. I also had success with that. I sometimes still have what I call “abdominal convulsions” if I am sleep deprived or overtired and when that happens I will take the gabapentin. I don’t take it regularly because the P5P and taurine are working for me but if I am sleep deprived and know it will be a bad night I will take the gabapentin and it usually works. Have you tried it Jessica?

      • Jessica said:

        I’ve not tried the p5p… But I was on gabapentin for several months early in withdrawal. It didt seem to help except for extendingy sleep a bit. The seroquel and mirtazipine were the only drugs that put me to sleep. I’m feeling desperate to everything again and see if they’ll help this far out. How much sleep do you get? Do you wake with jerks?

      • Michelle said:

        I don’t wake with the jerks anymore. I get at least 7+ hours of sleep. When I was going totally crazy I was getting a couple of hours sleep some days for several days in a row. The P5P is worth trying…at least it’s natural. Gabapentin typically takes some time to adjust to. I was exhausted from taking it at first and I was supposed to gradually increase the dosage. Didn’t think I’d be able to tolerate more than 100mgs but eventually I was able to build up to it. But lately I find when I take it I feel high…like totally spaced out and weird…but it does stop the convulsion I will sometimes still get if I’m overtired.

        I’ve also ordered pharma gaba. It’s a natural form of gaba. I tried gaba supplements and they did nothing which is why I tried the P5P. Regular GABA supplements are useless because they are synthetic and don’t cross the blood brain barrier. But I just recently read about pharma gaba and it is natural and does cross the blood brain barrier so I am going to see if it helps. I am very resistant to the idea of taking medications, even ones that work. I worry about long term side effects etc so whenever possible I will go the natural route. That’s why I’ve done so much research and tried so many different supplements. Just looking for something that works. So far P5P has been the biggest help for me….and it’s cheap.

      • Anonymous said:

        I second that . Been jerking bad for a straight month last night took 12 mg p5p was out 6 hours without waking up . It just makes me tired the next day . I think that could be an answer to this

      • Michelle said:

        Jessica I looked up the meds you said helped you some and they both work as serotonin antagonists. I also looked up the burning skin sensation you are feeling and searched it with serotonin and came up with serotonin syndrome which fits with what your symptoms are:

        Serotonin syndrome symptoms often begin within hours of taking a new medication that affects serotonin levels or excessively increasing the dose of one you are already taking. Symptoms may include:

        Confusion
        Agitation or restlessness
        Dilated pupils
        Headache
        Changes in blood pressure and/or temperature
        Nausea and/or vomiting
        Diarrhea
        Rapid heart rate
        Tremor
        Loss of muscle coordination or twitching muscles
        Shivering and goose bumps
        Heavy sweating

        If you are interested in trying the natural route. Natural serotonin antagonists are panax ginseng, shilajit, and vitex. Serotonin syndrome is dangerous so it’s important you do something ASAP if that’s what it is, and it sound to me like it is. It’s often triggered by certain medications.

      • Jessica said:

        Thanks Michelle. All of these symptoms are also a side effect of benzodiazepines, which is what is going on with me. They are known to mostly affect gaba and glutamate, but play a role in all brain chemicals including serotinin. My brain is toast. I’ve been suffering horrendously for 14 months with this crap. I will look into p5p further.

      • We need some kind of anti anxiety medication that doesn’t have horrible side effects you think that would not be to much to ask .

      • Michelle said:

        Hey Bryan…I think the doctor checks your breathing and heart rate as part of a standard checkup for anything. I don’t think it’s something they relate with sleeping disorders or anything else necessarily…it’s just standard practice.

        I find the overbreathing theory interesting but I’m still not sure how that could cause all these other symptoms. I have thought about my breathing many times since all this started…mostly I think because it began with breathing issues. What I have noticed about my breathing is I think I am a shallow breather most times. I’m never really taking deep breaths. So I initially wondered about that when breathing was an issue. I have had the breathing issues come back occasionally and then go away again. One thing that cleared up my breathing issues were liquid copper supplements. I started seeing a naturopath who told me I was copper deficient and when I started taking copper the breathing issues went away. The naturopath explained to me that low copper can cause all kinds of negative symptoms such as a rise in histamine levels which causes all kinds of different allergic reactions. Another thing is that copper binds with iron which helps transport oxygen throughout your body. So I find it interesting what you are saying about the overbreathing thing.

        That being said, the breathing issue is the only symptom I had prior to all this sleep stuff that happened during the day and resolved during sleep. Everything else I have experienced has happened during sleep except for some weird feeling in my head that I just started getting recently. I wonder if there is a connection or if they are totally separate issues.

        I

    • Hi all,

      The post about Chronic Hyperventilation got me thinking, as I have recently been having an additional symptom – a tingling sensation on the right side of my tongue that comes and goes. By controlling my breathing it seems to go away. Both the jolts and this tongue sensation have both been linked to chronic hyperventilation in others, so it seems to be a good possible lead.

      When I changed my focus to thinking about breathing, I realised that I tend to hold my breath and breathe shallow/through my chest a lot. By relaxing my stomach to breathe more through my belly, i had another realisation – I suck my tummy in all the time.

      In my usual standing posture I have a very standard, athletic-ish build, and people looking at me would not say I am overweight at all. However, when I relax my stomach and “let it all hang out” I really have quite a sizeable gut – i was actually kinda shocked..

      Reading up online, it seems sucking in your tummy can actually lead to a whole host of negative health effects, including bad posture, increased adrenaline, slowed metabolism and screwed up blood oxygen levels. I am beginning to wonder if my sleep issues and even my anxiety are stemming from a consistent attempt to hold my body in an unrealistic figure that is different to its natural shape.

      I have been trying to pay attention to my breathing when I go to sleep as much as possible, keeping it slow, controlled and a good balance of in/out. Although one’s attention definitely drifts when you’re starting to fall asleep, I have noticed that the nearer I get to sleep, the less I seem to actually breathe.

      Over the next couple of weeks I am going to experiment with carrying myself in a more relaxed pose, breathing more calmly through my stomach and perhaps trying to lose a bit of weight as well. Will let you all know how I go..

      J

      P.S I have also been trying out P5P and while it definitely seems to improve my sleep quality, I also had two really bad jolts the other night while having taken it just a couple of hours before, so not sure it’s preventing anything for me.

  3. I don’t know either.

    I also have a weird feeling in my head, which I describe as a feeling that everything is a dream. Does this sound similar?
    I had some doubts too first, however after some research i became convinced that breathing might be a possible cause.
    I don’t know if I am allowed to post links here, so I will not.
    but in any case, do some research on chronic hyperventilation, and the relation between over-breathing and epilepsy.

    I got this from the epilepsy foundation:

    “In normal conditions, all electrical signals that travel among nerve cells are related to objective and important processes, such as the work of the senses, memory, analysis, logic, decision making, voluntary and involuntary movements of muscles, etc. The electrical signal is transmitted from one nerve cell to another only when the voltage or strength of the signal is high enough. It should be no less than a certain threshold value: the threshold of excitability of the nerve cells that directly relates to seizure threshold. The normal value for the threshold of excitability is about 50 micro volts in mammals.

    When this seizure threshold remains normal or high, the electrical signals are
    transmitted as in the normal computer. Adaptation and self-improvement are the normal final outcomes of these processes in living creatures. Hence, in order to have a positive effect on the biological system(learning, survival, self-defense, etc.), it is crucial that the transmission of these neuronal signals satisfies 2 criteria:

    1) These (real or objective) signals are transmitted and facilitated
    through the network of the nerve cells so that no important information
    is lost.
    2) Accidental or irrelevant signals get hampered so that they cannot
    interfere with the normal work of the senses, memory storage, memory retrieval,
    comparison of experiences, solution making, execution of solutions,
    feedback, etc.

    If for some reason this threshold becomes too low, accidental signals can
    be amplified causing disruption or even suppression in the normal work of the
    central and peripheral nervous systems. Consider what happens during abnormal
    changes in breathing. When the breathing pattern is disturbed (less than 5% of modern people, according to tens of published studies, have normal breathing parameters these days (see Hyperventilation Prevalence), blood gases become
    abnormal. The most common abnormality is arterial hypocapnia (low CO2) and cell
    hypoxia (low O2 in tissues, the brain included), where overbreathing or
    hyperventilation (breathing more air than the medical norm) is the key cause for
    both effects. (For medical research visit Hyperventilation Syndrome in the Sick) Let us consider how the seizure threshold depends on carbon dioxide and oxygen.”

  4. Anonymous said:

    Hello everyone. I am 36 years old with science/medical background. I have always been a health conscious individual and had no sleep issues. The only health condition I experienced prior to the sleep starts/hypnic jerks (propriospinal myoclonus) was hyperhidrosis (excessive sweating of palms, underarms and feet). I have had this problem my whole life. I sweat under the same conditions as everyone else does, it’s just how much I sweat in these areas when I do sweat that is the problem. Since the hands and feet are functional areas of the body, it interferes with quality of life. I have tried several treatments throughout the years – antiperspirants, botox injections, iontophoresis – all worked at first but then stopped working (body formed resistance to it).
    I tried acupuncture 4 years ago and I feel this was what triggered the jerking. My body at the time was too weak to tolerate it, due to other factors such as adrenal fatigue, and I feel it caused some sort of sympathetic reaction that triggered the sleep starts/hypnic jerks (propriospinal myoclonus) when trying to fall asleep. I also had some auditory starts that went along with them (a buzzing sound). In addition, I did have burning in my quadriceps muscles and experienced rapid weight loss. Of course the medical community, including acupuncturists/naturopaths, showed no accountability and offered very little support. The thing with this that I find common is the sudden onset – whatever the cause (medication, stress, et cetera) – it is a neurological side effect of a sympathetic trigger that once initiated does not resolve quickly and perhaps not on its own. Based on research and personal experience, benzodiazepines seem to be the first line treatment for this problem, particularly clonazepam, or lorazepam in my case, in reference to the Italian study and other limited literature on this condition. Unfortunately, withdrawal from benzos (along with other meds) can also trigger this. Lorazepam was what was first prescribed to me and it was what I stuck with because it worked for me and it acts on the same alpha subunits on GABA receptors as clonazepam, the difference is it has a shorter half-life. Other benzos work on other subunits and therefore can have other effects on the body; hence, I recommend sticking to these two if they work for you. GABA receptors open chloride channels on the neuron allowing an influx of chloride into the neuron therefore inhibiting the cell. Feel free to research these receptors, where they are located in the brain and other areas of the body, how they are affected, et cetera. If these receptors are not functioning properly, the (nerve) cell cannot be inhibited properly and will remain in its excited state. Benzodiazepines act like GABA and bind to GABA receptors allowing the chloride channels to stay open longer and allow for a greater influx of chloride into the cell. The reason dependency happens is because benzos over time desensitize the receptor. All medications that alter the body’s chemistry, particularly brain chemistry, run a risk of dependency; however, in this case, we have to evaluate pros and cons and have to get our bodies to reestablish sleep – a vital function – and allow itself to hopefully “heal”. Neurological situations are often not a short-term fix and require time, not to mention factoring in today’s pace/demands.
    My story is similar to others who experience this issue; however, I am doing much better and feel my sleep is almost back to how it was before this horrific experience. My body, however, is much more sensitive physiologically now and I will always be concerned that a stimulus, whether physical or emotional, will once again provoke it. I will list below the steps I have taken to help my condition along with some things that I have found aggravate it.
    – melatonin 0.75 mg about 45 min before bed – take a 3mg tablet and cut it into quarters. I use Natural Factors brand.
    – lorazepam at bedtime – this medication saved my life – when my symptoms began I was taking approximately 1-2 mg nightly. I tried many times within the first year to wean off but my symptoms always returned with a vengeance (perhaps my body did not yet have enough time to heal and life doesn’t stop). I had to be on the medication for a couple years before I felt my sleep was somewhat restored and at that point I began to wean again (this can be different for each person). I would go down about 0.25 mg at a time and would stay on a new dose for a couple months before going down again – you have to allow for your body to adjust and this can be different for each person – found my hormones influenced my symptoms and always began weaning following menstruation. The process has not been easy. Found Novo brand better than Apo brand because the tablets are harder and easier to cut without crumbling – Rx was for 1 mg tablets, cut in half for 0.5 mg, cut in quarters for 0.25 mg. What also helped was using a consistent pharmacy and pharmacist that was supportive. I am currently taking 0.25 mg nightly and have gone a couple nights here and there without. I no longer experience the auditory starts.
    – stress both excessive physical and emotional, exacerbates the problem like it worsens all other conditions and can add to recovery time. Avoid excessive cardiovascular activity that over stimulates the sympathetic nervous system, particularly in the evenings. Keep active but avoid excessive exercise. Avoid adrenal fatigue (look up adrenal fatigue syndrome). Emotional support from a good therapist, also, hopefully, family and friends will be empathetic and supportive (not always the case).
    – routine – this includes sleep hygiene – you can take on more and include more change as you improve
    – omega-3s – have been shown to support neuronal health and help with the hypnic jerks just be cautious about supplementation if you have a lower BP level. I did it through diet.
    – multivitamin with Vitamin B-6 (P-5-P) and magnesium
    – My research and experience has shown that SSRI’s have had either no effect on our condition and can often make it worse. SSRI’s have become the drug of choice, replacing benzos, but theses two drugs act upon different pathways. In fact, these medications also run the risk of dependency and in some cases have triggered hypnic jerking in people when they were withdrawing from them. SSRI’s, 5-HTP, tryptophan all influence serotonin, which I feel may not be the culprit here. However, if it works for you then stick with it, after all, all chemical pathways in the brain are interrelated somehow and are not completely exclusive of each other.
    – avoid anti-histamines or sleep aids that contain them including cough/cold medication and prescription antacids – use halls or tums or effervescents such as briosche
    – avoid the antibiotic ciprofloxin – has been shown to provoke these type of symptoms in people
    – tried GABA for a few days but it did not work and gave me a cardiovascular episode – affected my blood pressure (BP) and increased cardiac stroke volume – should not take if have lower BP – studies have shown it to be used to lower BP in individuals with hypertension
    – avoid alcohol and caffeine
    – avoid over-stimulating fragrances/chemicals/products
    – my sleep study a few years ago showed no respiratory issues but did show an alpha-wave intrusion which doctors dismissed but was clinical evidence of what I was experiencing. Otherwise, nothing unusual showed up in my blood work or MRI scan I had when the problem started. When this first happened to me, my body could not sleep and if I did eventually fall asleep I would go immediately into REM sleep – my NREM sleep was affected – the benzo restored this, and although the process has been grueling, my sleep has almost been completely restored.
    – pray/meditate/hope
    – do your research (hypnic jerks, sleep starts, propriospinal myoclonus, exploding head syndrome, adrenal fatigue, traditional and alternative medical treatments/medication with neurological side effects and susceptibility to side effects), listen to your body, and be persistent with medical professionals and ask for copies of any diagnostics. A major struggle is finding physician(s) that are willing to listen and treat rare conditions (especially neurological).
    – do and stick to what works for you

    • I was just recently diagnosed with severe depression (mostly due to this sleep disorder and having a chronic, acute episodic pain issue). I finally seeked help as I knew I was hitting rock bottom. I cried for days..even still. Didn’t go to work. Didn’t go out and do anything. I guess you could say that if I got killed in a car accident…it would almost be a relief. Sad to say but true. One thing I’m worried about is the SSRIs in the antidepressant medication. I know I need to take them but I’m terrified it will make things even worse. Do you really think it could? Unless there are antidepressants that don’t contain SSRIs…..I don’t know.

      • I just took Zoloft no need to be scared. They can change everything. Cannot hurt to try, as you said you are suicidal, go get on one now.

      • Hi Kira – So sorry to hear that yet another person is suffering with this. Is anything helping you get at least some sleep? I’ve tried a couple SSRI meds over the years and did not have great success. Isn’t mirtazapine used to treat depression and some on here also report improved sleep too. Maybe worth checking into. Everyone’s chemistry is different so you could try an SSRI and see if it helps. Hope you find some relief.

      • The Clonazopam normally helps. Just not very well recently but that could be due to the enormous amount of stress I’ve been under. Maybe I will Look into Mirtizapene (or however you spelled that) or Zoloft as mark said he was ok with it not making his jerks worse. I’m just so scared to take anything now.

      • Low dosage mirtazapine helped, but I felt like it ramped up my anxiety. You could try it abd see. The good thing is you only need 5mg and the starting dose is 15mg, so you’re pretty much at a very low dosage.

      • Michelle – Did you see that “Lidtke” brand supplements has a supplement called Slumber EZ that has all the supplements you mentioned in 1 formula? It says it’s not for everyday use but pretty much everything we all have to take is mostly not for everyday use. Just FYI. I might try it. Also the heavy metal chelation with ALA and DMSA sounds interesting. I have braces (ortodontics) and I wonder if that would be a problem?

      • I felt the same way with Keppra. Anxiety through the roof. But everyone is different. I know one girl on here said Keppra worked like a charm.

      • Hi Kira,
        I’m at the point where I’m trying so hard to not take anything and occasionally have success falling asleep in 20min and unlike last night close to 2 hrs. I am managing 4 straight hours and after that it’s very light for an hour or 2 with twitches breaking the sleeping constantly. I feel like I’m dreaming while partially awake as some here have mentioned. I don’t know if water is doing much but it sure will help. I’m living on 4hrs sometimes 4.5 med free and vitamin free the last week and a half. For some reason I’m finding interrupt things, I’m just so confused at the moment.

      • Hey CK, I think that is awesome you can even sleep 4 hrs without any drugs. I wish I could do that. I just picked up some P5P, Taurine and Magnesium Bisycinate. I’m gonna give it a try as I would much rather take something natural. I hope it helps. I’ve also contacted this Dr. Andrew Lim from Sunnybrook hospital in Toronto. He is a scientist/doctor who studies sleep neurology. I saw him on a documentary and decided to try and contact him to see if he could help. Maybe if enough of us contact him, he will. His email is andrew.lim@sunnybrook.ca. What we need are highly intelligent, dedicated and compassionate medical professionals who will take us seriously and try to figure out what’s happening. Until then, at least we all have each other.

      • Hi Kira, hope P5P, Taurine and magnesium help. Keep us updated. You definitely need something natural if it works. It won’t be a bad idea if we all sent this Dr an email. If he hears it from more people it might be enough to convince him to look into it. Honestly, that’s all we ask, someone to just hear our struggles with this buzzard condition.

      • So true Kira. Thank you.

      • There are antidepressants that aren’t ssri’s. Some boost dopamine levels. Tricyclic (sp) aren’t ssri’s I believe.
        I truly feel for you; the lack of sleep can be devastating. People who can sleep have no idea. I’ve been to those levels of depression and can relate. Hang in there, talk to your doctor and ask a lot of questions while providing a full history of your symptoms.
        Take care

      • Thanks Brian I will mention that to my therapist. And yes your right, until someone is going through this, they have absolutely no idea how debilitating, frustrating and depressing it is. Something your body should be able to do naturally and it can’t. Feels like there is no escape from this torture. You can’t even sleep it off! Like some would say. I don’t get it. But I take comfort in knowing I’m not alone and thank God for this blog.

      • So true Kira. I don’t think I would’ve managed without this blog. The first 8 months were hell. I still feel like I’m living in one big nightmare.

  5. Anonymous said:

    Sorry everyone, just wanted to make a correction to my long-winded post. When I stated that “serotonin, which I feel may not be the culprit here” I should rephrase that seratonin levels can indeed be a trigger, as was mentioned by Michelle, but I was referring more to how the GABA receptors have been affected as a result. All pathways interrelated. Wish there were more specific diagnostics in terms of neurotransmitter levels in the body – the medical community needs to work on that – how can neurochemical pathways be readjusted properly without having the necessary specifics?

    • Michelle said:

      Anonymous I definitely found that my sleep issues, jerks, twitching etc were caused by GABA and taking P5P has made a huge difference…that’s why I started taking it once I made that connection.

      My post about serotonin was directed towards Jessica specifically because her symptoms of nausea and skin burning didn’t seem to fit with the GABA deficiency so much but definitely seemed to fit with Serotonin Syndrome, although it could be a combo of both perhaps.

      I agree the medical community needs better diagnostic resources and ways of measuring NT’s. For me it was a year of guessing and ruling things out. I went through supplements for adrenal fatigue, serotonin, dopamine, and finally nailed it with the GABA. It was a lot of research and a lot of trial and error. I tend to avoid medications though in favour of the natural approach so I take P5P and Taurine supplements, and occasionally gabapentin when I need it because sometimes the symptoms are worse if I’m overtired and the P5P Taurine combo doesn’t seem to cut it.

      • Hi Michelle, Just checking how long before bed do you take P5P? I’m finding it’s very hit and miss and usually take it just after I go to bed have a jerk then take it. It might have settled the jerks but has it worked for you on the brain arousals. Last night I experienced back the head thump(like my brain dropped as you described) and internal head twitches. Like everyone once I’m awake, there is no chance in seeing with the inner jerks Also, anyone take Flexeril? , I’m taking baclofen when needed. but I believe it is similar.

  6. Anonymous said:

    Hi Michelle, I agree with your post about using natural approaches as oppose to medications if possible. I have a sensitive stomach and have to use vitamins intermittently – I also forgot to mention that keeping electrolytes in check can also help. The one thing I want to stress to everyone, that you have also emphasized, is the importance of research, especially when it comes to side effects not only for western but alternative medicine as well, and trial and error (doing what works for you).

    • Does anyone have issues with their ears also? My tinitus hasn’t stopped wince this all started and last 2 weeks I have a build up of wax that seems to leak from both ears every night… Hate it..

      • No

      • Michelle said:

        Hey CK,

        To answer your questions. I take P5P twice a day, 2 in the morning and 2 in the evening. I usually take it about 1-2 hours before bed. Not everyone can tolerate it in the morning though…I believe Mark said it makes him too tired if taken in the morning. I rarely have the other issues when I’m awake and I’m still trying to figure those out. Like the brain dropping feeling has only happened a couple of times. I definitely know it is related to being overtired on the occasional days that I don’t get enough sleep. I just received my order of pharma gaba and am going to try that as well and see if it makes any difference to anything.

        As far as tinnitus and earwax, I don’t have that problem. However I know I had a detox reaction to P5P after a few weeks of taking it, and I wonder if the earwax coming from your ears could be just that…your body cleaning something out and in your case it’s your ears. I have read that 1/4 raw apple cider vinegar (it’s the kind with mother) from the health food store, mixed with 3/4 water and dropped in your ears with a dropper or Q-tips soaked in it and used to clean your ears can help enormously for tinnitus so you might want to give it a try.

      • Thanks Michelle, I will definitely try the apple cider vinegar. Also, how many mg are your P5P? Mine are 32.5mg per tablet and a pharmacy grade.

      • Michelle said:

        Hey CK…mine is 50 mgs.

      • So your taking 100 mg a night? Maybe I’m not taking enough..

      • Michelle said:

        Yes CK 100mgs morning and night is what I take. I cut back for awhile to 50mgs morning and night when my skin started breaking out and noticed the jerks came back, milder but still there so I upped it again. My skin cleared up after a week and I haven’t had any major breakouts like that since so I believe it was a detox reaction. Maybe try increasing by one pill to bring your dosage up and see if it helps.

      • Thanks Michelle, I will tonight.

  7. Anonymous said:

    Just wanted to add that valerian root is a herbal substance that has been shown to work similarly to benzodiazapines and it is often taken to help people who are weaning. It binds to a different subunit on the GABA receptor but apparently has the same effect on chloride movement into the neuron. It has apparently also been shown to decrease the removal/metabolism of GABA thereby allowing it to stay around longer (www.ebmconsult.com). Jaimeson brand has a pill form without any additives (most brands combine it with other stuff). There are also tea forms available. I have not tried it on a regular basis because I have been taking lorazepam which has worked for me and I was concerned about cumulative effects. Have to be careful when combining meds even if one is considered herbal/natural.

    • Thanks for the tip. I’ve been trying to cut back on clonazepam for awhile now.
      I’ve been taking a dose every night for help tolerating cpap therapy. Seldom took more than 0.5 mg for sleep. Sleep doctor tells me there should be no withdrawal effects from the low dose and tells me to just take it for more sleep. Still I develop a headache after cutting back to 0.25 mg for 2 days or more. Then I go increase again for a couple days and try cutting it back again. Maybe valerian will help. From what you say, I won’t combine the two. Doctors seem oblivious to the torture people can go through while trying to get off this stuff or go back to taking it intermittently. I never went up to the 1mg every night as prescribed.

      • I see no side effects from klonopin . I think that topic is Way over done . Eat the shit out of it if it helps . Life is short . I don’t care if you have to take 10 mg a night . You have to stop the Cns one way or another from ruining your life. I’ll eat it like candy if I have to . So what ? I’m 50 . What am I doing worrying about what happens to me at 90? Who cares ? I’ll have a limp dick be wrinkled with no hair . Who wants to live that long anyway ??? Take whatever you have to to knock you the hell out . Eat them like chewing gum . Now that’s the truth . I’ve been dealing with this for 3 yrs and its bullshit . Done worrying about side effects . I twitch one time I taking enough to stop a horse . Period .

      • Understand Mark, but some have gotten it from coming off Clonazepam for other reasons. So it’s pretty hard to take something that started it all. Clonazepam obviously helps but is not the answer. As far as how I got it, God knows. I ask the question everyday. As mentioned before 44 and healthy as anything and fit as anything.. Go figure.

      • P5P Is working for me no doubt. That and Zoloft. That said if the Klonopin works I would take it forever. Sick of trying to figure it out.

      • Jessica said:

        Mark,

        I respect the decision to take benzodiazepines for this condition when one is desperate. However, to say that the topic is overdone as you stated does not help those in the process who are searching for answers. My best guess is that for those with an extremely sensitive Cns (like all of us here) adding benzos to it will likely cause further issues down the road- and if not any further issues than likely no resolution to the problem. From my own personal experience and my complete living nightmare that I’m in after 10 months off clonazepam, I have no doubt that these drugs are very destructive for many and cause months and sometimes years of agonizing hell. I’ve been in touch with a lot of people who got this crap from benzos and unfortunately it takes anywhere from just a few short weeks to 2+ years for the for the jerks to stop. Knowing that it can take up to a few years for homeostatis to occur, I strongly believe that many people here continue to have jerks and jolts at night due to a compromised cns from taking benzodiazepines. I’m not here to tell people to stop taking clonazepam if it is giving them relief. No. I just want to warn any newcomers before they put all their trust into a pill that could possibly ruin their life like it did to mine. I would not encourage anyone to take such a harsh drug unless they have tried all other logical methods first. I would encourage anyone who plans to get on clonazepam to look at the forums online that are dedicated to benzodiazepine withdrawal syndrome. Thousands of people who are all living in their own personal hell with an assortment of symptoms that make the stomach flu look like a piece of cake. I have 20+ symptoms; the jerks and close to zero sleep at night being my worst- tachycardia being my second. Both serious medical issues (from a tiny little pill that i only took for 2 months) that cannot be fixed overnight. Good luck
        to you.

      • Michelle said:

        I agree with you Jessica. My doctor prescribed Clonazepam for me and when I took it to the pharmacist who was in the same office he said to me “I don’t like this medication…be very careful with it. Only take it if you absolutely must and try to avoid taking it every day”. I told him my doctor told me to take it every day for at least the first 2 weeks and he did not agree and told me it’s highly addictive and can cause a host of other problems in the form of side effects. He told me if I need it take half the dosage advised by my doctor and only when I absolutely have to. I have for the most part avoided taking it very often except days when I was absolutely desperate.

      • Jessica said:

        Michelle,

        Your post had put me in tears. I am sobbing because if I would have had a pharmacist like yours, I would never have gotten in this mess. My while story is a series of unfortunate events. So many doctors, so many symptoms, and not a single clue! You are lucky that to didnt get too deep in the use of that nasty drug. It obviously helps some people, but I would give may thing to erase it from my life and ban it from use outside of emergency and operating rooms. One should obtain a card for use just the same as a person needs a card for medical marihuana. It’s crazy that a “weed” is illegal in some states but its perfectly ok to give benzos to people without informed consent… And against the manufacturers recommendation to not extend use beyond 4 weeks!

      • Jessica- said:

        Michelle,

        Your post had put me in tears. I am sobbing because if I would have had a pharmacist like yours, I would never have gotten in this mess. My while story is a series of unfortunate events. So many doctors, so many symptoms, and not a single clue! You are lucky that to didnt get too deep in the use of that nasty drug. It obviously helps some people, but I would give may thing to erase it from my life and ban it from use outside of emergency and operating rooms. One should obtain a card for use just the same as a person needs a card for medical marihuana. It’s crazy that a “weed” is illegal in some states but its perfectly ok to give benzos to people without informed consent… And against the manufacturers recommendation to not extend use beyond 4 weeks!

      • Jessica have you tried Zoloft? Or p5p?

      • Anonymous said:

        I have tried other ssri’s and they were poison to me. I’m currently back on mirtazpine since I’ve lost the ability to sleep without meds again. It helps at a low dose. I’m currently experimenting with biotin as I’ve not made it to a store to buy the p5p. I barely leave my house, I’m that fatigued and sick. I have a horrendous case of this shit, plus so many other symptoms.

      • Michelle said:

        By the way, have yopu started P5P and have you noticed any difference with it yet? I noticed it helped me about a week after I started taking it.

      • Hi Mark,
        I’m with you. Some people here have gotten twitches from benzos; I like you find they are my only defense against them. When I need them, I use them, period. Nothing else shuts them down when they are bad. I am 47 and I work a lot and need my sleep. I can’t stand slogging through life in a sleep-deprived fog. If I have a day off (I own my own business so some weeks I work 60 hours) so I lay off them then to break the addiction cycle. I’ve gotten mildly addicted several times over and the withdrawals really SUCK; I’m just glad I’ve never got in too deep. I’ve read that they are harder to kick than heroin, but having never been an opiate addict I can’t really say. Recreational use of them is a no no for me; all they do is stop the twitches and kick me out. If too many are taken (especially with alcohol) blackouts occur. I made that mistake and it isn’t pretty. A whole day goes by and you can’t get out of bed or, worse, you do any you can’t remember anything you’ve done. When used only as medication they are a life saver. Etizolam works to. I don’t know where you live but in the USA it is uncontrolled (although not FDA approved) so it can be purchased online. It’s use is recognized in India, Spain and Italy. Has a better safety profile too, fast onset of action and short duration, about 4-5 hours. Highly addictive though too, so caution should be exercised.
        I’ve tried various medications and in the end, when I need my rest, I use the benzos. I have nothing but sympathy for those that find them to exasperate their problem.
        Take care!

      • Klonopin for me has the least side effects.I can take a ton and feel normal next day. Brian you have to try P5P is you haven’t. Zero doubt it is working for me and Jessica or Michelle on here.

      • I’ll have to give that a try.

  8. I gave P%P to a co worker who sleep horribly..NO jerks but… Next day she is in shock. she is sleeping first time well in years. 4 days in a row and counting. No idea why this is working. It does make me tired. But it flat out works. Maybe body is short of b6.

    • Michelle said:

      Hey Mark,

      Glad to hear you finally gave P5P a try and it’s helping you. Jessica just recently said she was going to try it…unsure if she has yet or what her results are, it’s definitely working for me. I believe it effects GABA as it is a GABA precursor and GABA is inhibitory meaning it calms the firing of our nerves. I have done more research and I wonder if part of the problem is also that in some people Vitamin B6 isn’t properly converted to P5P in our liver. Just a theory. But either way, happy it’s helping.

      • Anonymous said:

        Makes sense because when I drank alcohol they were the worst . By far ….. I had to quit even having one beer . Or wine . So the liver part makes sense . If it is busy absorbing alcohol cannot process vit b6

      • Yep even 1 beer does it for me. I’m starting to think even 1 decaf coffee in the morning is makes things worse. I have been trialing the coffee for months and when I stop completely things are slightly better.. Weird and annoying.

      • Anonymous said:

        Alcohol and coffee both raise cortisol levels. I definitely think cortisol plays a role in the jerks.

      • I agree. Tried and tested. For me it seems vitamins could be making them worse also…

  9. Jessica; I’m surprised that first clinic you went to didn’t start you out on something less addicting, like Lunesta or Trazadone. Had you tried those first? Both were offered to me over 3 yrs ago when I first started looking for help. For me, Trazadone was hit and miss and I didn’t like the side effects. Lunesta started giving me nightmeres when I increased to 2 mg. But they do work good for some people.

    There’s a documentary trailer you can view; its called “As Prescribed” and it was put out last January. Lots of people commented.

    • Jessica said:

      Sylvia,

      Yes I’ve seen the trailer to it.

      My ex doc gave me both trazodone and clonazepam and said to alternate days. Both worked at first, until they didn’t. Problem with clonazepam is that it has an extremely long half life so taking it every other day still poses problems as the drug never leaves your system until many days later. For me, I’m obviously highly reactive to this type of drug because it only took me 1 months worth of the drug to start showing symptoms. I’ve read about people who reacted after only a few doses. We are all different. Lunesta is considered a baby benzo, meaning it acts in a similar manner but isn’t as dangerous (apparently). I cannot take it now that I’m in recovery from clonazepam. It would just add fuel to the fire.

      • My night last night.. 2 P5P 60 min before bed, still brain pops and twitches. 2 hour later ,1 500mg gama(pharmacist compound grade) still twitches and brain arousals.3 mg Melantonin, still twitches. 2 hrs later 5mg baclofen and still twitching then 1hr later 3mg Zopiclone, and after some many tears fell asleep for 3hrs. This was one of my worst nights, in a while and don’t understand what is going on. It is 12 months on for me now. I’m getting more head arousals twitches and find when laying on my back they are worse. And the leaking ear every night is torture.. Even on a good night I don’t get more then 4hrs…so.tired and confused., like the rest of us

      • Ck; I’ve had plenty of supplements, etc. backfire on me too. Melatonin puts me through the wringer, no matter what the dose. And one time a friend swears that this OTC sleep med made by “Hylands” works good. Gave me head noise and jerks that went on for hrs. Then 2 yrs ago I’d tried this top quality magnesium glycinate, highly recommended by the MD author of popular book “The Magnesium Miracle”. That stuff triggered my head noise and jerks to begin with. Called to get my money back and they quickly apologized and said there were additives such as b vitamins. I’ll have to admit though that using c-pap has a calming effect on me. I use the Airfit P10 nasal pillow mask (no velcro) with a good quality chin strap that keeps my mouth closed. The mouth air rushing out totally stopped on its own too. Hope an ENT can help with the ear leaking. Never heard of such a thing.

      • cpap has a calming effect on me also

      • Thanks Sylvia, I went to the Dr and said I have an ear infection. He gave me some ointment and Keflex antibiotic. I also asked for some gabapentin which he have me 100mg of. I know some have had success and others haven’t. I’m still trying my best med free even if it is the 3 or 4 hrs I get. I hope u are well?

      • Hi CK; yeah I’m still hanging in there, hoping that eventually cpap will take me back to the life I had 4 yrs ago. I’ve been keeping track of small changes such as feeling sleepiness some evenings, followed by falling sleep right away with very small dose of benzo to help stay asleep longer. Still get a jerk or two or a little head noise, not as often anymore. I’ve been taking a little Manuka honey, sprinkled with pink Himalayan salt at night. Saw where this can help with insulin resistance and for deeper sleep. Manuaka honey is very expensive here but might not be where you are since it comes from New Zealand. Hope you did better last night.

      • Hi Sylvia, I’ve heard about honey and Himalayan salt but never tried it. I got diagnosed with hypoglycemia and was told to stay off honey, as it has too much sugar. Manuka is a little expensive here but not overly as New Zealand is not far. I’ve bought my honey at the markets(honey producer) as it is suppose to be pure honey. Good to hear things are a little better for you and cpap is working.

      • Jessica-

        Every clonazepam withdraw symptom you describe I’ve had or am having. I was prescibed 3 years ago for treatment of hypnic jerks and was thrilled that initially I seemed 100% cured. Over these years and whole lot of other symptoms developed and more clonazepam needed to stop the hypnic jerks. About 4 months ago had to begin taper from 2 mg so I could have some medical tests. Never had been suicidal prior to that. Absolutely positively the worst experience of my life.

      • Lisa did the withdrawl make the jerks worse ? It weird I had those suicidal thoughts coming off Xanax xr for 3 months but not klonopin .

      • Jessica said:

        Lisa- so sorry you are going through this hell too. I also had not experienced suidical thoughts until I got off clonazepam. It is with me every day. The clonazepam leaves behind more than just Hypnic jerks for most people. Crippling depression, rapid heartbeat, burning skin, tinnitus, and fatigue are some of the issues I currently deal with… 10 months off the crap! Are the jerks much worse than the original ones you took the stuff for? I’ve come across 2 people on benzobuddies who also took clonazepam for the jerks and they were made much worse. I can give you names if you want to reach out to them. One of them is currently on Prozac to help the original anxiety that caused her jerks. Without it, she suffers terribly as she recently tried getting off it. She is 15 months off Clonazepam and feels that the clonazepam created a monster out of her original complaint. As for myself, I never experienced a single episode of this crap prior to taking that drug. Now, i think I may be the worst case out there. My symptoms are very disturbing. Please reach out if you need to talk- you might benefit from joining benzobuddies.

      • Anonymous said:

        Has anyone tried beta blockers for these jerks? I did earlier in wd from clonazepam and if didnt help; however, I’m desperate and I’m going to try again with a higher dose. I need a miracle

      • At points I’m claiming worst ever jerks !
        Do you drink much water . Long shit start drinking a lot of water in the day for a week straight let me know if that helps . Especially if you don’t drink regular clear water now .

      • I’ll try it.

      • Jessica – I’ve taken 10 doses of .5 mg clonazepam in the last 10 weeks. I don’t think gabapentin works for my sleep starts. It does allow me to get deeper sleep and sleep longer once I get to sleep which is not easy. I jerk pretty severely when I’m falling asleep. Heart racing, tinnitus, hbp, anxiety symptoms are probably all still from daily clonazepam use for 3 years. I am not willing to go several nights with no sleep however. I just cant. It nearly killed me. I would love to hear your story and I hope things are slowly improving? I might try mirtazapine. The anti seizure drugs haven’t seemed to work as good for me but I didn’t try seroquel.

      • Hi Lisa,
        Exactly what I found with the benzos.i never had tinitus or racing heart and once I started and got off the benzo the tinitus has stayed and the heart rate comes and goes. I experienced breathlessness for 6 months on and off and still do. I’ve noticed even vitamins make things worse for me.. How did yours come on? Mine was out of the blue one night woke in a panic. Only thing I did that day was use a hair straightener product that was letting off a bad smell, which I couldn’t handle for 3 days, so still not sure. 12months on now. Mirtazapine worked for me at very low dosage 3.5mg even, but found it exasperated my anxiety. Tried it on 3 different occasions and every time same. But out of the lot much better drug to take if it works, especially at that dosags

      • Jessica said:

        Lisa- you didn’t taper off clonazepam? You’ve just been using it sporadically now? Ill be honest with you; once you’ve reached tolerance with it (which you have) you must either reinstate to your working dose and slowly wean off (you can refer to the Ashton manual for help) or you will need to just stay off completely from here on out. Taking rescue doses here and there to treat the jerks will only keep your neurotransmitters from healing. And it takes a flipping long time for this to happen for many people! You could be like most who I read about on benzobuddies and get over the jerks within 3 months. My case is really the most severe case of this crap I have ever read about.

        My experience with gabapentin is exactly like yours. If I take it with another sleep med (either seroquel or mirtazipine) it will extend my sleep by an hour or so. I have been off seroquel for 7 months and off gabapentin for 4 months. I was off of mirtazpine for 3.5 months but I reinstated it over a week ago due to a worsening of jerks. A complete nightmare. Apparently getting off benzos produces extreme ups and downs in healing for up to an average of 2 years. So far this has been true for me. Month 6 off was my best month for sleep.

        I have told my whole story on this website about 9 months ago? You might find it. Quick summary: I do not have history of sleep problems, anxiety or depression. My youngest child was 2 months old at the time and I was losing some sleep after she got really sick as I was up all night for a week taking care of her. My idiot doc gave me clonazepam. It worked (took it every other night) and I stopped it after 6 weeks of use. A few months later I stupidly started using it again every other night for noise disturbances and got a refill over the phone. Within a week of use I got major heart palps that eventually led to sleep loss and other crazy symptoms after 2 months or so. My doc had no clue after seeing her several times for all of my new symptoms. The jerks started when I tried going off the crap, so I took it again for another 4 months (while tapering after I found the Ashton manual). It has been exactly 10 months off today and I am still in complete hell with Hypnic jerks. Mirtazipine does help me get between 4-6 hours sleep. But I still have jerks and wake with anxiety. It does not fix my severe depression but it helps me eat more. I would not take seroquel again… Caused horrible breathing issues.

        Pills have been the worst thing to ever happen to me, times 1000. Sadly, doctors don’t seem to give a rats ass that this has happened to me. It’s a long story how I ended up seeing about 20-25 different medical professionals for this, but of those people, only about 5 understand how horrible these drugs can be for people. I was told by one of them that it can take 5 years for the brain to heal from this type of “chemical spill.” While umcommon, I believe it. I hope I’m not one of them.

      • Anonymous said:

        I’ve wondered about the water thing too. My jerks have worsened the last week, out of the blue, and it’s also been very hot here. I read somewhere that drinking plenty of water can help keep cortisol levels in check. High temperatures can also cause cortisol levels to rise. Mark, have you tried drinking more water and seen any results?

      • Anonymous said:

        I forgot to mention that I also suffer from hyperhidrosis, so I figure that would probably make dehydration more of an issue for me.

  10. Anyone heard of Pyrrole Disorder? Someone mentioned it.
    http://www.vitalityandwellness.com.au/pyrrole-disorder

    • Michelle said:

      Hi CK, yes it was me who mentioned it. I suspect it may play a factor, at least for me. A lot of the symptoms fit me to a T. It apparently depletes B6 and Zinc. I haven’t tried taking zinc at all but the P5P makes a huge difference. I wonder if this is what makes us possibly deficient in B6 or P5P because other articles I’ve read said it’s basically like a disorder that causes your liver to be unable to convert B6 to P5P. Here’s a test for common symptoms that fit.

      The following includes the most common symptoms associated with the condition Pyroluria. If you answer “yes” to 15 or more of these then further testing may be worthwhile:

      PYROLURIA QUESTIONNAIRE

      1. Little or no dream recall -recently yes

      2. White spots on finger nails- yes

      3. Poor morning appetite +/- tendency to skip breakfast- yes

      4. Morning nausea- no

      5. Pale skin +/- poor tanning +/- burn easy in sun- no

      6. Sensitivity to bright light- yes

      7. Hypersensitive to loud noises- yes

      8. Reading difficulties (e.g. dyslexia)- no

      9. Poor ability to cope with stress- yes

      10.Mood swings or temper outbursts- yes

      11.Histrionic (dramatic) tendency- no

      12.Argumentative/enjoy argument- no

      13.New situations or changes in routine (i.e., traveling) particularly stressful- yes

      14.Much higher capability and alertness in the evening, compared to mornings -yes

      15.Poor short term memory- yes

      16.Abnormal body fat distribution- no

      17.Belong to an all-girl family with look-alike sisters- no

      18.Dry skin- yes

      19.Anxiousness- no

      20.Reaching puberty later than normal- no

      21.Difficulty digesting, a dislike of protein or a history of vegetarianism- no

      22.Tendency toward being a loner and/or avoiding larger groups of people- yes

      23.Stretch marks on skin- yes

      24.Poor sense of smell or taste- no

      25.Feel very uncomfortable with strangers- yes

      26.Frequently experience fatigue- yes

      27.A tendency to overreact to tranquilizers, barbiturates, alcohol or other drugs (in other words, a little produces a powerful response)- no

      28.A tendency toward anemia- no

      29.History of mental illness or alcoholism in family- yes

      30.Easily upset by criticism- yes

      31.Sweet smell (fruity odor) to breath or sweat when ill or stressed- no

      32.Prone to acne, eczema or psoriasis- no

      33.A tendency toward feeling anxious, fearful and carrying lifelong inner tension- yes

      34.Difficulty recalling past events or people- no

      35.Bouts of depression or nervous exhaustion- yes

      36.Prone to frequent colds or infections- yes

      • You must be my long lost twin. Pretty much spot on with thr yes’..

      • Just a note that clonazepam will stop my hypnic jerks but I have to take a high dose and after taking it for 3 years for treatment of hypnic jerks I was noticing lots of muscle twitching, dizziness, frequent urination, stomach pain…and other weird symptoms that I didn’t realize were side affects until I tried to taper off. Even on a slow taper the withdrawal was horrible. No ability to sleep, seizure type jerking, breathless, tachycardia, high blood pressure, tinnitus, no appetite…since then I’ve tried Keppra, Ambien, Flexiril, Xanax & Zoloft without success either because of side effects or just didnt help. Recently started Gabapentin 300 mg at night. (Anything less does not help) I also take SloFe Iron, CoQ10, Vitamin D, and Manesium. I am able to get some sleep and very few side affects so far. I do keep clonazepam .5 mg as a rescue if needed but try like hell not to go there. I cannot sleep at all unmedicated since the onset of hynic jerks. My sleep studies don’t show apnea or seizures. This blog is extremely helpful. Thanks to all who post. I am going to try the P5P and Magnesium/Taurine combo and see what happens. Jessica and Mark have you tried that yet? The clonazepam withdraw hell is real. Unfortunately I can’t delete it completely until I find something that works consistantly. At least I’m on a lower dose and only need it very occasionally as of late. Please keep updating! Maybe someone will find the key to this.

      • Jessica said:

        Lisa- how long have you been off? How much sleep do you get? My sorry is so long and detailed that I won’t get into it, but the whole 10 months off really had been a living hell with trying drugs and not knowing if I will ever sleep normally again. I have not tried p5p, but all b vitamins make my symptoms worse so i hesitate to try it. Magnesium does not work for me. I haven’t tried taurine… But I think I have tried most everything else. The only thing that helps me sleep right now is mirtazipine. Another lesser evil drug that might be keeping me stuck.

      • P5p does make me tired and does seem to work . But if I take it every night seems to be less effective almost like to much builds up in your system .

      • Mark – Thx. Good to know. What do you currently treat it with?

    • Michelle said:

      I’ve also been reading about overmethylation and undermethylation which seems to be categorized together with pyrrole disorder too. Interestingly, P5P is one supplement that I’ve seen listed as a benefit for all 3 of these issues but it is the only one that was common to all 3. Undermethylation and overmethylation are both helped by a lot of supplements that do opposite things as they are opposite disorders and they require more than one supplement to fix by the looks of it. I’m still trying to understand overmethylation and undermethylation and don’t quite understand it yet so hard for me to explain here. I seem to have some symptoms of both but you can’t have both so I’m a bit confused…I seem to fit more with overmethylation though from what I can tell.

      • Hi Michelle,
        Thanks and I will look into it further. I just wished P5P worked for me. My jerks have settled a little. It’s the head twitches, noises, thumps that seem to come about. Did you find you had to use it for sometime before it worked.? Also, I remember you mention gabapentin helps the jerks, how much do you take?

      • Gabapentin made my jerks much worse but I loved it during the day FYI. This affliction is nuts .

      • Michelle said:

        CK I only took P5P for a week before I noticed a change. Gabapentin seems to help for everything on the bad days when P5P just doesn’t seem to be enough. My doctor told me to take 100mgs 3 times a day to start and work up to 900 mgs 3 times a day. I did it initially but then discovered P5P and didn’t need it anymore except sometimes when things were bad. Now if I find I need it I take 100-200 mgs at bedtime depending how bad things are and that’s all I need.

        Mark what do you mean gabapentin worked for you during the day? Too bad it doesn’t help you at all…unfortunately this stuff is different for everyone and hard to pinpoint causes and things that work.

        Here’s some info on undermthylation vs overmethylations for anyone interested: http://mentalhealthdaily.com/2015/03/21/undermethylation-vs-overmethylation-causes-symptoms-treatments/

        I have a lot of symptoms in the overmethylation category except no mental health symptoms of obsessions, paranoia or hallucinations. But I also wonder, how long and how bad does something get before you could potentially develop those issues? Or maybe different people don’t develop some of them at all. I like that they offer suggestions for supplements that help.

        I also suspect heavy metal toxicity (mercury fillings, copper excess, etc) could cause some of these issues. I have a consultation in a couple of days to see about having my amalgam fillings safely removed.

        All of these issues mentioned above contribute to neurological problems so I’m just trying what I can to knock them out one by one in hopes of finding a definitive answer. P5P helps but it isn’t an answer in and of itself—it’s not a cure, just helps prevent some of the issues I have.

      • Thanks Michelle, mine is so hit and miss. Sometimes I get to sleep and sometimes I have problems getting to sleep. I can’t work it out. I know once I’m up, in the early hours the twitches are more ongoing. I’ve had nights in a row the last month where I sleep without a twitch and then nights when they don’t stop. I’m sure it’s similar pattern with most. I’m definitely undermethylation, according to the article. Last night didn’t take anything twitched for 10min then slept ok for 4.5hrs. I’m hoping and people like Jessica mention they come in waves, so I pray. I have take gabapentin like yourself when needed and see how it goes. Dr did say only 100mg.

      • Gabapentin made me less anxious during the day than anything I’ve ever taken . I felt great . Happy . Almost joyous . Can’t even describe it . I never did illegal drugs ever buy I felt high as a kite . I went from depressed or irritable to a different person . Calm . Charming . Relaxed on and on . I’ll be damned ifnthem didn’t make my jerks 100 times worse . Now go figure . If it anxiety should have worked . My legs jerked so hard they almost hit me in the face . I wish I could take that drug the rest of my life if I didn’t have this sleep issue .

      • Michelle said:

        Oh, one more reason I would consider the undermethylation/overmethylation thing is because of what it says how about how each responds to benzos, SSRI’s and antihistamines. I know benzos seem to help me somewhat (although I’m scared to take them) but don’t help Jessica and actually cause adverse reactions in her. So I found that interesting that this differentiates between categories like that.

    • I’ve done 2 tapers from clonazepam. 1 slow and 1 even slower. I guess I’m at the point where I think some of the withdraw/changes might be permanent. My hypnic jerks came on one day straight out of the blue. I had a loud clap sound in my head and feeling like my body was struck by lightning when I was just about to sleep. I thought I had a stroke or something so I went to the ER. They prescribed an SSRI & clonazepam. Lots of tests since then with nothing very conclusive. I was anemic for awhile but not now. Ever since that initial episode I can’t get past the severe jerks that happen just as I’m transitioning to deeper sleep because they wake me up. Every single time. It’s not hit or miss. It’s every single time day or night. SSRI’s seem to have the opposite affect on me. They make me have anxiety for some reason. The many supplements I’ve tried do not help. Melatonin makes it worse. B vitamins also make it worse however I think P5P might be different from the info Jessica provided. I’m going to at least try. Maybe the mirtazapine too if I can get my doc on board. I was completely off clonazepam for 10 weeks. I cried like a baby when I had to take a dose. I know when I am at my wits end with sleeplessness though and if I use it as a rescue it is an absolute crisis. I keep hoping someone will figure this out. Meanwhile I’m trying to live and work as functionally as possible like all of us. I am so thankful for the support and information here. Also all the research that’s been done and shared. I wish I could contribute more. I will post about the P5P. I always get my hopes up and I hate the disappointment if it doesn’t work.

      • Jessica said:

        Lisa- it sounds like your jerks started before clonazepam, or just the thunder clap sound? How long had this been happening to you?

      • Jessica – I was not on any medication before the thunder clap & hynic jerk happened. The two things happened together. It was the week after it started the Dr prescribed Celexa (SSRI) & clonazepam. After I got off the clonazepam the jerks were at first horrifyingly worse. Then they returned to pre clonazepam which is also too debilitating to sleep so I’ve been on this search for something else to control it. Now I have these other symptoms which I believe are from prolonged clonazepam treatment. Also I think I misspoke. It was Michelle that suggested P5P although she said her hypnic jerks might be related to a night time breathing issue. I never had that. Sometimes during the day now I feel like I’m hyperventilating or cant get enough air but I don’t have sleep apnea or anything. I think it’s from the clonazepam anxiety. I’m sure you know what I mean.

      • Jessica said:

        Lisa,

        Yes, I had severe breathlessness for 3 months after stopping clonazepam. Many other symptoms on top of it. How is your pulse? I’m so sorry that this came out of the blue for you. What a strange thing to happen without an unknown cause. Hopefully you can sort out why its happening and go from there. Hopefully its just a mineral deficiency or toxic metal exposure? I met a guy online who had his amalgam fillings taken out and his jerks stopped. Oh, did you take any antibiotics prior to to your jerks? These are often the culprit too.

      • Jessica – My pulse is too high. They had me wear a heart monitor because of it. My blood pressure is also high side. I had all my metal fillings removed last year. No help. They have suggested blood pressure medication but I’m reluctant hoping it will resolve with time. I think once you start regulating with meds it’s hard to go back. I have taken some of the antibiotics that people think may be the culprit but nothing while or shortly before the event. I did have the flu pretty bad but was pretty much on the mend from that when it happened. It is bizarre. I had some stressful life events and a surgery that year but thought I was handling things ok. Not like nervous breakdown or anything. How many hours are you sleeping? Are you taking the mirtazapine only right now?

      • If you have high blood pressure you better get in meds tomorrow . Called the silent killer for a reason . Or if you are over weight lose it fast .

      • Michelle said:

        I found an interesting article that connects a lot of what I’ve been thinking as culprits of the issues with sleep jerking and twitches etc. I previously mentioned the methylation process, heavy metals, benzo withdrawal and neurotransmitters, especially GABA, as being connected somehow to these issues. This article actually links them all together and explains the process of what happens. Maybe the key to figuring this all out.

        https://www.alternativetomeds.com/articles/benzodiazepine-withdrawal-and-heavy-metal-toxicity/

      • Good find Michelle, very interesting.

      • Thanks Michelle – Do you think
        chelation is something a person can do at home or do you have to go to a treatment center? I really appreciate the work you put into researching this. Finding something to resolve this or treat it naturally would be so geat. Very good articles. Thanks again.

      • Michelle said:

        Hey Lisa,

        On the chelation group I am part of on Facebook everyone is doing the chelation on their own at home. There are a bunch of recommended supplements to help chelate heavy metals, specifically mercury, from your body. You can do a search for Andrew Cutlers book for more info or check out the FB group I mentioned. It’s basically like a support group where people can ask questions etc. I haven’t started chelation because you have to remove your amalgams first so I haven’t read the book yet regarding which supplements to take, when, how much etc. It will take me 2 years to remove all the amalgams first because my insurance only covers a certain amount per year but I will definitely be chelating afterwards.

      • Jessica said:

        Hi everyone-

        In my desperate attempt to find an immediate way out of this hell, I’ve researched alternative therapies raging from sauna detox to vagus nerve stimulation. Strangely, I have turned on the tv to watch the doctors about 10 times in the last 10 months and 3 of those times I tuned into the same episode. Today it was on again and I’m taking it as a sign to call the doctor that performs this treatment: stellate ganglion nerve block. Badixally, this treatment has been proven to help people with ptsd, whixh i believe is manifests in a cery similar way to benzo withdrawal. in fact, i went to the er once with my symptoms and the ex army doc told me that the only cases like mine were those of soldiers who had witnessed horror. Anyway, this treatment seems to help 70% of people experiencing severe anxiety due to ptsd. Perhaps it is useful to ALL anxious people, including some of us here who experience these jerks from wd and normal anxiety. A shot in the dark, I know. But I am going to call the dr lipovs office in Chicago tomorrow and see if I can get a consult.

        Here is an article I found:

        http://articles.chicagotribune.com/2010-04-07/news/ct-x-n-health-ptds-0407-20100407_1_ptsd-dr-eugene-lipov-advanced-pain-centers

      • Wow. Let us know what you find out. Very interesting.

      • Mark – Thanks for the comment. My BP is on the marginal high side which is weird because before and during clonazepam treatment it was always normal. I dont know if the change is from getting off clonazepam or maybe because of the anti seizure meds that I take now or just high BP out of the blue? No weight problem. I’m relatively active. Try to eat healthy. I don’t get it.

      • Michelle said:

        Hey Lisa,

        Just wanted to mention, removing amalgam fillings in itself does not always help people. Heavy metals (such as mercury) can accumulate in the brain and need to be chelated from the body. I have been reading a lot about it and have joined a group on facebook called “Andy Cutler Chelation Think Tank”. There are a lot of people on there going through the process of chelation after having amalgam fillings removed. Also removal, if done improperly can also cause even more problems. Most dentists don’t go through all the safety protocols for removing amalgams which can cause even more mercury poisoning. I just had a consultation with a biological dentist for amalgam removal. They provide you separate oxygen so you do not end up breathing in particles or more mercury vapour, they use a dental dam to prevent swallowing or recontamination, they use safe disposal techniques and they remove the fillings in large chunks instead of drilling them out like most regular dentists will do. If your dentist didn’t follow these protocols it could have made things worse for you. It’s also possible that you are one of those people who have a slower detoxifying system and therefore your body has more difficulty getting rid of heavy metals even after exposure. In which case you would need to chelate after removing the. I have a LOT of them and they are very large. The dentist told me I will need 4 crowns on 4 teeth after removal because 4 of my teeth have 2 large fillings on each tooth, and another 3 fillings will just be filled with composite fillings. That’s 7 fillings in total which is a huge amount of mercury to have in my mouth. I have good coverage for removing them but I plan to get the book from Andrew Cutler on how to properly chelate with supplements and things to avoid while chelating. He is in expert in chelation of mercury. Just thought it might be something you could look into as well.

        As far as medications causing twitching. The biggest relation is usually benzos and SSRI’s. Serotonin Syndrome is a definite possible cause for some people.

        “There is a well-documented, logical connection between SSRIs and muscle twitches.

        In addition to regulating mood, the neurotransmitter serotonin plays a role in muscle control. It’s serotonin that temporarily paralyzes (or should paralyze) limb movement during the R.E.M. stage of sleep. People (and animals) who suffer from R.E.M. Behavior Disorder physically act out their dreams on account of a glitch in their serotonergic systems.

        “There’s no question that there’s a connection there,” according to Princeton University neuroscientist and psychologist Barry Jacobs, who’s studied brain serotonin levels and muscle movement for years. “There’s a strong relationship between muscle movement and elevation of serotonin.”

        When brain serotonin levels are too high, typically from taking more than one serotonin-boosting drug (e.g., SSRIs and triptans), patients can develop Serotonin Syndrome. Both muscle spasms and overactive reflexes are classic symptoms.

        From the case study, it’s not clear if the doctors explored Serotonin Syndrome as a possibility, but it seems strange that they considered the SSRI-jerk connection novel. “Escitalopram-induced hypnic jerks,” they wrote, “is a rare, but unique side effect that clinical psychiatrists need to be cognizant of.”

        In my case, mine started out of the blue after vacation in Thailand. I had issues first with shortness of breath, then adrenaline rushes at sleep onset, and later twitching and convulsions at sleep onset. Gabapentin helped but I was wary of medications so tried to figure out why gabapentin helped and found it increases gaba in the brain. P5P is a gaba precursor so I started taking it, and taurine, instead of the gabapentin and it has made a huge difference for me. Of course everyone is different so it’s important to do your own research, try different things and find out what works for you. I prefer the natural route as even when medications help they can have unknown long term implications or side effects. I also got diagnosed with mild sleep apnea but I believe the sleep apnea is a result of whatever else is going on in my brain as I have never snored or had an issue with stopping breathing before and the diagnosis came at the same time all this other stuff started.

      • Woo else has the urge to urinate all the time also?

      • Anonymous said:

        I don’t feel like I have an excessive urge to urinate, but I just came across an article about Cushing’s syndrome and it lists frequent urination as one of the symptoms. You may want to give it a look http://healthline.com/health/cushing-syndrome#Overview1
        It says that Cushing’s syndrome occurs due to abnormally high levels of the hormone cortisol.

      • Anonymous said:

        Michelle, I read your post, and I’m wondering if all the msg in the thai food is what triggered your jerks and adrenaline rushes, since glutamate affects gaba levels. And thank you for all of the info, it’s very much appreciated.

      • Michelle said:

        Anonymous that makes a lot of sense! I never thought about MSG in Thai food. I knew the Chinese use it but didn’t really think Thai’s also use it, but after you said that I googled and they referred to it as “Thailand’s ketchup” because it is used in huge amounts in almost everything. That’s crazy! Definitely a possibility. Although I had already explored the glutamate connection and have been taking glutamine, but don’t really notice a difference from it. But I wonder if in addition to raising glutamate if it could also lower GABA because everything that I have taken that has helped me has all related to GABA. Anyways, thanks for the suggestion. I couldn’t figure out how I could spend a month in Thailand, feel great, come back and suddenly develop all these issues almost immediately after returning. I thought maybe the jetlag could have had something to do with it cuz I had to do some major flipping of hours and spent a long time awake coming back. But MSG makes more sense to me.

      • Lisa; FYI regarding a comment of yours from yesterday. I remember reading a patient review on clonazepam in Drugs.com. A lady there said that she was prescribed clonazepam only for the purpose of keeping her blood pressure down and said how well it worked for her.

        And sorry, I haven’t read all your comments but had you been dealing with ongoing sleep deprivation prior to the sudden thunderclap noise? I’ve dealt with the head noise off and on too, sometimes right in unison with jerking awake, just as I’m starting to drop off. I’ve seen them referred to as sleep starts. First time I experienced that was 3 yrs ago while taking tramadol pain medication. Took the recommended dose but it was more than I could handle. The next time was months later when I tried some magnesium glycinate and from there on, it gradually got worse. To me they are abrupt snapping or popping sounds, sometimes they get increasingly louder.

        I’m still taking a light dose of clonazepam but like most here, don’t like being on that.
        Does give me some relief for now and my sleep doctor has no problem with it. I have less of the head noise and jerks since starting cpap.

      • Hi Sylvia – Thanks for the input. Maybe the clonazepam was helping to keep my blood pressure down. It started to sky rocket when I switched to Keppra and Zoloft. Also yes I was having trouble sleeping before the thunder clap/hypnic jerks started.

      • Anonymous said:

        Michelle,
        I think that glutamate does actually lower gaba levels. The reason I mentioned that it could have been the msg is because it seems like msg worsens my twitching and jerks. Have you tried taking NAC? Someone posted on here a couple of times about it and they said it lowers glutamate levels and that it was helping them. They were taking a pretty high amount from what I recall, you might want to search around in the posts on here to see if you can find the dosage if you’re interested. Also, I know you posted about how antidepressants can cause jerks. My jerks started after I stopped taking an antidepressant and I’ve researched the reason for this a lot, but I’m still clueless as to what the cause of the jerks and twitches could be for me. So, I was just curious if you had ever read a reason why stopping an antidepressant would cause jerks or if you had a theory about it that you could share. Any input would be greatly appreciated and it seems like you have done a lot of research, which I greatly appreciate you sharing with us also. I don’t know if an antidepressant could have effected my gaba at all, but my theories include either I have too much serotonin, too little serotonin, or that low dopamine could be the cause due to a rise in serotonin levels. Thanks!

      • Please try drinking lots of water for one week and get back to me. Dead serious. Take a few drinks right as you get into bed.

      • Michelle said:

        Hey anon,

        I have never tried NAC. So far my jerks and twitching are under control. I take P5P and taurine daily in high doses and recently started pharmagaba and that seems to have everything under control. I sleep pretty good now and haven’t had any twitching or convulsion-like movement during my sleep in weeks. I started the pharmagaba because I was having some weird daytime stuff that had developed. Strange feelings in my head, sudden lightheadedness that would come on out of nowhere, etc. That seems to have gone away as well. I still have a weird feeling in my stomach that I used to get just before I would get twitching, but I don’t get the twitching after it anymore. I will look into NAC as your theory that this all started because of msg makes a lot of sense to me. So anything that will continue to help me is worth it. Yesterday when I was falling asleep I got the weird electrical zaps down my spine again, but no twitching. I don’t know why they suddenly reappeared but I was still able to fall asleep. I debated taking gabapentin again if they caused me any trouble, but didn’t need to.

        As far as the serotonin and antidepressants, my personal opinion is that anyone who develops this after taking antidepressants has a serotonin related issue, as you said. Serotonin Syndrome is one possibility. It’s when your serotonin is too high. From the research I have done, I have found that this muscle twitching issue and “brain zaps” (feeling of electrical sensations zapping your brain or spine) can develop during or after use of SSRI’s, the drug MDMA (or ecstasy), and the supplement 5HTP. All 3 of these either raise serotonin levels or prevent the re-uptake of serotonin in the brain. Preventing re-uptake (such as what SSRI’s do) means instead of the brain reabsorbing the serotonin, the transmitters are blocked and the serotonin can float around a little longer, thus making you feel happier instead of depressed. Too much serotonin leads to serotonin syndrome. I am curious if by taking something that blocks the re-uptake of serotonin and then stopping it, perhaps there is some kind of long term damage that is done that prevents the brain from properly reabsorbing serotonin or causes the brain to produce more serotonin.

        In trying to figure out what was causing my issues I started with cortisol and adrenaline and when supplements for those didn’t make a difference I moved to looking at the various neurotransmitters. I first thought it was a serotonin issue but found no change in taking supplements for serotonin. Then I tried supps for dopamine and also found no difference. And eventually I looked at glutamate/glutamine, and finally GABA. Supplements that increase GABA production have made the most difference for me. In some of my research on serotonin I also found serotonin has the ability to modify the release of GABA and glutamate as well. In some cases it can actually increase glutamate, and the balance between whether serotonin affects the release of GABA or glutamate is a fine line. Serotonin can also inhibit the release of dopamine as well which would explain why people sometimes feel numb or emotionless when taking SSRI’s.

        This is why I am not a fan of taking medications even if they seem to be working. Because as much studying and research as doctors and scientists do, overall they still know very little about the brain and how it operates. The neurotransmitters have a zillion different functions, have the ability to effect each other, and we also have a bunch of different types of receptors in different brain areas for different neurotransmitters that work on different functions in the body. We aren’t even close to understanding them all and exactly how they work. Then we get prescribed these drugs that doctors say will help, but in reality we still don’t know exactly how these drugs help, or why they help some people and not others, or why they cause major side effects in some people and not others. We have no way of measuring NT levels. So taking medications is always a shot in the dark, and also a risk on some level because we never know how those drugs will affect us specifically or what they will specifically do or cause. For example, I found gabapentin helped me, but I didn’t know why. When I googled the mechanism of action for gabapentin, what I found was “doctors don’t know WHY gabapentin helps for this or that, or what it’s mechanism of action in the brain is, but they BELIEVE it works on the gaba receptors.” That’s pretty generalized. It doesn’t tell me how it works on gaba recptors, if it increases gaba, reduces gaba reuptake, or if it has potential to affect any other NT’s. So I started looking at supplements that will naturally increase gaba production. At least they are things the body naturally uses as opposed to foreign substances that we have no way of knowing exactly what they do.

        So going with the theory of excess serotonin, you could try taking gaba supplements like P5P, pharmagaba (NOT just gaba as it’s synthetic and doesn’t work) and taurine since gaba is inhibitory and could counteract excitatory effects and help your body, nerves, etc to relax. Or you could try taking serotonin antagonists such as panax ginseng and vitex. Incidentally I also take tryptophan because I noticed in “experiments” with Serotonin supplements that tryptophan actually made me feel a bit better emotionally even though it had no effect on my sleep twitching and convulsions.

        Hope this helps.

      • So much great info Michelle. Could you please post your current dosage of each supplement and how many times a day. P5P, Taurine, Pharmagaba, and Tryptophan. Also do you need a prescription for pharmagaba? How do you get it? Do you still take the magnesium taurine or just taurine by itself? I would really like to try your exact routine. Many thanks.

      • Michelle said:

        Hey Lisa,

        Yes I still take glutamine as well.I take I took magnesium taurine at first but couldn’t find it last time so just bought them separately- it’s the same thing only in 1 they are combined and the other I take each separately.

        A breakdown of what I take:

        P5P- 2x 50mg both morning and night
        Glutamine: 2x 500 mg caps both morning and night
        Pharmagaba 2x 100 mg caps morning and night
        Taurine: 4 x 675 mg caps morning
        Magnesium Citrate: 2 100 mg caps morning
        Potassium 3x 99mg caps morning
        Tryptophan: 1x 1000 mg cap before bed

        I buy the pharmagaba online since it doesn’t seem as easy to find in stores. The brand is Stress Relax Pharmagaba from Natural Factors. Also some people find P5P exhausts them during the day so it might be best to start with a smaller dose and work your way up. I also take a supplement as needed for sleep. I think it’s called OptiSleep and has a combo of (I think) tryptophan, pharmagaba, valerian, hops and passionflower….it works pretty good when I’m having trouble sleeping.

      • Hi Michelle, when you take gabapentin, when needed how much are you taking.?i ended up taking 100mg gabapentin and 3mg Zopiclone last night. First time for gabapentin, as afterr starting P5P and gaba again ( compounded) they both did not help with the twitching last night that went on forever and it was the first time I was back on P5P and gaba to see and had the worst night. . I am honestly not sure why, but P5P and gaba make things worse. It is so crazy. I might try P5P on its own again, but I do remember it didn’t do much back then (so upsetting).

      • Ck – Just wanted to tell you that I take 300 mg gabapentin every night and still have to use klonopin at least twice a week. Gabapentin does not stop my sleep starts but I think it allows me to stay in deep sleep longer usually 5-6 hours. I have noticed heart fluttering and palpitation with it though. So frustrating. I haven’t tried all the other supplements though.

      • Thanks Lisa, I am so up and down and people talk about waves of this crap. I hope to use it on a needed basis, but as you know after so many hours of sleep starts you end up having enough.

      • Gaba and gabapentin sent my jerks off the chart . Even though gabapentin during the day made me feel so happy . Last night I took 1 mg klonopin and 3 mg Lunesta as usual . Woke up with big jerk got pissed took another 1mg klonopin woke up again got really pissed took 10 mg valume . If I have to take enough to kill a horse I will . Damn the addiction . They do go in waves also . I had none for like a week . As ice stated drinking water before bed may be helping .

      • Very weird how gabapentin works for some and not others. That’s a lot of meds. I guess whatever it takes. Why don’t you stay on zoloft wasn’t that helping somewhat

      • I agree. This really sux. Maybe we should all try Michelle’s exact formula? I have a question though. If the supplements work, does that mean our bodies have a deficiency causing this that will go away? Or did our bodies lose the ability to produce a sleep state correctly forever? Sometimes I think of it like my body is a car and the transmission went out. No 1st or 2nd gear. Can’t shift down to stop and go to sleep. I wonder who the best sleep Dr in the world is? It seems like sleep Dr’s mostly focus on sleep apnea. I think it could be both a neurology and a hematology issue in my case. No Dr I’ve come across really wants to dig into it. Has anyone ever had IVIF or IVIG treatment? I can’t remember the exact name but basically they think your body is attacking itself so they take out your blood and spin out the antibodies and put it back in. It’s a plasma treatment.

      • Michelle said:

        Lisa I absolutely 100% believe our bodies and brains have the ability to heal if given the right things. Our diets are high in foreign chemicals, pesticides, antibiotics through the meats we eat, heavy metals and poisons like mercury found in fish, depleted minerals and vitamins in soils where our foods are grown, etc. That is why I have spent so much time researching to figure out what the issue could be for me.

        Not everyone is going to respond the same to the supplements I take. It all depends on what the issue is for them, as this definitely can be caused by more than one thing, but I definitely believe it has to do with excitatory vs inhibitory neurotransmitters and possible inflammation in the brain caused by some or all of the above mentioned things.

        I am trying to cover multiple bases with the supplements I take.

        Glutamine- inhibitory NT that counteracts glutamate which is excitatory and potentially inflammatory in large amounts
        P5P, taurine, pharma gaba- support/boost gaba production (inhibitory)
        Omega 3, Cold pressed virgin coconut oil- protective properties for the brain
        Glutamine- Counteracts Glutamate (inhibitory)
        Sleep Optimizer (Got the name wrong before) promotes sleep, relaxing and inhibitory properties of ingredients
        L-Tryptophan- serotonin precursor, also promotes sleep

        I’ve talked a lot aboput gaba but I haven’t mentioned much abiout tryptophan. Initially before I tried supplements to support gaba I tried supps for serotonin. 5HTP and tryptophan are 2 of them. 5HTP is known to cause jerks in some people and seemed to worsen mine so I quickly ditched that one, but tryptophan seemed to help me feel more relaxed and happier. One thing I didn’t mention in all of these sleep issues is my mood. I have always been a super patient and calm person but I got to where I was impatient, irritable and angry all the time. I had road rage in traffic during a 7 minute commute to work almost daily. I was always pissed off. At work I was snapping at people- I’m a social worker and this does not bode well for my profession. I had zero patience and was constantly pissed off. It started out as slight irritability and just worsened from there. I isolated myself from people as much as possible because being around people, in any setting, would just piss me off. Taking tryptophan helped take that edge off and made me feel calmer and happier. So I have continued with it. When I started with the supplements that help boost gaba I saw even more improvement in my mood as well. So I think everything I am taking is working together. Here’s a good read about tryptophan: http://www.lifeextension.com/magazine/2013/5/better-brain-chemistry-with-tryptophan/page-01

      • Mark – It’s not addiction. It’s tolerance. Your not abusing it to get high. You are taking it to treat a disease. Unfortunately the drugs that work usually require higher doses for the same effect. I can’t go without sleep or suffering with extreme jumps for very long either. It fries my nerves and I get depressed. After all that I hope you got some sleep.

      • Michelle said:

        Hey CK, when I take gabapentin I take 100 mgs, sometimes 2 if things are super bad. I haven’t taken it now for about 3 weeks. I feel like something is helping, maybe the pharma gaba since I have started taking that not too long ago. I’m sorry the P5P isn’t helping. I had good and bad days on it but I stuck with it and added in pharma gaba. Also the glutamine could be helping as well cuz it counteracts effetcs of glutamate which could be an issue. Anonymous suggested NAC to counteract glutamate as well.

        All I know for sure is everything I am taking is to both boost calming neurotransmitters like gaba and glutamine and protect the brain. I forgot to mention I also take Omega 3’s and coconut oil daily as these are known to have protective properties for the brain. I am scared what could become of me after years if I didn’t take all this stuff…we have to protect and heal the brain in order to have good health for the body. I hope you have a change for the better,.

      • How many have tried NAC?

      • Michelle – Also do you still take Glutamine?

      • Anonymous said:

        How much water are you drinking?

      • Anon – Roughly 64 oz per day of just plain water. It doesn’t seem like water affects symptoms for me I don’t think.

      • Anonymous said:

        Lisa; Just curious, what is your hematology issue? Anything to do with your red blood cells being too small or too large? I think it’s under “MCV” on the blood test. My MCV has been close to out of range. Have you had your ferritin tested? I have/had well within normal range hemoglobin and iron, but ferritin was only 22, very low end of normal range. Now I think it relates to my sleep breathing issues.

      • A couple of times I had a full iron panel because initially my hemoglobin was too low and was anemic before surgery. Ferriten was 29 I think and I was on prescribed iron for about 6 months until my gastric couldn’t handle anymore. Ferritin was up to 60 at the highest and then dropped again after I stopped supplementing. I don’t know what it is now and I don’t know why it keeps going down so I started iron again with a gentler supplement. I will have to check my report on that red blood cell thing. Interesting. Also I think my immune system is over active. I have strong immune response to illness and allergies that’s why I mentioned the antibody problem/treatment. Why do you think yours is breathing related? Did you find a way to treat it successfully?

      • Anonymous said:

        Lisa; I took iron supplements for several mos. last year and it got my ferritin up to 44 last fall but haven’t had a blood test since. I did come across another posting on a sleep apnea board where a hemotoligist sent this woman to a sleep clinic, suspected sleep apnea due to size of red blood cells (in consistant; too small, too large) and turned out she had sleep apnea. After treatment, the red blood cell issue resolved. Anyway, it reminded me of my own blood tests from 2-3 yrs ago when I was trying then to find the cause of my insomnia and nerve issues, going from doctor to doctor.

        Also I think it was you asking about finding a good sleep doctor. There’s one who wrote the book; “Sound Sleep Sound Mind” by Barry Krakow, MD. I just bought it on Amazon and browsed through it today. People on the apnea say it’s the best book on sleep and insomnia that they’ve read. It’s about sleep breathing disorders and more. I saw on Dr. Krakow’s website that he accepts patients from out of state, believe his clinic is in New Mexico. Another book that looks good is; “Sleep Soundly Every Night, Feel Fantastic Every Day,” by Robert S. Rosenberg, DO, FCCP. By the way, this is “Sylvia” posting, I see now my name got dropped and I’m identified as Anonymous. I’ll have to re-enter my info.

      • When I first had this problem I think my Dr was hopeful that the anemia was causing it. I’ve had two sleep studies at different medical facilities the last one at Mayo Clinic. No breathing issues either time. I will look up the books. Thx.

      • I was the person that originally posted about using NAC to control my jerks. As I posted before, I took between 2-3 grams a night about 1 hour before bed, and I was able to sleep well after severe sleep loss to them for several months. My jerks were somewhat related to physical activity (the higher it was (distance running) the more I would jerk). Using NAC, I was able to return to running, increase my mileage considerably and still be jerk free.
        After about two years of treatment with NAC, I stopped it about 3 months ago. I am still 99% jerk free now and haven’t lost sleep to then for a long time.
        As an aside, related to others comments about the causes of the jerks, I was on benzodiazapines (clonazepam, diazepam, alprazolam, and zolpidem) at high dosages for about 4 years. The start of my jerks did not coincide with stopping those medications, though they may have been the impetuous that pushed me to eventually have them.

        Please ask if you have any questions.

      • What is nac ?

      • Milliquisthornblower – Do you need a prescription for it? Are there any side effects? How did you dose? Thx for the post.

      • Any particular brand?

      • I’m still missing what NAC is? SOrry

      • Michelle said:

        NAC is N-acetyl cysteine

      • Michelle- Have you tried this too?

      • Yes, NAC is N-Acetyl Cysteine and you don’t need a prescription for it. I tried a few different brands with no differences noticed between them. For most of the time, I used NOW brand just because it was inexpensive.
        As for side effects, I noticed that after about a year and half of use I would become extremely grumpy about 20-22 hours after my last dosage. It was a weird side effect that didn’t cause me much discomfort but made me unpleasant to be around. When I stopped the NAC it promptly went away. There were no other negative side effects that I noticed. On the positive side, it seemed to be very useful for also helping anxiety.

        Note that it took 2-3 weeks from when I started it at 2 -3 grams (2000-3000 mg) for the anti-jerk effects to build to their highest levels.

      • Did you have to taper up to that amount or just start there? How did you hear about NAC? Sounds promising. Seems like a lot but I’ll try just about anything at this point. Thx.

  11. Anonymous said:

    Mirtazapine increases norepinephrine, which is a stress hormone. Seems like that might be bad for the jerks. Also, tinnitus is caused by low serotonin levels and SSRIs can possibly treat it. Maybe low serotonin levels could be a trigger for the jerks also, since it seems like a few people on here are suffering from tinnitus along with the jerks and twitches.

    • Would people be willing to describe their sleep problem and how often they experience them currently.

      • Lisa; Here’s my sleep problem; My sleep is always fragmented and I seldom get a full night of sleep. My sleep transition started in early 2012, it went from a night here and there of only 5 hrs when I was used to the normal 6.5 to 7 hrs with one bathroom break every single night. Months later I started feeling sleepy in the daytime and actually fell asleep sitting at my computer after having slept all night. That went on for maybe 2 mos., never before been a daytime sleeper. Then that transitioned into suddenly longer sleep like 8.5 to 9 hrs with waking up briefly about every 2hrs for no apparent reason. Then suddenly in Aug, I went to this short interrupted sleep (never enough sleep) and always fragmented to various degrees.

        I’ve tried supplements, special diets, long walks, seeing doctors who tried the estrogen/progesterone hormones, sleeping pills, antidepressants. Trazadone and Lunesta didn’t work out so I didn’t take either for more than 3 weeks. I quickly built up tolerance and didn’t like the side effects. Bloodwork was always normal, I corrected my pre diabetis and low ferritin last year. Went through tests; ultra sound, CT scan, colonoscopy, endoscopy (for gastritis), and more. Nothing conclusive. In 2014 I could tell the sleep deprivation was affecting my nervous system as I suddenly started getting restless legs at night. Then this magnesium glycinate I tried triggered “sleep starts” every time I started to drop off; my hand, leg, finger, etc. would jerk me awake. Head noise also came about with the jerking. These attacks were intermittent but some nights real bad where I could sleep only 1-2 hrs all night, then following night much better with 6 hrs.

        Saw a neurologist in late 2014, he ran MRI on brain and neck, came back clear. He prescribes .5 to 1 mg clonazepam before bed which gave me much better relief than anything else. Took it sparingly all of last year, maybe 2-3x a week on average and sometimes only .25 mg. Just this year finally found out root cause for insomnia is most likely sleep apnea, diagnosed by overnight sleep study (tongue obstruction). It might also be UARS (my own speculation) since I had extensive orthodontic work as a teenager, 4 teeth plus wisdom teeth pulled before I was 20. I have a small jaw that receded over the years from the missing teeth. Look up UARS.

        I’ve posted here off and on since last March, I think most are on the previous page. Lisa, if your insomnia and neurology problems showed up just out of the blu like mine did, you might want to read up on UARS. Some researchers suggest that it very gradually turns into sleep apnea and it’s most commonly treated with cpap therapy. You’ve been through a sleep study, right? I’ve read that not all sleep clinics can pick up on UARS. Did you get a copy of your sleep study report? Mine shows a relatively low AHI of 10 and a high number of spontaneous arousals.

        So that’s my story. Right now I still use low dose clonazepam (gives me longer sleep on cpap) and believe cpap is slowly helping to calm my cns. I might also see a sleep dentist later this year.

      • Please answer this slyvia had most everything you have.

        Do you drink much water ? Please let me know. If not, drink a big glass right right in the morning . And from there make sure you get at least 2 more glasses rest of the day . Report back please.

      • Mark are yiu still on zoloft? I drink alot of water also close to 2 to 3litres a day.

      • Just got off Zoloft. Jerks stopped. May have not taken it long enough. Drinking water seems to have stopped them cold. Maybe just a coincidence.

      • Keep praying as that is good news for now.

      • Michelle said:

        That’s interesting Lisa. I have a really small mouth and have had a lot of teeth pulled due to overcrowding. I would love to get braces (even tho I’m 40 now) but can’t afford them right now. Almost considering getting them in Mexico cuz they are super cheap there.

        Anyways I had a sleep study done and had mild sleep apnea (4 AHI) but didn’t snore. I tried CPAP but it pumped my stomach full of air so bad that I had a severe stomach ache within an hour of wearing it so I tossed that idea pretty quick after trying it every day for a week and having the same thing happen every time. Plus I couldn’t fall asleep with it on! Drove me crazy and by the end of the week I wanted to toss the thing in a dumpster. My doctor referred me for a full sleep lab where they hook you up to every machine known to mankind and monitor everything while you sleep. I haven’t gone for it yet cuz I’m waiting to find out if my insurance covers it.

      • My sleep study showed 12 arousals per hour due to movement. No breathing disturbance.

      • Michelle; that was my posting about the braces and having sleep apnea. You say you had several teeth pulled but no braces. Well, you may have noticed that your other teeth partly moved into the space where the missing teeth were? Less teeth can make your jaw recede, making the inside of your mouth smaller, causing a smaller airway. Did your sleep report show a large number of spontaneous arousals? Not everyone with sleep apnea snores. Did you try the nasal pillow mask? For me it’s much easier to tolerate than the full face but I need a quality chin strap with it to help stop the mouth breathing. The first couple nights on cpap, I woke with my stomach hurting from swallowed air. But that resolved on its own when I switched from full face to nasal pillows. I still take a light dose of benzo to help me sleep with cpap. I’m very slowly trying to taper off or take it intermittently like I was before.

      • Michelle said:

        Sylvia sorry it gets confusing on here sometimes with who posted what lol Yes I definitely had some teeth move somewhat into the spaces where the pulled teeth were. My report showed very few arousals. I stopped breathing 5 times, and 4 is considered normal (sorry I said before my AHI was 4 but it was actually 5). So my belief is/was that whatever was causing the sleep jerking, sleep starts etc also caused me to stop breathing. I actually noticed when things were really bad that I would get a feeling of electrical zaps down my spine and depending where the electrical zaps stopped would determine what my body would do during sleep. If they stopped at my muscles I would twitch, if they stopped at my adrenal glands I’d get an adrenaline rush, and if the stopped at my throat/lungs I would stop breathing momentarily. When I have no issues with the sleep twitching I also have no issues with not breathing (from what I can tell without being hooked up to machines).

        The nasal pillow mask is what they gave me to try first. I hated it. I actually think a full face masked might have helped more for me, but the stomach aches were so bad I didn’t bother trying anything else. I just was so fed up after a week of trying cpap that I was not in a very good mood when I took it back to the sleep clinic and I told the lady there I was done with it and didn’t believe it would do anything for me. She basically just said ok and let me go. She didn’t have any other suggestions like trying a different mask or anything and she didn’t mention the possibility of the stomach ache problem resolving. So I just gave up on it. But like I said I don’t think it’s much of an issue when the sleep twitches are resolved.

  12. Mark; Yes I do drink lots of water (at least one liter of Smart water a day) and have done that for the last 3 yrs after an RN told me that living in a dry desert climate requires it. Have to taper off in the evening though or I’ll be up all night. How did the water help you?

    Do you have bladder pain? I talked to that nurse when visiting urgent care visit for bladder and uretha pain. They took a urine sample to check for UTI (came back negative) but she said I was dehydrated. Turned out the pain was from overgrowth of bad bacteria. It’s treated now with low dose of bioidentical estrogen to protect my bladder and keeps the pain away. A naturopath MD I saw last year told me that poor sleep can cause overgrowth of bad bacteria (candida overgrowth). I’ve also had a mild case of toenail fungus for quite a while.

    So did you have the orthodontic work too? I’ve come across some people on cpaptalk.com who talk about UARS, one just got a cpap machine prescription from an ENT after a sleep doctor dismissed her sleep disorders. She and others had braces for crowded teeth as children.

    Most on that forum have sleep apnea with sleep disorders other than chronic insomnia. They get too much sleep but feel exhausted, probably from low oxygen. Cpap helps some of them right away. My oxygen level is pretty normal.

  13. I Love CPAP not sure it is the problem though. I did have braces.

  14. Hi,
    I have those jerks only occasionaly now. There used to be a time when I was quite desperate too because of them.

    I’ m gonna list everything I’ve tried so far:
    Accupuncture – am still in therapy with a good acupuncturist who also prescribes me some Chinese herbals for that problem. It has been my number 1 helper.
    Reiki – a Japanese energetic therapy. It calms down the jerks. You can also learn some self- reiki and do it yourself when in bed. I found that it calms down the jerks and then I sleep.

    Along with those, I’ve been taking ASWAGANDHA (for stress) pills and also CATNIP capsules (also calms me down and the jerks subside). When I’m overly stressed, I also take Complex B vitamins for stress and INOSITOL (vitamine B8).

    Wish you luck and that you can sleep again.

    • Jessica- said:

      Ariane,

      Do you know what triggered yours? And how long ago? Acupuncture is one of the few things I haven’t tried yet.

    • Hi Ariane,
      What parts of the body is the accupuncturist working on. I know they can be specific and target certain areas. I tried accupuncture for months, it might ve helped but some days found they were worse.

  15. Hi Michelle
    Thanks for the info. I tried P5P on its own without Gaba and will advise. I took it last night and has some luck but to early to say. It definitely doesn’t make me sleepy so I can take one in the morning also. Will look into the rest. What brand tryptophan are you taking?

  16. Anonymous said:

    Based on my results using a cpap, I have noticed that I have far less apneas on nights where I have a lot of jerks. On my low to no jerk nights, I have far more apneas. The worst night of jerks I ever had, I ended up having zero apneas, and I did sleep off and on that night and finally got a pretty good stretch of sleep toward the morning hours. This is based on the results of my AHI (apnea/hypopnea index) readings which is the number of apneas or hypopneas I’m having per hour, that my cpap gives me each morning. It makes me think that the jerk might actually be produced when I first stop breathing, but before the ten seconds required for it to be considered or register as an apnea. It also makes me think that maybe it’s possible that the people who have the worst cases of jerks, might actually be jerking each and every time they stop breathing, but before the ten seconds required for it to qualify as an apnea, where others of us manage to sleep through some of their apneas without producing a jerk, and therefore the sleep apnea is able to be diagnosed during a sleep study.

  17. Hey Michelle

    I was interested in the progress of your hypnic jerk “disease”.
    For me the problems also started with shortness of breath, which continued into adrenaline rushes during sleep, which later transformed into these weird muscle twitches.

    A month ago I talked about chronic hyperventilation. Currently I am doing therapy to correct my breathing. I do not know if it is placebo or coincidence, but since I have improved my breathing the following has happened:

    (1) The twitches has become less aggressive and 80% of the days I am able to sleep through them.
    (2) I don’t have this problem every night anymore.
    (3) The majority of the nights, the muscle twitches has transformed back into adrenaline rushes and mini panic attacks.

    What I do know is that by chronically over-breathing, one can create a deficiency in Carbon dioxide.
    It is known that Carbon dioxide calms the nervous system. A reduction in Carbon dioxide and increased intake of oxygen activates the sympathetic nervous system (our fight- and flight system).
    My hypothesis is that, when we fall asleep our chemistry changes. Something happens to our brain waves, our breathing becomes calmer and our heart rate drops. I think, because our sympathetic nervous system is still on, we are much more sensitive to these changes, which causes our body to react upon it. There is nothing wrong with our muscles, it is just a panic attack.

    On another forum there was a man who also experienced panic attacks when falling asleep, he claimed the following:

    “I’ve experienced this myself when i had a bad patch of anxiety some years ago – i once went 5 days straight!
    i think drugs are the last thing you, or any of us, need
    you don’t have a temperature at the moment? sometimes viral infections can cause these kinds of symptoms
    the key to an easy transition into sleep is raising your CO2 level gently, just prior… CO2 is our natural tranquilizer – when we’ve been running on high stress for prolonged periods, the rapid transition into relatively higher CO2 as we fall asleep can cause a sudden jump, and often a panic response, as it’s such a rapid change in body chemistry and sometimes involves breath holding too.”

    The original post can be found on the uncommonforum under the title: “Having panic attacks that wake me up every time i doze off?”

    —–

    In any case:
    Just like any deficiency in our bodies, a deficiency in carbon dioxide can cause many problems. The main cause for this is over-breathing, as with each breath we lose carbon dioxide. Carbon dioxide is not just a waste gas! it is responsible for many bodily functions like relaxing the nervous system, blood vessels and maintaining the PH of the blood.

    It is scientifically proven that chronic hyperventilation syndrome can cause anxiety disorders, sleep apnea and even an increase in asthma symptoms.

    Unfortunately it is very hard to get the diagnosis, simply because hardly any of the symptoms you get from this syndrome is related to breathing.

    signs you are over breathing:
    (1) Cold hands and feet
    (2) Breathing through the mouth
    (3) Hear-able breathing
    (4) Frequently sighing/yawning
    (5) Breathing through the chest
    (6) Breathing more than 12 times per minute during rest

    People with chronic hyperventilation syndrome may also experience the following symptoms:
    (1) Anxious/nervous feeling for no reason
    (2) A pumped feeling in the belly
    (3) Frequent cold hands and feet
    (4) Light headed feeling
    (5) De-realization: a feeling that you are dreaming
    (6) Concentration problems and decrease in short-term memory.
    (7) Muscle cramps and tensed muscles especially in the fingers and arms
    (8) Shortness of breath
    (9) Feeling that you can’t take deep breaths
    (10) Heart palpitations and increased heart rate

    These are the most common symptoms, but as any other disease, not everyone experiences the same symptoms. The list of symptoms goes on forever.

    —–

    My problems started a year ago. For a few months I had a feeling of a lump in my throat. I panicked and went into a period of anxiety, because I thought it was a deadly disease I was having.
    A month later after I got this weird feeling, I started to develop breathing problems. At some moments during the day I experienced a feeling of shortness of breath. This later turned into, similarly to you, adrenaline rushes when falling asleep and later into muscle twitches.

    I am an asthmatic, but I have not experienced symptoms for approximately 10 years, until these weird symptoms arose.

    I have done many researches on different syndromes and diseases, but the feeling of a lump in the throat, the shortness of breath, and the increase in asthma symptoms has all led me to chronic hyperventilation syndrome. Moreover I have been a mouth breather for whole my life.

    Also, I have visited many other forums. The majority of people got these muscle twitches after a period of anxiety and stress. It is known that anxiety and stress causes chronic hyperventilation syndrome, as our breathing patterns drastically changes during these moments. I also think that everyone agrees that the jerks become more drastic during stress and anxiety.

    —–

    I have had these sleeping problems for a year now. I am no medical person or anything, I am just a curious student, which learned to do proper literature research at university. This past year I have been doing a lot of literature research on chronic hyperventilation.

    You mentioned in one of your post that you have mild sleep apnea. Sleep apnea according to Buteyko theory is a sign of over breathing. You breath too much during the day, the brain tries to stop you from losing any more carbon dioxide by stopping your breath for a few moments.

    I am wondering how is your breathing in general? I am trying to find a correlation between this weird sleeping disorder and over breathing. As your progress of this disease is similar to mine, I am really interested in your overall story.

    I am only 20 years old, and have a dream and passion I want to pursue. I am not planning to give up because of this stupid symptom.

    —–

    I suggest you look into some buteyko theory, perhaps there is really a correlation!
    Very sorry for the long post, but there is just so much I want to get off my chest. I am looking forward to your reply.

    • Hi Bryan2
      I agree with you. Mine started out of the blue 12 months ago ever since then my breathing has been my number one problem. I have mentioned many times that I experience shortness of breath and constant gasping for air. I find I cannot even hold my breath for more than 15 sec without having to feel like I’m suffocating. Even eating I feel like I have to take a deep breath in between. The symptoms you listed I pretty much have lump in throat, mouth breather all my life. It’s also interesting because my chiro mentioned buyteko breathing and I’ve just started looking into it and doing some of the techniques. I used to be into fitness and was able to swim under water for a long time. I would be lucky now to be able to do more than a few metres as I am always out of breadth. I always thought the meds brought on the problem. I don’t experience many panic attacks just the shortness of breath and my stomach sometimes looks like I swallowed a big balloon sometimes. I will be looking into this further and will update.

      • Our breathing is regulated by our respiratory centre in the brain. The brain is constantly monitoring the blood’s PH and the concentration of carbon dioxide.

        The feeling to breathe is creates because carbon dioxide levels has increased. NOT because we do not have enough oxygen ( although this can create the urge to breath, the brain is far less sensitive to oxygen levels, the majority of times breathing is regulated by CO2 levels )

        After prolonged periods of over breathing – often caused by stress. But also, which is in your case and mine, a very bad breathing manner. – the respiratory center adjust the breathing to low CO2 levels.
        This also explains why you cannot hold your breath for longer than 15 seconds. Simply because the respiratory center has become much more sensitive for CO2, and does not allow higher levels of it in the blood.

        I have a feeling that we are close to finding an answer to this weird stuff for many of us. Although it is difficult – stay positive!

      • Thanks Bryan2. You said your doing better with buyteko breathing? Is there anything else your doing? I haven’t done any exercise as worried it could make things worse and not sure if running will help also.

      • I recommend you buy the book: close your mouth by Patrick Mckeown and watch his videos about chronic hyperventilation and Buteyko.

        I don’t think breathing exercises will worsen the symptoms. you do need to be aware of cleansing reactions though. At certain moments your symptoms might get worse for a few days up to a week: this is a detoxification from the body according to buteyko theory.

        I am doing buteyko as well as another exercise I learned from my lung specialist.

        1. Gently breath out the air from the lungs
        2. Then inhale fully through the nose and fill up the lungs.
        3. Hold the breath.
        4. When getting the urge to breath ( often indicated by a push from the diaphragm ) gently blow out the air, as you were blowing out a candle.
        5. After the exhalation, wait some time until you breathe in again.
        6. When you feel an urge again to breathe in, gently breathe in through the nose (Don’t take a deep breath, your breathing should be gentle and through the nose.)

        The aim is to create a slight air hunger, which is exactly what we want as it trains the brain to accept higher levels of CO2 again.

        Wait for 60 seconds and repeat the steps 1 to 6 again. Do this 5 or 10 times with rests of 60 seconds in between.

        The exercise should not be stressful. You should not force it, but with a bit of practicing you will find the right spot. If done correctly you will feel slightly calmer and for me, my nose becomes very open and my hands and feets will warm up.

        I peform this exercise 2 or 3 times a day. When I wake up, before lunch and half an hour before I go to sleep. There should be enough rests between sessions (3 hours recommended) and you should peform this with an empty stomach.

        As for buteyko exercises. I mainly practice relaxed breathing and reduced breathing for 5 minutes whenever I feel my breathing is a bit odd (irregular, deep)
        Also one key rule for buteyko is to breath through the nose 24/7. After practicing these breathing excersises for a month now, breathing through the nose has become much easier for me.

        I am 80% certain that your lump in the throat feeling, shortness of breath and the pumped feeling in the belly is caused by over breathing. You will surely benefit from the exercises. Now I hope that the muscle twitching is caused by the same as your other symptoms.

        Hope this helps. I recommend you do some research on chronic hyperventilation and buteyko yourself to get a better understanding of your symptoms.

      • Hi Bryan2, I’ve been trying thr breathing and it’s helping me manage in someway the terrible shortness of breadth and gasping for air. I don’t know if it’s the cleansing or accupuncture I had yesterdsy(been 3 months since last one) but had one of the worst nights with the sleep starts, and twitches. I know some have said that accupuncture helps but I think it flares up my nervous system. I’m really hoping the breathing settles things and it is just a wave or my body adjusting.

      • Anonymous said:

        I am glad it kind of helps. Its hard to say, as fixing the breathing is a long process.
        On average people are able to recover in 3 to 4 months.

        It is important that you practice the exercises daily, otherwise you wont get the long term benefits from it.
        Also, If you are performing the breathing exercise that I commented, try to time how long you are able to hold the breath. You will see weekly improvements, which shows that your CO2 levels in the blood are rising.

        I started out with 45 seconds, now I am able to hold my breath for around 60.🙂

        Have you also done any blood tests? A vitamin D en vitamin B12 deficiency, as that also might cause weird problems.

      • Thanks Bryan2, yep done every bloody test possible. Cortisol, adrenaline, even crazy neuro ones for lupus. I’ve have a blood test for everything every 3 months. Only thing that has come back is that I’m hypoglycemic. I definitely will be doing the breathing exercises as it will help regardless . Im sure it’s going to be a long process. Are you on any meds also?

      • Hey CK

        Are you being treated for hypoglycemia?

        Along with chronic hyperventilation and hypothyroidism, hypoglycemia might also cause very weird symptoms as muscle spasms and dizziness etc. If not, I reccomemd you to do some research about that too. Symptoms are very similar and perhaps it is the hypoglycemia causing it, or both.

        The only medication I use are for controlling my asthma. I also take vitamin D pills, because there is not much sun in my country.

        Anyway I think it is a good thing to practice the breathing wether you are hypoglemic or not. Also it is important that you breathe through the nose, as mouth breathing you ventilate more and it’s bad for your overall health as air does not get filtered.

        Hope you see improvements soon! For me it took like a month with daily practice before I saw improvements.

      • That’s good Bryan2 that you don’t need meds. I was on and off with thr meds the last month as was having some luck sleeping, but decided to get accupuncture on Tuesday and things have gone downhill. I am hoping it will pass soon. I’m taking baclofen which helps and sometimes Zopiclone or gabapentin. I am managing the hypoglycemia through diet only. I’m trying to work out how to get my mouth the say shut when I fall asleep as I mouth breath all night. I will look into a chin strap if they are available. I’ve had sinus issues since I was a kid so breathing through the nose takes some effort but sticking to it now.

      • Chin strap don’t work get the full face air cuatro trust me

      • I don’t have cpap Mark. Just after something for sleep.

      • I had the same. My nose was chronically stuffed, which caused me to mouth breath. But this therapy really helps. Until 2 months ago I wasn’t able to breathe through the nose, now I am breathing 80% of the time through the nose.

        My tip is to watch YouTube video on buteyko: how to unstuff your nose.
        According to buteyko theory, a chronically stuffed nose (mostly without mucus) is a mechanism from the body to prevent you from losing anymore CO2.
        it takes time, but by raising CO2 levels breathing through the nose will get easier.🙂 have you bought the book yet?

      • Ive been watching all the buyteko videos. Been practising all the techniques and the clearing the nose. I have been on Nasonex for years which relieves nasal symptoms.

      • Ck; If I were you, I would try a chinstrap. The one I use is the “Halo” Chinstrap made by Breathewear, Inc. and I ordered it from cpap.com. It’s a stretchy material, adjustable with velcro, gently supports the chin. Didn’t take me long to get used to and eventually stopped issues I was having with my nasal pillow mask. Didn’t start working overnight but it does make a difference. Also, it helps to practice keeping your tongue right against the roof of your mouth all the time until it becomes habit.

        Some people recommend this product over a chinstrap to help stop the snoring; “Chin-Up Strip For Dry Mouth and Snoring Tan horseshoe shape #22230.” It’s sold by Walgreens but available only online.

      • Thanks Sylvia, I will look into it as I definitely need one to keep my mouth shut. I wake up every morning with the driest mouth and slight headache.

    • Michelle said:

      Hi Bryan,

      I’m not sure this is the case for me. Up until about 2.5 years ago I was a pack a day smoker, but have since quit. I never had any problems with my breathing when I was a smoker, which one would think if what you are saying is correct for me, I would have had huge breathing problems due to the C02 levels in cigarettes. Of course I had shortness of breath from smoking which was noticeable during exercise, but never noticed it at rest. After quitting smoking my breathing improved, as would be expected. So it doesn’t make sense to me that I would have no breathing issues as a smoker but suddenly develop breathing issues 2 years later as a non-smoker, because as a smoker my CO2 levels would have been high.

      However I wonder if this is a chicken and egg issue and could fit with what I have already found regarding neurotransmitters. I wonder if it’s possible that screwed up levels with NT’s could cause anxiety and breathing issues, and anxiety and breathing issues can be helped with deep focused breathing and somehow have a positive effect on certain NT levels.. Studies show that meditation and deep breathing help improve anxiety so this could maybe make sense.

      I know whatever is going on with me is all becoming corrected with the right supplements taken over time, and those supplements are all targeted at boosting inhibitory neurotransmitters.

      • Michelle, have you or anyone used magnesium L-threonate? Supposedly one of the magnesiums that crosses the brain barrier.

      • Michelle said:

        Yes CK. Actually it’s on my list of supplements that I want to try. Not try just for the sleep issues but to take on a regular basis. I haven’t yet because it’s expensive and I have been spending a lot on supplements (although worth it because they have helped immensely!). My mom is the one who initially told me about mag threonate and she takes it. She is 67 years old and had 2 previous mini strokes which really messed her up for awhile but she has gotten her health back through proper diet and taking supplements. She is now off all medications. She just recently started taking magnesium threonate because of exactly what you said, it crosses the blood brain barrier and is supposed to do amazing things for your brain. Definitely something I want to try, and once I am sure my health is more stable I will cut back on some of the supplements I am taking and maybe then can afford it as well.

      • first of all I don’t think the lungs work that way.

        Secondly the problems do not arise because you have too much CO2. They arise because your CO2 levels are too low.

        When over breathing we lose too much CO2 and create: respiratory alkalosis and hypocapnea

      • Michelle said:

        Sorry must have misunderstood when you explained it.

      • Hi Michelle, just checking to see how all is going and if you are still doing well with the vitamins?

      • Michelle said:

        Hi CK, Yes I am still taking all the supplements as usual and doing well with them. If I forget to take them for too long I have issues come up again but they go away quickly once I take them. Not often that I forget but I’ve noticed a couple of times I forgot and had issues pop up so the supplements definitely help. How are you doing?

      • Great to hear Michelle, if the vitamins are working definitey stick with them and hopefully this crazy condition passes. I’m up and down, I’ll have one descent night or 2 followed with a night of sleep starts, then back to minimum jerks and some insomnia. It’s like my brain is all over the place and just cannot find the right balance . My ear is leaking with wax,( more ear drops) , and have an eye infection. I’ve never had an eye infection or ear infection, but now I seem to get it all. I’m taking taurine twice a day and started magnesium l-threonate yesterday so will monitor and let you know.Taurine is helping me a little I believe. The P5P seems to be hit and miss for me but do take it on ad off. I will try pharmagaba but will see how I go with the magnesium first. I wonder if anyone else is trying your vitamins with any success..

      • Michelle said:

        Hey CK, glad you are getting at least some relief. I know not sleeping sucks but getting a decent night here and there helps. It almost sounds like your body is detoxing or something. Have you seen a doctor about your ear and eye? Did you try the Apple cider vinegar for your ear at all? After taking P5P for about 2 months my skin started breaking out all over like a detox reaction but I continued to use it and my skin cleared up and I haven’t had a problem since. Sometimes when taking new supplements that our body needs our body begins detoxing from some of the stuff that it wasn’t able to get rid of without the supplements.

        Also, have you ever considered high cortisol as a cause of your sleep twitching and sleep starts? Just curious. We are all different so some people will have different causes and high cortisol could be one. It was one of the earlier things I looked into. I found an article at one point that was written by a doctor who had a patient with our exact symptoms. He tried a bunch of different things on her and then eventually through trial and error found that Seriphos helped. Seriphos lowers cortisol naturally. When I read that I thought for sure I had discovered the cause of these sleep issues because the article so exactly described everything I was experiencing. I tried it myself but didn’t notice a difference, but I imagine if you have an issue with cortisol it could help. I thought I could have a cortisol issue because I used to get adrenaline rushes in my sleep before the twitching started. Just something else to consider. I tried a zillion supplements before I found what worked. I would definitely continue with what you are taking currently if there is even SOME difference though. This is such a challenging condition to figure out.

        Do you eat gluten? I also think it might play a role. Our wheat is genetically modified and the modification is adding a chemical fertilizer called round-up into the wheat to make it pest resistant. All our wheat now is like that, you can’t get the old natural wheat anymore. I was resistant to going gluten free. I had no digestive issues so thought there was no way I had an intolerance to wheat. But I tried it and every once in awhile I will cheat. I just recently realized that every time I cheat I have extreme muscle and joint pain in my back and hips. I always had this for the longest time but I thought it was something I’d have to live with. I didn’t really notice it wasn’;t as bad when I didn’t eat wheat, and then when I ate gluten free for awhile and cheated and had wheat the pain would intensify a couple of days after the cheat and I would pay for it for a week or 2 before the pain would subside again. It makes me wonder what else this wheat or gluten issue can cause. I have read in a book called Wheat Belly that gluten intolerance can also cause killing off of certain brain cells called perkinje cells, that once killed cannot regenerate. It then causes all kinds of neurological issues. So it also might be something to consider as a potential cause for some of these issues and worth eliminating for a period of time to find out.

        Just some ideas for you to think about. I hope you are able to figure this out for yourself and get some twitch-free sleep!

      • Thanks Michelle, I’ve had cortisol blood and and adrenal urine tests done in the early days. I’ve had every blood possible also. I took seriphos 5 months ago but found it made things worse at the time. Im not sure if it was coincidence but only took it a few nights. I too get the adrenalin rush after or during the twitch. Mine are very much head noises when I have them bad. I did try the apple cider but had to get on ear drops so will wait. Yhe infection has switched over to the other ear so work that one out. I am taking eye drops also. I might give seriphos another go as I do have a full bottle sitting there. Sometimes I feel like things are getting a little better and always skeptical trying another vitamin just in case. I also did a 400 food allergy test and am gluten, free sugar free diet for my hypoglycemia. It has made a difference I believe. I need to be on a yeast free diet but that is a little hard.

      • Michelle said:

        Well it sounds like you’re on the right track CK. If you’ve already tried Seriphos and found it made things worse I would wait on trying it again and stick with what you’re doing. Definitely try the PharmaGaba though when you get a chance. I would try it for a month and see how you feel and if it makes a difference. Why do you only take P5P intermittently? And did you say you should be on a yeast free diet as well?

        Interesting about the ear and eye infections. I went through a couple of years where I kept getting ear infections and eye infections every few months. No idea why the eye infections but I figured out the ears. I had this black gunk in my ears when I’d use Qtips and the doctors would give me drops that would temporarily clear up the infection but eventually it would come back. I finally googled it and found I had a fungal infection (hence the black) and not a bacterial infection which is what the doctors were treating me for. I bought some drops for it online as well and used them once and haven’t had an ear infection since then.

        I’m sure you’ll figure our what works for you eventually. It’s so much trial and error but I think you’re doing the right thing trying different things like I did to see what works. It’s really the only way I think since doctors are so clueless about this.

      • Saw the ENT who washed out both ears and found fungal on right months ago. Took ear drops cleared up and now has jumped to the left ear and back on ear drops. It’s been close to 3 months and seen 2 other doctors and all have said outer ear infection. I even took 2 different ear drops and a course of antibiotics. I will try the pharma gaba and l tryptophan as normal gaba gave some brain arousals. How long did you give seriphos a try for? I found it gave me grief after a few nights, or didn’t do anything so I drop it, buy maybe like P5P it needs to be worked up, I don’t know. Ive also gone down the inflammation path, tart cherry and curcurim anti inflammatory, ginger, apple cider and cayenne pepper route every morning for months, and nothing. Like yourself I have a cupboard full of vitamins that get used then dumped. I had tried inositol which helped a little maybe who knows, another one I was worried to implement, but mine are so up and down I can’t work it out. I had 2 minimal jerk free nights with maybe 5 hrs sleep, followed straight after with 2 days of twitches, head whooshing arousals and only 3 hrs med nights and stuck to the same diet and plan which I record daily. Did you get them this inconsistent?

      • Michelle said:

        Hey CK. I continue to take any vitamins or supplements I have now even if I don’t notice a result from them. If I take them until finished and don’t notice a difference in anything I just don’t buy them anymore. But I will take them to avoid wasting them UNLESS they cause a negative reaction, and then they end up wasted. You could also try glutamine. I still take it even though I didn’t notice a change with it. But I don’t necessarily think everything needs to show a dramatic change to be helpful. For me all the stuff that boosts GABA has been what helps so I continue with that and am finishing up the other stuff like glutamine that is supposed to be helpful but that I don’t see a difference from. I took Seriphos for a month. Some recommend smaller doses of seriphos like 100 mg whereas a lot are sold as 1000 mg so you could be right on needing to work up, not sure. I took 1000 mgs and wasn’t affected negatively but everyone has different sensitivities to things and different levels they can tolerate.

        Interesting thing happened to me today. I stayed up way too long which in the past has triggered twitches but it didn’t today and I was able to fall asleep. But then half an hour later there was a huge crack of thunder that woke me up. After that every crack of thunder caused an adrenaline rush in me and shortly after that I started twitching. I knew I would have trouble sleeping then so I got up and I took 2 P5P and 2 Seriphos at 1000mg. I took the Seriphos because of the adrenaline rush as it is known to counter cortisol. After that I went back to bed and within 1/2 an hour I was asleep. I fins it interesting that the crack of thunder caused adrenaline rushes (it was LOUD) and subsequently caused twitching.

        I did have inconsistent twitching. First it was every day no matter what. I went days without sleeping. Sleep meds helped me get SOME sleep after several days but then eventually the meds didn’t work either. When I discovered P5P and taurine worked it wasn’t an immediate improvement. It was gradual and that is when I had inconsistency in the twitching. Some days I had it some days I didn’t. Now I rarely have it at all. I stayed consistent with taking it tho. Did not waiver from that even when it caused skin breakouts for awhile. I think anything you are taking needs to be consistently taken for a good period of time to really determine if it works, unless there is an obvious negative reaction to it. The body takes time to stabilize and adapt to changes and it will be difficult to determine if something really works without being consistent.

        If inositol may have helped as well maybe it’s worth trying again too. It is connected with sleep and since it’s a B vitamin and you seemed to have some sort of result from P5P, maybe you have some B vitamins that are low.

        Also if you remember before I mentioned methylation issues as a possible cause of all this. Interestingly I read that B6 or P5P help lower high homocysteine which is involved in methylation. Seriphos also affects methylation somehow. Inositol is also connected with methylation. I’ll try to do more research on this to find out how each effects methylation.

  18. I started to take Atarax appr 1 month ago. It helped me to control jerks. It starts to work after 1week and also helps to have better sleep

    • Hi Alex, how is atarax going? Also, I received some phenibut and holding off using it but the jerks have taken a turn and getting alot of head and ear noises jerks(weird). When you took phenibut did it stop the jerks or just put you to sleep easier? . I’ve been holding off taking it as have been scared to introduce another product.

      • Ck – Did you ever take Klonopin? Just try 300 mg gabapentin and .5 mg Klonopin about an hour before bed and see if it works.I think when a person’s body gets way sleep deprived it all gets much worse. I’m sorry to hear the supplements aren’t working. I’ve ordered those to see if it will for me. Please keep updating how you’re doing.

      • Hi Lisa, I’m hoping it’s just a wave as I’ve had some good days and weeks jerk free but still crap sleep. . I was on clonazepam over 6 months ago, as with Valium, Ativan which I have boxes off but really trying to tackle it without the benzos. I found clonazepam gave me more daytime spasm and twitches but did work well. I’m getting alot of the head noises and this tinitus that was brought on from the benzos doesn’t help with it all.

      • Hi Lisa, have you had success with just Gabapentin? I’ve managed 4hrs with just 100mg,. I’m hoping the last few days might ve been due to the magnesium l threonate I remembered taking 2 days ago. It’s the second time I’ve introduced it and both times I’ve noticed the jerks deeper. These brain noises are unexplained. It’s seems even certain foods affect the jerks for me, so it’s so hard at the moment. It’s been 13months and still going. How many hours are you getting with clonazepam and gabapentin.? I rarely get more than 5hrs meds or med free. Most nights it’s 4hrs on the dial and very hard to function as you know.

      • Ck – some nights I can take only gabapentin and get 6 hours. Usually I have to be very tired though because it doesn’t stop the sleep starts (jumps jerks whatever they are) and if i cant get past that and actually asleep then I have to resort to both gabapentin and klonopin. I have tinnitus too. I think its from longterm benzo use and withdrawal from sporadic use. Have you tried the pharmagaba?

      • Lisa, no haven’t tried the pharma gaba. I had normal gaba compounded and honestly made my jerks worse..michelle has mentioned it’s completely different so worth a shot. I am taking Taurine 1000mg in the morning and 1 p5p at night. Im sure they have helped as I’ve had many nights lately jerk free for the first 4 or 5 hrs then once I wake they are there but not as intense. I’m not taking huge dosage so not sure whether to increase. Im finding foods trigger them but I’m really watching what I eat, well trying hard. Tinitus is from the benzos for me also tand the bloody anxiety I never had has come about from benzos also. Let us know how you go with Michelle’s stuff,. I’m also starting my second course today of antibiotics for h. Pylori. I’ve tried natural approaches and it’s still there. This will be my second course. As much as I hate taking antibiotics , I’m pretty much at the point where I need to try and get this bacteria in the gut sorted and compared to the other crap I have to take for sleep, I figured what the he’ll.

      • Hi CK!

        Phenibut switch off jerks in my case and also helps to get to sleep easier. I took it over 4 years and could stop it and switch over to Atarax.
        Phenibut is much milder vs benzo stuff, less addictive. I started with 250 mg and then moved to 500 mg just before night.
        I’m currently on Atarax, it also helps me to sleep with no jerks. Again like Phenibut Atarax is much milder, less side effects, can be used for long and I have no addiction to it

        Hope this will help and you will feel relief!

      • Thanks Alex, I have it as my backup..I’m trying hard to do it med free but it is torture sometimes as 2 hours of sleep starts to achieve 3 or 4hrs of sleep sometimes.

      • Do not be afraid to experiment on drags. I’m now taking them for almost 5 years and I’m still in good phisical condition. It is much worse to get sleep deprivation. Hope you will feel better soon!

      • Michelle said:

        Interesting…mechanism of action for Phenibut is working on the GABA receptors. Mechanism of action for Atarax works on the histamine receptors.

        When all of this started for me, before I had the twitching and only had adrenaline rushes and shortness of breath, a naturopath told me I had high histamine and low copper. She said that copper helps the body to keep histamine levels low. I started taking copper and all of my symptoms went away. About 2 months later they came back complete with the new symptom of twitching. Eventually the breathing issues and adrenaline rushes went away but the twitching seemed there to stay. I sometimes wonder if I ended up taking copper too long without zinc to balance it and made myself high copper which caused the twitching. I’m not sure.The GABA supporting supplements I’ve been taking have continued to work for me until a couple of days ago.

        For the last 2 days I have had the breathing issues and feelings of anxiety pop up during the day along with twitching at night the first day as well. I had been taking all of my supplements and it’s been months since I’ve had any symptoms. The only thing I could think that I had changed is I started taking apple cider vinegar in water every day about 5 days ago for knee pain. My right knee had swelled up and was inflamed for 3 weeks with no injury or obvious reason why, and apple cider vinegar was stated as helping that. It did…within 2 days of taking it the swelling and inflammation was almost gone and the pain had lessened dramatically. But I’m now left wondering if it caused these sleep issues to pop up again. I stopped the ACV. Yesterday I was feeling panicked that these issues had come up again. I had read a long list of symptoms for B12 deficiency and had a lot of them and thought maybe there could be a relation. I have B12 injections which are actually a combo of a bunch of different B vitamins including high quality B12 and also P5P. So I did one injection and took 2 glutamine as well and within an hour I was able to breathe normally again. The panic feeling had subsided and my breathing returned to normal. I took a gabapentin last night because I didn’t even want to wait to see if I got the twitches. Today I feel ok…no shortness of breath or anxiety or anything. Have avoided the ACV but I am going to take it again and see if it triggers these issues so I know if it was actually that or something else.

        So confusing.

      • So true Michelle. It is so confusing and frustrating. One minute we are getting a little better the next it’s all down hill. I had a shocker last night and sick as a dog. Had constant swallowing all night and still continuing today. I don’t get it, it is like a swallowing twitch and is driving me nuts. I’m so over all this.

      • Hi Michelle, how are things going? Are you back on track with your vitamins? You seemed to have a small setback last post.

  19. Hello, has someone tried anti depressants?

    I believe our problem stems from an over sensitive nervous system.
    Nerve cells are much more easier excited in comparison with normal people, which causes the sympathetic nervous system to turn on.

    People with hypersentive nervous system disorder are very sensitive to body sensations. Because the chemistry of the body changes so much when transitioning to sleep a flight/fight response is easily activated: hence the jerking, twitching and adrenaline rushes.

    I heard that anti depressants help to calm the nerves, has someone tried it?

    • Just got off Zoloft for one month. May have not taking it long enough. It made me to tired and definitely has sexual side effects. Also had jerks the whole month I took it. They went away the night I got off it. That said, that same day I started drinking water every morning. I never have. Since then not one jerk. I will have to wait longer to tell what is going on. Been goingn though this 3 years now.

      • Hi Mark, how are things going? I had a few weeks of very little jerks but crap sleep and now the twitches jerks are all back. These waves are just as bad, as just when you get some confidence you get knocked down. I’m going to try biotin and gotu kola and
        seriphos again in high dosage. it’s been a long time and have the pharma meds Zopiclone gabapentin baclofen as my usual last resort. I have phenibut, but haven’t used it. Some have had success with it, but scared to introduce it. Still taking taurine and p5p but not having luck with it like Michelle has. Hope your jerk free run is continuing..

    • Hi Bryan2; Trazadone is the only antidepressant I’ve tried (for insomnia) and it didn’t help much. Think it helped me sleep thru the night a couple times but it was hit and miss. Also has bad side affect of nasal congestion if I took more than a light dose of 50 mg. Would wake up and could hardly breathe. Doctors like to prescribe it because it’s relatively cheap, been around for a long time, and supposedly not as addicting as sleep meds. I know it does help some people but I think antidepressants work best for those who actually are depressed, but nothing else.

    • Hi Bryan2 – Zoloft made mine worse for some reason. It also made my heart race.

      • Jessica said:

        Bryan,

        I am in touch with a lady who went on benzos for this condition. The benzo made her symptom 10 times worse and went off of it. Her doctor put her on Prozac and it immediately helped her. She still get some jerks but is able to sleep a full night. As for myself, I seem celexa did nothing for me as well as the sedating antidepressant like trazodone- except for mirtazipine. The only one that helped, until it didnt. Drugs just don’t agree with me. I think that an antidepressant like Prozac is worth a try if you are really suffering.

      • Jessica said:

        Bryan- I should also mention that the lady on Prozac was on it for 14 months after the benzo before she decided to get off of it. When she did, the jerks came back really bad. She went back on the Prozac and within a week she was sleeping well again. It seems that in her case she has some anxiety issues unrelated to benzos that need to be controlled by an ssri- at least for now.

      • Hi Lisa, have you found anything that has helped?

      • I still take 300 mg gabapentin each night and some nights I have to take .5 mg klonopin too. I’ve been doing that for at least 6 weeks and it works pretty well. I’ve not tried all the supplement combos yet because I have to order them on Amazon because there aren’t any stores that carry pharmgaba, Taurine, or magnesium taurate. I tried p5p at 50 mg dose by itself and it didn’t seem to work. I tried to cut down the gabapentin and jerks are like before. I had hoped some of the supplements i’ve been taking Vitamin C, CoQ10, magnesium, iron, Vitamin D, L Glutamine…would help. Like maybe the jerks are caused by a deficiency or something. I don’t really think so. I read somewhere that too much p5p can be toxic so I’m not sure about taking the high dose that’s supposed to help. How have you been doing lately?

      • Hi Lisa, I’m very up and down. I have days where I get 5 broken hours then maybe 4 straight, some a little longer, but still feel tired thr next day. I’m trying super hard to stay med free. I’ve started taking P5P again and seriphos at night if I need it, but honestly I’ve had days where I didn’t take anything and got better sleep. When needed I take half a Zopiclone or baclofen or gabapentin which I’ve used once, If on the nights the jerks don’t settle. I tried magnesium l threonate, and for some reason slept worse and jerks were more intense(mine try it down the track again) . Mine varies so much from night to night and makes it hard for me to gauge if it’s the meds or just cycles. I’m going to give P5P a go for longer as with most meds if they dont work after 4 or 5 days I stop them. Like Michelle said, maybe they need to build up. Some vitamins give me head noises arousals whatever there called. I think seriphos is one of them, to early again to say. Taurine I have been continuing to take every morning 1000mg. Too early to say, but I have been getting nights where I’m asleep in 10min which makes the night easier and anxiety not as high. The breathing exercises are helping. I wish there was an easy fix, some are having good success with vitamins, just not me also.

      • Jessica said:

        Does anyone here suffer with high morning anxiety? At about 4am I start to feel very anxious and each adrenaline surge or jerk makes it worse. This feeling will last forces few hours after getting up- but getting out of bed does help reduce it. It sucks! I’ve been sleeping better for the last 12 nights, but the morning anxiety has not left- though it is horrendous after a night of zero sleep (so I’m thankful for the improvement). I know that this symptom is common in benzo withdrawal; however, most people lose it after 6 months or so and I’m already 11 months off.

      • Don’t think we are going to figure it out. I’ve tried everything . I have not had a jerk for a month . But … Im sleeping bad I wake up all the time but not jerking at all just wake up . The no jerks started this time when I stopped Zoloft . I also started drinking water especially in the morning . No jerks now . Makes no sense it never does . They will kick up again no doubt

      • Hi Mark, Ive had that also.. Very weird.

      • Only for a couple of days but get up every 2 hours and sleep crap. Hopefully, Mark it’s a sign that things might get better. Have you had this cycle before or is it the first time you haven’t jerked for a month? . Ill take crap sleep or broken sleep over jerks.

      • Anonymous said:

        Not exactly like this. But I’m drinking a lot of water . I have urination issues usually with the jerks but right now I’m having urination but no jerks . But I’m tired all the time right now. I think that’s getting off the Zoloft. I’m trying everything .

        To the point I’ve had this happen similar but not exact . I don’t care what anyone says if you are having vivid dreams you are not sleeping well . Trust me . Especially if they are lengthy . It is a result of getting off medications

      • We all dream, some just don’t remember them. Kids dream all the time, and they are sleeping. It just depends what stage of the sleep. You’ll find we dream too early with this condition and not in the later stage of sleep.

      • Also, medications on or off don’t help, your right.

      • Well am up at 12 AM. Been trying to sleep since 9 PM. Have to get up for work at 4 AM. Have both insomnia and severe jerks. Took 300 mg gabapentin at 9. .5 mg Klonopin at 11 and another .5 just now. I’m going to keep taking .5 Klonopin every 1/2 hour until it knocks me out or kills me. Does anyone ever get a weird visual type thing with sleep starts almost like what TV looks like when it goes off the air? Hard to explain. F%$#!

      • I hear you Lisa. I had many of those nights and they are torturous. I’ve worked out that I cannot get to bed unless I’m really tired or else it’s useless. For the first 6months I had all the symptoms, audio, visuals and sleep paralysis. It’s definitely a screwed up condition. I just wish a sleep specialist would bloody get it and then work on it and see what we go through. They can then write about it in there stupid journals. How long for you now?

      • Michelle said:

        Hi Lisa,

        You mentioned that you have trouble finding the supplements I mentioned in stores. What country do you live in? I order a lot of my supplements online sometimes. IHerb seems to be the best place I’ve found to order from. You can find pharmagaba there as well, one of the cheapest places I’ve found to buy it. I have never seen it in stores here. The other supplements I mentioned can also be found on IHerb. I usually just buy them at my local vitamin store but I have ordered them online in the past as well. I believe they ship to all countries, you can just choose your country in the drop down menu on the top right hand corner. Just giving you another option if you’re feeling stuck.

        Also IHerb sells the sleeping pills I take (although I haven’t needed them for awhile) and they have a combination of pharmagaba and relaxing herbs like valerian, hops, passionflower, as well as tryptophan and small amount (0.3mg) of melatonin. They really helped me fall asleep and stay asleep without feeling drugged or groggy the next day. I also recommended them to my mom because she ws having some sleep issues and she tends to be really sensitive to meds and supplements and didn’t want something that would make her feel out of it, and it worked wonders for her too. So you might want to try it because it has a bunch of relaxing stuff in it, including pharmagaba so could save you the cost of trying all of those things separately.

        Also as far as I have read, P5P toxicity is very low risk and has occurred with people who took either sublingual form or enteric coated capsule form. Vitamin B6 toxicity is more likely than P5P toxicity as well for some reason. So don’t be too scared of it, just don’t get sublingual or enteric coated capsule form. I have taken 100 mgs twice a day now for 3 or 4 months and have never experienced any symptoms of toxicity. If you are worried, try working your way up slowly and see how your body responds. Any negative reaction and just back off to the amount you were taking before the negative reaction, or discontinue if necessary. It’s worth a shot though if it helps you. If it doesn’t, then you just move on and keep trying.

        Sorry to hear you’re having such sleep difficulties tonight. I definitely know what it’s like. Some days I had 2 hours sleep or less before having to go to work. I even called in sick a couple of times but I could tell my boss wasn’t too happy with that after it happened a few times so I’d force myself to come in and just go through work like a zombie, look forward to getting home to sleep and then have the whole thing happen all over again. It’s the worst feeling!😦

      • Hi Michelle- Thanks. I need to order Taurine and pharmagaba. Do you take those in the morning or at night and how much? Should I stop the gabapentin? I think I would have to wean down…or do you think I can supplement while I reduce the gabapentin dose? I am miserable today. I hate when I have to take Klonopin. It feels like a giant step backwards. I want to know who the best sleep Dr is? This disorder deserves some attention.😥

      • Michelle said:

        Hi Lisa, here it is again how much pharmagaba and taurine I take and how much. As far as the gabapentin, I would try the supplements first and if you still find you need the gabapentin then take it. I basically did exactly that. I would take the supps and if still twitching I would take the gabapentin. Next night I would do the same and so on. Eventually I found I didn’t need the gabapentin anymore. Your dosage and timing with gabapentin was different than mine. I was told to start with 100 mgs 3 times a day and gradually increase my dose to 300 mgs 3 times per day.

        Pharmagaba 2x 100 mg caps morning and night
        Taurine: 4 x 675 mg caps morning

      • Hi Michelle – Thanks for the repeat. Little foggy from lack of sleep and sometimes these messages get buried on here. I was trying to look back and lost it. Did anyone who had cortisol and adrenals tested come back abnormal? I haven’t had either of those checked.

      • Michelle said:

        No worries Lisa. I didn’t have cortisol levels tested mostly because every doctor I came across wanted to automatically call it anxiety and dismiss me with a prescription, which to me was unacceptable. I also had doctor’s look at me like I had 2 heads when I suggested maybe it was adrenal fatigue. I did try taking Seriphos which naturally lowers cortisol levels because I thought it could be an issue with high cortisol, but I didn’t notice a difference. I know some people on here have said their cortisol was tested and came back normal. I don’t personally trust doctor’s take on what “normal” is because often there is such a large scale that they use and you could potentially be barely on the “normal” level of that scale while someone else could be on the high normal of that same scale and feel like a functioning human being lol But I would still get those cortisol levels tested and make sure you find out what the specific numbers are on your test for the reasons I stated above. I’m sure this is caused by a number of different factors for different people so there is probably not ONE specific thing that works for everyone.

      • One more thing Michelle…what brand supplements do you buy? There is such a wide price difference. Thx.

      • Michelle said:

        Also the “TV off air” thing you are describing is known as “visual snow” and has been reported by people using clonopin and other benzos. Please be careful with that stuff.

  20. I would encourage people to look up Breathing Pattern Disorder and respiratory alkalosis.. Starting to think in my case this all might be a breathing issue.

    More info: http://newmedicinegroup.com/body/respiratory/breathing-pattern-disorder-hyperventilation-overbreathing/

    • Seems to be in my case also.

    • Michelle said:

      I don’t know. I’m still a little confused about this. My symptoms actually presented as many of the symptoms listed on that page. I tend to be a shallow breather I think, and my symptoms started with a breathing problem where I felt I couldn’t get enough air and was gasping for breath, trying to force myself to take deep breaths and almost hyperventilating because I couldn’t breathe. Also had heart palpitations and chest pain. Lung tests revealed nothing. Heart tests showed I had a slight arrhythmia and a slight valve issue both of which the cardiologist said were nothing to worry about (although I wonder about that). The breathing problems resolved on their own, or maybe some of the supplements I started taking helped somehow. But then came adrenaline rushes at sleep onset, which again resolved on their own after a few months and then transformed into the twitches and jerking at sleep onset.

      I don’t know if smoking could have any effect. Or quitting smoking. I smoked for 20 years and then quit about a year before all these issues started. Could it be that smoking actually kept my CO2 levels higher and then quitting caused them to drop because I had a breathing issue all along? I don’t know.

      And why would taking P5P and Taurine and PharmaGaba correct the twitching I have?

      I feel like there could be something to this breathing thing but I’m not sure. I do still find myself feeling short of breath on occasion and I usually find that taking a deep breath, holding it in and kind of forcing it down to cause pressure in my lungs helps, then I release and do it again a few times and it seems to resolve the shortness of breath.

  21. I feel almost suicidal. I missed another day of work today, I can’t do that The muscle twitches are too much. Every time I think I am almost falling asleep I get that jerk, muscle spasm.. another thing (someone talked about a ‘burning’ sensation) is that I have a horrible sensation in my upper body, chest, neck, shoulders.. it’s almost like being pulled sort of feeling, but I could also describe it as a burning feeling.. it’s awful, I did see a Dr. for it once and he said it was adrenaline? I used to think something physically was wrong with me but now I think it’s anxiety because I can just think about it and it starts up. I’m so miserable. I can’t live like this, yet I have people that need me. Going on three days of no sleep (it’s 3:15 AM here now). I’m lost and nobody in my family understands. I am on Gabapentin but haven’t really felt a difference.

    • Hi Sabrina, sorry to hear. We all know what you are going through. It’s the worse condition I believe one could have. I had a crazy night last night and said the same thing. I felt like shoving all the meds down my throat and just not waking up. Anyone who says they manage with this is not human.

      Gabapentin has helped some and I take it also amongst other meds. How long have you had the jerks /sleep starts. I’m now 13months and the first 10months were torture. The last few months I’ve had luck on and off without meds, but every day is different. Try adding a sleep med to to gabapentin, some take clonazepam, which definitely works but comes with its own problems. Hang in there!

      • Thanks🙂.. I’ve always had sleep issues but this really started a little over a year ago, the first time I ended up in the ER because I thought something was really wrong with me, I hadn’t slept for three days.. they gave me some strong drug that calmed me right down (wish I had more of that). At night I take 3 Gabapentin, 2 Mirazapene (sp?), 4 over the counter sleep meds, and 4 Melatonin.. it does help me get to sleep but it only lasts for 2 hours (almost every single night, go to bed at midnight and wake up at 2- then lie there for the rest of the night). I just can’t imagine living like this for the rest of my life. It’s not worth it and it’s affecting my whole family. I found thinking about the jerks and the adrenaline rush through my body will def. make it happen more but of course, I can’t stop thinking about it. Thanks again.

      • Sabrina is it mirtazapine? And how much are you taking?

    • Anonymous said:

      do you also experience symptoms during daytime?
      Ask your doctor for capnography research, to measure ur CO2 levels during breathing.

      • Just shortness of breath. It’s a rebound to the adrenaline rushes and anxiety that goes on at night seems to carry over with breathing issues for me.

      • Have you had this done?

      • Anonymous said:

        Yes, I had this done along with a hyperventilation provocation test.

        doctor told me I was hyperventilating, even though I thought I was breathing normal.

      • Very interesting Sabrina. I might look into it as my breathing is bad. I am doing breathing exercises which help. Did the Dr say anything else or how to rectify the problem.?

    • Sabrina,
      We know how you feel. I would recommend finding a doctor you trust, and trying some things. Have you ever tried Klonopin? It should help you at least get some sleep. Tell the doctor about this site. Print out some posts from this site. It helps to legitimize the condition. What supplements have you tried? Hang in there. We know how you feel.

      • I posted above that I take 4 Melatonins, 4 over the counter sleep aides, 2 Mirazapene (not sure if I’m spelling that right), and 3 Gabepentin.. the Gabepentin I don’t really feel a thing, even if I take during the day. This combo will knock me out for two hours then I’m up the rest of the night and the twitching and weird sensation in my upper body, adrenaline rushes start for the rest of the night. Sometimes I can sleep during the day when I don’t have to work. I have a Dr.’s appt next Friday and I’m going to be more honest about how horrible this is getting. I just seem to struggle though each day and it’s getting harder and harder. I don’t want to lose my job or my life I’m just so worn down. Honestly, I thought I was the only one that ever had any of these symptoms, I thought maybe i was just the crazy one till a good friend gave me the link to this site. It helps knowing I’m not alone (even though sucks for everyone else suffering) thanks again.

      • themanwhocannotsleep – How are your symptoms these days? Sometimes when people don’t post I get worried.

      • Weird how he doesn’t get on. Last post few months back, he said he was doing better and his career had taken off. Where are you tmwcns?

      • Thanks, Lisa and CK.
        I’m still chugging along. I really do think it has something to do with adrenaline or cortisol. It’s definitely not caused by stress, but it’s worse when you are stressed. I went 36 hours without sleep last week, and just try to do the best I can. My career is still doing well, but I’m constantly afraid I won’t be able to work because of this. I thank everyone for posting, and I do try to read all of the comments. I think finding something to combat the cortisol is the best plan.

      • It’s good to hear you are doing ok. If it weren’t for this site, and know you’ve been told many times, I would be pretty much screwed.
        It’s amazing how we all try things, cortisol, inflammation, adrenal, gaba and still can’t get to the bottom of it. Anything at the moment that has helped a little more?

      • tmwcs – Are you able to track how many people visit/post on this site? How many people actually have this I wonder. Is it a symptom of a disorder or a disorder of itself? Is there any current research into this? It seems like there are people from several countries on here. How many total years have you had this? What’s the longest you’ve gone symptom free? What medications help you most? Have you ever been approached about a clinical study? Would you if it meant being public about it?

      • I’ve had the same thoughts as you. There should be a clinical study on this and it should go public. I would have no problem bring a part of that. That’s part of the reason why I contacted Dr. Lim at Sunnybrook Hospital in Ontario. He’s a scientist/neurologist. But haven’t heard back yet.

      • …and I’ve said it before too…this group is like a life raft in a sea of despair. I know there’s worse things but this is so awful.

      • Anonymous said:

        Stress definitely makes me jerk more, which makes me think they are related to too much cortisol as well. I just don’t know if it takes a long time to get cortisol levels back to normal or not, even with supplements that help lower it. It seems like exercising in the evening increases the amount of jerks also, which also makes me believe cortisol may be the issue. Has anyone else experienced this?

    • Gabapentin made mine 10 times worse . The best combo I ever had was definitely Lunesta and klonopin . Lunesta saved me from jumping off a bridge . 3 yrs and counting right now they have went away . Of course they will come back

    • Anonymous said:

      Sabrina, hang in there, the suicidal feelings will pass, and the jerks will get better as well. I dealt with the same feelings in the beginning. Now, I am sleeping well most nights, even though I still have some jerks. There are a lot of supplements on here that people have mentioned have helped them. A couple of people said that 5 mgs of biotin in the morning and at night helped reduce the jerks. NAC is supposed to help as well, along with some others. I don’t know what pain meds you took, but I once found a thread online where a bunch of people who had taken opiates experienced jerks, so it’s possible that you are experiencing the jerks as a part of withdrawal, and that they will get better with time. Also, you should look into getting a sleep study done as well to see if sleep apnea is part of the problem. I thought things would never get better for me when this started, and that life would never be worth living again, but my jerks have reduced greatly with time, and my life is definitely worth living. Just know that this difficult time will pass for you soon and continue to reach out for help from doctors, people you love, and the people on this board. We are all here for you!

      • Anonymous said:

        Try drinking lots of water also. Have three glasses or so a few hours before bed for a few days, it seems to help. Also, eat a lot of black pepper, the kind you grind yourself, it seems to help decrease the amount of jerks also.

      • Anonymous said:

        I should also mention that the black pepper seems to increase urination, so eating it at lunch time is better for me, so I’m not waking during the night needing to use the bathroom. Also, the black pepper seems to give me headaches, so just wanted to mention that as well.

      • Anonymous,

        I just read your post to Sabrina. You mentio feeling better now. I’m curious to hear your story… Mind sharing? When and why did the jerks start for you? I’m In hell right now with them, at 11 months off clonazepam.

  22. Get a prescription for Klonopin. It will work.

  23. Get a prescription for Klonopin. It will work. Hang in there. We’re all here for ya.

    • Do you know if the generic Clonazepam works the same, does it work as well as Klonopin?

      • Thanks everyone. I have not tried Klonopin. I am seeing my Dr. next Friday. One problem is that I am in recovery for pain pill addiction from about ten years ago, the only time in my life I actually felt ‘normal’ and not anxious and slept good, but then obviously, as drugs do, it got out of hand. I had to go into inpatient treatment and still see a addiction specialist once a month, so still in recovery. My Dr.’s are very leery to prescribe any kind of what they think of as ‘addictive’ medication. I’ll try and talk to them more because I tend to go and make out that things are okay and never am fully honest (hate going to the Dr.) about how much I am suffering. But going to the Dr. I get super nervous. Going anywhere actually I do.

      • I’m not sure as I e never tried it or heard of it for that matter but I would imagine so. Klonopin is Clonazopam incase that’s what you meant. Just the shelf name

      • Yes it is the same. Honestly, mirtazapine at low dose should help when the jerks are mild. Clonazepam or other benzos at early stages. Check previous posts on people looking for answers for clonazepam withdrawal and ended up with jerks. I took them for 2 weeks and prior to taking them I never had daytime twitches after taking clonazepam I had every twitch during the day. Luckily, I decided to put aside.

      • Okay thanks for your replies. I was just curious since for some reason when I took Lunesta for awhile years back, 2 mg gave me 6 hrs sleep for awhile but its generic doesn’t help at all. Lunesta is very expensive (insurance questioned it) while the generic is much cheaper. Last year I asked a Dr. for Lunesta and automatically they give me generic. Threw it out.

      • In saying that, ai got the best sleep on clonazepam and felt good, but was petrified to continue using it. Drs in Australia refuse to give it out, but would happily give Ativan and Valium so go figure. Ativan is another one that helped with sleep not jerks though.

      • Anonymous said:

        You sound just like me, Sabrina. I tend to downplay how I am doing as well, and I get super nervous going to doctors, or anywhere else, for that matter. I think these things can be caused by low serotonin.

  24. Maybe a small dose of Valium would help with the jerks, since it’s more similar to clonazepam.

  25. Anonymous said:

    Tinnitus is caused by low serotonin levels. SSRIs could possibly help raise serotonin levels. It makes me wonder if low serotonin levels could be playing a part in the jerks too. Especially, since some of us have lower vitamin D levels and vitamin D increases serotonin, so I wonder if the lower vitamin D levels could be contributing to the jerks as well for some of us.

  26. Question for everyone…

    Do any of you experience periods of time when your symptoms are much better, only to be slammed again? I am in withdrawal from a benzo and I have other symptoms, but the Hypnic jerks have been the most disturbing and quite frankly, they have made me close to suicidal many times in the last 11 months. I just came out of a 2 week “window” of feeling 50-75% better. I was only sleeping 0-2 hours and started sleeping 4-6 hours during those 2 weeks of less jerks. I’m back in hell for 3 days and just trying to figure out if this is common for everyone with this condition. Ladies… Does this get worse around that time of month?

    I’m really in a bad place today. I feel like I am dying. Just 3 days ago I was on the lake and laughing- feeling normal. Now I can’t even go an hour without crying. I hope others don’t feel this bad.

    • Jessica;

      I know you’re not fond of doctors but if I was in your situation, I would find a clinic that specializes in withdrawal and get two independent evaluations. Then do what they tell you. I know that’s not easy since a doctor got you into this to begin with, but it beats living like you have been. Prayers for your recovery.

      • Sylvia,

        I’ve been to 20+ doctors ranging from sleep specialists to addiction counselors. Im also currently working with a regenerative doc from out of state. There really isn’t much to be done for my situation Outside of taking good physical care and waiting it out as the average healing time is 18 months. I may have a new distaste for doctors who know very little about the drugs they dish out, but I’m not above seeking out help from them, which I’ve done too many times to count. There a few detox clinics in the US, but they do very little to help as they give out the same exact pych drugs that I’ve already tried. They work for a bit and then turn on me just as the benzos did. Anyway, thanks for your concern. I’m just trying to seperate my issues with others here who got this from something other than a benzo. My logic is this: if most people aren’t having multiple symptoms like I am and not having the waves and windows pattern, then perhaps my brain really is still just stuck in a withdrawal state and not some new irreversible state. I’ve been growing very concerned about this lately as my jerks are tsking a lot longer to disappear compared to the average person in withdrawal.

    • Hi Jessica – Are you taking any meds or supplements at all now? I do ok with supplements and gabapentin. Still need klonopin at times or the hypnic jerks/myoclonus will prevent me from sleeping at all. I had hysterectomy so not related to cycles for me. I’ve tried cold turkey and slow taper from meds over the years with no luck. I can only go about 5 days without sleep. Last time I was suicidal. SSRI’s, Ambien, Flexiril, melatonin, extra water, tart cherry juice are no help for me but seem to help some of the others. You seem very strong and determined. It’s encouraging that you have longer stretches with little/no symptoms.

      • Hi Lisa-

        No, I’m currently off all meds. I did take seroquel, gabapentin and mirtazipine the first 6 months off clonazepam. They only helped temporarily. I reach tolerance very quickly with pych meds. I’ve invested over 2,000 in expensive supplements over the last 16 months and none of it has helped. Honestly, I have never been symptom free since this started. My 2 week window only brought a decrease in symptoms making them very manageable as I was able to sleep up to 6 hours. 90% of the time, my nights are hellish. I don’t know how I’ve managed to survive this long in such a desperate state. It has certainly tested my strength and acceptance! I’ve been fortunate to meet a few people who suffered terribly with this crap and went on to sleep normally again. It’s hard to believe this will ever end when we are in the thick of it. Remind me, did this start out of the blue for you?

      • Yes out of the blue. I have noticed that supplements don’t help immediately. Some take 30-60 days to make any difference if at all. Which ones have you tried?

      • Hi Michelle, How are things going with you? I’m. Soo up and down. One night I might get zero sleep starts then another night non stop, so inconsistent it’s driving me crazy. Anyone else get them this up and down.

      • Just want to post that I dont think gabapentin works for me anymore (or did it ever?) I tried a little experiment where I cut out clonazepam completely and only took gabapentin and the jerks are back with a vengeance. I’ve been crying off and on all day. Has anyone’s doctor ever suggested plasma exchange or high dose steroid as a treatment option? I might move to a state where you can legally kill yourself. I won’t survive like this for long anyway…

      • I’m so sorry Lisa. I can’t answer your questions but is there anyone you can talk to?
        Family member or close friend who can help? I’ve been taking low dose clonazepam myself, intermittently last year and steadily this year. This year it’s helped some with adjusting to sleep apnea therapy. If I were you, I would go ahead and take just alittle clonazepam to get some relief, like just 0.25 mg, see what that does for you. Then maybe take the same dose tonight and maybe you’ll get some sleep. I don’t have any formal medical training but I have had plenty of experience with sleep starts, including the jerks.

      • Thank you all for the kind words. For the people who notice improvement did you just tough it out until it got better? How long did it take with no meds?

      • Hey Lisa

        It is sad to hear you are feeling this way😦

        So from reading literature I am convinced that the twitches come from a disorder in the nervous system.

        The nervous system is too sensitive and reacts strongly on the changing body chemistry when we fall asleep (dropping heart-rate, slower breathing, changing brainwaves etc.)

        The key is finding why the nervous system has become so sensitive.

        I think some medication helps to relieve symptoms, but i do not think it solves the underlying cause. I would rather take a change in lifestyle, although it might seen hard.

        From research i found that things like gluten intolerance, nutriënt deficiëncy, toxic metals, stress and anxiety but also chronic hyperventilation can increase the sensitivity of the nervous system.

        for me, i think this is caused by chronic overbreathing. According to buteyko theory, conditions like asthma, snoring, sleep apnea are all caused by chronic overbreathing and there have been many testimonials of these conditions being cured.

        What I noticed from this forum is that many people suffering from the sleep twitching also has some form of sleep apnea. Therfore i suggest those people to look into Buteyko and Chronic hyperventilation.

        I am currently doing therapy on my own. I noticed that breathing exercises (when done right) helps me to fall asleep without any or with very mild twitches.

        If you want to know more , i am gladly willing to write a document containing the references i found.

        We are the only ones who understand each other.

        Goodluck, and stay strong.

      • I felt the same way when my hypnic jerks were out of control. I twitched like crazy every night until I finally wrote a suicide note and planned to just end it. I don’t know how long you’ve been suffering from this but eventually they start to get weaker and there are intervals when they go away. Mine were crazy out of control to the extent that clonazepam barely worked, and three years later I’m doing better. They still cycle around (I never consider them gone) but it gets better. I hate to hear the despondence in your words, however I’ve been there so I know exactly what you mean. I had to shut down a lucrative business and move home with my parents for a year at the age of 45; that really compounded my misery. Hang in there, it’ll get better.

      • Hi Brian, interesting how you got it at that age. I got it at 44. It’s great to hear you are progressing and always nice when you get on and give us an update. I guess if more can come back and give us some success stories that would be great. My waves are really crazy. I cannot work out what brings them on and what doesn’t. I’ll have a great day and I’ll jerk. I watch what I eat and drink. I might have some nights where I don’t have jerks till after 4am and other nights it would be all night. I have even had a week of no jerks but sleep was still crap. I barely get more than 4 hrs, far from the days of 8hrs straight. I do the breathing techniques which have helped. Thanks again for coming back.

      • Coincidentally (or not who knows) I’m 43. Will be looking up the breathing exercises too. We should all get together for a sleepover.

      • Lisa, did they check your iron and ferritin levels? Low ferritin can cause myoclonic jerks, restless legs, and insomnia, or so I’ve read. Sometimes I think they run people through the extensive and invasive tests while overlooking the obvious.

      • I was low normal ferriten when the myoclonus started. I supplemented for quite awhile and now it’s better 60 I think last time they checked. Myoclonus has not improved so idk.

      • Hi CK,
        Glad to share anything that may give others hope. Sorry for the delayed reply but I was on vacation and was off the grid. By the three year point the sleep twitches appear to be fewer and far between. On vacation I had three insomnia nights but minimal twitching; what there was didn’t keep me up.
        I sincerely hope everyone here finds relief however they can, via meds, supplements, breathing exercises etc.
        Take care, hang in there, it can always get better!

      • Brian-

        Wow, probably the best news I’ve heard lately. It always worries me when I hear about cases that last years (makes me wonder if this can be permanent for some). I remember you mentioned in an older comment that your first year was really bad. Did it get much better in the second year? Do you attribute your healing to one particular thing (other then staying off the drug that caused it)? Also, do you still take clonazepam? I will definitely never touch it again, but just curious.

        My symptoms have eased up in the last month, but I’m still experiencing horrible nights. At least every night isn’t horrible like it used to be.

        Thanks Brian.

      • Hi Jessica,
        My pleasure. If I can impart any good news I’m glad to do so. The second year wasn’t so great, but the twitches grew less severe. By the third year they eased up some more, but I never consider them ‘gone’, and I still live with the fear that they will come back. Hopefully you and everyone else here will experience the same thing, that they will get better.
        Take care!

      • Brian-

        Thank you. The fear is horrible. I will likely have lifelong PTSD from this experience. Did you or do you get adrenaline surges as well? For me, its a feeling in my chest, brain or stomach like I either just fell or my insides were zapped. It produces anxiety and nausea. It usually coincides with a jerk, but can happen on its own. My sleep is in such a horrible place, I’m just not sure how I will cope much longer.

        Do you take medications?

      • Hi Jessica,
        I don’t get adrenaline surges but the twitches fully wake me up and it takes a while to relax after. If they are bad they just continue all night, but going on year three it’s been better. I don’t get nausea but the lack of sleep makes me very irritable. I also suffer from partial insomnia (can’t fall asleep for hours, or can’t stay asleep after three hours, or am awake two hours before the alarm clock) so all this has compounded to make me learn how to get by on minimal sleep. It sucks, but the twitches have been getting better. I take clonazepam when I have to but try to use just antihistamines and, for the insomnia, ezopiclone (lunesta).
        I certainly hope you start getting better! Was it you or Lisa that suggested a sleep over? That would look hilarious on video, all of us twitching ourselves awake or not sleeping at all. What a hoot!
        Take care!

      • Thanks Brian. I hope I can bug you with more questions…

        Exactly how long off of the damaging drug are you?

        Can you take naps? I’ve not had a single one!

        I’m afraid we would look like an insane asylum if we had a sleepover.

      • Jessica – can you go back to seroquel or remeron for a little while? I mean seriously. Until someone comes across a Dr that can fix this I think the only thing to do is minimize the suffering if possible. I’m so sad for all of us. It’s so awful.😦

      • I’ve tried hard to not take anything, but just couldn’t. I need to take something when it does not let up.

      • Lisa,

        Honestly, they don’t work for me anymore and I’ve reached a point where I’m now terrified of all meds since basically all of it has shown to cause these issues. If I’m in a bad wave like I am now, mirtazipine will give me up to 3/4 hours for 1-2 nights, then do nothing after that. Just not worth it for me. Last night was so damn bad. Adrenaline rushes and jolts in td chest were awful- felt like throwing up all night. 2 hours sleep.

      • Zoloft may work for you small dose 25

      • Is it working for you Mark? I’m trialing endep or elavil in the states and low dosage 5mg helps me sleep. Still not great but gets me nice and tired. I actually take it after the sleep starts come and know I might be in for a long night. It seems to work quiet quickly for me.

      • I only used the drug that caused this once; it was a gram of a research chemical that was like MDMA (ecstasy). I don’t even know what it really was because there were no ingredients listed on the package. For the first two years I couldn’t take naps, and then the equivalent of a nap was me twitching five or six times while trying and somehow feeling rested because it seemed as if I almost fell asleep. I can take naps now sometimes, but other times its like what I just described. I was able to take a two hour nap yesterday but I think its because I have a cold. I say ‘I think’ because it doesn’t seem like a cold but I’m groggy and can sleep at night (and take a nap) which for me (an insomniac) was when I always got my best sleep, when sick. I just came back from Florida so maybe I have the Zika virus! Who knows, but I’ve been sleeping great the last three nights with only antihistamines. It will cycle around though and I’ll be back to the usual tossing and turning.
        Feel free to ask questions anytime. Take care!

      • So, has it been 3 years with the twitches? Crazy that it took 2 years to have a nap, but I believe it. At the rate I’m going, I would be happy if it ever happens. It just seems like a luxury that ill never have back. But really, the least of my concerns as I just need normal sleep at NIGHT! I’m having one of the worst days I’ve ever had today. I really feel like I’m dying today. I wish I was being dramatic, but I’m not. Just nuts.

      • Mine and Brian’s started like exact same time we talked about it way back . 3 yrs for me . Testosterone cause mine no doubt . Hormonal . Once your Cns is messed up it may never go back like it was . I’ve seen 40 doctors . The Cns must be slowed down . By your text Jessica I can see you are wound up . I was too . Makes it worse . Find something to slow you down for a few weeks .

      • Can anyone recommend a good video camera with capability for 8 hours of video recording? This dr from Italy wants me to send a video.

      • Jessica – Maybe it’s an allergic reaction or sensitivity that made your immune system overreact? You could ask the Dr about plasma exchange or IVIG. There’s also something called photopheresis. Ithe might work.

      • Hey Brian was that stuff like a white crystal powder type stuff that’s supposed to give you super energy? I took something like that too, before the sleep twitching started. I only took it once as well, didn’t feel anything from it and so I didn’t take it again. But the jerks, twitching etc started after that, just not sure how long after, and not sure there’s any connection…just wondering if it could be the same thing. I still have a full bag of it…you’re supposed to mix it in juice or something and drink it. Can’t remember what it’s called and I have it around here somewhere still. If I find it I’ll let you know. I think I bought it online from a store called powder city so I’ll check there too.

        Apparently I can’t stay away from this place. Still reading posts but haven’t had much to add. Maybe I’ll stick around though and if I find out anything new I can share it.

      • It was a white powder, but it was something (I’m embarrassed to say) that was similar to ‘bath salts’; it was a grey area research chemical sold online as a party drug from a website that specialized in such drugs. Some of the sites do sell PEA in addition to the other stuff, but this was specifically a chemical intended for recreational purposes. In fact, it did give me energy, but it was of a very confused sort. I couldn’t type, certainly didn’t want to drive, but I could talk and talk and talk. The night after i used it the twitches began and didn’t let up for a week straight until I begged a doctor for something strong and received lorazepam. That only worked for about five days before i had to supplement it with trazadone, benadryl and melatonin. Then that stopped working and I was combining those with Lunesta, remeron, and Ambien to get barely three hours of sleep. Those were dark times for me. Gradually i was able to ween off all those pills when i received a prescription for clonazepam and that alone was able to fend them off.
        It’s been a long three years and I still get them and have partial insomnia, but its no where near as horrible as it used to be, fortunately. I never used that drug again that caused it and when they were at their worst I avoided alcohol, caffeine, marijuana, tobacco (it helped me to quit smoking!) and especially any other stimulant drugs. I’ve since gone back to coffee and can drink beer but I keep that minimal; my consumption is nothing like it once was.
        I found this site shortly after Mark started it, and it surely was a beacon of hope, that there was someone else suffering from this. Over the years more and more people joined, and here we are. I had to see a lot of doctors too; it was a neurologist who specialized in sleep movement disorders that diagnosed me, and according to him, stimulants can cause this problem to the CNS. he told me it should go away over time.
        I hope your symptoms gradually ease up, take care!

      • I have the same symptoms but I think mine was triggered by having the flu (severely) twice in a short period of time. I think it made my immune system overreact (and subsequent cns overload). I think huge doses of steroids and plasma exchange could be the fix? My theory is that our bodies are having an allergic reaction (immune response) to different triggers but same terrible outcome (cns stuck in overdrive). Is Mark “the man who cannot sleep”?

      • It’s definitely something with the nervous system that then brings on the breathing issues for me that coincide with the jerks. Mine is so unexplained as I got it out of the blue after waking up in a panic one night. Since then it’s been torture. The jolts have eased alot but the twitches contractions and head noises all come and go and seem to rotate.

      • Interesting Brian. I did read about brain zaps on a recreational drug forum because I used to get them a few years ago occasionally along with adrenaline rushes, but they went away on their own and then came back again. I am not sure the PEA has anything to do with the jerks/twitches etc that I have now. I have absolutely no problems sleeping now as long as I continue taking P5P regularly. I really wish I knew WHY it works for me…I have theories but nothing solid. But definitely know it’s the P5P. Yesterday I forgot to take both my morning and evening doses and started getting the jerks again when I went to sleep. I got up right away, took my dose of P5P and slept fine afterwards.

        I agree with Lisa that we all have different causes that triggered some kind of CNS disturbance or overload, which is probably why it’s so hard to find a one size fits all type of answer to fixing this.

      • Hi Michelle, that’s great that p5p works consistently, I had a few days where I felt it did hellp, bunch afraid to take more than 2 capsule which are 36-50mg each as the bottle. Says take 1. You were taking 200mg right? I’m back on taking endep 5mg as this brain arousals or noises are driving me nuts. Anyone tried endep?

      • Brian,

        Thanks for detailing your ordeal. It’s great that you actually found a doctor who recognizes this condition and knows it can take some time to resolve. I have been to 30+ medical professionals and while only a few of them understand how dangerous benzos can be, none have seen anything like this. I recently saw a second neurologist and he just described what I’m going through as “whacky.” I did see an addiction counselor who described with pictures how damaging drugs work in the brain and that they can take SEVEN YEARS to recover from. I’ve heard similar things online. I see severe cases recovering from benzo damage around the 3-5 year point, so hopefully the same is true for you. I’ve only heard of a few people beyond 7 years still having issues, but I know better than to believe all that I read (they may just be a natural born basket case). Yesterday was a year off of clonazepam. I am sleeping 1-2 hours each night for 5 nights now and ready to pull the plug on myself. I have the most amazing life, yet its so miserable. My family is so worried about me as I’ve taken a turn for the worse. My only hope I have is the very FEW successful cases like yours… Which is incredibly difficult when hardly anyone in this world of 7 billion people has this, especially as severe as me.

        Just curious if you have reached the point that you could drop all sleep meds and still get enough sleep? I wonder if that could accelerate healing for you? If something helped me, believe me, I would take it! None of it works longer than a few days before it completely poops out. I’m sure its my brains way of telling me to leave it alone.

      • Hi Jessica,
        I was that bad at one point, where it simply felt like I couldn’t go on, my sleep was in such a miserable state. Like you, what worked for a couple of nights stopped working, so what I did (against the neurologist’s advice) was what he called ‘poly-therapy’. I stockpiled sleep medications I sourced from wherever I could: friends, the internet, family, etc. At one point I had over ten different sleeping pills on hand so that I never got addicted to one. To this day I still have at least six of them, but I am fortunate to mostly use antihistamines at this point, and if pressed I could probably sleep a few nights a week without them. To be honest I hate the pills but I NEED the sleep, as we all do. I do a sleep journal, charting what I took and how much sleep I got, and right now I’ve mostly been using benadryl, one tablet when I awaken after three-four hours of sleep. That will change, it always does, but I’m grateful for it when it happens. I just went through mild withdrawals about a month ago and plain and simple they suck. When the twitches come back I have to resort to using a strong medication because I run a business that is seven days a week and ALWAYS need my sleep. Its why I take sleep med’s even when i might not have to: I have to get up and work everyday.
        I know where you are at, I was there and (to a lesser degree) will be there again. The twitches always cycle back around, but they get better over time. When you are in the thick of it it seems as if it won’t get better, but it will. I was used to getting three to four hours of sleep a night for over a year; I was dizzy, grouchy and miserable. There is a drug that helped me, but it is a benzo-type of drug, actually a theinediazepine (spelling might be wrong) called Etizolam. It is not FDA approved in the USA but is prescribed in Italy, India, Japan and Spain. It is highly addictive but it works very well at shutting down the twitches. I hate to recommend something with abuse potential but it really helped me get through the worst of this and I could buy it online through ‘nootropic’ websites. It’s legal, so there is no worry of breaking the law. Be warned: HIGHLY addictive!! Also, if you had troubles with benzo’s, it might not be for you. It really helped me though, and if used two-three times weekly only minor withdrawals will be incurred. It’s what I just had to withdraw from; it took about three days, the first day being the worst.
        I really hope you begin to make improvement; trazadone also helped me, and remeron. You might try seroquel if you already haven’t. I found I could buy a lot of sleep medications on line without a prescription but USE THEM WISELY! I hate to recommend this (as I already said) but that is how I got through. Etizolam worked so consistently for me was why i used it more than the others, even the clonazepam. It has a shorter half-life so memory/motor impairment are greatly reduced.
        Be well, and be careful with sleep med’s and combo’s. I blacked out a LOT with my experimentation and bad things followed. I hope you have someone to monitor you, because I didn’t. It was like narcolepsy; I finally slept but I woke up in some strange places. And sometimes medicated sleep isn’t that great, you feel groggy and listless. Weigh out your options, pick the best one. If supplements work for you, use them instead. I don’t want to be the poster child for chemical therapy, I’m just telling you what I did because at the time I couldn’t think of anything else. P5P sounds promising, as well as other dietary supplements I’ve read people have used. If you have the time, try those first. I didn’t, I needed relief immediately so I went the pill route, as you can see, at my own peril.
        Take care, I hope you get better soon!
        Brian

      • We have the same story basically . After 3 yes I just went off Lunesta cold turkey not one side effect . FYI . I have 200 pill bottles . Have it all there and you have peace of mind if you need it you can take it . Xanax xr will knock you out trust me .

      • Yeah but some of your stash must be expired. Not still 100% effective.

      • I’m back on clonazepam 1 mg for the past week while I wean off gabapenti. Which does not work for me. Last night it took me 5 minutes to fall asleep and I slept 12 hours nonstop.

      • Hi Lisa, it must’ve felt great to sleep that long. Clonazepam worked well for me and that was only for the 4 weeks i took it and only needed 0.25.. Zopiclone was working also at the time and just was worried to continue the clonazepam after hearing the stories.

      • Ck – if you have any I would recommend 100 mg gabapentin 1 hour before bed then 1 mg clonazepam 1/2 hour before bed. See what happens. You’re not going to get addicted or withdraw off 1 night of it. If you’ve tried both meds before with no horrible reaction then you know you’ll not be worse off. Unfortunately I’m using clonazepam to get off gabapentin because it doesn’t work by itself. Only helps me sleep longer with clonazepam. However you cannot stop gabapentin cold turkey after 2 months of use so wean it is. Then I will be cutting back clonazepam again too. For now the week of sleep with no symptoms is great even if short lived. Try it.

      • Hi Lisa, I do have gabapentin and at times worked on its own. I took half tab Zopiclone last night as my p5p, Melantonin, and 5mg endep did stop the jerks. I only managed just under 4 hrs will all that, but that pretty much all I get. I did wake up hot and a little sweaty. I’ll see how things go. Really getting over the inconsistent nights I’m having. Buy that’s expected with this condition.

      • Hope you continue to get relief🙂 How much p5p are you taking? I was scared to take more than 100mg.

      • Lisa Ive only taken 100mg in one dosage. Worried to take more also. I know Michelle takes more.

      • Any problems with 100? I’ll probably take 200 when I’m switching off clonazepam in about a week. I worry about over supplementing too.

      • They say after years they may lose like 2 percent .

      • Hi Mark,
        This is definitely a juggernaut you created; so many people have found this site over the years to air out their problems regarding sleep issues that some doctors can’t or won’t give credence to, or simply baffles others. I am so lucky to have my fifth doctor be a neurologist who believed what I told him and was familiar with the condition. Now I’m three and a half years in, and to see all these people with varying symptoms…staggering. Thank you for starting this so others have a place to vent their frustrations at what truly is a confounding physical ailment. It was a beacon of hope for me when I found it simply because it was nice to know there was someone else out there suffering from something like this, that I wasn’t all alone. Thanks again. So how are you doing? Sleeping pretty good these days or enjoying brief periods of respite before it descends again? I hope to hear that all is well.
        Take care,
        Brian

      • Brian-

        People like you are so lucky that the sleep meds don’t make your symptoms worse. I’m glad they have helped you all these years. I did try trazodone (does nothing) and seroquel and mirtazipine. Both of those quit working and seroquel caused some severe breathing issues. All of the meds including Benadryl give me a hangover the next day. It’s just awful. I live on 0-2 hours sleep during the long waves and on 3-6 hours sleep during the rare breaks. I hope the next 12 months works out better for me.

      • Jessica you need long term long lasting anxiety reduction

      • Mark,

        Don’t we all? I’m guessing you’ve read my entire story before and know that I have tried everything… Even beyond the meds. Stellate ganglion block, Wallace fisher device, neurofeedback… The list goes on. If you are suggesting that I take an anxiety pill (the same thing that got me in this mess), well, that would just be suicide because I’m not going through another withdrawal.

        Btw, I had zero anxiety (my entire life) before my first dose of clonazepam. This is all drug related for me.

      • Hi Jessica,
        i apologize for recommending anything that is related to a benzo; apparently I keep forgetting that that was what started the twitches for you in the first place. We’re all on here for a common reason, although that reason has different causes for all of us. Thanks to Mark we have a community in which to vent, it would help if I paid more attention to what I read from others.
        Although I may sound like a success story because the twitches have somewhat subsided I only found relief via pills that suppressed my central nervous system. The advice from others regarding blood tests, supplements, nutrients and minerals is more useful in the end.
        I hope you get closer to an answer and find the relief you need.

      • Thanks Brian-

        I hope my comment yesterday didnt sound like I’m upset with anyone for their suggestions- I know people are going to recommend what works for them, and that’s ok. I was, and am, in such a dark hole so everything I say is going to sound negative. Basically, im pissed at the medical community for allowing this to happen to people like me.

        Another horrible night and to make my life more miserable, I have nightmares when I do sleep. Last night, my dream was that a family meeting was called to let me know my husband is leaving because he can’t take this insanity anymore. Though my husband insists he will never leave me, I can’t help but wonder. Strangely, the Alarm clock went off while my thoughts were swirling about my dream and matchbox 20’s song “I’m not crazy” was on.

        Is the Mark who posts regularly the man who can’t sleep? I thought they were two different people.

      • Hi Brian, I don’t think it’s Mark who created the site. He has only had the condition for 3 years. Tmwcns seems to get on the site here and there, then disappeas. We have asked him questions when he got on but then goes AWOL . He did mention he is still suffering but, doing a little better. I guess it would be hard to be on here constantly and answer all questions. It might be good to update the main page with any new meds his tried or, what is working at the moment. Ttmwcs has had this longer, according to the blog.

      • I’ve read postings on drugs.com and many take clonazepam and other benzos to relieve anxiety and insomnia. People give it a high rating for effectiveness. But someday if they decide to go off, both of those will come back tenfold. Look up “natural remedies for anxiety”. There’s quite a few suggestions that might help you alittle.

      • Hi Mark – what’s the highest clonazepam dose you’ve ever had to take? My jerks are severe and I’m just wondering if anyone takes as high as I have to sometimes.

      • What is weird is I never get addicted to klonopin . I can drop it cold turkey .

        I usually take .5 to 1.5 if it gets bad . I know everyone is different but that I believe is the safest benzo from reading . But I think it’s best to pick a dosage and stick with it every night for months this lowers systematic anxiety . I don’t think it works that quick .

      • Anything less than four hours of sleep and I feel like I’m sleep walking; six hours has become my new normal. I’m sorry all those med’s leave you feeling hungover. Take them long enough and that feeling goes away! I used to feel hungover after all of them too. Now I’m just grateful for the sleep they give me, however much that is.
        Take care, bear with it and it will get better!

      • We have PSM (Propriospinal Myoclonus) one of the newer parasomnia disorders. Look in some of the sleep journal studies published from the University of Italy. Some of the case studies fit mine to a tee. It’s a disorder of the sleep wake transition.

      • Hi Lisa, I’ve always thought I had that as many cases seem to happen around the mid 40 mark.

      • I’ve thought the same thing as well. I wonder has anyone here tried anticonvulsants such as levetiracetam (Keppra), valproic acid (Depakene) and primidone (Mysoline)?

        These are listed as the most common anticonvulsants used for treatment of myoclonus.

        Maybe they’d be worth a shot for those who can’t tolerate benzos or haven’t had success with other medications or supplements.

      • Hi Michelle, many on here have used them with success especially Keppra. They do come with there own side effects. I believe Alex on here is using low dose Depakote with success. I’m having luck with endep. Last 2 nights took only p5p after a few jerks and fell asleep. First night slept for 5 hrs second nights 2-3 and partial Insomnia after that. I’m taking 100mg at night only.

      • Hey CK that’s great to hear. I know you said you are afraid to take more than 100 mgs of P5P and I think that’s fine. I have taken 200mgs for months now with no adverse effects so I guess for some reason my body really needs it and benefits from it. I have read that 100 mgs is the upper end of recommended dosage but that people with certain conditions have taken as much as 150 mgs (one capsule 3 times a day) with success. I would say just listen to your body and go from there. I would recommend to anyone trying a new supplement that could potentially cause adverse effects to start low and increase slowly to see how the body responds and how much can be tolerated. P5P is also water soluble so any excess should be excreted in the urine. I sometimes wonder if I even need 200 mgs a day or if I could lower it and have the same success but I don’t like messing with a good thing when it’s been working for me.

        Not sure what endep is. Do you take it in addition to P5P? Does it help you fall asleep or stay asleep longer? Either way, super happy to hear you are having success with something!

      • In case you’re interested here is a pretty detailed article on P5P and how it can be of benefit, as well as some of the dosage recommendations mentioned for specific conditions (unfortunately ours is not specifically mentioned) It’s an interesting read. http://www.anh-usa.org/the-fda-and-vitamin-b-6/

      • Oops, wrong link…this was the link I meant to send:

        http://wholehealthchicago.com/2009/05/19/vitamin-b6/

      • Hey Brian, I found it. It’s called phenylethylamine-hcl. Is this the same stuff you took?

      • That’s exactly what I’m going through. I tend to sleep quickly when I don’t have sleep starts these days but wake up no matter what I take 3 or 4 hrs later. I’ve had many days in a roe where I don’t get a jerk or twitch and feel normal but still do not get more than a solid 4 hrs. It’s driving me nuts as the nights I don’t jerks I wish I could be get more sleep.. I’m learning to live with it but hate the feeling of being tired all day coming from someone who was overly active and never stopped..

      • Hi Jessica, i had the same all last night. 3 days of no twitches and jerks but still only managing 4 hrs broken and last night had thr internal type sleep starts and some buzzing. It feels sometimes like a bowling ball has dropped inside me.. So tired I feel like I could fall over. Hate this crap.

      • I’ve been contacted by a scientist/dr in Italy that specializes in sleep neurology. Well see if she has any suggestions.

      • Let’s hope Lisa. It would be great if we can work out where and what brings these jerks on. Have you tried Remeron yet?

      • I love you all dearly. Like family. I’m not leaving this group until we’re all dead or cured. No contrast MRI for me because I’m allergic to the gadolinium contrast. Still need to get to the dr about mirtazapine. Switched to clonazepam again to wean off from gabapentin. Gabapentin does not work for me at all. Sleep like a champ on clonazepam but longterm it won’t last (and the terrible withdrawal). Ck I forgot what you said your experience is with clonazepam. I might buy an expensive video camera to see how this actually looks during the night. I’m going to push for the plasma exchange treatments.

      • All, when you got an MRI done was it with contrast? I will be doing another one soon as the previous one was done 12 months ago without contrast. I don’t know if it will show anything though.

      • hey CK

        You once told that about your other health issues. Are they gone?

        Have you tried buteyko therapy yet, it seemed to have helped me.

      • Hi Bryan2, I do the various breathing techniques especially buyteko and definitely feel better during the day even on such crap sleep and experience less anxiety and short breath, but unfortunately the sleep starts are still there. I am having some jerk free nights though and the jerks are less intense to the point I don’t feel them as bad most nights. I seem to get more sleep starts where I get that internal drop/jerk feeling that wakes me and brings on the anxiety and shortness of breadth straight after. How often and how long are you doing them for?maybe I’m not doing them long enough. It is great that you are seeing progress. Are you getting good hours sleep?

      • I have been able to sleep pretty well for the past month. Average 6 – 8 hours sleep. The broken sleep sessions have disappeared.

        Sometims i get a jerky Night but then I take knolopin.

        I train whenever i can. Average i am training 1 hour a day

      • That’s great Bryan2. 6-8 hrs is amazing.. I could only dream about those hours. Prior to all this I was getting 7 to 8 straight through.

      • Ck- I know, this misery has made me incredibly depressed today after so many adrenaline surges and spasms last night. I looked at my sleep diary and finally averaged my sleep time for the last 6 months. Each month I have averaged approximately 4 hours broken sleep. I actually thought things got better this past month, but apparently my bad days were enough to keep my average down to 4. Seems my brain finds a way to keep both of us sleeping only half of what normal people get… Minus naps. This blows. I’m inches from finding a cliff to jump off of- again. So tired of wanting to just die when I have so much to live for. Sorry if this bothers anyone here- I’m certain I’m not alone.

      • Brian- hopefully I didn’t miss something you said but do you have to take any medications or supplements currently? Or did they just go away on their own? Glad your doing goOD. Thx for update.

      • Hi Lisa,
        After three years I can sleep with only using antihistamines, but still take clonazepam if I have to. I think you are the one who asked if I avoid the drug that caused it and yes, I certainly do! I also take b complex, but I’m not really sure if that has helped the jerks or not. And for me it has always been the sleep movements that have been a problem, not breathing issues, head noises etc. just the lousy twitches!
        Take care!

      • I so hear you Lisa, gabapentin doesnt do anything for me either. I need to take it with a sleep med and even last night only got 2.5 hrs. I couldn’t stop crying last night as my waves are so crazy they are doing my head in. No haven’t looked into any of those.

      • Ck-would like to know how you are doing lately?

      • Hi Lisa, I am still up and down and having some better nights lately. I am taking 2.5mg amitripline (endep) an older antidepressant when needed. It is a small amount compared to the starting dose which is 10mg and it does help. When I was at my worst 10mg wouldn’t work so I am glad a small amount helps and gets me 5 hours sometimes more sleep. I’m going through phases where the jerks have settled and I get to sleep, so really praying it continues. Sleep maintenance seems to be more a problem for me. I am also taking 1000mg Taurine in the morning and 6mg biotin. How are things with you Lisa? I haven’t heard from Michelle, I wonder how she is going?

      • Hi CK,

        I am doing good. Sleeping is back to normal. I had a couple of days where the twitching came back after taking apple cider vinegar and again when I ran out of P5P for a few days (but I took gabapentin in place of taking P5P and was fine). Now I have P5P again and I’m sleeping great with no twitching or jerks or anything. I posted yesterday about magnesium and histamines but maybe you missed it. I just saw I missed one of your posts before asking how I’m doing…sorry. All is well. Glad to hear you are getting a little more sleep than you were before…anything that works even for the slightest bit of help is great!

      • So glad you’re getting some relief CK.

      • CK-Glad to hear your doing better. Me not so much unfortunately. Maybe I could ask my Dr about the amytripaline. What do you think it is about the med that works? Thx.

      • Sorry to hear Lisa. It’s bloody tough and everyday is a Rollercoaster for me also.
        Last night after a descent run things backfired. I had a big jerk (which haven’t had in a month or do) early that set the rest of the night in a spin. I only managed 2.5hrs after also taking a quarter of Zopiclone. So upset today as not sure whether the extra sugar or decaf coffee I started introducing 2 days ago brought it on or what. I do believe certain foods trigger this stupid condition.

        Endep is suppose to help with nerve issues but also has a real good sedative effect. It’s an old style tryclicic. There are reports that some people have had myclonic jerks or hypnic jerks from taking it but who knows what dosage and duration they were on. Look it up and see. The neurologist had prescribed it at thr time with clonazepam, but like I said never worked back when the jerks were crazy . look into it and see what you think. I hope you gave better nights soon.

      • Anyone ever try salt stick? Look it up

      • Have you Mark? How are things going?

  27. Hey its me again talking about the breathing disorder.

    This time about breathing disorder caused by benzo withdrawal. I found this on benzo.org.uk

    “Benzodiazepines depress the sensitivity of the respiratory centre to carbon dioxide (Gilmartin, Corris, Stone, Veale, & Gibson, 1988) and it is possible that the respiratory centre becomes hypersensitive during withdrawal, triggering hyperventilation. “

    • Benzo withdrawal is straight up hell to most of your body systems so this makes sense. Sometimes it’s unclear what symptoms are related to withdrawal or this condition. My hypnic started before benzo. I wasn’t taking anything at that time.

      • Lisa-
        I hope you are doing ok. Here’s a link to something I wrote today on benzobuddies…

        http://www.benzobuddies.org/forum/index.php?topic=163233.0

        Just a recap of the hell I face at night and what has improved. Hopefully you will not experience half of what I’ve been through. It’s crazy that I’m still alive after all of this… So many times I just wanted to end it. I still have those days, but trying to keep the faith that things will improve.

        I recently had a neurotransmitter test done. It shows that my glutamate levels are sky high (benzos severely affect this). Strangely, serotonin and GABA is nearly normal. Everything else seems go be off in one direction or the other, but I feel that this is a glutamate issue in my case. My GABA levels are just not strong enough yet to counterbalance the the dreaded glutamate.

      • Hi Jessica- Thanks for checking in on me and the benzo post. These damn hypnics continue to be an absolute nightmare (literally). Last night was one of the worst in months. It’s 6 PM and dread about going to bed tonight is already starting to kick in although I’m exhausted. What kind of Dr tests neurotransmitters? Can they treat excess glutamate? I told my Dr I’m willing to try any test or treatment. I really don’t care if it’s dangerous. I think this is affecting me cognitive because last week I was talking to someone and I couldn’t remember where my 15 year old daughter went to elementary school. Like seriously. If someone would have offered me a million dollars I would not have been able to recall it. Also other stupid things like can’t remember how to spell easy words. I’m wondering how CK is doing. He was also having tough time.

      • Hi Lisa. I speak with CK regularly off this site. He struggles daily, like both of us. It’s insane. Are you a benzo buddy member? You can pm me there if you ever need to vent. I don’t check messages here all that much as its hard to sift through to find things. There are plenty of people suffering in a similar way there. This condition sure sucks. The ideas on this site have been valuable; but sadly, nothing has worked for me. It’s hard for me to focus too much attention here as most of the members seem to be tsking a benzo and have no issue with it. I cannot, therefore I try to focus my time with those who have been severely affected by benzos.

        I am seeing a regenerative doctor. I had another one of these tests theough a naturopathic when this all started. The company is pharmasen lab/neuro science. It’s tests all of the neurotransmitters and some hormones. My glutamate, glycine, DHEA and histsmine is very high. Not sure how to interpret it but will find out Monday. One thing that a nurse friend (going through benzo hell too) told me is that my GABA levels may show up normal, but they may not be attached to the receptors as benzos knock them off until they eventually upregulate again. So, this test may prove to be unreliable.

        Please keep hope. It’s the only thing keeping me going. I’ve been reassured by people that this will end as long as we do the right things for ourself. In my case, that means staying off benzos and trying to keep myself as drug free as possible. Most people in benzo withdrawal heal from this shit between 3-24 months. My nurse friend had them bad and got rid of hers around 2 years off. Hers never gsve her a break until 4 months before they ended.

      • I may have found another reason why supplementing with P5P and Taurine has helped with my muscle twitching at night. P5P and Taurine are cofactors of magnesium. This means they help magnesium to be absorbed into cells. You can have normal levels of magnesium in your blood, but it’s possible that the magnesium isn’t able to get into your cells where it needs to be. P5P and Taurine help get the magnesium where it needs to be. In doing more research I have also found that magnesium malate is one of the most bioavailable forms of magnesium and that citrates are not so good for your body (such as mag citrate, potassium citrate etc), in fact sodium citrate, which is what these minerals are mixed with in supplements containing citrate have a potential side effect of muscle spasms. In addition, sodium malate can safely be taken in larger amounts without causing diarrhea, so if your body is low in magnesium, you can supplement with way larger amounts with magnesium malate without having any issues.

        Another interesting thing to note: Jessica mentioned having high histamine levels. High histamine levels can cause all kinds of problems randing from allergies to neurological problems. Here’s a chart that shows just some of the issues that high histamine can cause: http://secondopinionphysician.com/wp-content/uploads/2015/09/histamine.biochemistry.natural.treatment.jpg

        I was also told by a naturopath in November of last year that I had high histamine and low copper. Low copper is one thing that can lead to high histamine. She had me supplement with copper and for about a month and a half I felt better than I had felt in my entire life. Super high levels of energy, perfect sleep, etc. I don’t know what caused that to change but all of my issues came back after that month and a half. At the time I wasn’t trying any other supplements. But B6 or P5P, Vitamin C, and B Vitamins as a whole, help support the body in breaking down histamine by raising levels of DAO, a substance that breaks down histamine. DAO is made in the gut and can also be bought in supplement form.

        Histamine levels can also be raised by high cortisol and high estrogen. I recently (like 2 weeks ago) found out I have high estrogen. High estrogen can be caused by chemicals used in shampoos, makeup, cleaners, plastics (these are known as xenoestrogens because they mimic natural estrogen) as well as soy products (soy isoflavones, soy milk, soy proteins in protein powders etc). This means men can also have elevated estrogen levels because of all these “fake” chemically induced estrogens in our environment and products we use.

        Methyl compounds, such as methionine, glytathione, Sam-e, and methylcobalamin (the most bioavailable form of B12) also help break down histamine. If you have high histamine, your body will use up methyl compounds really fast in an effort to lower your histamine levels, which could leave you depleted of these things, leading to undermethylation. Both high histamine and undermethylation are also connected with muscle twitching and shortness of breath which some here have experienced.

        I don’t know if this info will help anyone here but figured it can’t hurt to share and hopefully it will help someone. Good luck everyone.

      • Hey Michelle,

        Your post is very interesting. I found something similar with hyperventilation syndrome.

        Overbreathing causes the bood’s PH to rise: respiratory alkalosis.
        Due to this, calcium binds with a protein called Albumin, resulting in less free ionized calcium. The total calcium levels are normal, however they do not reach the cells, as they bind with Albumin due to respiratory alkalosis. Perhaps this is also true for magnesium.

      • Hey Bryant,

        Is there anything to do to help?

      • for treating respiratory alkalosis and chronic hyperventilation try buteyko.

        Visit the website of Artour Rakhimov (normalbreathing), he has tons of information about what hyperventilation does to the body and how to treat it.

      • This might explain why plasma exchange or IVIG treatment might work.

      • Lisa, I would try anything if I knew it might make things a little better. I just want to get to sleep without it being a battle and these waves are crazy. Do you get tongue twitches where you swallow involuntary at all? I get those every morning fromn 4:30 onwards and have for ages. Driving me nuts?

      • CK-I have had that before. Do you get twitching during the day? Also sometimes I think the twitching and insomnia are separate problems. I used to think it was the twitching that prevented sleep. I worry my body is losing the ability to sleep? “Twitching” does not even accurately describe the night time movement. It is full on jerks both limbs and body involved. I start to panic before bed because it’s so scary. I’m sure that doesn’t help. Do you think yours are that severe?

      • Also I would just like to put out there that I am willing to take anyone’s call, text or message day or night because Lord knows I’ve needed a lifeline many times in the wee hours while everyone I know is peacefully snoring the night away whIle I’m bawling like a baby trying not to wake anyone up. Its a misery I wouldn’t wish on my worst enemy. Sometimes I think it will be the death of me.

      • Lisa; From what I recall, you’ve had repetitive jerking at sleep onset that started out of the blue and caused chronic insomnia? And then you got relief from taking clonazepam for 2-3 yrs. I probably haven’t seen all of your posts but you did have a sleep study, right? If so, what was the result?

      • Hi Sylvia-I did have 2 sleep studies. No apnea or irregular breathing. 12 arousals per hour due to movement. When they hooked up the eeg to see if it was seizures I couldn’t get back to sleep. They recommended staying on clonazepam.

      • Lisa, my sleep doctor (an older British man) encouraged me to stay on clonazepam when I mentioned tapering but I’d rather not. Glad I got to see his NP on the following visit and he took more time with me. Thank God for the NP’s! One of them got me into the sleep clinic to begin with.

        At your age, maybe it’s hormones out of whack. I had that problem in the past too, started getting shorter sleep off and on in my early to mid 40’s, then worse when I was close to 50. Low dose of combined estrogen and progesterone gave me relief. I took it just a for few months, then again right after menopause for about 2 yrs. Think I took Premarin or Prempro, something like that, it was so long ago. Slept like a rock.
        Have you seen a naturopath doctor or endocrinologist to test your hormone levels? Nothing to lose unless you’re paying out of pocket.

      • Hi Lisa, the big jerks have settled alot. I had one the other night early in the night which then sets the rest of the night out of whack. I find I get the big jerks more often when laying on my back. I still get the twitch jerk on onset and sometimes I don’t even feel my body move just like an internal jolt. I’m grateful I’ve had many nights where I’ve slept without meds but then they come back and stay for sometime. I too have many nights where I cry all night and guarantee most on here do. Nothing worse than feeling exhausted and not being able to sleep. I might try Melantonin again but always find certain meds to either not help or make it worse. I wanted to check if anyone has had any luck with valerian.

  28. Lisa; also, did you ever work with chemicals or live near an industrial area? I’ve seen articles about smart meters and cell phone towers (EMF’s) WiFi messing with people’s nervous system. By chance do you live in an apartment complex, anywhere near a row of smart meters? Or are you close to any cell phone towers. It might sound far fetched but there’s been lots of complaints.

    • I live in my own house in a small town. There is a manufacturing plant in our town but idk if that would cause anything or not. How has your sleep been Sylvia? Do you take anything these days?

      • My sleep has been better in the last month or so but not every night. Last month my sleep clinic increased the pressure on my cpap machine last and also changed it to variable pressure. This better controls increased apnea when I shift to my back. I think it’s helping but improvement is gradual. My sleep averages 5.5 hrs, not as fragmented as before and I get sleepy some evenings. I take 0.25 mg of clonazepam but not sure if it even makes a difference anymore since I’ve probably built a tolerance. Some evenings I fall asleep without it in my recliner for awhile without any jerks or head noise. I need to quit that habit since it can reverse my progress with cpap, supposed to always sleep on the machine. Plan to try and taper completely from clonazepam soon when nights get cooler, hoping I won’t feel much effect. Had withdrawal headaches while tapering from 0.5 to .25 mg last month. Then this month I had these stabbing little pains in my feet and slight burning sensations on one knee for awhile. Did you have that too? Sure hope once I’m completely off, I can get at least the same amount of sleep with no jerks or restless legs. Still get the intermittent restless legs during the day, usually mild. Could be triggered by certain foods too. Hope you can get some relief tonight. I know what it’s like not being able to drop off for hours on end.

      • Thank you Sylvia. My last clonazepam was about 2 weeks ago. Withdrawal is so weird. I am often wondering what symptoms are from that or something to do with all this other. Glad sleep is going better.

      • Are you taking anything new Lisa? Look into endep or mirtazapine, one of them will help.

      • Thank you CK. I will look into those. I did start Taurine and p5p which might help a little. I also tried pharmagaba but that might have made things worse but it’s so hard to say if it’s just a coincidence. Can I ask you in the last 2 weeks, how many nights have you gone to bed, fell right to sleep, and slept 4+ hours with no jerks?

      • Hi Sylvia, I get the needle price sensations while laying on couch. Usually the foot at knees.

  29. Hey guys,

    Have anyone tried magnesium oil?

    I came across a very interesting article on magnesium.
    The article claims that 80% of the people are magnesium defficient. Only 1% of magnesium is stored in the http://leefbewust.nu/80-van-de-mensen-heeft-hier-een-ernstig-tekort-aan/blood, making blood tests unreliable, as it says nothing about the other 99% which is stored in nerves, cells and muscles.

    Also taking magnesium pills does not work, as the body cannot handle a large amount of magnesium at once: magnesium will simply be excreted through urine and poop.

    In the article she talked about magnesium oil which is absorbed by the skin and an alternative blood test named magnesium RBC test.

    Every time I post a link, the post somehow gets deleted. Does someone know how to fix this?

    • Ignore the link above, it’s Dutch.

    • Hey Bryan2,

      Yes this is part of what I’ve learned about magnesium. I am part of a magnesium advocacy group on facebook and they have a protocol for increasing your magnesium levels and talked about exactly what you mentioned about megnesium not getting into the cells. Their protocol suggests getting magnesium 3 ways so you are getting different sources, as well as taking precursor supplements that actually help the magnesium get into the cells because without those things your magnesium doesn’t get into the cells. They mentioned the same blood test as well.

      So the 3 ways they suggest of getting magnesium is with magnesium oil foot baths a few days a week, epsom salt baths (epsom salts are high in magnesium and your body will absorb it transdermally and taking a good quality bioavailable magnesium supplement along with the supporting supplements that help get it into the cells (P5P or B6, Boron, and sodium bicarbonate. They also recommend avoiding certain supplements such as Vitamin D3 (and others) which use up large amounts of magnesium to convert them into their usable form. D3 for example they say should be gotten through sunlight and cod liver oil supplements if needed because it doesn’t affect your magnesium levels as much as taking a D3 supplement. Really interestint stuff and I think could definitely have an affect on some of the issues people here are having. I have been following their protocol for a couple of weeks now. But it just shows how dr’s blood tests aren’t always reliable because most tests will show the blood level of magnesium but not the cell levels of magnesium. Magnesium blood levels don’t matter if it never gets into the cells where you really need it.

      I actually think taking P5P has helped me more because it helps get magnesium into cells than anything else. Initially I thought it was because it helps boost GABA levels, however I was taking Taurine and Pharmagaba and have since stopped taking them and noticed no change. But if I stop the P5P even for a day the jerks and twitches start again.

      If anyone is interesting in checking out the group on facebook it is called Magnesium Advocacy Group.

      • Interesting,

        What I learned from my research on chronic hyperventilation is that the disbalance between oxygen and carbon dioxide causes the PH of the blood to rise.

        In this process, the kidneys tries to balance the PH by excreting all sorts of alkaline minerals through urine: including magnesium.

        Both magnesium deficiency and chronic hyperventilation inceeases the sensitivity of the nervous system. Perhaps they are linked.

      • They very well could be Bryan…who knows. This whole thing is confusing to figure out and I believe there are probably multiple causes rather than just one.

        That being said I may not have figured out the exact cause of mine but I have figured out what works for me and am sleeping really great now and have been for months. I hope you have as well with the breathing methods you’re doing.

        Hopefully everyone else here can figure out what works for them as well. I have shared what I can in regards to what has helped me and other things that might help others. Not sure any of it has helped but everyone is individual in this. I don’t really feel I have much more to contribute at this point so I’ll be leaving this group. But I sincerely wish everyone here success in getting back to a sense of normal sleep again. It is the absolute most frustrating thing I have ever encountered so I definitely feel for anyone that has had to deal with it for years.

        Take care everyone and hope you all find the answers you need.

      • Thank you for all your input Michelle. I think you said in your last post that you thought the p5p and Magnesium helped the most. Right?

      • P5P helps the most for me Lisa. I have not been regularly supplementing with Magnesium until recently…I sort of took Mg on and off and only recently have I started supplementing with Mg regularly. But I think it’s possible that P5P is helping get Mg in the cells, because it’s one of the things your body uses it for, otherwise Magnesium can just float around in your blood, not getting in your cells, showing a “normal” magnesium level on blood tests yet being essentially useless because without it, the Mg can’t get into the cells where it’s needed. The other reason it could work is it is a gaba precursor. I don’t know 100% why it works for me, these are just my own theories based on a bunch of research I have done, but whatever the reason, it does something that makes the jerks go away so I’m grateful for that. Best of luck to you…I know this is not easy to live with and I really hope you’re able to find something that helps!

      • Hi Michelle, great to Michelle and thanks for everything. One last question, you mention you take only p5p now, is that both morning and night and what is your current dosage.

      • Thanks CK. I hope you’re able to figure this out and get some much needed sleep.

        Yes I take P5P morning and night 200mgs for a daily total of 400mgs. Way above the RDA and has never caused me any issues or concerns taking that large amount over a period of about 4 or 5 months now. If I don’t take it for a day (like when I ran out) I get the jerks again and it’s the only supplement out of a bunch that I take that causes that to happen, so I’m 100% sure it’s what makes the difference for me between jerks and no jerks.

      • Michelle, I read what you wrote about histamine and I had actually been reading about it also because I wanted to see if high histamine levels had any connection to the jerks we are experiencing. Histamine is an awake amine and high histamine levels and high glutamate levels are both linked to restless legs syndrome. It seems that a few of us also experience mild restless legs symptoms in conjunction with the jerks, so I wonder if hypnic jerks are caused by the same things as restless legs, or if it is just a different form or variation of restless legs syndrome. Another thing that I find interesting is that magnesium deficiency raises histamine levels in the body, and I was watching some you tube videos recently of people who said they cured their restless legs just by taking magnesium. So, I wonder if there is a connection here. Also, some people have stated that when they stop taking the magnesium, the restless legs will come back, so they have to supplement with it everyday to get rid of their symptoms. My mom actually picked up some Calm magnesium at the health food store for me when the jerks first started for me and the guy who sold it to her said he cured his restless legs by taking the Calms magnesium and iron for two months and is now able to run again like he used to. So, it could be that the P5P is helping you because of the fact that it helps the cells absorb magnesium, and that possibly we are suffering from thsee jerks because of high histamine levels in the body that could be fixed by taking magnesium and P5P. Here’s the link to the study that proves that histamine levels rise when there is a magnesium deficiency present http://www.ncbi.nlm.gov/pubmed/3111814
        Another thing is that some people on here have said that mirtazapine helps them, and mirtazapine has strong antihistamine effects.

      • I definitely think that could be the case, at least for me. I saw a naturopath about all this last year and she told me my histamine levels were super high. She started me on copper because she said my copper was low and that copper is needed to break down histamine. I literally felt better than I have in my entire life, and all of my sleep issues, jerks, insomnia, adrenaline rushes, breathing issues, etc were gone. That only lasted for about a month and a half and then they came back.

        But the more research I do, the more I learn. And our bodies are a delicate balance. There are some processes, supplements and minerals that use up magnesium faster, and some that support magnesium. P5P and sodium bicarbonate help get magnesium in the cells where it belongs. Vitamin D supplements as an example actually use up magnesium, so people that supplement with either of these could be using it up too fast. I was taking huge amounts of Vit D because I work night shifts and was told to take 5000 IU per day.

        Through further research I have also learned that if your magnesium is low your vitamin D levels will never increase. The recommended protocol is getting mag levels up and getting Vit D through either cod liver oil supplements or sunshine. Some people who were taking as much as 10000 IU of Vitamin D found their levels still remained low until they followed the magnesium protocol for increasing magnesium, and then their Vitamin D came up on it’s own, WITHOUT supplements.

        So I have been doing the P5P regularly but also the recommendations for increasing magnesium (a bioavailable supplement -I take magnesium malate now as citrate isn’t recommended, epsom salt baths and magnesium oil on the skin for 20 minutes every few days).

        I feel there is some connection. And the thing I didn’t understand until recently was how many things could actually throw magnesium levels off by using it all up.

    • I tired it and it did nothing . This whole thing is a hormone issue after 3 yrs there is no question in my mind .

      • Hi Mark – Which hormones do you think are responsible? Have you figured out a way to make this stop?

      • If you take enough drugs it will stop . You have to get it to stop. All of the supplements and all are useless . Mine started when I got on testosterone . Since then they come and go . I’ve met with 40 doctors . It’s hormonal I’m positive . Women going through menopause may get them. It is so weird . I thought for sure it was apnea in the beginning . It’s not . No way . But being on Cpap with lower sympathetic tone . It is something your hormones are doing to your central nervous system . I think people should try like 12.5 mg of Zoloft if you want to experiment. Starting dose is 50 usually . Somehow you must slow the Cns Down and hormones control it . I bet most of the people here are not that young .

      • I was 19 when i got this

      • I was 44..

      • Mark – what do you take when you need to sleep? What treatment did any of the 40 drs come up with?

      • Lisa; Mark may not be available to answer but here’s some of his post from July 9th saying what he was taking then. I remembered it because what works for him also seems to work for me or worked in the past except I take small doses. He’s also said that he has some sleep apnea and uses cpap and so do I. Also, supplements haven’t relieved his symptoms or help only for a short time and it’s the same for me. Here’s something he posted last month;

        “Gaba and gabapentin sent my jerks off the chart . Even though gabapentin during the day made me feel so happy . Last night I took 1 mg klonopin and 3 mg Lunesta as usual . Woke up with big jerk got pissed took another 1mg klonopin woke up again got really pissed took 10 mg volume.”

        I have no clue what the 40 doctors came up with other than the prescription drugs.
        By “10 mg volume”, maybe he means valium. I know 10mg valium is equal to 0.5 mg klonopin or generic clonazepam.

        I’m guessing they told him the same as what they told you at your sleep study.

      • Sorry for the delay. Yes I meant Valium. Here is the deal, I really believe it is Hormones. I have had 3 sleep studies but only one showed mild apnea. Yes I use a CPAP but only because it lowers your sympathetic tone. Central nervous system. Look up DR. Paul Savage. Suzanne Somers writes about him in her books. I met with him 3 times in Chicago 2 years ago.. He told me this is why I sleep better on CPAP, not because of apnea. I also know a Sleep doctor that has her children on it for this very reason. None of them have apnea. She says she has more energy using it and I agree. I assure you unless you have severe apnea this is NOT causing the jerks. Medications can exacerbate them for sure. IN the end I do believe it is prolonged anxiety. Stress. I also deal with frequent urination and after being checked out by over 5 urologists no one can find a problem..So Hormones can make the Anxiety worse I believe. When I took Testosterone for the first time 3 years ago, that is when all of this started. All of my friends have said I am the most Anxious person they know. I don’t think most people would know this unless they knew me well. Changes in Hormones are known to cause jerks. Look it up. Especially in women. It is the change up or down that can cause them I believe. I am toying with very small amounts of Zoloft now. it does not seem to help sleep but I need to stay on it for two months this time to be sure. At first it makes sleep worse which is why I stayed away. However it does seem to help my frequent urination. That I can’t explain totally yet.

        At the heart of it is elevated central nervous system Sympathetic tone not shutting off at night. Fight or flight. That is why Testosterone will not allow me to sleep at all. I am already anxious that is like throwing gas on the fire. You must figure out a way to lower anxiety. It is so hard. The mind is all powerful, especially I believe if you happen to be intelligent. Or very intelligent. Be sure no one knows anything about this. The best Neurologist in the country just prescribed me Klonopin….That’s is all she had after videoing me, talking for 2 hours, ect..

      • Hey mark do Some research on buteyko therapy. There are many reviews of people who solved their anxiety problems with that.

      • Bryan. 2. There may be something to this as I could not even use a nose mask in Cpap because I breathe out of my mouth so hard I needed full face mask . So it may help with anxiety but I’m. It sure this is the cause of the jerks fully .

      • Mark – Do you think this will go away on its own at some point? I went to a neurologist and had sleep study at Mayo Clinic and was also prescribed klonopin. Very discouraging.

      • It’s hard to say of course . I think it will . It’s a Vicious cycle . Mine have gone complete away for periods and then I do something like try testosterone again or some other trigger and they come back . And they stay for months . It has to do with the Cns but no one really knows . My advice is to not worry about taking drugs just take them until they knock you out and make you not care anymore . Take Xanax xr for a week or here and there . That did it for me big time . I got addicted to them . I get zero addiction from klonopin but they don’t stop the jerks sometimes . I’m working on some ideas I’ll keep you posted . Ocd is not good either and I bet we all have a bit of it .

      • The dr I see now wants me to try plasma exchange and/or IVIG treatment. Ever have a Dr suggest either of those? Thinks it might be autoimmune trigger.

      • Something has to work Lisa. Is this the neurologist who suggested it? What are you taking at the moment? Still clonazepam?

      • Ck – No clonazepam in 18 days. Currently 300 gabapentin (even though I don’t think it works), p5p & Taurine. I don’t see my Dr for 2 more weeks to ask about endep or mirtazapine. How has your sleep been? Would you do plasma exchange or IVIG?

      • Hi Lisa, if I knew it would help yes, but I need to look into it further. Ive had it now for 13months and have had good nights jerks free and still trying different meds and vitamins. I sometimes have 3 or 4 night jerk free or where I’m able to sleep after a jerk or 2 and nights I twitch more and get fed up and pop either endep, baclofen, or gabapentin or Zopiclone. I stopped taking mirtazapine for now as felt it gave me a stuffy nose. Unfortunately, I still don’t get more than 4 to 5 hrs of sleep on a good night. It’s like an alarm clock and wake at that time. I’ve tried p5p taurine and not sure it’s made a difference like it has for Michelle. I could only wish. I’m hanging in there. Last night after 3 nights of jerk free I had a bad night and couldn’t work out why, cried for sometime took 5mg baclofen and slept 2hrs…i just can’t win.

  30. Anonymous said:

    Has anybody tried choline? It’s supposed to help turn on the parasympathetic nervous system.

    • Try it and let us know.

      • Christina said:

        Hey all! I’m new at this comment thing… I’m just a desperate mother of a 2 year old that does this every single time he sleeps….. Went to 2 neurologists and they say it’s harmless why am I making a big deal out of. My son has developmental delays now I feel because of this, I mean who wouldn’t if they can’t get sleep!!??!! Idk what I’m even venting about I guess that’s just it venting but this seems lifelong for all of you. And the descriptions I’m reading about how you all feel and all the things you’ve tried I’m totally worried I should b doing more for my little guy. Just don’t know what. Anyways any advice would b greatly appreciated from the mom who watches her son who can not sleep😦

      • Christina-

        Please, whatever you do, don’t let a doctor put your innocent child on a benzo. Look up stories about babies and children who were placed on these awful drugs. I read a story about a toddler who developed severe symptoms from clonazepam and had to have her mother hold and rock her every night just to get any amount of sleep. I cannot imagine my children suffering the way I am. I would do anything in my power to prevent that from happening. How much does your child sleep?

    • Christina; Your son’s iron and ferritin levels have been checked? Last year I was seeing a neurologist (supposedly specializes in sleep) who didn’t figure out I could have sleep apnea. They don’t always figure out what’s wrong. Have you taken him to a sleep clinic?

      This has not been life long for most of us. The sleep deprivation/nerve problems developed as adults and within the last year or more from such things as chemicals, sleep apnea, hormone therapy, benzodiazepines, etc. At least one person doesn’t know the cause.

  31. Have you performed blood tests?

    Test for magnesium in the Red blood cells (not the blood), kalium, natrium, calcium, vitamine B12 and vitamin D.

    Also does he has other health conditions?

  32. Ck – I wonder if you would still have the insomnia with the 100 gabapentin with the 1 mg clonazepam chaser. Not trying to be a pusher but would love for you to have qe hours no jerks and deep sleep. Either way glad to hear from you. Keep pushing on!🙂

    • Lisa, no problem with 100. I might give 150mg a go tonight. Clonazepam would be my last resort. I’m doing what Brian does and polytherapy, with different meds. I even tried pregablin a newer version of gabapentin with not much luck,but at moment trying endep.

    • Hi Lisa, have you tried p5p.yet at higher dosage or has anyone else had luck with p5p, other than Michelle?

      • Hey CK – I’m taking 50mg p5p and also Taurine in the AM. Still clonazepam 1 mg PM. Once I’m off gabapentin and clonazepam, I’m going to try 200 p5p PM. Have you? Does it work?

      • Ck are you sleeping good yet? The sleep is so good with the gabapentin/clonazepam.😦 it will bite me in the ass later. Hope you are well.

      • Enjoy that good long sleep Lisa! Hope some doctor comes up with the right treatment for you.

      • Thanks Sylvia! I’ll take what I can get while it lasts🙂

      • I’m trying to stay positive but honestly just want to say fuk it sometimes. Sorry for the vulgarity.

      • Hang in there Lisa, I’ve been down that road many times, we all have. It’s truly sucks to deal with this crap.

      • Lisa; I still remember this one night in early 2015. I jerked awake for hours on end until I started to cry (I never cry). Finally fell asleep for maybe 2-3 hrs. But I was so determined not to take anything that night and I didn’t. I’ll say a prayer for you tonite.
        Wish I could do more.

        I read a sleep apnea board posting where a lady (40 yrs old) said she’d had insomnia for many yrs. Took 1 mg clonazepam for yrs, claimed she didn’t know about dependence. And I know for a fact that doctors don’t tell you. So after finding out, she tried to taper and couldn’t. A doc switched her to valium because it’s easier to taper. Then she managed to get from 20 mg of valium (=1 mg clonazepam) down to 10 mg valium. Said she suffered but was able to tolerate. Just thought I’d tell you.

      • Choices are to suffer or takes the meds. Pick one that doesn’t have side effects for you. Klonopin give me none but Xanax XR does.

      • Clonazepam does give me hideous side effects and withdrawal but is the only drug that will stop jerks so far.

      • Which side effect? I’m curious.

      • Twitches, tired, memory, concentration issues, crabby sometimes…when I’m withdrawing I have horrible anxiety, insomnia, breathing issues, and actual seizures. Basically the closest thing to hell that I can imagine.

      • Then every drug affects every person differently. That is apparent.

      • Mark, you still on zoloft?

      • I think I have built up tolerance. I’ve had this for 3+ years. Mostly treated with clonazepam. I agree with you about Xanax. Take that for too long and straight to the psych ward.

      • I think I read that you can’t actually overdose on it. Just can’t mix it with anything. If you have to get off make sure you have handfuls of valium. That seems to be the extent of the research.

      • If I cant sleep I swear Ill take 20 MG if I have too.

      • Haaaaa Mark omg. I need a good laugh. I probly would too.

      • Thanks Sylvia. And I really appreciate the prayers.

      • No Lisa 100mg is max I’ve taken at once. 100mg Gabapentin and quarter Zopiclone gave me a good sleep 2 nights ago and felt I felt good. Last night decided to try without anything and had probably my best night but woke about 3 times and managed to fall back asleep. I did wake with anxiety those 3 times, so don’t know what was going on. It varies every night. I had alot of jerks before bed though and took over an hour to sleep. I’m mixing up my meds until I find what works well for now. Good to hear you are sleeping well, hopefully clonazepam gives you no grief.

      • Good for you CK! Sounds like finally you’re making some headway, hope it leads you out of this.

      • The damn half life is so long on most drugs a person doesn’t know what’s what if you know what I mean.

      • My night was crap last night. The. Jerks.on onset eventhough mild wouldn’t let up. I managed 3 hrs of sleep after taking 100mg gabapentin and 5mg baclofen at 3am..I’m so over it. I haven’t had the onset jerks this bad for sometime now. . Sometimes I think I should take a benzo and be done with it. I have them all there at my disposable.. Lisa are you iu on Facebook at all?

      • Yes I am. Can I send you a message?

      • Lisa, send me a friend request. Do you have my full name. If not send me email to Ckouso14@gmail.com.

  33. Hey it is me again,

    Although I am aware that everyone’s cause of this disorder is different, I really do believe that the majority of us can benefit from practicing Buteyko.
    I know that this disorder is mentally killing, but I think we all should be careful with overdosing ourselves with drugs – although it might relief some of the symptoms for now, it will hurt us sooner or later.

    First of all I would like to adres the problem of Chronic hyperventilation syndrome. Please note that this cannot be checked with normal respiratory tests, as these tests are only focused on oxygen levels and not CO2 levels.

    It is estimated by western health experts that 30% of the population is breathing too much. According to Buteyko researchers, this percentage even goes up to 70%.

    ——————————————————

    Chronic hyperventilation syndrome is also referred as the fat file syndrome:

    “This is the fat folder syndrome, where you have numerous medical tests that are often for different body parts or systems, and the results never show anything conclusive to be causing the symptoms. To add to the turmoil you become convinced that the whole world imagines that you are a hypochondriac or because you seldom feel really well, that you have a major illness that has not been found because the doctors are looking for the wrong cause.” – buteykoworks . com

    The majority of the symptoms that chronic hyperventilation causes are often symptoms that are unrelated to breathing. This is because CO2 impacts every part of the organism. The major functions of CO2 are:

    1. CO2 relaxes smooth muscle
    Therefore a lack of CO2 causes, a constriction of blood vessels (heart palpitations, cold hands and feet), construction of airways (asthma), constriction in the bowel (upset gut, digestive problems)
    as blood vessels constrict, blood to the brain has been reduced. This causes the sympathetic nervous system to turn on, causing anxiety, stress and other neurological conditions.

    2. CO2 calms down motor axons
    People that over breathe may experience parasthesia (pins and needles on the skin), fasciulations, spasms.

    3. CO2 is needed as a catalysts for many enzymes
    A lack of CO2 therefore can cause food intolerance and even diabetes, because the organism is not able to break down certain chemicals due to malfunctioning of the enzymes.

    4. CO2 is necessary in order for oxygen to be released to the cells.
    A lack of CO2 prevents oxygen to be released from Hemoglobine. Oxygen is therefore floating in the blood but not released to the cells, which causes overal fatigue.

    5. CO2 regulates the PH of the blood together with O2.
    A lack of CO2 causes the PH of the blood to become more alkaline. Due to this, the organism tries to get rid of other alkaline substances in the blood to maintain a neutral PH. This results in depletion of Magnesium, Zinc, Natrium, Kalium etc. etc. It also minimizes the availability of ionized Calcium. This in turn causes a variety of symptoms and messes up with the whole nervous systems, as it needs these minerals for internal communication.

    ——————————————————

    Quote from Dr. My Hill. co . uk

    “Hyperventilation is a difficult diagnosis to make clinically and that is why having an objective test of hyperventilation is so useful. People who hyperventilate deplete their levels of red cell carbonic anhydrase and the ratio between the activity and the protein gives us a good indication of whether or not hyperventilation is a problem.
    Hyperventilation is also difficult to treat and so this test tells us how much effort we have to put in to correcting this. Essentially, there is a two-pronged approach – firstly biochemical and secondly physical:
    Biochemically, red cell carbonic anhydrase is a zinc dependent enzyme and will be depleted simply by zinc deficiency. Furthermore, a low red cell carbonic anhydrase drives hyperventilation and so this is another example of one of the many vicious cycles seen in patients with chronic fatigue. Zinc is best absorbed at night and I recommend taking 30mg last thing at night on an empty stomach. This should be in addition to zinc taken in my physiological mix of minerals, Mineral Mix. Please see Multi Mineral Mix
    Low magnesium often drives hyperventilation and again magnesium is present in my physiological mix of minerals in adequate amounts. Absorption of magnesium is enhanced by vitamin D, hence the need to continue with vitamin D supplements or ideally sunshine. I like all my patients to take 2,000 i.u. of vitamin D or get a good half-hour’s sunshine daily.
    Low potassium is also common in hyperventilation; furthermore in the short-term hyperventilation results in a respiratory acidosis and such pH changes may well be responsible for many of the peculiar symptoms seen in hyperventilation. I recommend using potassium bicarbonate as Sando-K, 1 tablet twice daily to help redress the pH balance – this is available on prescription as Sando-K.
    We now come to the physical interventions. What seems to go wrong in hyperventilation is that the respiratory centre appears to be set incorrectly and this of course partly explains why hyperventilation continues throughout sleep. The idea is to use breathing exercises to consciously reduce and slow the rate of ventilation thereby increasing carbon dioxide retention. Initially the respiratory centre rails against this and tries to make the sufferer breathe more, but this is what must be resisted. If this is done consciously for long enough then eventually the respiratory centre readjusts to tolerate a higher degree of CO2 retention. There are many ways in which this technique can be learned – the best known is probably the Buteyko method and there are many practitioners trained to undertake breathing retraining.

    ——————————————————

    In Buteyko there is simple test to see if you are breathing too much or not, which is called the Control Pause.

    Basically, the respiratory center in the brain constantly measures the CO2 levels in our blood. When CO2 rises, our diaphragm gives us the impulse to breathe. However, due to processed foods, stressed lives, lack of physical exercise and a misconception that taking a deep breathe is good for you, the tolerance of the respiratory center to CO2 has become much lower compared to 100 years ago.

    The control pause is to test the state of your respiratory center. If your tolerance to CO2 is high, the impuls from the diaphragm comes much less frequent, resulting in quiet, slow and regular breathing.
    The control pause measures the interval between the signals from the respiratory center.

    STEP 1: sit down and take a stopwatch.

    STEP 2: breathing normally through the nose, until you have established a comfortable pattern

    STEP 2: when exhaling (as if you were breathing normally), pinch your nose and stop breathing. Start counting.

    STEP 3: Release the nose when you feel the first urge to breath again, this is often indicated by spasm in the diaphragm, throat, or the start of a stressed feeling.

    The amount of seconds that you were able to comfortably hold the breath is referred as the control pause test.
    You know you have done it right, if you are able to continue to breathe normally after the test. If you had to take a breath breathe or if your breathing has become irregular, you have probably hold your breathe for too long.

    The longer the control, the healthier you are.
    Normal values are around the 35 – 45 seconds.
    It is regarded low if your CP is under 20 seconds.

    However the majority of people are under this value, and when my initial value before I started practicing buteyko was 9 seconds. Currently it is 18 and I have seen many health improvements, including my sleep.

    Also there are many testimonials of people who have cured their asthma, sleep apnea, rhinitis, hay fever, diabetes, chronic fatigue, insomnia and even epilepsy with buteyko.

    ——————————————————

    The therapy is relatively cheap compared to all the medical tests. A practitioner costs around 300$, however you can also learn it with self help manuals available on the internet. I recommend the self help manuals from Patrick McKeown, which costs under the 100$. Also do some research on chronic hyperventilation syndrome, the website of Artour Rahmikov (normalbreathing. com) provides a lot of useful information, also scientific articles from Claude Lum are very interesting.

    Also look into the Frolov device, which is basically a device which helps you with practicing buteyko.

    The therapy doesn’t require much money, however it does require a lot of patience, time and effort. You should practice a minimum of one hour a day. 6 times a day with sets of 10 minutes reduced breathing exercises. If done correctly you should see a gradual increase of your control pause over the span of a few months.

    When my own control pause is up to 35, I will report again to see if the twitches are gone.

    Also together with buteyko I recommend a healthy diet and supplementing yourself with Magnesium oil, Calcium, Zinc, and vitamin D.

    Although we believe that we are sick because we have this sleep disorder, I sincerely believe that it is the other way around. We have this sleep disorder, because we are sick. Therefore I do not think that drugs are the solution to this whole problem. In order to cure ourselves from this disorder we need change in our lifestyle.

    • Great write up Bryan2. Very interesting. Ive been a little slack with my breathing but did find it helped. I’m going to start again and do it more frequently.

    • Bryan2 Thanks so much for your effort and this info. Could you summarize a breathing exercise that you do? Or what a typical hour of practice is like? I will try to also look up these websites.

      • Hey Lisa,

        The funny thing of buteyko is that it is more than just exercises, it is basically an air diet.

        The main exercise is called “reduced breathing”:

        You sit with a straight back, and try to relax the abdominal.
        Breath through the belly and trough the nose only. To check this you can place one hand on the upper chest and one hand on your belly.

        Focus on your breathing for a minute or so.
        Next, when you breathe in through the belly, try to breath around 10 to 15% less than you normally do.
        And breathe out by relaxing all muscles. The exhalation should not be forced, instead it is simply a relaxation of the diaphragm.
        The aim of the exercise is to create a comfortable feeling of air hunger.

        to summarize the exercise:

        1. Measure your control pause and pulse
        2. Do 5 minutes of reduced breathing
        3. Take a break of 30 seconds
        4. Measure the control pause again (to creatie a small air hunger)
        5. Do 5 minutes of reduced breathing
        6. Rest for 1.5 to 2 minutes (breathe normal and the feeling of air shortage should slowly disappear)
        7. Measure the control pause and pulse again.

        If the exercise is done correctly the following should happen.
        You should feel more relaxed, you will feel warmer. The mouth produces more saliva and if your nose was a bit stuck before, it should be more open by now.

        Also at the end your control pause will rise by 2 – 8 seconds. And the pulse will either have stayed the same or has become slower.

        I recommend to watch some videos and tutorials on how to do it, as it might be a bit difficult to learn at first.

        I bought a frolov device, which is basically a device to aid you in creating air hunger.

        ——–

        There are also some lifestyle changes in relation to breathing.

        Try to breathe through the nose 24/7. If possible try to tape your mouth when sleeping, this actually helped me to cure my broken sleep.

        Don’t eat too much because a full belly will increase the breathing. Eat when hungry and stop when you are not hungry.

        Avoid laying on the back as this also increases breathing.

        If the control pause is under 20 be careful with heavy sports. Slow cycling and walking is recommended until the control pause has increased.

        Create a feeling of air shortage around the day as well, however this should be comfortable to avoid over breathing after the exercise

        ———-

        I practice the exercise 4 to 6 times a day.
        Also measure your control pause when waking up. If you practice daily, you should see an increase of 2 to 4 seconds each week.

        Furthermore note that you should also have a healthy diet full of magnesium, calcium, zinc and vitamin D.
        Try drinking half a teaspoon of Celtic sea salt in water, which is unprocessed sea salt and contains more than 80 different minerals.

        Wish you luck

  34. Here’s an interesting read about some vitamins that may help us. http://www.doctoryourself.com/nerves.html

  35. Hi all,

    Reading your comments, I feel hopeful and completely terrified. I have been plagued with this for months now. I had a life many would kill for and now I am reduced to a mess. Currently on Keppra working up to 3000mg, had partial success with this and on 0.5mg of clonazepam. I get about 6 hours.

    I am 29 and I feel like my life is ruined. I don’t see the point in living which hurts my family, boyfriend and friends. I just don’t know what to do, I want to be hopeful and think in time I will heal but then I see lots of people don’t seem to be…..are there any success stories?

    • Hi Sam,

      Are you male or female? I know how you feel- this is a truly awful thing to have.

      How did this start with you? Were you taking any meds or supplements before they popped up? Clonazepam started them in my case. I slept 2 hours last night. I’m on a trip and all I can do is sit here in this cabin, with my eyes burning like hell, while everyone else is having fun. My first “leisure” trip in 18 months and its starting off rough. No surprise. Not sure why I thought going would be good for me.

    • Hi Sam,
      Hang in there, it has every chance of getting better. At my absolute worst I was getting 0-3 hours of sleep a night. A few years later (roughly three) and it has steadily improved. Talk to your doctor about treatment options, possibly do a sleep study if your health insurance covers half (even some) of it.
      Good luck to you,
      Brian

    • Whats wrong with 6 hours? Listen take more than 0.5 Clonozapm until you stop the jerks. You must stop them I don’t care if you have to take 10 MG. YOU can indeed take enough to stop them. Have them at bedside for reassurance. Get doc to write you 1 MG 3 times a day. Once you get them stopped your chances are better. If you try like many here to take as little as possible and ride them out they can last forever. Something triggers them, I think Anxiety and or Hormone change.

      • Yes, stress triggers it for me. I think cpap treatment has helped though. If I’m not stressed at all, they seldom happen anymore. I take just 0.25 mg clonazepam every night. My sleep duration varies from night to night. I just try to be calm and get what I can.

      • Omg mark? Seriously? 10mg is a catastrophic amount of clonazepam. Some people, like you, seem to be unaffected by that med; but, believe me when I say that most are not. It’s very horrible advice to tell someone to take 10mg if they need to- and to take clonazepam 3 times a day?! Why would you even suggest to take it outside of her bedtime hours? That just creates a fast track to tolerance. Mark, I know you mean well with your drug advice- but you are leading people in the wrong direction. Do we even know how this woman’s jerks started? What if she hasn’t found out yet that she has a breathing issue that can be fixed with a Cpap? This person needs to sort things out before she dives into more drugs- particularly 10mg of clonazepam! .5mg nearly killed me and is still making my life hell 12 months later. This is no joke or laughing matter. Please be careful with your advice.

      • We disagree I believe your advice is wrong. I got these over 3 years now. First the jerks must be stopped. You should be more careful with your advice or it will lead people to have these for years.

      • But that is what confuses me mark. You tell people that they must stop the jerks with cloanzepam; yet, you still have them after 3 years! Am I correct? It appears that the vast majority of people cannot heal from this condition while taking “regular” or high doses of clonazepam… Which is what you are suggesting to people. I dont advise using it even sparingly, but that is my opinion. Though, some people can get better when they do this, like brian has. But, how do we know if even minimal use will cause setbacks in our own personal healing? We are all different in this respect. What I do know is that the brain will fix itself in a drug-free state once the real problem is addressed. A person may need hormone therapy, metal detox, c-pap, cbt, vitamins, etc, etc. I think I’ve been warning people of something that is very real and horrible- they need to know what these drugs can “potentially” do to them. My advise is sound… Find the CAUSE of the jerks and correct it. THEN, taper off the damn drugs. Nobody wants to be a slave to these drugs for life. The only way out of hell is to walk through it, and sadly that seems to be the case once most people have reached tolerance with a benzodiazepine.

        ***just something I question: I recall you writing about how these started for you (months ago). If I recall correctly, I think you mentioned that testosterone therapy started them. When you figured things out, you stopped the therapy and the jerks ceased. Then you kept repeatedly taking the stuff because you preferred the way you felt while on the testosterone. In my opinion, if you suffered as badly with this condition like myself and some others on here, I think your testosterone use would have been one and done. Unless you have experienced just how bad this condition can be, you will never take prescription med use very seriously. I’m not trying to minimize your suffering mark, but I had to point that out. I have been traumatized by these meds- and not just with Hypnic jerks. I’ve had over 30 horrible symptoms including severe heart issues. Anyway, I’ve rambled on too long.

      • I agree with Jessica. Everyone has a different response to medications and suggesting taking large amounts of meds could be potentially harmful and dangerous. I find it ironic that I take 200 mg of P5P which is a natural active form of a vitamin that our bodies need and people here are concerned that 200 mgs is high and are scared to take that much, yet the suggestion of taking high doses of medications which are chemicals that we have no idea what’s in them or how individual people will react doesn’t seem to garner the same level of concern.

        The best thing to do is work on finding what the potential cause could be. Possible things to look at: A sleep study, research, look into neurotransmitters, hormones, vitamin or mineral deficiencies, high cortisol, sleep apnea, chemical toxins, heavy metal toxicity (amalgam fillings, aluminum from deodorants etc), food allergies (MSG, gluten, dairy).

        I no longer require anything to help me fall asleep or stay asleep longer. I used to take a natural sleep supplement to help me get to sleep on nights I had insomnia (with no jerks). Now I don’t even need to take that. The P5P takes care of the jerks and I no longer have bouts of insomnia either. P5P worked for me. It doesn’t mean it will work for everyone. That’s why you need to look into the cause for yourself.

        Mark is doing what he feels he needs to do, which is fine for him. And it’s fine to say what you’re doing and what works for you. But it doesn’t mean it’s the answer for everyone and in this case could have potentially harmful effects on someone that may not respond the same way. Sharing information is important but everyone needs to find the cause for themselves and what works for them. Even with P5P I suggest if anyone is concerned with the amount, start low and go slow with gradual increases. It is always smart to be safe with how we do things, although completely understandable that this condition causes desperation for sleep, and often many of us have wanted to resort to drastic measures just to get some of that precious sleep.

        Many times doing research I thought I had the answer for what was causing mine, and I would try new things (usually supplements to support whatever I thought the cause was). I found an answer in a medical journal once which described a woman with this exact condition and the doctor tried a few things and finally found the answer for her was seriphos to lower her cortisol, which completely eliminated the jerks. I thought “This is it! I found the answer!”. Nope, didn’t work for me. I also thought it was serotonin related and took supplements to boost serotinin. Nope, didn’t work for me. My kitchen counter is literally covered in supplements and vitamins I have tried. Gabapentin also helped dramatically. It didn’t fix everything but it did get rid of the jerks enough to allow me to sleep. But it took a year of trial and error and tons of research to get where I am now, which is finally sleeping normal again with no jerks. Unfortunately it seems for everyone that has found an answer to getting rid of their jerks, it was mostly through trial and error with trying various things, whether that be cpap, medications, supplements, amalgam removal, or whatever. It’s different for everyone.

        Good luck.

      • Have yours stopped Mark? I understand getting the anxiety down is the first thing that needs to be done, but clonazepam 3 times a day ain’t the answer.

      • We can’t be squabbling over treatments. I did not get mine from clonazepam or any other drug that I know of unless it was estrogen replacement after 2 years of treatment with it after a hysterectomy. My symptoms prevent me from sleeping at all. I’ve mentioned before the living hell of clonazepam withdrawal and I am serious when I say that I’ve never been closer to death physically or emotionally because of it. That said, I’m back to it now. It is the lesser of two evils. If I don’t sleep I will die. Sleep is a basic need. If you don’t get it you will die. Your body will begin to malfunction, develop disease, and die. Sad but true. I have tried many many many alternatives and I have used ashton to taper off clonazepam completely. I’ve had this for over 3 years and the only medication that works reliably is clonazepam. I do plan to rotate drugs like some others on here to try and reduce tolerance but the days of the other combos are most likely not going to provide the relief like clonazepam. I don’t know if Mark is being sarcastic or serious but I certainly understand the underlying desperation of trying everything and deciding to do whatever it takes to get the jumps to stop and go to sleep. Too many nights of misery is bad for the body and the soul. Getting off all meds was not the answer for me. The jumps come back. They are severe just like they were when they started. This group is for support and researching new treatments, dr’s, insights, all things positive. I really think we should support each person’s choice whatever it might be for treating this agreeably horrible condition.

      • Hi Lisa-

        I am very sad for everyone here who deals with this condition. I completely understand why people choose to take clonazepam for this. No sleep is a miserable experience and it can wreak havoc on the body over a long period of time. It just doesn’t feel right for me to say nothing when somebody comes here for the first time for advice and is told to take up to 10mg of clonazepam! If i would have taken mark’s advice before i knew what was wrong with me, i would be dead right now. I had to say something just in case that poor woman took his words seriously. I’m sure we can agree that clonazepam has nasty side effects, as you’ve experienced them first hand. I only come here to share my experience in hope that it helps someone. For all I know, Sam may have gotten this condition from being on clonazepam and just hasn’t realized it yet. Who is going to tell her this? A doctor? Most likely not as everyone I’ve been in contact with had the same experience as I have had. Anyway, I completely respect everyone’s decision to take clonazepam, especially if their case is like yours and they have tried everything under the sun to fix it. But like I stated to Sam and what I will reiterate to everyone else is that people must try to fix the underlying cause first before slapping a band-aid pill on top of it. For many, that band-aid winds up becoming a crutch that does not allow anything to heal. Fortunately, a lot of people will gradually heal from this underneath certain medications and supplements and then can gradually taper off them. I was able to heal a bit while tsking mirtazpine for a few months. I do not see this occurring very often with those on clonazepam- which makes sense when you know how that drug works. Anyway, all the best to you and everyone else on here. I think I will exit this place for now. My anti-benzo discussions don’t seem to be recieved well here.

      • On another note, I am curious, has anyone tried marijuana? I know it’s illegal in most countries, that doesn’t mean no one has tried it lol

        A few years ago I had insomnia once for several days and kept getting adrenaline rushes every time I tried to sleep. A friend of mine had a son who was selling medical grade marijuana (illegally). She told me she would mention it to him and maybe I could try some. I kind of thought she was joking, but I was desperate and agreed. The funny thing is at the time I was working in a drug and alcohol treatment center for people with addictions, and my friend worked there with me. So one day I was out for coffee with her and she says her son is stopping by. She didn’t tell me why. Well he showed up with a little gift box, and inside was a single cookie which he had baked some marijuana into. He told me if I just wanted it for sleep and not “to get high”, I should eat a quarter of the cookie every night before bed.

        I tried it and slept like a baby those 4 nights. I would eat that little quarter cookie, and within 20-30 minutes it would put me to sleep. And the adrenaline rushes actually stopped and never came back for several years, until I developed this jerking problem, then they suddenly showed up again.

        I was actually getting to the point where I was willing to try pot for the jerking as well, but then I found P5P and never ended up trying it.

        Marijuana helps a lot of people with a lot of medical issues. People with seizures, MS, chronic pain have all found it extremely beneficial. So that’s why I ask if anyone has given it a shot. Maybe it’s something worth trying.

      • When my twitches first started I was prescribed many things, and one of them was medical marijuana. When my twitches were at their worst, the MMJ actually exasperated them, made them ten times worse. I stopped use after three unsuccessful tries, but held onto the prescription. A year later, when they were getting a little better, I tried again and found it no longer made them worse, but it didn’t get rid of them either. It helped me sleep though, as I also suffer from insomnia. Presently I enjoy both the recreational and therapeutic benefits of MMJ a couple times a week. I live in California where one is easily able to obtain a prescription and the strains are very potent. I only enjoy it at night, a few hours before bed.
        I believe there are benefits, but initially it appeared to make my problem worse.

        Thanks for flying with WordPress.com

      • Thank you for that measured, logical response Lisa. I agree with you.

        Some people take benzos to get high, boost alcohol, have fun, etc… others take benzos because it’s the only way to survive. There’s nothing in the world wrong with taking them to survive! Telling someone they shouldn’t take them for that reason is asking someone to not do what they need to do to survive. None of us have the right to pass judgment on someone for doing what they need to to survive.

      • Sadly I don’t think I have the same condition as others on here because I’ve tried most of the suggestions and they don’t help. Plus mine don’t come and go or slowly fade or improve with time. I’ve had several tests and 2 sleep studies. Diagnosis: myoclonus and hypnic jerk induced insomnia. Wow. Brilliant. Recommended treatment: Clonazepam. I’m not on it for stress or recreational purposes or a passing case of hard time sleeping. I don’t think I have much to contribute here because I do have to treat mine with clonazepam. I’ve been on high dose seizure meds that help others. They do not stop mine. I’ve tried lots of supplements with varying doses and combinations. They just don’t stop mine. I do wish to hear from tmwcs because if I remember correctly he’s had his 8+ years and tried everything too? He doesn’t post much so hopefully his have resolved as well. Thanks to all who have shared.

      • Lisa, I would look into testing your hormone levels and seeing if you need some adjustments, since that is the only thing that you can possibly attribute your jerks to. Also, you may want to look up how estrogen can affect the body, it can deplete a lot of different vitamins and minerals like zinc, magnesium, and B-6, which all help with producing serotonin. Another thing is that estrogen will cause the body to hold onto copper which can trigger too much dopamine and norepinephrine, causing the body to go into a fight or flight response. You can see a homeopath to test your copper levels, and they can give you some supplements to detox your body of copper if your levels are too high.

    • Sam,
      You must find the source of your jerks, if possible. Were you taking any sort of supplement (ashweghanda, cortisol manager, magnesium, HRT, etc) or drug before they started?

      You want success stories and they will be hard to find here. Most on this forum are currently taking benzodiazepines. I beleive, that regardless of how they started, these type of drugs just keep your jerks in a vicious cycle… Often causing the cycle like in my case. I can send you the names of 10+ people who got this crap from various things ranging from supplements to antibiotics to amalgam exposure who have all healed. You know what all of these people have told me? Stay off the drugs if you want to ever heal! Yes, it’s misery! I’m getting better ever so slowly. It can take the brain 5 years to fully recover from a chemical or physical injury. I can sleep up to 6 broken hours now and my average is 4. I take nothing. I went days in a row with zero sleep during my first several months off. Brian is right in suggesting a sleep study. Once you find the source to your issues, you will be able to taper off the meds after correcting the problem. If it IS the med, then you must start tapering now!

  36. Any alternative therapies worked? Hypnotherapy, etc?

    • I wrote that in a bit of a panic.

      Another question, has anyone tried mixing anticonvulsants? Like Keppra and Epilum? I read that myoclonus needs a mixture of these medications. I must admit I am fine with taking whatever if it helps, I do scare of the tolerance though. Gosh this must be one of the weirdest conditions ever, I feel so alone right now.

      • Hi Sam – sorry to hear there’s another victim of this terrible affliction. I was on high dose keppra for awhile until the side effects (anxiety, irritable, skin broke out, high blood pressure) prevented further use. It didn’t work for the myoclonus very well either. The only pharm drug I’ve treated with that stops mine is clonazepam. Propriospinal Myoclonus. How did the symptoms start for you?

  37. I’m so scared right now. I’ve been sleeping really well, but I thought taking some magnesium might help to eliminate the jerks. Now, I’m having the most jerks I think I’ve ever had and I also started having tinnitus from it. I’ve been in bed for almost four hours now, and all I can think about is that I may have completely ruined my body and my sleep forever. I don’t know what I’m going to do. This is so awful.

    • I’ve also found that magnesium makes mine way worse. I just had it happen last week, after nearly 2 years without them. 2 days of taking 200mg of magnesium had me jerking like in the past. I stopped the magnesium completely and they have been dissipating for the last 5 days. It’s really weird magnesium would make them worse.

    • Hey Anon,

      That really sucks. As I said before, you always have to consider the source of the magnesium you are using as well as whether your body is able to utilize that magnesium to get it into the cells. What kind of magnesium did you take and how much?

      Magnesium citrate is commonly recommended but it is not the most bioavailable form of magnesium. Also some people have reactions to magnesium with sudden supplementation as opposed to starting with lower doses and gradually increasing. In addition your body needs to be able to assimilate the magnesium you are taking by having the proper amounts of other nutrients necessary to support magnesium intake, and your adrenals should be in good working order as well. There are ways of doing all this. One good and non reactive source of magnesium that is not a supplement is epsom salt baths.

      Sorry to hear you are having a difficult time. I don’t think you have wrecked your body or that this reaction will last forever, the magnesium you took will eventually be used up or excreted. But there are always things to consider with all kinds of supplementation and needing to understand the balance of how everything works together.

      • Hi Michelle,
        Thanks for all the info. It’s interesting that others have had problems with it as well in regards to the jerks. I think you are right in that the magnesium will eventually excrete itself. I was definitely in a moment of panic when I was up thinking about it at 2 am and having so much trouble falling asleep. I ended up taking a nap today and only had a couple of jerks, so maybe the magnesium is already working itself out of my system, since I took it at around 1 pm yesterday. It was quite a terrorfying experience. I don’t know if I ever knew how bad this condition can actually be before last night. Hopefully, tonight will be better. I took a very small dose of magnesium, only 40 mgs, of Natural Calm powder (orange flavor), but I am convinced it caused the increase in jerks because I never have nights like that. It’s a blend of magnesium citrate and magnesium carbonate, citric acid, orange flavor and organic stevia. I know how important magnesium is for the body and I figure I am probably deficient in it. Maybe I can try to get more through my diet for now, but it seems like it would be hard to get enough through diet alone. I also suffer from headaches, which magnesium is supposed to help and I thought maybe I was having them because of a deficiency. Also, my sleep has been lighter lately and I’m having a little more trouble falling asleep after the jerks, coupled with a little insomnia. That along with the headaches and mild depression and anxiety that I have been feeling lately made me think that my serotonin levels have been dropping, maybe because of stress, and I was looking for a natural way to increase serotonin and thought magnesium might help.

      • Hey Anon,

        A lot of people suffer from magnesium deficiency and have no idea that it can cause so many negative symptoms. I joined a facebook group called Magnesium Advocacy Group and have learned a lot there. It may be a good place for you to get some information and feedback about magnesium deficiency. Also epsom salt baths are very relaxing for the muscles and a good way to get magnesium transdermally without taking supplements. Food is a good way to get some magnesium but also difficult because soils are depleted of it and our foods are so processed nowadays.

        Also you may want to check out a post I did in this group in the food and drink section. I listed a lot of potential causes and things that may help. I literally went through probably that whole list trying different things on a trial and error basis before I found something that really helped. It’s not an easy process for sure. Tryptophan is a serotonin precursor so if you think low serotonin could be an issue for you tryptophan helps boost serotonin. Tryptophan can be obtained through supplements as well as certain foods. Warm milk and turkey are 2 they say have natural sources of tryptophan, hence why they make people sleepy.

      • Tryptophan via foods will not cross the brain blood barrier.Google it. Supplements are the only was to increase seretonin. I’m takiing 5HTP and it works no question in my opinion..Better than Zoloft without the side effects. Way better for me.

      • Thanks for the advice, Michelle. I’m really trying to figure out this magnesium issue. I had two nights that were worse than usual after taking just one small dose of magnesium on Wednesday. Second night was much better and was bearable. Then, last night was the best night I’ve had in a long time, just two jerks. The first one was a big jerk, because the magnesium did seem to make the jerks much bigger, but the second was just a small hand twitch. It has me thinking that maybe the jerks are caused by a magnesium deficiency, and that my body is so deficient and sensitive right now that it went into shock at first. It’s so hard trying to figure all this stuff out. I guess I’ll wait and see how tonight goes….

  38. I know that some of us have mentioned that cortisol may play a role in the jerks. I thought maybe we could take the time to read through some of the symptoms of high and low cortisol and comment on which category we believe we may fall into.

    Physical Signs of High Cortisol:
    Easy bruising
    Poor muscle tone or muscle wasting
    Poor wound healing
    Thin skin
    Stretch marks
    Excess scar tissue
    Fat pads
    Chronic yeast infections
    Accelerated skin aging
    Puffy, flabby skin
    Water retention
    Moon face
    Impaired cognitive performance
    Dampened thyroid function
    Blood sugar imbalances, such as hyperglycemia
    Decreased bone density
    Sleep disruption
    Decreased muscle mass
    Elevated blood pressure
    Lowered immune function
    Slow wound healing
    Increased abdominal fat, which has a stronger correlation to cretain health problems associated with increased stomach fat such as heart attacks, stroke, higher levels of “bad” cholesterol (LDL) and lower levels of “good” cholesterol (HDL), which can lead to other health problems.

    Physical Signs of Low Cortisol (adrenal fatigue)
    Brain fog, cloudy-headedness and mild depression
    Low thyroid function
    Blood sugar imbalances such as hypoglycemia
    Fatigue-especially in the morning and mid-afternoon fatigue
    Sleep disruption
    Low blood pressure
    Lowered immune function
    Inflammation
    Tendency to gain weight and unable to lose it, especially around the waist
    High frequency of getting the flu and other respiratory diseases and these symptoms tend to last longer than usual
    Tendency to tremble under pressur
    Reduced sex drive
    Lightheadedness when rising from a horizontal position
    Unable to remember things
    Lack of energy in the mornings and in the afternoon between 3 to 5 pm
    Feel better suddenly for a brief period after a meal
    Often feel tired from 9-10 pm, but resist going to bed
    Need coffee or stimulants to get going in the morning
    Cravings for salty, fatty, and high protein foods such as meat and cheese
    Increased symptoms of PMS for women; periods are heavy and then stop, or are almost stopped on the 4th day, only to start again on the 5th or 6th day.
    Pain in the upper back or neck with no apparent reason
    Feels better when stress is relieved, such as on vacation
    Difficulties in getting up in the morning
    Lightheadedness
    Mild depression
    Food and or inhalant allergies
    Lethargy and lack of energy
    Increased effort to perform daily tasks
    Decreased ability to handle stress
    Dry and thin skin
    Hypoglycemia
    Low body temperature
    Nervousness
    Palpitation
    Unexplained hair loss
    Altering constipation and diarrhea
    Dyspepsia

  39. I used clonazepam for same reason and due to a reaction to another medication I ceased all meds. A week later I started having withdrawal syndrome from clonazepam. I usually took .25 to .5 as needed. During detox and withdrawal process, hypnic symptoms retuned with a vengeance. Been to several Dr’s and psychiatrist’s who tried all different non-benzo meds which do not work. I think I am at a point where I must decide to go back on the addictave med and realize it may be for a lifetime commitment. Now just wondering if previous dose will work.

  40. For those of you who have strong negative reactions to coming off clonazepam or other benzos, the following article could explain what is happening in your body and a lot of it comes down to 2 things: down regulation of GABA (calming neurotransmitter) and heavy metal toxicity:

    https://www.alternativetomeds.com/articles/benzodiazepine-withdrawal-and-heavy-metal-toxicity/

    Heavy metals are found in everything nowadays. Deodorant contains aluminum, pesticides contain arsenic, copper sulfates, lead, and mercury, amalgam fillings contain mercury, vaccines contain mercury (years ago a lot of them contained mercury, most are under the impression they no longer do, but many of todays vaccines still allow mercury in “trace amounts”- once mercury was labeled as toxic it was replaced in vaccines with another heavy metal- aluminum, which is still toxic!).
    Our bodies have no way of processing or naturally eliminating heavy metals so they just continue to build up in the body and they are poison in large amounts. They are also associated with a ton of neurological disorders. The only way to eliminate them is through the process of safe chelation. There’s a ton of info out there on how to chelate heavy metals, but from what I have read not all methods of chelation are safe because some cause the heavy metals to be moved around in the body but not eliminated, meaning it could redestribute and more could end up in the brain than was there previously. For anyone who may be interested, Dr Andrew Cutler has developed a safe chelation program that eliminates some of the commonly suggested chelators (such as cilantro and chlorella which are known to just redistribute but not eliminate heavy metals). Also if you have amalgam fillings you must replace them first before chelating or they will just continue releasing mercury into your body as you are trying to chelate.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s