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.

2123 thoughts on “About”

  1. medication, not mediation. Agree with you too, hate wordpress

  2. No anti seizure drug has worked for me except benzo.

  3. Hi All, Penny here from a while back. Had a rough night and thought I would check in. Some really interesting comments and I hope Elian hasn’t left the conversation! Please share more!

    So last time I checked in I was doing neurofeedback which has helped LOADS but hasn’t calmed the jerks so I can’t give up the clonazepam yet. I am getting more treatment soon but it ain’t half bloody pricey!

    My neuro said he thinks it is all very pyschological and I will be seeing a neuropyschologist soon. He says they have treated patients like me before. I am much more accepting when I wake i the night in spasm these days and try not to let the anxiety creep in. I have managed to fall asleep again in during heavy jerks by meditating…but my word getting some rest is hard work!

    Since neurofeedback I have had some naps and even fell asleep for 2 hours on the coach once which felt like a miracle, but then it is contradicted by some grim nights.

    Really respect people’s ways of dealing with this and glad people are supportive, think we all have similar but different paths. I am happy to be taking medication at the moment and I too take between 0.75mg – 1.5mg of clonazepam as well as melatonin and sertraline.

    Oh and another thing….I tried CBD oil after my sister who a has epilepsy said it was amazing. Alas, did not help me on my bad night……may be worth a go though if you can get it,

  4. Ouch Mark. Such an angry person you are…

    Believe whatever you will, my comment that seemed to upset so many and possibly scare away Elian was out of concern. Elian’s posts to me were becoming too much like giving medical advice and I merely wanted to point that out so he could re-word his opinions and not potentially get into trouble. Scoff if you will (Mark), but as a health care provider I work with adults all day who are like children. You have to hold their hand and spell everything out for a lot of them. I also happened to have had a situation years ago where someone misunderstood my advice on vitamins/supplements and stopped their medications. They blamed me and I nearly got in big trouble. So it happens, and I didn’t want Elian to get in trouble for stating an opinion. I KNOW he wasn’t trying to be a MD but everyone else might not.

    I had no problem with his theory or discussions. It was things like this:

    “If anyone on here actually wants to fix their jerks, just post a little more about your problem – how it started, and your current situation, and I can give more specific suggestions.”

    I don’t even care he wants to help but again, could be worded differently.

    But Lisa, you were right. I re-read my post and it was negative. I have felt since I found this board that it is a place of hope. And what did I do? I killed the most positive momentum I’ve seen on this board since I’ve joined. For that, I do apologize. And Mark, as much as you are clearly a selfish asshole, you are right too. I haven’t had anything beneficial to offer this board in a while if ever.

    As such, I’m taking a break for awhile and hope that Elian will come back. If you do, please don’t take what I said wrong, I truly was looking out for you though it must have came out wrong. As always, best of luck all.

    • You could have worded this whole post differently? So what? No shit. Who are you, perfect? I wish all of you bats would keep it zipped so we can learn something possibly..Typical. Go march tomorrow on womens day where someone is listening to you with the rest of the kooks.

  5. All I can say about that rant is perhaps Mark’s lack of sleep is manifesting itself as a temper tantrum. We’ve all been there so no big deal. Just because Zoloft and extra water doesn’t work for me doesn’t mean I disagree with all your posts Mark. Apology accepted.

  6. Hi all,

    I just wanted to stop by and let you all know I’ve had very, very few issues with jerks the last couple of weeks. Maybe one or two, nothing severe. Last night I slept for like 10 hours straight, which is insane for me.

    I’ve really been working on myself lately, and took four separate approaches to try and tackle this. Perhaps one of them has helped, perhaps all of them have, perhaps none of them have and it’s just coincidence. Anyway, here they are:

    1. For four nights I drank Dream Water before bed. If you’ve ever seen a 5 Hour Energy at a gas station or pharmacy, this is basically the opposite of that. It’s a little bedtime “shot” that contains GABA, 5-HTP and Melatonin – all things that have been mentioned on here. I feel this might have helped me replenish deficient serotonin.

    2. I read a book called “Letting Go: The Pathway To Surrender”. I did this after going through a rough patch with my partner and discovering that I was carrying a lot of negativity and resentment with me in life, on many different levels, that I didn’t even know I had. I realised I needed to find a resource to fix this, and this book immediately presented itself on Amazon. It has amazing reviews, and honestly I feel like it’s started me on a course that is going to change my whole life.

    I would recommend it to anybody – it goes into some metaphysical stuff that I am not sure I can necessarily get behind, but the overall message is clear: anxiety, depression and resentment are all debilitating to our mind and body, and there are ways to identify the feelings of fear behind them and relieve them of pressure, freeing up space for more love, happiness and health.

    3. Every night halfway between dinner and bedtime, I am having a glass of milk, a magnesium citrate supplement and a banana. This is mainly to get some potassium in, whilst balancing it with other electrolytes.

    4. I took somebody else’s advice on this thread and started using three pillows. The first two are stacked like normal, the third is then leaned diagonally on those two. Like this: =\ (each line is a pillow). This has basically resolved my neck problems entirely, and I have often wondered if neck issues were causing these jerks.

    Lastly, I’ve been working out at the gym and strengthening my upper back muscles as well as improving my overall wellbeing.

    Although I feel all of these have helped in some way, I honestly believe that number 2 is one of the most important.. I’ve been able to cultivate a belief that no, this doesn’t have to be a continually debilitating problem for me, and that I totally can get better as long as I intend to keep searching for the answer and not let it be a big deal for me.

    I hope that helps!

    J

    • One more thing – cutting coffee and caffeine definitely has a huge impact on my sleep. I love coffee and still drink it occasionally, but breaking the cycle of it being something I have every day has also done wonders

  7. Has anyone tried CBN oil? Has anyone come up with a list of things that make the jerks better or worse? For me blood sugar imbalance makes the jerks worse. Mitrazapine made it worse. L-Theanine and Taurine help. How about epsom salt baths? (I don’t have one). Anything?

    • Hi Lee –

      I’m not a doctor, but there seem to be two components to the jerks – the initial “arousal” signal in the brain, and then the electrical signaling that causes a limb to move. You can dampen the latter with things like coconut water before bed and magnesium, and for certain people, even consuming less calcium in the evening, by avoiding dairy products and hard water. Drinking reverse osmosis water throughout the day may help with this as well. In other words, pay attention to your electrolytes.

      Dampening the actual signal coming from the brain is more difficult. I don’t think CBN oil will do anything for that, unfortunately, since cannabinoids don’t modulate activity in the locus coeruleus, which is where I believe the signal originates. Drugs that are likely work, according to everything I’ve read, include amphetamines, opiates (including Robitussin), alcohol – none of which are great options, obviously, though occasional use of 30mg of Robitussin should be harmless enough. Clonidine is very likely to help, and I strongly believe Strattera will as well.

      Stay away from gabapentin, guanfacine, mirtazapine – any drug with any sort of alpha agonism or antagonism (with the exception of clonidine).

      Actually, a lightbulb just went off in my head about a more “natural” way to increase endogenous opiates in the brain. Low-dose naltrexone (LDN), which is an off-label treatment for MS and a host of other diseases, such as Lyme, over time will increase the body’s own natural supply of opiates (endorphins). It can be taken morning or night – in our cases, I would think morning dosing would be best. Wow, this actually seems like a really good, safe and long-term treatment option. Has anyone tried LDN?

      • Elian – Thank you for providing additional info. The LC origin theory is interesting one. Can you comment on why clonazepam works so well to subdue the hypnic jerking from the LC standpoint? Also, I apologize if I missed in your posts, but how severe are/were your hypnic jerks before you started treating with robo and/or clonidine. Mine are at every sleep onset and are more severe than a limb movement. I plan to discuss your suggestions regarding clonidine, strattera, depakote, nortriptyline, and disipramine with my Dr. I can say that SSRI drugs made my hypic jerks worse as did pharm gaba supplements, which actually helped some people on the blog here. Non benzo class anti seizure meds did not help the jerks at all although I think Keppra stopped actual seizures during benzo withdrawal at one point before clonazepam was reinstated. Hopefully if Mark is reading, he will refrain from commenting for the love of God.

      • Hey Lisa – clonazepam dampens electrical signaling throughout the whole brain. It’s very non-specific, a bucket of water on the fire. It’s more or less guaranteed to work, but as you know, there are a lot of undesirable properties – bad withdrawal for a lot of people, tolerance to the anti-convulsant effects, and memory and motor problems in geriatrics.

        The LC theory is useful because it suggests a class of much more specific, safer drugs that might be used for the jerks. Ideally, of course, we wouldn’t have to resort to drugs, but for people looking for the relief provided by medication, it’s helpful to know that clonidine (a very safe drug) could offer the same relief as clonazepam. Strattera is also very safe. Robitussin (two pills) can be used as needed. Desipramine and nortriptyline are a little more heavy duty. And valproate isn’t very specific in its actions at all, with respect to the LC, but could still be a good option. There are so many different things to consider, it really depends on the individual. If, for instance, you have depression you want to treat with medication, but have been getting jerks from SSRIs or mirtazapine, then nortriptyline and desipramine would be excellent bets.

      • Elian – Thank you for the quick response. I do not have depression but do tend to be anxious person (Type A) overall. The LDN treatment thought is extremely interesting and smart. I’ve always thought mine could have been triggered by some immune response and is idiopathic onset thus the prescriptions for different drugs over the years including SSRI’s, anti seizure drugs, benzos, various supplements…as there really seems to be no known precursor in my case. I know there is a conference later this year to do with off label LDN treatment as it seems to be cutting edge treatment for immune related conditions. Sorry, but you never did say how severe is/was your hypnic jerking symptoms and have they mostly dissipated? How does the immune system interact with LC?

      • My jerks were very severe for a long time – all night long for months after 3 days of mirtazapine. The first drug I tried that worked – I refused to take the clonazepam I was offered – was ropinirole. Nobody knew why it worked. My theory at this point is this: if amphetamines dampen LC firing, perhaps this is true of dopaminergic agonists as well, such as ropinirole. It stopped working after 3 months, and dose increases led to RLS augmentation, which was awful. Discovering the Robitussin was completely fortuitous, and it took me a while to figure out that it was the opiate action of the Robitussion, rather than its NMDA or SERT properties, that was stopping the jerks. I came up with the LC theory, asked for clonidine – it worked. Then I went back and mapped all of the things that made the jerking worse – buspirone, DHEA, vinpocetine, and voila, the results perfectly aligned with the hypothesis that increased LC firing worsens the jerks, and decreased firing ameliorates them.

      • Sorry – I didn’t see your most recent post. I cannot articulate the immune connection at all; it’s not well understood yet. But, just thinking about the role of opiates here made me consider the LDN. When people go through opiate withdrawal, it’s the increase in LC activity that’s mediating most of the bad effects. So what do they get prescribed? Clonidine, which targets the LC and reduces its activity.

        You’re trying to get off clonazepam, right? Maybe it’s worthwhile to start the LDN, get it into your system and working for 3 to 6 months or so, then taper off of the clonazepam. (*This is not medical advice* – sorry, I have to say this now to appease certain folks on here). I would love to know if anyone has had success with it. It works quite well, apparently, for spasticity in MS.

      • I’ve had autoimmune problems my whole life. I was on freaking methotrexate for a couple of years as a teenager. I don’t have any doubts that the immune system is playing some kind of role here, it’s just that it’s so poorly understood that speculation isn’t terribly helpful.

      • Elian – Recently my Dr recommended a short course high dose predisone — I think 5 days 40 mg/no taper…just to see if it would affect the hypnic jerks one way or another. I haven’t started yet but LDN sounds like a better option. Do you think you would try depakote over LDN in your case? Clonazepam is going to skew result from anything in my case because of the lengthy half life and MY VERY HUGE problem withdrawing from it.

      • Hey Lisa –

        I’ve wanted to try prednisone myself. I’ve noticed that I don’t have the jerks so much when going back to sleep in the morning, but they are very exaggerated at night. Makes me think low cortisol could be to blame, and that could be tied to my autoimmune issues.

        Yes, in my *non-medical* opinion, I would give it a shot, especially if your doctor is backing you up on it.

        I tried LDN in the past for arthritis, but it made me really tired, even with micro doses. I’m so ridiculously sensitive to everything. I’m still in school, so I have to tread carefully for now, but I would be very inclined to try it again. If LDN boosts endogenous opiates enough, there is no reason why it shouldn’t work for the jerks. Honestly, I don’t know what to do right now. My routine is working and my sleep is very good, so maybe I should just stick with it for now instead of doing the depakote.

        I’m sorry you have to deal with the clonazepam. The primary reason for the horror stories everywhere is that anxious people are in a hurry to get off of their anti-anxiety meds. That’s just the inane structure of anxiety – it turns everything into a nightmare by working against its own best interests (that is my personal experience, anyway).

      • Hi Elian, a great information and thanks for sharing it with it. I’ve had little success with baclofen when needed but again it is bit and miss. Haven’t tried what you’ve come up with, but if things get worse I just might have to.

      • Anonymous said:

        Antimyclonic action of clonazepam : the role of serotonin. https://www.ncbi.nlm.gov/pubmed/520416
        This proves that enhancement of serotonin is what helps myoclonus, not gaba.

      • I was told that closnzepam is the only benzo with serotonin action.

        But, if what you are trying to say is true, wouldn’t antidepressants or even supplements like 5htp help us? I think there’s something about the unique formula of clonazepam that both helps and causes this nightmare. There are some people who do okay while taking z-drugs or other types of benzos. Those (to my knowledge) only target GABA.

        It’s all so damn confusing. I think everything is out of whack. And if GABA is affected, it all goes down like dominos.

      • Anonymous said:

        I see the link isn’t working. Try a Google search for “clonazepam serotonin,” that’s how I found it originally. It’s located on a “pubmed” site.

      • Anonymous said:

        A few thoughts…

        1) There are multiple types of myoclonus: cortical, subcortical, peripheral, epileptic, non-epileptic. Each responds to different treatments. Piracetam (not serotonergic) often resolves cortical myoclonus, but not subcortical myoclonus.
        2) That article is from 1979. Much progress has been made in proper diagnosis and description. Here’s an article from 3 years ago written by John Cavaness, who does myoclonus research at the Mayo Clinic, using equipment only available there and at the NIH for diagnosis: https://www.ncbi.nlm.nih.gov/pubmed/24037428
        3) If what you’re saying is true, then taking Zoloft – a potent SERT inhibitor, much more potent than clonazepam – would resolve all “myoclonus”
        4) In support of what you’re saying: it’s true that clomipramine helps “exploding head syndrome” occurring at sleep onset. There is something serotonergic going on, but it’s not everything.l.

      • I think most of us on the blog have had extensive work up regarding myoclonus and according to the flowchart in this article there is little to no hope as most of us would fall into the symptomatic treatment category as no firm diagnosis seems to come out of all the testing. This article is upsetting to say the least.

      • Hey Lisa – don’t get discouraged. “Myoclonus” is not a helpful term to describe what people on this blog are dealing with. Yes, myoclonus means “a muscle jerk,” but that’s it. It’s so general and vague – meaning that anyone who comes along and says “myoclonus is caused by X” is not actually making a scientific claim at all (sorry Anonymous, your thoughts are still appreciated).

        I still think the prednisone is absolutely worth a shot in your case. What do you have to lose? There’s an adage in the medical community that “prednisone cures anything.” Yes, it’s a bit hyperbolic, but there is genuinely some truth to it. I’d try that before the LDN, since LDN takes a long time to work and is still hit or miss. Prednisone, if it works, will work almost instantly. 5 days, then you’re off.

        Also, this is *not medical advice.*

      • Elian – Thank you for the encouragement. I plan to try the 5 day prednisone treatment beginning next week. I delayed due to work obligations. Did not want to start until 1 of my projects is completely finished in case I have any side effects from it. I will report back to the group afterward. Absolutely it is worth a try. Thanks again.

  8. Also, guanfacine made the jerks terrible. This was a really important piece of information, since guanfacine is a highly specific alpha agonist. Essentially, if guanfacine makes the jerks worse, the only explanation could be the increase in LC firing.

  9. Well I am a newcomer on this blog but I have done so much research on this that I had to join when I saw it.

    I have developed sleep myoclonus upon using amytryptyline. that medication totally sucks. I have used it for sleep problems I have developed before.

    After around one week of using it, I started getting what seemed like numb limbs (paresthesia). It started in one arm, then it the other and gradually got worse. One day around 3 weeks in, I suddenly started having sleep myoclonus. An arm twitched. Then all of a sudden I had my fingers twitching (and moving) invooluntarily upon falling asleep. it also started happening during the day. I quit the medication at around 3-4 weeks…i was on extremely low dosage. Unfortunately the myoclonus didnt go away and I also developed the same but in the brain. so everytime i would be falling asleep, i felt something like shock in the brain and would wake up.

    i was put on clonazepam to battle these. 0.5mg. and mirtazapine to help sleep. however it didnt remove them just control them. only when i stopped all the meds the remaining myoclonies went down like..80%. I still have them sometimes

    Now, i must have some predisposition for it because I did a sleep exam before amytriptyline and it showed one arm movement – which i remember waking up with the arm moving up in the air.

    i do not know what this is.

    i just know i have severe insomnia. and i have taken metoclopramide which triggered epileptic waveforms on me (which after 2 years of phenobarbital went away), and i took finasteride (4weeks only) and minoxidil (some years).

    now i do not react the same way to medications anymore…and even suplements.

    inositol triggers again the myoclonies, minoxidil as well, alprazolam sometimes, anything anticholinergic…the list goes on…

    i have also found out my personality and physiology is seriously affected. i am not the same person anymore. i have taken 0.25mg dexametasone and it reversed all that – dont know about the myoclonus because i had to take clonazepam to sleep since it stimulate dme too much at night.

    i have done a lot of research and I think I have the following 3 issues:
    -> imbalance in glucocorticoid/mineral corticoid mRNA and sensitivity, in anterior pituitary
    -> ion channel problems, sodium (think minoxidil) or calcium channels (think inositol). or maybe potassium (these are linked to sleep issues). or transient receptor potential ion channels (see latest aussie cfs study)
    -> acetylcholine receptor issues, namely in muscarinic M2 or M3

    please someone contact me if they went through the same and is trying to solve it

  10. Elian,

    Any thoughts on ketamine infusions helping us?

    • Totally worth a shot, if you can afford it. I really think depression spectrum stuff, including fibromyalgia, chronic fatigue, etc., is an issue for a lot of people on this blog, even if you don’t feel “depressed.” I’ve finally accepted this about myself, after several years of denial. Ketamine can do wonders for those conditions. The frontal cortex has an inhibitory effect on the locus coeruleus. If it’s being properly regulated, you shouldn’t be getting the jerks or the zaps.

      • are you sure about locus coeruleus? if you are saying this because of clonidine working for you, i want to tell you that clonidine for me increased the sleep myoclonus. Or do you have a study to back this up? because that would be great for me..

        i am suspecting however that prazosin would work but i can’t buy it in my country… any idea where to get some?

      • Rui,

        I think prozosin is nearly identical to clonidine, right? Clonidine does not help me either. I have tried it at least 15 times without any benefit. I am In a wave of horrible symptoms for 4 nights now and took one 3 nights ago (since its been months from my last “try”). Well, I didn’t sleep a wink that night. It didn’t even help lower my my heart rate. I have also read that the beta blocker propranolol is supposed to help these jerks at night but that one actually makes mine worse. The only two things that have helped put me to sleep “while still having the jerks” is seroquel and mirtazipine. And I’m not fond of these meds for multiple reasons! I wouldn’t take them again… Especially since they both stopped working anyway.

        Elian,

        Thanks for the response. I would need some convincing evidence before I ever tried it. I’ve already wasted money and time on something similar: stellate ganglion block, which is an anesthetic injection into those block of nerves in the neck designed to help cure pain, hot flashes and PTSD. Didn’t work.

      • Hi Jessica

        No they are quite different clonidine and prazosin. They work on different alpha adrenergic receptors and with different Method of action.

        Prazosin is worth a try.

        For example mirtazapine which is alpha 2 blocker gives me muscle twitches. But trszodone which is a alpha 1 blocker doesnt and even seems to calm them down.

        Propanolol gives me the same problems as you.

        Have you noticed what are yoir reactions to muscarinic receptor blockers or agonists?

        Have you tried ion channel blockers?

      • Song,

        Thanks for clarifying the difference. I once asked a doctor for prozosin but was told that my clonidine was basically the same thing, hence my response.

        I’ve never tried those other blockers you just asked me about. The complete list of meds I’ve tried to combat these jolts from clonazepam are: trazodone, doxipen, citalopram, Effexor (one dose), mirtazipine, seroquel, gabapentin, Benadryl, a muscle relaxer, propranolol and clonidine… Among a longer list of supplements, vitamins and herbs. Only seroquel and mirtazipine mildly helped, for a short time.

      • Song – What medications are muscarinic receptor blockers or agonists or ion channel blockers? Thx. Elian – Any opinion on clonidine v prazosin? Thx.

      • No, I’m not sure, but I’m very confident. I don’t know if your symptoms match what other people on this blog are experiencing: waking up with a hand in the air, your EEG confirmation of epileptic activity – as far as know, people here have gotten inconclusive EEG results.

      • Hi Elian,

        Yes they match perfectly other people’s symptoms. The reactions to the same medications, the way the twitches developed, the path you are following, etc..im 100% sure its the same.

        I dont have any EEG changes btw, those are from 20 years ago and were triggered by a medication at the time.

        I really do not react well to clonidine. but suspect prazosin would work on me. like i said above in reply to jessica.

        I have searched the whole web. there is nowhere else i found people with my exact symptoms. i was very surprised

        ive tried many dfferent medications. my next ones will be low dose fluoxetine and vortioxetine

  11. You know, now that I think of it, I can see how clonidine and prozosin works well for those with true anxiety or PTSD (not with what I have). I’ve read about soldiers with PTSD who benefit from prozosin. Its worth a try for individuals on here who think their jerks stem from stress.

    • Jessica – what was the dose of clonidine you found ineffective? And you had a clean EEG right?

      • Elian,

        I took .1 the other night but I’ve tried various dose ranging from .1-.2…. My limbs go numb if I take more than .1.

        I’ve had an EEG, sleep study with EEG and an MRI. A brief glitch was picked up on my left frontal lobe, but the neurologist said it wasn’t related. That EEG was done a few weeks after all of this started so I was still on closnzepam.

      • Jeez, I wouldn’t take it then. Your blood pressure could be dropping, hence the numbness. That would be considered a “severe” side effect.

        0.2mg is still a low dose – most people can go up to 0.6mg. But it sounds like you have a lot of other complex conditions you’re handling. I think for people dealing primarily with just the jerks and zaps, clonidine is still a good starting point.

      • Elian,

        How much clonidine do you take? Btw, I weigh roughly 120 pounds.

        Do you get surges in your brain? Any auditory sleep starts? The inner “bump” noises are usually half of my problem. They always coincide with a muscle jerk, but the noise itself is the most disturbing part of it. And what about muscle spasms (not muscle contractions). These come and go, but the other night I was getting a lot of spasms in the back of my thighs.

        This is all just unbelievable to me. Before clonazepam, I had never experienced a single twitch or spasm other than the occasional eyelid twitch.

      • I take 0.1mg, which is often enough. Sometimes a small jerk or zap gets through. If it happens again, I take one more, and then I usually wake up the next morning.

        Yes, it’s unbelievable. It’s hard to accept that a drug has done some kind of irrevocable damage to your body or brain. Unfortunately, bad drug reactions are not uncommon. You don’t want to make your response to the situation part of the problem. You just have to keep moving forward.

      • “Do you get surges in your brain? Any auditory sleep starts? The inner “bump” noises are usually half of my problem. They always coincide with a muscle jerk, but the noise itself is the most disturbing part of it. And what about muscle spasms (not muscle contractions). These come and go, but the other night I was getting a lot of spasms in the back of my thighs.”

        ^^^I get all of those Jessica.

        Things like the surges in brain and auditory sleep starts Im convinced are from noradrenaline in locus coreulus. Prazosin stops it right on its tracks, i read all the research papers on this.

        Im not convinced the twitches are, im not sure they are related to locus coreulus but it was one of my hypothesis. the others are, nerve inflammation, muscarinic receptor problems or ion channel problems.

        Im surprised to see people here reached same conclusions as I did. hopefully we can find a solution

        What I would like to tell you is my symptoms got better and better, now they are almost all gone, around 80-90% gone but I developed predisposition to the issue and it is easily triggered now by the wrong medication or suplement, whereas before i didnt have any problem with the same medications

      • Hi Nui, Thanks for all the helpful information. I’m like yourself. I am at the point where things have gotten better, but once I introduce a vitamin or certain food they come back. I still haven’t worked it out yet. At one stage for a long time they changed daily which really made diagnosing difficult. I still dread the night as not sure what to expect sometimes.

      • Can you share which food and vitamins make it worse please.

      • Rui,

        I just reread your intro and a few things aren’t clear…

        When did this happen to you and when did you stop taking all of the meds? Stopping all of the meds made them clear up 80%? Very lucky! How much sleep do you get? I am 18 months off clonazepam and I’m having a hell of a time with this. I get ups and downs and currently I’ve only had 10 hours sleep in 5 nights. They are relentless!!

      • Koo-koo lol. Whack job seek mental help .

      • Hi Mark, honestly, why don’t you just stay off the blog. If you have nothing constructive to say then shut your mouth and Fuck off!! Go take your testosterone and deal with your twitches., Your the only person who seems to know what brings his jerks on, yet you still go back and takes the shit. I have heard your stupid testosterone story and theories over and over…btw, last i checked i had 2 balls and don’t need testoserone to do whatever it does for you…down here in down under we have a name for people like you…tosser

      • Ck,

        Just crazy. What in the hell goes through his “whack job” head (as he loves to call me)? It’s too bad there’s no way to kick this nasty Internet troll off this site. As if I haven’t suffered enough with this condition, someone here has to be so disgusting and call me names. Unbelievable.

      • You two hysterical freaks need a tranquilizer 24/7. Obvious why you have twitches. By the way don’t steal my lines whacko. And I’ll say what I want where I want so keep it zipped you two fattys .

      • Rui/Elian/Song – Any comment for someone who is ONLY experiencing hypnic jerking to the point of complete inability to sleep because of it. None of these other symptoms. I will experience some of the others when I start w/d from clonazepam as has happened in the past but I am looking specifically for something (medication/treatment) that will stop only hypnic jerking. Was it you Rui who said that may not be LC origin?? The ion channel theory is one that I thought was cuasatory from the start. What medication is designed for problems of that nature? Also started high dose prednisone today. Will see if that makes any difference. Thx.

      • @Lee Grigs, for me its inositol.

        I cant use inositol, it gives me back all the sleep myoclonus, and I also feel daytime increase in muscle fasciculations like similar to Charlies Horses.

        Mucuna Pruriens does the same for me.

        L-Tryptophan also triggered this before.

        There’s probably more but I would have to chekc my notes

      • Rui – try lithium, then. That’ll deplete all of the inositol from your cells.

        I’m glad you’ve brought up alpha receptors. What was the paper you read on prazosin? My understanding is that the majority of alpha blocking drugs, regardless of the specific receptor they act on, reduce increase coeruleus activity – with the sole exception of clonidine, which may be due to its imadozoline activity, or strong pre-synaptic alpha affinity.

        Mirtazapine, trazodone, guanfacine – these should all increase activity, making the jerks worse. They all made them worse for me. I’m really intrigued by the fact that trazodone helps you, though. Maybe the mechanism is more complex than just reducing or increasing LC activity. In my case that seems to be the answer.

        Here’s a chart I copied from a 1985 paper on psychogeriatrics that shows how very drug classes affect LC activity:

        https://ibb.co/cQnB8v

        What do you think? Also, have you tried opiates (like dextromethorphan?)

      • Major typo, sorry: “My understanding is that the majority of alpha blocking drugs *increase* LC activity”

      • Hi Elian

        I didnt understand, did you mean “My understanding is that the majority of alpha blocking drugs *increase* LC activity” ? Because it should be opposite for prazosin. however im not sure about clonidine as its MOA is a bit different. prazosin definetely decreases the LC generation of noradrenaline, its why its so effective for ptsd.

        I think also generaly SSRI should decrease LC activity some. My neurologist thought blocking directly the LC with noradrenergic drugs wasnt a good plan…hes a good neuro but he’s too careful and this disease isnt known i think

        i tried to brew california poppy tea and increaed the twitches. i tried tianeptine and didnt notice any increase but i really couldnt sleep on it. too stimulating. i felt great the first day though

        i tried inumerous things, from meds to hormones. i also tried testosterone. i cant say that it hurt but it didnt cure anything. also i must warn you taking testosteorne with an underlying mental issue such as anxiety will likely make things worse if the symptoms dont come from low test.

        i think LC plays a role but only to the extent where it increases an already existing problem.

        i think the real problem comes from a muscarinic dependent mechanism such as an ion channel issue.

      • hi Jessica

        When this all started my insomnia got worse much worse. I had days I was goign to work (engineering) on 3 hours of sleep. I had to quit my job.

        clonazepam did indeed suppress some of the twitches. however, in some occasions it actually makes them happen! so i have mixed feeling about it.

        mirtazapine works for sleep, the first couple of days then the twitches start.

        so i discovered the best is cutting down all stress, maybe take antidepressive in low dosage just for neurosteroids increase or anxiety,or try the alpha blockers like prazosin, and hope for the best. stopping all meds will heal you quite a bit IF you can get to sleep enough for the healing to happen.

        i dont know what this is, i just know my reactions to meds are in the opposites of a gaussian curve, very atypical

      • Hi rui, I totally agree with you. Clonazepam made mine worse, and honestly not taking anything not even a vitamin seems to help me the most. It is tough to do though. I left work for 8months and still go through bad waves. My sleep is very minimal alot of insomnia now, and the jerks and twitches come and go. I am going onto 22months since it all began.

      • Hey everyone,

        Not doing so well. Had a horrible night and finding that most of my other medication related symptoms are acting up, big time. I’m curious if anyone here gets a lot of muscle fasculations and spasms while sitting down or resting? Mine are mostly in my legs and feet, with some in my upper arms. These had reduced by 75% by month 12, but are kicked up in high gear again at month 18. Obviously not my worst problem, but wondering how they relate to the horrific nightly stuff. Thanks.

      • Hi Rui,

        Yes, sorry, I meant to suggest that most alpha drugs would increase LC activity.

        Wow, you are the first person on this blog to have the same ideas about the source of the problem as I do. It’s really impressive that your neurologist is on board with those ideas as well. A couple of people on this blog have been to Mayo, including myself, and I also went to MGH in Boston last year, and the neurologists had no answers.

        I agree that an SSRI should potentially help a little. I read a paper that showed all antidepressant classes (SSRIs, tricyclics, MAOIs) reduce LC activity after chronic use, even mirtazapine. Ropinrole helped me as well, but lost efficacy after 3 months, even with dose increases. But yes, the longest I’ve ever taken the mirtazapine is three days, since the jerks are so terrible on it. Buspirone and mirtazapine were the first drugs I tried for my anxiety disorder, and after taking them the jerks never went away. I’d really like to try tianeptine, since it’s probable that the opiate agonism will calm the LC, but probably only acutely before your body adapts to it. It’s kind of hard to get a reliable supply of it in the U.S. though.

        I got my LC ideas initially from a paper that talked about atomoxetine being used to stop “brain zaps” in acute venlafaxine withdrawal. It makes me think that an NRI class drug – like atomoxetine, reboxetine, or desipramine – could be a potential long-term solution. I think your neurologist is smart to avoid putting you on a drug that directly blocks LC activity, since experiences on this blog seem to indicate that they lose efficacy over time for some people.

        My solution has been to rotate up to three drug classes during the week, if I need to: 30mg of dextromethorphan works excellently and is OTC here, clonidine 0.1 – 0.2 mg, and 15 – 30 mg of temazepam. Not a great long-term solution, but I sleep well and can keep up with my work.

        Your ion channel and muscarinic ideas are really interesting – I’d love to hear any more speculation you have about their involvement. Earlier posts on this blog indicate success with extremely low doses of valproate (250mg).

        Really great to have you on this blog! Thanks for sharing your ideas. Would love to read more.

      • Hi Ellian

        i searched for the paper you mentioned and I believe it is this one?
        “A Case of Amelioration of Venlafaxine-Discontinuation “Brain Shivers” With Atomoxetine” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3733524/

        I read it very carefully. I am thankful you sent me this because with it I managed to find again the term “Brain Shivers” and Lhermitte’s phenomenon, which I had fonud in the past but lost it.

        So I did experience some electric jolts in the brain too. that what i was trying to describe before.

        When i talked to my neurologist about using prazosin for my sleep issues, he suggested I tried nortryptyline instead. I didnt because it didnt seem like such a good option to me but now I see it could help the jolts!! anyway, another medication for stopping withdrawal of venlafaxine symptoms is ondasentron, which is a 5ht3a blocker, pretty much like the vortioxetine he prescribed me.

        rotating the meds isnt a good long term solution, but whatever gets you through the nights i guess

        a couple days ago i discovered what seems to be my other issue with my fingers during the transition into/from sleep. Focal dystonia. but not a very strong one like others ive seen online on youtube, and it seems a specific kind of dystonia (dystonia plus) can be associated with myoclonus.

        i do have some pieces of the puzzle fitting together lately so im hoping for a breakthrough this year…

      • Hi Rui,

        Yes, that’s the paper. And yes, the key for me too was to start googling with the “brain zaps” or “brain shivers.” The physical jerking used to be very severe for me, but when I stopped drinking hard water (tons of calcium in our municipal water) and added about 800mg of magnesium glycinate a day, the physical jerking attenuated and I became aware of the auditory sleep starts for the first time. That might be true for other people on this blog as well – the shock of the jerks may be masking the “brain zap” that accompanies them.

        I’m actually taking nortriptyline right now, but only 5mg, since dose increases give me RLS. It stopped the zaps for about a week, which is pretty remarkable, since I remember reading somewhere that at 75mg you’re only blocking NET by about 50%. So you’re going to have a lot of nasty anticholinergic side effects at sufficient doses. Desipramine, atomoxetine, and reboxetine – reboxetine is probably the best choice – are much more potent with less anticholinergic stuff.

        Another term worth googling is “exploding head syndrome,” which actually has a clinical treatment strategy: 10mg of clomipramine, a very low dose. I found that surprising until I read that clomipramine’s metabolite, desmethylclomipramine, is an extremely potent NET blocker (Ki =< 1nM). I'd try it, but with my propensity to RLS, it's probably not a good bet.

        Honestly, I think many of the people on this blog – including myself – are dealing with a psychogenic movement disorder. I really hate that term, but in many ways it correctly describes the problem: the lack of an organic cause, clean EEG, various presentations of the movement disorder, accompanying but generally unrecognized depression, etc. I'm inclined to think it's just a matter of finding the right antidepressant.

        Thanks for the tip about ondasentron!

        One last thing: there is a lot of MAO activity in the locus coeruleus, and MAOIs (MAOAIs, but not MAOIBs) reduce the startle response and potently block noradrenaline currents in the LC. They're also the gold standard for treating depression. I'd love to try moclobemide, but of course, like all the good psychotropic drugs, it's not available in the US (neither is reboxetine or tianeptine). We only have shit drugs like tricyclics and SSRIs, uggghhh. I'm seriously thinking about driving up to Canada to get some.

        If you want to email me directly to discuss further, here's my address:

        elian8205 (a) gmail (dot) com

        I just created the account, since I know I'm going to get spammed by posting the address. But it sounds like we may have some good ideas to share with each other, so I'll leave it there in case you want to use it. But this blog is also a good place, except for the feud that seems to be a regular thing now.

  12. Apologies for anyone else who had the read previous post. Mark has been a pest and needs to be gone.

  13. You made that up. Never said a word about that. Has nothing to do with me and my sleep breathing disorder.

    • Sylvia,

      Read his other posts. The man hates women, plain and simple. If we all changed our names to bill or bob, he would leave us alone. Hopefully he isn’t getting under your skin. We are all fragile with sleep loss from such a scary disorder, the last thing we need is to feel unwelcome on a blog that is meant to help us connect. Anyway, hope all is well with you. Has cpap reduced your jerks any further?

      • Hi Jessica, Yes cpap has helped get rid of my nerve problems that were caused by sleep apnea/UARS. I still get a little jerking or head noise when stressed. Sleep still not normal but it’s longer most nights now @ 5.5 to 6.5 hrs and more dreaming.

        I think what’s also helped lately is taking low dose metoprolol for fast heart rate/afib. Was diagnosed and treated by cardiologist last month. I see you mentioned your fast heart rate, have you been to a cardiology clinic? A pharmacist told me that metoprolol can actually help with sleep.

        Another thing I’ve been doing that may be helping are excercises for strengthening the tongue and throat muscles. Found them on the internet for helping with tongue obstruction sleep apnea. And after doing those for weeks, I feel more refreshed from the sleep I get. Aerobic exercise is supposed to help too with sleep breathing. Hope I can eventually ditch the clap machine altogether.

        I’m sorry you still have the insomnia, it is so miserable. Are you getting any breaks from it lately?

      • Sylvia,

        That’s great that you have found things that are working for you. 5-6 hours isn’t bad… Especially for someone like me who has gotten used to an average of 4 hours! I wore a 2 week heart monitor back in November. While my hb is fast, they couldn’t find anything wrong with me except for a slightly leaky valve, which is unrelated. The heart meds don’t help my situation at all; perhaps because my BP is normal. Idk.

        Yes, I’ve had much better days in recent months but they are always followed by more hellacious nights. It’s like I’m experiencing more extreme ups and downs. Earlier this month I had 8 nights of sleeping 6 hours each night… It was so great! I’m praying we all get out of this mess and sleep well “every” night again.

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