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.

2250 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.

  14. How is every one going? The board seems to have gone quiet.

  15. Anonymous said:

    Hi CK, I’m sitting at my husbands bedside right now watching him sleep, drop off then jerk awake. Finally he received a liver and kidney transplant and we are very thankful. Now he’s having to adjust to the many side effects of anti rejection meds and antibiotics. Been getting excellent care here at UCLA medical center.

    Just lately I’ve been getting some better sleep from using an oral appliance that opens the airway a little. Would much rather use that than than clap. Need to get back to my dentist a little more adjusting.

    Are you doing any better? Hope so.

    • Anonymous said:

      CK, I’m shown as anonymous, this is Sylvia.

    • Hi Sylvia, good news on your husband, I really hope and pray all goes well and he gets better soon. Things are still up and down for me.. I go through waves of good and bad periods and take meds when needed. I am not getting the long hours but the jerks and twitches are manageable most nights. Good to hear you are having better nights also.

  16. Anonymous said:

    Hi everyone!! 🙂 I found this post several months ago. I was in search for a cure for my problem. I was bad, really BAD! I was desperate for a cure. I even posted here a few times. I tried every possible medicine (from light weight sleep aids to klonopin) every supplement, hypnotherapy, acupuncture, neurofeedback, eft, etc. the list goes on and on. None of it worked. I’ve had a Ct scan and every possible medical test. Drs said they couldn’t find anything and all signs pointed to anxiety. Anyway to get to the point, I’m getting better. I used to sleep 2 hrs nightly. Now I sleep 7 8.5 hrs. Im able to take naps again. Getting well for me is taking time and patience. First, I reached out to a guy who posted about his healing, Ken. He told me how he got better – I was so motivated to know somebody who was able to be cured from this same specific problem.So I started working on myself. I read “More Help for your nerves ” by Claire weeks like he did . I started doing three hrs of guided meditation a day. I became more mindful and lived in the present . I was prescribed mitrazapine. It was really hard at first but gradually I started living again. This site, for me, was great to meet others especially my dear friend Ken but it was not helpful to visit on a daily basis. I haven’t been to this site for such a long time. I’m here today only to share what has helped me. For me, how somebody got this jerk, doesn’t matter. How their electric jolts feel, doesn’t matter. If they have this symptom or that symptom just doesn’t matter. Look, I started at a whole mitrazapine pill and now I’m down to only 25% of the pill. But I can tell you my real healing wasn’t in the a magic pill. The pill only helped me to get a “little”rest so that I could work on myself. If I can help just one person, than this is worth my time. After all, somebody was willing to share their time for me so now it’s my turn. I know a lot of you might ignore my words but to all those who keep seeking medical help and the dr can’t find anything wrong, think of this post and know that the healing comes from within. When I realized that the healing comes from within,I stopped obsessing about my problem. I stopped searching. Coming from that dark place I know how hard and exhausting it’s been and I hope the best for you all!

  17. Has anyone tried tizanidine?

    Lisa – how did the prednisone work out?

    • Hi Elian – The Prednisone was working good while I was taking it and for a bit afterward, however, now I would say my symptoms are back to baseline. So no lasting affect or “reset to normal” affect that I had hoped for…Are you still experiencing symptoms? Do you still need to take any meds? Thanks for checking in.

      • Hi Lisa – that’s frustrating. Yeah, I still have symptoms, but I’ve been taking a small dose of clonidine regularly and it stops everything. It’s possible that I’ll develop tolerance to it eventually, but when that occurs at my current dose I think I’ll switch to prazosin. I’m really glad Jessica and Rui mentioned it, because that drug wasn’t on my radar at all.

        To wax technical, you can either agonize alpha2-adrenoreceptors, or block alpha1-adrenoreceptors, for the same effect. At a low dose, clonidine agonizes alpha2 receptors, but as you increase the dose, you begin to agonize (rather than block) alpha1 receptors, which theoretically would cancel out the effect of clonidine on the jerks and zaps at higher doses. What’s attractive about prazosin is its more linear effect: it only blocks alpha1 receptors, meaning that you could continuously increase the dose if you needed to – say, for the rest of your life.

        I know that’s not a satisfactory solution for a lot of people on here. But for me, I’ve accepted that my body is kind of screwed up with various autoimmune issues, and if I can take something harmless like prazosin and live a full, well-rested life, that’s ok with me.

        On the other hand, it may be worth thinking about our conditions as a kind of exaggerated startle response, and to pursue treatment from there. I remember during the mirtazapine how I would jump at the smallest noise. To this day, my startle response is still exaggerated – for instance, if I feel a small prick somewhere on my body, my whole body will move. Do you experience anything like this? I like this idea, because it offers a very simple explanation for the night symptoms, which are essentially pathological exaggerations of perfectly “normal” hypnic jerks.

      • Anonymous said:

        Elian,
        Have you ever looked into acetylcholine and how it might effect hypnic jerks? It looks like several of the medications you’ve listed before that have helped you all decrease acetylcholine levels (robitussin, clonodine, and requip).

  18. Hi everyone.
    My jerks began two years ago along with menopause.
    I m doing better now with the help of some supplements like HOPS, P5P, CATNIP and MULUNGU (this is for insommnia).
    But now my doctor prescribed me the triple therapy (to treat H Pylori) , 2 antibiotics , clarithromycin and amoxicillin and also the Omeprazole.
    I would like to know if anyone here has had to take these and if by taking them did the jerks get worse or not. I m so afraid of antibiotics now because of this condition.
    thank you

  19. Therese said:

    I’ve read every single comment on here. I consider myself a pretty intelligent person but I don’t understand any of this.
    I am a Mom to 4 young children. Just over 2 months ago. I developed postpartum insomnia. I’ve never had sleep issues in my life. I went to a postpartum psychiatrist who prescribed me mirtazapine and trazadone for sleep. It helped for a few weeks and then stopped working. She then prescribed me Seroquel (to be used as a sleep aid). I was hesitant about taking ALL of these meds. I am a super healthy person, I’ve never head insomnia or depression, and I hardly ever even used Tylenol before. But I was desperate for sleep, so I followed her orders. I had been on the mirtazapine and trazadone for about one month and the Seroquel for about 2 weeks, when I started getting what I called “brain zaps.” I would fall asleep and then was jolted awake. It felt like my brain was misfiring. It happened for a few nights, so my Seroquel dose was raised to 100, and the brain zaps stopped. I had 8 good nights of sleep and then everything fell apart. I started being jolted awake EVERY single time I would start to fall asleep….sometimes it felt like a brain zap, sometimes I would wake to myself making a snorting noise, and a lot of times it was a muscle twitch. It happened ALL night EVERY single time I’d start to fall asleep. It was/is TERRIFYING! Last week my psychiatrist had me stop the Seroquel. She told me to stay on the mirtazapine and trazadone and start .5 Klonopin. It is helping some with the sleep. Last night however I woke up about 3:30am and never got back to sleep b/c I kept twitching awake.
    I am crying typing this. I’m scared to death that I caused some kind irreversible damage with these meds. When I read about “hypnic jerks” on the internet and the fact that there is no research and no cure, I am terrified. My husband needs me. My 4 young children need me. And I want my life back. I’m not sure where to turn. Any POSITIVE advice or support would be appreciated.

    • Hi therese, its the mirtazapine. you must get off of it. have you checked your hormones? postpartum depression could be from hormones.

      • Anonymous said:

        I don’t have postpartum depression. This insomnia is certainly causing me to be anxious and upset a lot of the time though. Which is part of the reason the psych gave me the mirtazapine. Is the damage from mirtazapine already done?
        I also forgot to mention that for the last week I’ve been having minor muscle twitches during the day. They’re not that bothersome though….I mostly notice it if I’m sitting down.
        I had my vitamin levels and cortisol tested. I was low on B12, D, and magnesium was borderline. Cortisol was high at night and in the morning. So I’m taking supplements for all of those.

      • Elian – Which formulation of Magnesium supplement and dosage are you taking? I lost it in one of the threads on here. (glycinate/800mg) ? Thx.

    • Anonymous said:

      Therese – there isn’t a good explanation for why the zaps and jerks become long-term sequelae after trying a medication or two. Some people are just very sensitive.

      My advice is this: your situation is relatively new. Prazosin or clonidine will very likely completely eliminate the jerks and zaps, at the right dosage, and they are extremely safe and don’t cause terrible withdrawals like many other classes of drugs doctors will prescribe without a second thought – such as klonopin. Get off the other drugs and add one of these. Continue taking it for at least several months, or even more. The point is to eliminate not only the zaps and jerks but the anxiety that accompanies them. Take them regularly, don’t terrorize yourself by trying to come off of them to see if the zaps and jerks still occur without medication.

      The alternate route, which I’d discourage, is to become obsessed with the symptoms by trying every possible non-medication route and finding yourself continuously frustrated and exhausted. Your brain can’t take care of itself in such a state of anxiety. Some people on here put themselves through that kind of torture, but they often don’t have social, familial, or financial obligations, as far as I can tell. But you do, so this is important.

      Treating the insomnia itself is trickier. Clonidine will help with that, but often the effect wears off. An option might be to take the prazosin to control the zaps and jerks, while adding something else – perhaps a sedative anti-histamine, such as hydroxyzine, which might otherwise exacerbate the zaps and jerks without the prazosin. It’s hard to say; everyone is different.

      • Anonymous said:

        Rui’s advice is spot on. If you eliminate the mirtazapine that might solve the problem straightaway.

      • sorry i meant postpartum insomnia. anything postpartum could be hormones really. checked your progesterone? your cortisol was out of range, but are you talking about blood or saliva? if its in saliva its less worrysome than in blood.

        quit the mirtazapine, you could try to keep trazodone (<75mg), for me it helped me, or you could add another noradrenergic blocker like said above, clonidine or prazosin, and one of those 2 is likely it will help

        good luck

      • Therese said:

        Thank you so much for the thorough and thoughtful reply. From who and how do you go about getting something like Clonidine prescribed?
        My next step was going to be to try and get an appointment with a neurologist. I wasn’t sure if I should seek one out who specializes in sleep or specializes in movement disorders.

      • Anonymous said:

        Clonidine is a really routine drug, as is prazosin. Any general practitioner will have experience with both. They’re mostly used as blood pressure medications. The neurologist appointment probably isn’t necessary, and in my experience will be kind of useless, but it doesn’t hurt to see one.

      • Therese said:

        So how did you go about getting a blood pressure medicine for this problem? Seems like a doc would look at me like I was nuts if I suggested this.
        Did the Clonidine fix it for you? Are you still taking it.

      • Anonymous said:

        Clonidine has a lot of off-label uses, including the treatment of tics in Tourette’s syndrome, ADHD, sleep apnea. Prazosin is used off-label for PTSD-related nightmares.

      • Jessica said:

        Therese,

        If you have read everything, I’m sure you saw my story… So I won’t rehash it.

        I don’t agree with much of the advice just given to you. There is no way to know that it was the mirtazipine that did this to you. You were also on trazodone and that is also known to cause these issues… All pych meds can cause these issues! When my jerks started, I was rotating trazodone and clonazepam. I mostly blame the closnzepam in my case, but only because I was able to see myself deteriorate while only on the closnzepam (long story). Anyway, my advice is to get off both of those drugs and heavily reconsider the closnzepam as it is a harder drug to get off of than the mirtazipine, seroquel or trazodone (I’ve been on all 4, just like you).

        As far as clonidine goes, it’s worth trying but it didn’t help me. In addition, it caused my blood pressure to become too low and my limbs would go numb. Didn’t stop my jerks at all.

        Not trying to scare you… Just telling you what I know since your story sounds almost exactly like mine… Right down to the post partum insomnia.

        I don’t like coming to this site much anymore, but I saw your story and had to reach out. Now that you might be on clonazepam, there is a forum called benzobuddies for people on that class of drug. If you decide to join it, you will find thousands of people who have suffered from pych meds in the way you and I have. All of them were either damaged by a benzo alone, or multiple meds. I think that place would help you out more as those people all reacted to meds and they all help each other with tapers, adjunct meds, sympathy, etc. I find that most people here are pro-med and had some kind of underlying health issue that caused these jerks to start. In my opinion, we have something totally different going on.
        This isn’t sleep apnea, anxiety or some kind of deficiency for us… It’s a neuro-chemical imbalance causes by pych meds.

      • I got it without taking Physc meds..Wrong again.

      • Anonymous said:

        I would ignore Jessica, and encourage others to do the same. She hasn’t said anything different from Rui or “anonymous,” who both offered the same advice: ditch the hardcore psychotropics and try the clonidine. Biographically, Jessica has been dealing with this for about 18 months, quit her job, sleeps a couple of hours a night, etc. (if she says differently now, simply look at her old posts from a few weeks ago), and has only a vague theory of “chemical imbalance” that cannot be acted on in any meaningful way. Certainly not a paragon of how to deal with the problem. Her advice is not constructive; it is simply a point of heightened skepticism in the face of a genuinely constructive answer to the problem, different from her own version, which offers no path forward at all.

      • I sniffed out the nut job right away. Said it months and months ago. Hysterical american women shocker. All SSRIs have made the issue worse for me. Certainly didn’t cause them as I have never taken them. Being here form day one, I believe it is Hormonal. Or Chronic anxiety that can be exacerbated by Hormones. Drinking water and a Cpap are natural things that I have found help. Nothing else really. Alcohol makes them worse or possibly causes them.

      • I don’t think Jessica’s advice is invalid per se, but I agree that the proof is in the pudding. (You can’t dole out advice if you haven’t been able to find a solution yourself.) I totally agree on trying the clonidine (or the prazosin) under a doctor’s supervision. If those don’t work, there are other things you can try, such as NRIs. It’s a good idea to get off the the mirtazapine right away, given its very potent alpha2 blockade. But be sure to talk to your doctor.

      • Therese said:

        I appreciate everyone’s input. Although I do find it discouraging to here people say get off Klonopin, since that is the only thing giving me any sleep at the moment.

      • Jessica said:

        Oh my, not surprised by the comments. This is exactly why I cannot stand this site.

        The original comments by RUI and anonymous were to stop the mirtazipine (agreed) but to continue the trazodone (as if that drug is benign??). One of them recommended clonidine as an option that would cure her jerks and has no lasting withdrawals effects. It has side effects (I’ve experienced them) and with long term use, it can have nasty ones that take time to go away.

        Mark, what is your point that you always try to make with me? You tell me you didn’t get your symptoms from pych meds… I KNOW! Did I say everyone does? Absolutely not! Not sure how much more crystal clear I can be. You got them from hormonal issues. Good for you. I got them from pych meds and it looks like Therese did too. If she wants some semblance of a normal life again, she is going to have to closely look at every single drug she puts in her mouth from here on out.

        As for the length of time I’ve suffered from this crap… Yes, I’ve had this shit for a long time. Looks like everyone else has been suffering for a long time too, and as far as I can tell, nobody who has gotten this from a med and are currently on meds, has been cured.

        As I’ve said before, I’ve made huge improvements since the early months with this nightmare… But I still have rough patches where I can have days in row of very little sleep. It’s far better than spending every single night not sleeping at all, and that is where I used to be. I’ve also been dealing with worse symptoms in the last few months due to a string of viruses I keep getting from my kids. Viruses and menstrual cycles are both known to cause an increase in anxiety (low progesterone, low immune system, etc) so that is why.

        There are a few people on this site who must have medical backgrounds since they seem to understand the mechanism of these meds better than myself. My understanding is very simple, yes, but it doesn’t really matter because I’ve had actual doctors tell me that this is neurochemical damage and it can take up to 5 years to recover from. I also speak to many people who have reacted in the same way as myself WHO ARE HEALED. What did they do? They stayed pych med free and suffered up to 3 years before their symptoms disappeared. Most do not suffer nearly that long… I’m one of the unfortunate ones. Many only take a few months to recover once they are off the meds (by the way mark, this does not apply to you, so don’t get your feathers all ruffled). What I’m writing here is only meant for people who reacted to meds. Everyone else should take meds, for all I care. Seems that many here are happy on them and they have improved their life. That’s great.

        Anyway, Therese, I hope you recover quickly. Seriously consider joining benzobuddies as you will find better support and answers there. There is a member by the name of perseverence who has clearly explained these drugs, what they do to the brain, how we recover, etc… She is extremely intelligent. There are also doctors on there (some are public with their stories) who reacted to benzos and other drugs. They will tell you that they were not taught in medical school that these pills can cause such long lasting side effects. They are taught 6 weeks, max. Most docs who do know, learned from work experience and were smart enough to put the pieces together. My point is, don’t take medical advice from strangers on a forum who don’t know everything about these drugs or the best course of action to eliminate their side effects. Sharing experience is helpful, and I think that is what this site should be for. I question some of the people giving advice, when they haven’t even told you their history with the jerks. Who is this anonymous person, anyway?

        Clonidine “might” help you, but just keep an eye on other issues if you choose to take it. Propanol (another blocker) actually made my jerks worse, FYI.

        Btw, I’ve been completely med free for 14 months… Off of clonazepam for 20 months. Hard to say if I should consider myself 14 months or 20 months into recovery as the mirtazipine may have caused a setback. Who the hell knows. That is why I recommend no drugs, if possible.

        Good luck to you.

      • The no-med route is not going to work for everyone and it is as irresponsible to tell someone that is very sick that her only way out is to be med free.

        I was medicated for this issue and it did go away, as opposed to when I was medication free.

        It isnt damage.

      • Jessica said:

        Rui,

        Tell us exactly how you got these jerks, please. Let me state this again as i have in the past… people who got this crap from something other than meds may need meds. People with mental health disorders are a good example. Explain to me how people who are sensitive to pych meds, are going to be cured by taking more pych meds? They are just buying time until they reach tolerance, again and again. I’m not one to keep my head stuck in the sand. These drugs are clearly poison to “some” people. Do you think that mirtazipine is better than trazodone? They both alter some of the same brain chemicals, and ultimately do the same damage (if used often). But for some people without sensitive brains, they may work well for a lifetime. I don’t think Therese is one of them. This should be obvious to everyone.

        I came to this site to help someone who seems to have reacted like I have. I’m not giving any of you other people advice.

        It is damage. Neurochemical damage induced by meds that is REVERSIBLE. What you probably had, RUI, is anxiety… And that is not damage.

      • Jessica, I dont talk about what I dont know, technical or not, and I dont assume about other people’s symptoms, and as such I expect the same from other peers online.

        If you want to fight you can hit your head on the wall you have in front of you.

        Its my last reply to you.

        Cheers

      • Of the people using chlonidine or prazosin with good results, what seems to be the optimal dose for controlling movements caused by the brain arousals? Thanks.

      • Therese said:

        Do other people get muscle twitches during the day? Or only the hypnic jerks when falling asleep?

      • I get some muscle “twitching” (myoclonus/fasciculation) during the day. I’ve had lots of tests and these were determined benign. I believe they are maybe related to clonazepam treatment but may also be related to this condition. I’m just not sure. Certain foods, stress, other environmental factors, fatigue…make both the daytime symptoms and/or hypnic jerks worse.

    • Therese – My sympathies that you too have developed this weird condition. When I think back to when mine started, I believe in the months prior to the brain arousals which I believe trigger the hypnic jerks, my sleep quality had also deteriorated with insomnia. So could it be that the insomnia comes first and then the prolonged fatigue will lead to this chronic hypnic jerking? Who knows…If you’ve read everything on here, then you probably read my story. Our similarity is that I have these hynic jerks at EVERY sleep transition. I also treat with clonazepam and it has proven (so far) to be the only medication that diminishes the sleep starts. I am going to try chlonindine or prazosin as I know that clonazepam is not a good long term option. I think everyone on here would agree with that. However, I recognize that I have to sleep. I work full time. I have a husband, children, and other responsibilities. At this point, I cannot go off treatment and try to ride out the storm of multiple days without a wink of sleep and no guarantee that this condition will heal itself. I tried that and it was awful. From what I understand TMWCS, had/has been treating with the same dose of clonazepam for 8?+ years. Some people are on clonazepam for life with various conditions. For myself, I hope to find a better medication with less side effects to treat it until someone figures out a way to get them to stop. Every doctor and neurologist that I’ve seen in the last 3 years prescribed clonazepam for this. As this is a new condition for you, I concur with the others that it seems best to try and get it under control without clonazepam, if possible, but at least you know it works if you get desperate. My question to anyone getting updates from this blog past or present…Has this condition ever completely gone away? And by gone away, I mean a complete return to normal sleep function with no insomnia or hypnic jerking ever without any medication. I would like to hear from anyone experiencing that type of success story.

      • Jessica said:

        Lisa,

        You just asked if anyone knows of people who are completely cured after taking no meds. Yes! I met these people on benzobuddies, and have gotten to know most of them well. I will give you a some of the cases:

        – a 36 year old woman (an RN) who took these meds for test anxiety (she was studying to be a nurse practitioner). She had these jerks SEVERELY for 24 months off Xanax and 20 months off her other meds. She hasn’t had them for 1.5 years. We talk a lot and she describes everything that I’ve experienced.

        – a man who got this from the antibiotic cipro. He became worse after taking a benzo and stopped everything. Took about 6 months to return to normal.

        – a man from Singapore who took a benzo and would jump in the air off his bed every night for 3 years after quitting. He’s been totally healed for 2+ years. He couldn’t even brush his hair, his muscles would jerk so bad.

        – an older lady who took several meds for 14 years. She had these jerks horribly bad for up to 3 years. 0-4 hours sleep for years. She now sleeps 7-8 hours (5 years off all drugs).

        – a pharmacist who reacted to a benzo immediately. She had these jerks for 3 months after stopping the med. she still has them occasionally, but she’s only 7ish months off. We know each other on Facebook and she’s outraged that she never was taught everything about these meds in school.

        – a lady who took a benzo and had this stuff badly for 12 months. She’s been healed for several years. Taking long walks helped her heal.

        ** I know of 5+ other BAD cases and many, many more minor cases. If you decide to join bb, I can give you their user names if you want to talk to them. I think you speak to ck… I can give you this info through private message if you want. People do heal from this! It just takes time for the brain to recover.

      • I agree with Rui. Jessica, every “story” you’re mentioning is awful – people not sleeping for two years, having their lives fall apart in the meantime, and eventually recovering from protracted benzodiazepine withdrawal. That is hardly an example worth following. Therese’s condition did not arise from benzodiazepine withdrawal. She has a family and wants to get her life on track. People have jobs, families – there isn’t time for an experimental two-year interlude in many cases.

        I’m also very, very frustrated by you dispensing medical advice about things you know absolutely nothing about. For instance, lumping propranolol with clonidine as another “blocker” that didn’t help you. If you don’t understand something, please leave it to someone who does instead of polluting this forum with nonsense. I’m sorry to be so harsh about this, and Therese can certainly make her own judgment, but I just don’t think your advice is very good. Your advice is, essentially, to spend two years in a death spiral and *maybe* things will get better. Others on here are dispensing very sensible advice: try the clonidine, try the prazosin, etc. These are quite harmless drugs, and fear-mongering about the clonidine also shows both your tendency to hyperbolize, and to make genuinely empty or simply incorrect medical claims.

      • Jessica said:

        Well, Therese will have to decide what works best for her. If she continues to spiral into hell with these jerks, she is going to have to decide between the med route or see what happens if she attempts being med free. *** I gave her my story so that she has the guts and knowledge to go med free if she begins to feel trapped on meds.***

        If she cannot sleep at all without something, then obviously she will need to take something and taper off of it. i had to do that for 6 months.
        Its not ideal, but people do need some sleep and taking a chance with a different med may be the only option in order to sustain life. She read my entire story so I didn’t feel the need to explain all of this. I am not therese and only she knows how bad her sleep really is and how much discomfort she can tolerate.

        I gave the worst case scenarios for a reason. To validate that they do exist… and they heal! Its not always for 3 years straight. These people had ups and downs, and gradually got better.

        There are MANY people who heal quickly and she could be one of them.

        Elian, I know the difference between propanol and clonidine. What’s the point in spelling it out? I brought up the propranolol because its another blocker that her doctor may recommend (it’s commonly used for Hypnic jerks). I used it and it made things worse. Just sharing my experience. I am not telling her that she shouldn’t take blockers. They aren’t pych meds. But they can cause heart issues… her doctor can advise her on that.

        Funny, I’ve never had a single person, in my life, say hateful things to me (mark) or single me out like this for trying to help someone… Until I came here.

        I am out of here. Good luck Therese, Lisa and Silvia. I wish you three the best.

      • You might understand the difference between clonidine and propranolol, but by referring to the latter as “another blocker” you are suggesting a similarity. This might be confusing for people. And in the end, half of all of these drugs are “blockers” anyway (inverse agonists, antagonists). I’d be sad to see you leave the forum, as every individual story is a valuable addition, but if you decide to stick around, please try to be more factual.

      • Lisa – you start at low doses with clonidine or prazosin and work your way up. Everyone is different, but clonidine works for me at 0.2 mg. Prazosin should be started at 1 mg.

      • Therese said:

        Thank you Lisa for the response.
        I try my best to stay off of health boards because although sometimes I might find some helpful advice, they usually end up causing me more anxiety and worry. I’d love to stop all meds, but like you said, riding out days with no meds and no sleep would put me in a terrible place. I tried doing that for 2 weeks when the insomnia first started and I honestly didn’t think I was going to make it. (Although some days now, I feel like I might not make it either!)

      • Therese said:

        Do other people get muscle twitches during the day? Or only hypnic jerks when falling asleep?

      • Therese – mildly. I have always been a little “twitchier” after taking the mirtazapine several years ago. While I was on it my startle response was through the roof. It’s unique among antidepressants in that it activates a part of your brain that mediates the startle response and is responsible for sleep-wake transitions, whereas many other antidepressants don’t. This is also the part of the brain associated with PTSD, which just goes to show you how sensitive it is: one traumatic event and you have long-term changes, including increased startle. That is why prazosin and clonidine are good choices to treat that symptom, since they block activity in that part of the brain. Not incidentally, prazosin is used in PTSD as well. The same kind of recovery that is possible in PTSD is, likewise, possible for us. But it requires clever treatment strategies. In your case, I’d suggest just stopping the mirtazapine, as you may very well be one of these people who doesn’t develop long-term jerking and zaps, and you can get back to your life instead of getting stuck on these boards for years, like other here. Are you taking 15 mg? You could even dial it down to 3.25mg or less, since it will still have potent anti-histamine (sleep-inducing) effects at that dosage, but cause less activation in that part of the brain I’ve been talking about.

      • Therese said:

        Elian, I really appreciate your comments. You seem very knowledgeable and empathetic.
        I have been on 7.5mg mirtazapine. I stopped the mirtazapine and seroquel cold turkey 8 days ago. I didn’t notice a difference in the jerks and I was feeling really bad (emotional, nauseous, headaches) so I figured it was side effects from such a quick withdrawal of both meds. I started the mirtazapine again 2 days ago (before I found this blog!) and I’ve been feeling better (except for the jerks). As much as I want these drugs out of my system, maybe I should wean off the mirtazapine instead of stopping cold turkey.

      • A taper is always a good idea, but 7.5 mg is probably a sub-therapeutic dose as far as anti-depressant effects go. Still, listen to your body and go at your own pace. Keep us posted about how you’re doing.

      • Therese – If you decide to give Prazosin a try I would be curious to see how you do with it. The only med I use to treat the hypnics now is clonazepam. .5 mg did not work for me. I have to take 1.5 mg about 45 min before bed. That is the therapeutic dose for me.

  20. Linda Olley, RN said:

    I have late stage neurological Lyme and many other tick-borne diseases. 7 members of my family have Lyme. My
    husband has suffered from these myoclonic seizures ( neurological tics)
    for years. Low magnesium levels can
    cause muscle twitching, and some find relief by adding Magnesium Maleate to their Protocol. Some have found reduction by taking GABA. Techniques like Meditation, visualization, mindfulness, hypnosis, even Acupunture or Acupressure may help some people. If toxin related, regular infrared sauna may be beneficial. As with any health challenge, it is trial and error. There is no right fit for the glove approach for everyone- sadly.

    • Hello All,

      Penny here from a while back.

      So a chap named Jimbo on here posted that he read a book called ‘Letting Go’ by David R Hawkins which he said helped him. It seemed to be lost in a sea of medication related posts and didn’t link with the convo but it caught my eye. I just want to say this has completely changed my life.

      So I started with jerks and twitches in April 2016 whilst working abroad. It caused utter misery and extreme anxiety. Doctors refused to help and I paid to privately go see a neuro and was put on clonazepam which I happily accepted but after reading the usual benzo stuff it caused further anxiety in case of bad side effects. Deep down I always knew I would be ok taking it but then my anxiety was out of this world.

      I tried keppra 3000mg, nothing. Anti depressants, nothing. Drsnk heaps of alcohol, doubled my anxiety. 2 prevented suicide attempts and I was clinging on to life by a thread. I paid for neurofeedback which helped but never stopped it. I truly believed that was it for me.

      I saw Jimbo’s post whilst having a particular bad night and ordered the book. It is all related to pyschosomatic illnesses and how they present themselves in our bodies. From reading this book I did a lot of ‘letting go’ and experienced anxiety like nothing I ever had before. Then a sheer release. This happened and stopped, happened and stopped…..amd in one month I had dropped sertaline, melatonin and 1.5mg of clonazpam with no trouble what so ever. During reading this book I research neuro function disorders and got a great work book that pyschologists use with patients.

      I am now sleeping like a child each night and enjoying naps. I have moments of anxiety and jerks but the techniques that are natural in all of us are put into place and they go.

      My advice is to everyone, even if you think these are from an illness or medication, give David R Hawkins books a go. It is all about illnesses and neurological disorders. Plus, also research neuro function disorder aka conversion disorder. The symptoms are very real but the cause behind them is nothing a drug will ever cure.

      I am not suggesting anyone stops their meds or am I trying to say you are wrong about what you are feeling. It has just been a miracle for me and I want everyone to have the opportunity to find a relief.

      Any new readers, I hope this gives you some hope too.

      There was another lovely chap on here too who said he was able to let go and sed the jerks as a tension release. A technique learnt completely by himself.

      If you are in your darkest moment reading this. Remember I tried to commit suicide twice and felt there was no hope what so ever. Now I see the world in a new wonderful light.

      • Just following this up with a quick message. Again not trying to say anyone should mess with meds but I do want to give hope to anyone who feels they will be stuck with them. It was just a thought that came afterwards.

        Healing thoughts to everyone. Take care of yourselves.

  21. what was the other workbook you’ve purchased? would like to try your route…thanks in advance

  22. I am new here but have been reading every post. Like most of you, I’ve tried everything. This is year 3 for me of the hypnic jerks. I get no sleep but maybe 30 minutes it seems a day of REM. The jerks happen at onset preventing me from falling asleep. It started with severe insomnia due to going on a low carb diet. I thought adding back carbs would fix it. It didn’t. I was put on ambien and also elavil. I’m unsure which one aggravated the jerks, but I know the insomnia from the diet was what drove me to sleep meds (I couldn’t even fall asleep, wired but tired). Meanwhile, I did CBT and sleep restriction. I saw light at the end of the tunnel. Then as soon as it seemed to resolve, I’m back to square one. I keep on trying to think what was different about that day that made me spiral back to non-existent sleep. Was it the weight lifting? I don’t know.

    I tried sleep restriction again and days and days went by, then the hypnic jerks started getting progressively worst. So of course, the hypnic jerks are now causing more severe insomnia. It’s all a vicious cycle. I began with insomnia, and now the hypnic jerks are preventing me from the ability to try to practice sleep restriction. Anytime my body becomes relaxed at the stage of falling asleep, a body part-feet, arm, even closing of the jaw, jerks or feels like it’s jerked although my spouse can’t see it happening. Only I can feel it happening. Sometimes both my feet twitch to th side, sometimes it’s an arm that involuntarily jerks, sometimes my jaw just does a quick closing snap.

    My sleep doc has prescribed me ambien and gabapentin and I am reluctant to try it. I worry that this will bury me deeper since all these drugs affect our brain chemical.

    But I have had 0-1 hour of sleep a day for 1.5 years now. I also have MS so I don’t know how long I can tough it out any longer, hoping that the situation would correct itself. I feel that at this point, I need to be on something. I just feel that if my insomnia were corrected, than the jerks will lessen. But I think the ambien and/or elavil had triggered these in the first place, so am at a loss what to do next.

    What would you recommend for someone with my profile? I would appreciate any suggestions at this point, from anyone.

    • Clonazepam .5 mg (or more if needed) 45 minutes before bedtime until sleep has returned to normal. This is just an opinion and I am not a medical professional. I know the benzo haters will scorn me for this. If the clonazepam is going to work for you, you will have immediate relief. Getting as little sleep as you are describing is a medical crisis and will lead to other health problems in my opinion, especially as prolonged as you are reporting this going on. Once your sleeping has returned to normal for a period of time, get off the benzo as quickly as you can while transitioning to something with less side effects. Get off of everything else. Again, just one opinion and I am not a Dr. Best wishes. Please keep us informed as you trial and error different treatment methods. It will help us collectively. Thank you for sharing your story.

    • Anonymous said:

      Hi lee. Sorry you have this so badly. How long were you on ambien/elavil? When did you stop taking them? Have you tried anything else? Maybe try the gabapentin, but steer clear of the ambien since it may have brought these on.

      • I was on ambien and elavil for about a month. I am always conservative and so I alternated between the two and only took a total of 3-4 a week. When I went back to the sleep doc, she recommended that I take ambien for a whole year every day while practicing sleep hygiene. She felt that if lack of sleep and the anxiety from it would be a non-issue for me, I would be able to practice better CBT techniques and sleep hygiene. When I decided to follow her route, I took ambien daily for a total of 2 weeks. Then one time I had a hypnic jerk before the ambien was able to kick in. I thought nothing of it until I decided to wean off it, as I felt that the sleeping pills contributed to my body not being able to learn how to “fall asleep” on it’s own.

        When I mentioned the jerks to the sleep doc, she thought it was due to my m.s. When I mentioned the jerks to my m.s. specialist, he felt it was due to the ambien. But he was careful and had mri’s done of my brain and cervix. He felt there were no lesions that could explain my hypnic jerks.

        He also referred me to a sleep neurologist to test for sleep apnea. It was determined that I did not have it. I decided to seek the opinion of a 3rd sleep doc who just mentioned that hypnic jerks come and go in cycles. I suspect that due to my age (44) he did not want to issue me any meds as he usually sees older patients who have sleep issues. Plus he’s conservative and recommended that I do a refresher course in CBT. Of course, since I was terrified of having to be dependent on drugs, I followed his advice. This didn’t help, as I was getting only 0-1 hour of fragmented sleep daily, but since I do not work, I convinced myself that it will be okay eventually.

        But I know that I am getting weaker and don’t want to get more ill. So I went back to the first sleep specialist and she issued me Ambien again on an as needed basis, as well as the gabapentin.

        I finally took the gabapentin last night, and still experienced the nightly jerks. Although it made me drowsy enough that I was in and out of sleep (very fragmented). But during the times of wakefulness and transitioning to sleep, I would experience these jerks. I did not take the ambien, because I was still unsure if ambien or elavil had anything to do with the jerks. The sleep doc said that antidepressants usually make the jerks worst, so I did not even want to toy with my leftover elavil at all.

        This is very frustrating to say the least. Like many, I’ve googled and would try everything and anything in terms of supplements to alleviate this problem. Calcium, magnesium, potassium, anticonvulsant herbs like valerian, hops, passionflower, etc. ; gaba, taurine, inositol, niacin, niacinamide, melotonin, fish oil, p5p, b complex, the list goes on. If there was even 1 person who said they cured it with “so and so”, I would quickly go to amazon and buy that supplement only to be let down. Someone said lecithin and ala. No. Someone else said cayenne pepper tea. No. Another person said nac. No. Someone said krill oil. Just bought that last night…not expecting a miracle, but everyone on this board knows how it feels to suffer like this and the desperation one experiences in trying to resolve this for sleep to occur.

        I am at a point where I am thinking that my initial case of insomnia led to the sleeping pills that led to the hypnic jerks. But since the hypnic jerks allow no sleep to occur, it becomes a vicious cycle: no sleep triggers the jerks and the jerks trigger no sleep.

        I often wonder if I should go back on something else for sleep and if I get well-rested, I would be able to reduce the jerks. But then a lot of sleep aids trigger or cause these jerks. Sometimes I feel I don’t help myself when I overthink. It makes it difficult to decide the next course of action. Benzos I read may help but withdrawal can make the jerks and insomnia come back and be more intractable. I also read this of anti-epileptic drugs and that some may even cause insomnia, which I don’t want. *Sigh* so frustrating.

      • Everything you’re describing is a familiar story to most of us…I believe my hypnics came on due to something autoimmune related. I had increasing insomnia and then came the jerks that prevented sleep. My jerking was not triggered by medication because I wasn’t on anything at that time so I believe it was from prolonged insomnia or some chemical imbalance resulting from insomnia or autoimmune issue. You could try chlonodine or prazosin that’s been suggested as helpful. Those choices seem more benign in the long run. Hope that you will stay in touch. This blog is so helpful and seems to have gone quiet. Good luck to you. The Dr surfing is frustrating. For me, gabapentin did not help with the jerking and increased the insomnia. Keppra helped me initially but lots of side effects and prolonged use did not work.

  23. Thanks for the quick reply. I too, was afraid of the gabapentin causing insomnia (I read it does this at higher doses). So I halved the pill my doc gave me. Still had the jerks.

    I know what you mean about dr. surfing. When I went back to the original sleep doc she seemed upset that I went to other docs. I guess she had access to my medical files and mentioned that I saw so and so on this date, as well as so and so on that date. At this point, I have been doing that because I haven’t really found one that I feel confident in. She’s the better of the ones I’ve gone to, I guess.

    I was going to try the clonidine/prazosin route but they seem to be anticholerginic, and I know elavil is, and also the antihistamines are. My jerks seem to be aggravated on the anticholerginics. So I’ve hesitated…but desperate enough that I still have them as ‘options.’

    I do know of a site that sells prazosin and depakine so have toyed with experimenting on myself with these drugs. But the fear of not being monitored by a doc on these has me hesitating as well…

    • Anonymous said:

      I feel for you as I’m in the same boat. I sleep more than you do (1-4 hours… Sometimes 5-6), but I know how exhausting and scary this crap is! Like you, I alternated two meds before this nightmare started. Clonazepam and trazodone… Which both are kind of similar to what you took as ambien is often referred to as a “baby benzo”. I know a pharmacist who reacted just like us. She was using ambien and trazodone and now suffers with some jerks but mostly brain zaps at the moment of sleep. She told me that she believes the trazodone that we both took played an equal part in causing the chaos. Both her and I do not take anything now and we are just waiting… (And WAITING!) for something good to happen. It’s been a damn long time with this and I can only believe in recovery due to the fact that I experience periods of time that symptoms become much better. Does this ever happen to you? It’s like my brain is a Rubikscube and is trying to get itself right, but slides backwards even after so long off the meds. I also know a lot of people who healed from this, so that helps me cope as well. All I know is that I am someone who cannot ever take benzos again, trazodone and probably most other pych meds. The people who can are quite lucky. There is a genetic test that shows which drugs we can or cannot metabolize correctly. I have not done it myself yet, but I know several who have, and interestingly, they cannot metabolize most medications. I’m sure I’m one of them.

      You aren’t getting nearly enough sleep… I know that torture as I would go up to 4 days with zero sleep. So when was your last ambien/elavil? Unfortunately, gabapentin didn’t help me either. I had to take seroquel in my early days off of clonazepam. Then I was able to switch to mirtazipine for 4 months. I know of one other person who was helped by mirtazipine but I don’t think I’ve met anyone else who took seroquel for this condition. It’s very sedating and can cause issues, but it didn’t seem to exaggerate any of my jerks. It gave me 1-3 hours sleep when I otherwise would not have slept at all.

      There are a lot of people who are on benzobuddies that are recovering from z-drugs like ambien. You may want to connect with some of them like the pharmacist I mentioned. I can be found there if you ever want to continue a conversation with me. I probably won’t be posting here again unless I see another person like you pop up. Best wishes to you and I hope and pray that we all see the end to this nightmare.

      • Hi Lee – I don’t think ambien or gabapentin will do much. Initial titration of the gabapentin might just zonk you out enough to make you fall asleep in spite of the jerks, but once you’ve adapted to it, it tends to be less sedating and then you’re stuck on it (that’s what happened to me).

        If you’re looking for something to take every once in a while and is easy to acquire, try 30 mg of dextromethorphan (Robitussin). Even just taking it twice a week – if it works for you – would at least give you two nights of sleep a week.

      • Thanks for such a sweet message. I honestly don’t remember when I stopped the ambien/elavil. My lack of sleep is so devastating that I do not have a good sense of time…If I were to guess, I’d say that I stopped about 8 months ago. But it could have been longer.

      • Elian, I went on amazon to purchase Robitussen. Will let you know when I start the trial. 🙂 I will be the guinea pig for this.

  24. Also, does anyone know of any stories involving successful use of antidepressants to treat the jerks? This probably sounds like a dumb question, since nearly every post on this blog mentions mirtazapine, trazodone, amitriptyline, etc. Those drugs are prescribed because they have sleep-inducing properties, but they seem to backfire for many people and end up causing or exacerbating the jerking. But what about things like Effexor, Prozac, Clomipramine, i.e., other classes of antidepressants that typically aren’t prescribed specifically for sleep disorders? For instance, Jessica mentioned a woman who had withdrawn from benzodiazepines, developed the jerks, and was later started on Prozac with subsequent resolution of the jerking.

    • Did 3 month trial of Zoloft (sertraline) that did not work. Heart pounding and brain zap feelings intensified. No improvement with insomnia or hypnics. I have not tried any others. I am wondering in the class of SSRI’s would it be worth trying a different one? Also, Elian can you comment at all on the anticholerginic (sp?) effect of elavil, chlonidine, and prazosin? Do these act as antihistamines? Early on I had tried benadryl which did not help. Also why is it that mirtazapine seems beneficial to some and potentially causative for others? Lots of questions…sorry.

      • You could try an SNRI like Effexor or clomipramine, which block both serotonin and norepinephrine re-uptake. But I’d wait to see if other people chime in with stories about those drugs. I’m talking about clomipramine with my sleep doc at Mayo right now.

        Elavil is a strong anti-histamine and very anticholinergic; clonidine and prazosin are not. I think some people mistake the effects of alpha drugs for the effects of anticholinergics – sedation, sometimes dry mouth. But the binding profiles of prazosin and clonidine don’t show any anticholinergic activity.

        I don’t know why people have such varying responses to mirtazapine. In my case it started everything. On paper it looks like it should make things quite bad, due to the very strong alpha2 blockade (the opposite of clonidine’s action). But it’s important to distinguish between acute and chronic use and effects of these drugs, which obviously vary quite dramatically – when you start an AD, you feel worse than you did the week before. But a few weeks later you’re on top of the world. At least, that’s how it’s supposed to work, but it’s never that easy. For some people, perhaps the mirtazapine gets them to sleep initially in spite of the jerks, and with continued use, one is desensitized to the alpha2 blockade, sleep quality starts to improve, lots of good downstream effects all over the brain. But you have to weather the shit storm at the beginning, and you can’t know in advance if it’ll pay off. So aggravating.

        If I were to draw a picture of how I think all of this works, at the center would be a bubble labeled “locus coeruleus dysregulation.” Then there would be a bunch of arrows pointing to it with other labels, like “benzodiazepine withdrawal,” “SSRI withdrawal,” “PTSD,” “autoimmune disease X,” “glucocorticoid receptor disfunction,” etc. The main site of the problem is always the same, but there are many ways for it to become dysregulated, because there are so many different projections and innervations (everything in the brain is connected to everything else, more or less). That means that there are a bunch of things that *could* work, depending on what exactly is going wrong for you. For instance, for you Lisa, prednisone stopped the zapping acutely. I still think the benzodiazepine folks could benefit from prazosin, since prazosin won’t affect recovery of the gaba receptors, but it may give you much needed sleep, which will only help that process. This is the long answer to your question about different responses to mirtazapine.

        I think everyone on this blog who’s still having troubles should go buy some Robitussin pills, wait till they drift off with a jerk/zap, then pop 2 of them to see if that gets them to sleep. That would enable you to draw a tentative, metaphorical arrow to my “locus coeruleus” bubble, providing some initial reassurance that prazosin and clonidine could be quite helpful. Seriously, half the torture is just not knowing what the hell is going on in your brain (at least for me).

      • Elavil makes me jerk lie nothing else I have ever tried .

  25. Oh my..had to cancel my Robitussin amazon order. They were the non-drowsy type of tabs. Anyone happen to know a vendor that sells the drowsy variety?

    • P Lee – you need to get the pills that only contain dextromethorphan, typically 15 mg per pill. Any other additions – sedating anti-histamines and what not – will have unpredictable results.

  26. Mark, I had the same experience as you with Elavil. The only other time when I was jerking this much was when I tried medical marijuana to try to alleviate the problem. OMG…I was jerking so violently and frequently. I was so traumatized that I do not even want to try varying doses, even though the lady at the shop suggested so as well as to vape it. No thanks. One traumatizing episode is enough.

    • Yeah it sure why things that relax you make you jerk . It is opposite of how it should be . I may try clonodine as Elian suggests but it’s also an SSRI OR SNRI. Had other unwanted effects like no libido the rest of them do for me anyway

    • Anonymous said:

      Thinking of something else clonidine not ssri

  27. I just re-ordered the Robitussen…blaming it on the lack of sleep…lol…i realized that I am only taking the Robitussen to test the theory as to whether or not clonidine/prazosin would be of benefit to me.

    Also, I found a link on mayo that kind of details the types of antidpressants: http://www.mayoclinic.org/diseases-conditions/depression/in-depth/antidepressants/art-20046273.

    Interestingly enough, trazodone and mirtazapine are considered in a different class of antidepressants..maybe that is why some folks report success with them, while others don’t.

    For my own hypothesis, I think I need an antidepressant that helps with serotonin increase and adrenaline decrease, as I think I am low on serotonin and high in adrenaline. That may be at the root cause of my insomnia that drove me to ambien and elavil in the first place, and that now turned into relentless hypnic jerks.

    So I may ask my dr. which antidepressant would help with those issues. I don’t know…just thinking out loud..

  28. The reason for my Robitussin suggestion is that, if it works, it points you to an orbit of potentially helpful things that can be taken long-term. Robitussin can be taken twice a week I’d say, perhaps three times, but you will eventually develop tolerance to it if you take it more than that. Clonidine tolerance is also possible in some people after a few months. Prazosin, on the other hand, I think is very promising because of its long-term efficacy: folks with PTSD can take it for thirty years, and it still works.

    My personal routine is still 30mg Robitussin twice a week, clonidine two or three times a week, and temazepam twice a week. I’m not messing with it because it’s been working for quite some time now. But I am considering trying other interventions with my sleep doctor to simplify the routine, and treat some of my other problems as well, namely OCD – which some of you might have guessed from all of my neurotically researched information on here.

    • Elian, I should only hope that the Robitussen works on me as well as it has on you. Wouldn’t it be great for me to then know the potential treatments that will help me with these darn hypnic jerks…And don’t worry about the OCD. I can totally relate because it does run in my family and I’ve been told that I exhibit OCD behaviors. I tried natural supplements for that as well (inositol, etc). But the supplements either did not work, or if they did, would aggravate my hypnic jerks. Ridiculous what we have to go through to try to help ourselves.

      • Thanks, yeah, it’s totally ridiculous. I’m thinking about giving clomipramine a shot for the OCD. It very potently and acutely suppresses REM sleep, so maybe there’s something there to help with the zaps, I really don’t know.

      • Elian, if you do indeed try the clomipramine, let me know if it helps. The reason why I’m interested is that it is listed as one of the tricyclics that preferentially inhibit the reuptake of serotonin (by at least 10-fold over norepinephrine). The others being imaprine and trimipramine. If my theory is correct that an increase in serotonin and decrease in adrenaline would be helpful to alleviate my jerks and insomnia, then clomipramine would be helfpul with the serotonin aspect of it.

      • P Lee – well, it’s not quite that simple. First of all, clomipramine has a metabolite, “desmethylclomipramine,” which is a potent norepinephrine reuptake inhibitor. So clomipramine is really more of a dual agent, but many folks aren’t aware of this.

        Second, the reuptake inhibition of norepinephrine in the brain (aka “noradrenaline) by an NRI (nortriptyline, desipramine, atomoxetine, desmethylclomipramine, etc.), after a few days of administration, actually begins to decrease activity in the noradrenergic center of the brain (the locus coeruleus). That’s why these drugs can actually be used to treat conditions such as panic disorder, which seems counterintuitive at first. In other words, thinking in terms of “increasing” or “decreasing” certain neurotransmitters in the brain is too vague to really mean anything.

        My theory is that all of this stems from dysregulation of the locus coeruleus (“LC), and that the zaps/jerks are related to spontaneous firing of norandrenergic neurons at sleep onset, which innervates the spine via the brain stem, hence the coincidence of limb movements and “zaps.” Theoretically, at high enough doses, an SSRI should gradually reduce activity in that part of the brain over the course of several weeks (hence the brain zaps people get upon withdrawal). But an NRI should act more quickly, in just a few days or so. Robitussin (an opiate), clonidine, and prazosin all quiet activity in that part of the brain.

        https://academic.oup.com/ijnp/article/3/1/1/677391/Progressive-attenuation-of-the-firing-activity-of

  29. Your explanation does make sense and is convincing. I am crossing my fingers that I will be one of the folks who can benefit from the same solutions you are using for your brain zaps. My order of Robitussen won’t come until June 5th since it is my subscribe & save date…can’t wait to try.

    I guess I had assumed that an increase in serotonin would help my case because I had used tryptophan for awhile and during that time, my sleep was vastly improved and my jerks were lessening in severity and frequency. I only stopped the tryptophan because I experienced a nagging cough and muscle pain and when I googled the symptoms along with “tryptophan,” I ran across articles of people getting a horrible disease called EMS after ingesting tryptophan. It was originally thought it was due to either contaminants in the tryptophan or due to GMO processing. However, there is belief that a person can be genetically predisposed to getting EMS and that ingesting just pure tryptophan can also cause EMS.

    There have also been reports that EMS has also been reported in some people who have either ingested 5 htp, l lysine, or niacin. So I am being careful not to try those supplements as well. I’ve already got m.s. so don’t need EMS on top of that!

    Just wanted to explore other options that would increase serotonin for me…

    • If tryptophan was helpful, then yes, absolutely it would be worth trying an SSRI. Personally, I would be more inclined to continue with the tryptophan, although I understand the concern with EMS, which is a big mystery. You know, clomipramine in your case is really worth a shot. It has an immediate effect on serotonin reuptake, with 80% transporter occupation at just 10 mg. If tryptophan works, then yeah, you might get results with the lowest dose of clomipramine on the first night. And it’s more effective at treating OCD than any other drug.

      I’m sorry to hear about the M.S. You need your sleep! Are you currently being treated? Robitussin (dextromethorphan) is actually being used in M.S. trials right now, since it does a lot of wonderful anti-inflammatory things in the CNS.

      • Yes, there have been times where I wanted so badly to reinstate the tryptophan, but the risk of EMS is there, and I do not want to chance it. I read personal stories of those afflicted by EMS, and compared to what they go through, m.s. is a walk in the park.

        At first, I thought an SSRI would also be good to trial. However, I read an article that stated “In some studies, selective serotonin reuptake inhibitors (SSRIs), like sertraline and fluoxetine, have been shown to disturb/fragment sleep.” So that’s why I was interested in clomipramine instead, as I read that it reduces REM and increases consolidation of delta waves in stages 3 and 4 of sleep. Sounds good to me.

        Yes, I tried so hard to do CBT in spite of the hypnic jerks that I was average 0 to 1 hours of nonrestorative, REM sleep (went directly into REM stage rather than going through a proper sleep cycle). My health has been declining and I am just realizing that I can’t afford to have additional diagoses on top of my m.s. and hence, my attempt at trying to find a solution to the insomnia and hypnic jerks, since my sleep doc doesn’t seem to be so concerned about the hypnic jerks. She thinks it’s normal and I am too anxious about it. Well, no. Not when it is debilitating and occurs so frequently that it disrupts the process of going to sleep! So I beg to differ.

        I have an m.s. specialist who treats me with rebif. I’ve been doing that for a decade now. I didn’t know about Robitussin and the m.s. trials. More reason to guinea pig myself! lol

      • Anonymous said:

        Elian,
        Not sure if you’re still checking the email address you posted on here awhile ago. But I sent you a message. Thanks.

  30. for hypnic jerks would any of your consider going to a neurologist specializing in Movement Disorders, or a neurologist specializing in Sleep? Another sleepless night, so I’m not at all happy with the ambien + gabapentin route the sleep doc has me on…wondering if I should still continue with her (I’ve hopped to 2 and she didn’t seem too happy about that) or move on to a movement disorder doc…

    has anyone experience any success with gabapentin? so far, i’ve only heard from those that didn’t have relief with gabapentin…

    finally, i have only been on gabapentin low dose (I cut the pill so that I ingest about 150mg). with such a low dose, i seem to be experiencing the jerks still, and they seem more strong and frequent. but the sleep doc said to give it a week for it to work. can anyone chime in to see if this is what their experience is?

    i’m unsure whether my low dose is not adequate to treat the jerks and maybe i should follow her advice and go for a week on full dose to truly test her claim…but since my jerks seem to be aggravated at such a low dose, i’m wary of going a full week at a higher dose, where the result may be even more violent jerks.

    has anyone been treated for gabapentin and the jerks were still there or worst in the beginning, and then subsided as treatment continued? thanks in advance…

    • I don’t think gabapentin will work. It made things worse for me, and I was on it for like 6 months, with improvement after I discontinued. If we go back to my locus coeruleus theory, you can see that the reason may be that gabapentin activates that part of the brain and increases noradrenaline release:

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2843419/

      I also think movement and sleep doctors are the wrong folks to be visiting, due to the irony that sleep-inducing antidepressants tend to cause or make the jerking/zapping worse. Rather, I think the jerking should be treated as a secondary phenomenon, and the zapping focused on instead. This means looking at more traditional classes of antidepressants (nortriptyline, clomipramine, atomoxetine, venlafaxine). If the zapping goes away, so should the jerking.

      • Thanks for the feedback. Unfortunately, my primary doc had issued me nortriptyline when I first complained of sleep issues. The nortriptyline just kept me up and feeling wired and tired…more acute insomnia. Now, this doesn’t mean that it won’t resolve the zaps or jerks. Maybe there is one that would resolve both the insomnia and jerks for me. One can only wish, right?

        Anyway, right now I’m under the care of a sleep doc, and just not feeling the ambien and gabapentin combo is the way to go…I emailed her stating that the gabapentin seems to aggravate my jerks, so will wait for her response on the next steps…

      • Is everyone talking a good multivitamin ?

      • Nortriptyline is initially activating, but most people quickly adapt to it and it becomes very helpful for sleep. You can also take it in the morning initially until the activation wears off. How long did you take it for? What was your dose?

      • Elian – I am curious if you will be trying the clomipramine? Also, I too have both a regular neurologist and a sleep specialist (also neurologist) in the sleep center at Mayo. Maybe I should ask for second opinion within one of those departments as I seemed to be just brushed off with a clonazepam script. They tell me that is the treatment for these. I don’t know if you are willing to drop any particular Dr’s names that you are satisfied with there? Thanks to you and all for all these helpful theories and suggestions.

      • Hi Lisa – I’m not really comfortable sharing names, but the reality is that no doctor has the answer (except for clonazepam). You just need someone open minded who’s willing to try different things with you.

      • Re clomipramine – I don’t know. I get RLS very easily. I think nortriptyline is a better bet in my case. It’s just that I have a lot going on this summer, and I’m afraid of making any major changes while things are mostly smooth at the moment.

  31. I took it for 2 weeks at 25mg a night. It didn’t help my insomnia at all…made me very alert. But at the time, it was for my insomnia. I didn’t have hypnic jerks at then.

    • Ah, interesting. Well the fact that it didn’t cause hypnic jerks for your is in itself promising. I apologize if this is a redundant question, but what initially started the jerks in your case?

      • I had severe insomnia. I was given ambien and elavil that I alternated and took only a few days a week. One day, I began to have the hypnic jerks before trying to fall asleep but didn’t think anything of it since taking the ambien knocked me out quickly enough that I didn’t have to experience the jerks unless I wake up again and try to drift asleep.

        CBT was promising and I was able to regain my sleep cycle. Then out of the blue I had severe insomnia again (inability to fall or maintain sleep…) CBT for months did not help. With the extreme lack of sleep deprivation affecting me, I went back on ambien and elavil (alternating them). My jerks became progressively worst, more frequent and more debilitating. They were at sleep onset and every time I was drifting off to sleep, a limb would jerk be it a foot, a leg, an arm, my stomach, my head, or even my jaw.

        It was my m.s. specialist that felt that ambien and/or elavil triggered or caused the jerks. They are debilitating and since I was told to continue with CBT by the sleep doc, I have endured this for 3 years, the last 1.5 being the worst and more debilitating.

  32. Anyone got this post viral/post bacterial infection?
    Anyone can relate to dystonic movements as well as the myoclonus? They are a bit different, so myoclonus would be more like a sudden twitch, and a dystonic movement would be more like a limb moving involuntarily, or being unable to coordinate a muscle movement. Regarding the dystonia, i’m talking about a subtle movement, not the ones you usually see in clinical cases where people bend and cant control themselves

    • I don’t have that, but I did just get off the phone with the contact information that someone on this forum posted regarding someone who treated him with herbs for hypnic jerks. While on the phone, the person (Alan Sher) said he endured hypnic jerks from a virus and it sort of played itself out.

      I was calling to get the price per visit since he also is another last resort option. If all else fails.

      • Hi P Lee,

        Do you know which herbs he took? Id be very much interested in knowing

        cheers

      • Rui, he didn’t mention that to me. I just assumed he meant that the jerks took its course and eventually, he didn’t have them any longer.

    • Lisa – I hope I wasn’t too discouraging with my reluctance to publicly share the names of my doctors. Here’s what I would do:

      Bring this article in to your doctor:

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3733524/

      Introduce it casually. Everything has to be cool, otherwise they’ll likely chalk you up to being an anxious nutcase scouring the internet for data you don’t understand. The article is short, and the point is that noradrenergic firing is the source of “brain shivers.” In the discussion, focus not so much on the jerking, but rather on the brain zapping. The doctors I showed this to were intrigued, because brain zapping is a highly relevant and difficult withdrawal effect with antidepressants. If you can simply steer the discussion towards the noradrenergic basis for the zaps, you can then enumerate some anecdotes about drugs you’ve heard helping people, such as clonidine and prazosin in PTSD, LC-calming tricyclics like nortriptyline, and atomoxetine, as pointed out in the article. Don’t sound too sure of yourself – act a little dumb, open to suggestion, leave some questions and gaps that will give the doctor an opportunity to express his or her knowledge. You have to stroke their ego ever so gently, while providing them a basis to think about drugs other than clonazepam. LOL. Sad but true.

      • Elian, do you think your theory would still apply to someone like me who does not experience the brain zaps, only the body jerks? Hence, the same treatments that may potentially benefit someone like me, who experiences only the jerks? Thanks in advance.

      • Anonymous said:

        Zaps come when the jerks are at their worst.

      • Anonymous said:

        Although I’m sure we’re all from different parts of the country, it would be great if we could find ONE doctor to see all of us. Maybe if one doctor saw enough patients with the same/similar problems, and therefore took enough interest in the problem, we could all find a cure(s) together! I personally would be willing to travel any where for help.

      • Yes. My lucky break was drinking reverse osmosis water for a few days last year, and having the jerks really abate. I then became aware of the zaps for the first time, which the shock of the jerks presumably had always been masking. I guess serum calcium levels can really vary if you’re switching between hard and soft water. Some people are sensitive I guess; I don’t know.

        In any case, once I had the term “brain zap” to work with, I was able to pursue the problem in a different way and figure it out. The other lucky break was taking Robitussin for a cough and having the brain zaps disappear. That one was tough to decipher, since Robitussin does quite a few things, but in the end I really just think it’s the opiate action that’s chilling out the noradrenergic firing in the LC, which fits with the hypothesis of that article I posted above. (Whoever came up with that hypothesis is a saint – they didn’t even come upon it accidentally, but simply by thinking about the problem. Amazing.) On the basis of that theory, I moved on to clonidine, it worked, etc.

      • Anonymous said:

        Elian, did nortriptyline work for you? If so, did it affect your Sexual functioning? You may not know. Every other SSRI has crushed my functioning.

      • I tried 5 mg but 10 mg gave me RLS. Seriously, if it weren’t for the damn RLS this would be a lot easier for me. I’m considering reinstating and titrating even more slowly, but afraid to make any changes at the moment, since I have much on my plate and sleep is good.

        Notriptyline shouldn’t affect sexual functioning, since it doesn’t inhibit SERT. It’s really a great old drug; I feel like it should be used more for depression.

      • Let me rephrase that – nortriptyline impacts SERT quite minimally relative to its NET inhibition. However, if you want a more sure-fire-non-boner-killer-anti-brain-zapping antidepressant you can take desipramine.

      • Elian, I found an interesting comment a poster from a different forum made: “I too, had many nights of jerks/jolts when relaxing and trying to go to sleep. Besides the jerks I would make an involuntary loud groan like noise. I would startle my husband and my mini dachshund. It was so hard to sleep anyway and with this going on it made sleep almost impossible. I haven’t been on this site for some time because I have been doing so much better. I started on Northera (Droxadopa) in June. It has completely stopped the jerks along with helping many more symptoms.” When I googled the drug it was described that “Droxidopa is a synthetic amino acid precursor which acts as a prodrug to the neurotransmitter norepinephrine. Unlike norepinephrine, droxidopa is capable of crossing the protective blood–brain barrier.”

        This might align with your theory, no?

      • Hi P Lee – yes, it does align. And thanks, I’d never heard of this drug before. I also suspect that the reason people have success treating their brain zaps with copious amounts of fish oil is due to its effects on norepinephrine.

      • Yeah. I tried the fish oil..not sure if I was doing copious amounts of it, but I took 1200mg, 3 times a day. And it didn’t do anything for my jerks. I bought krill oil that is expected to come soon, but am not holding up home for that remedy as well…but doesn’t hurt to try…

      • Fish oil works acutely. I’d take a bunch of pills right before sleep, and not the super-concentrated stuff either, but something more like Swanson’s 180 EPA / 120 DHA el cheapo stuff. It’s not really a sustainable solution I think (GI effects and what not), but it’s always interesting to see if something works.

  33. In agreement with anonymous. How many people are on this forum anyway?

    • Anonymous said:

      I don’t know how many people follow it or just check in from time to time. You can count me as #1.

      • I’ll be #2. BTW, I’m pissed that I threw away my LDN bottle. Awhile ago, I was trying to experiment to see if it helped my m.s. It didn’t. Now I wish I still had the LDN to try to see if it will help with the jerks. My luck.

      • Anonymous said:

        I’ve been thinking a lot about my comment yesterday (if we could just find one doctor to take an interest…). I really think that is possible. I personally know a girl with a very rare condition. Very little is known about it. But there is one doctor in the U.S. who has taken an interest in this condition. So what have the people done that are suffering with this condition? …they’ve found each other on the internet, are going to see this ONE doctor, and many of them are healing. Couldn’t we do the same?

      • Hi P Lee – I don’t think LDN would help acutely with the jerks. After it wears off, you get a very modest boost in endorphin levels, but certainly nothing like the kind of opiate effects you’d get from 30 mg of dextromethorphan. On the other hand, I can see something like LDN having long-term potential as it works on your CNS over time, perhaps.

        Anonymous – I can talk to my sleep doctor at Mayo – who’s interested in hard-to-treat conditions and is reluctant to just throw benzodiazepines at people – and mention this forum.

      • Thank you for suggesting to the group and to your doctor. If there would be any way for some or all of us to be seen by the same provider describing such a similar profile of symptoms that we all seem to have would be not so easily dismissed. I think someone at Mayo would be a great option because of the research potential there. Strength in numbers on this I think! Do others think this would be a realistic option?

      • Anonymous said:

        Yes, thank you Elian. That sounds like the exact kind of doctor we need.
        Lisa, there’s not a Mayo Clinic any where near me. But I’m willing to go any where or do anything to find help for this! So it’s a realistic option for me!

      • Anonymous said:

        Does anyone get the feeling of being shocked? Or are you just experiencing a muscle twitch/jerk? And does anyone have other odd symptoms waking you such as facial zaps, banging noises, etc.?

      • Yes everyone gets all of that.

      • Elian still waiting for your comment on nortryptaline . It does work on seretonin. Correct ?

      • A teeny tiny bit. Not even close to an SSRI. Why do you ask?

      • Anonymous said:

        Because it is an antidepressant. Every other one I have take affects my libido. It is similar to Amatrypitlyne right? That makes me jerk like crazy and kills sex drive. I’m not sure where you go the tineey bit. Zoloft is the worst I tried for sexual function.

      • Mark Jaggers said:

        Mark Jaggers
        (502) 749-3779
        (502) 345-9974
        Mark@trifectatelecom.com

      • Mark – you’re a sex machine, especially with all that T. Nortriptyline will be fine for you. Some people even find that it increases drive.

      • Anonymous said:

        Ill try it but not sure why it’ different than elavil

      • Tricyclic antidepressants inhibit sexual desire and orgasm. … For example, clomipramine causes orgasmic difficulties in up to 90% of patients, while nortriptyline causes more erectile dysfunction but has less effect on orgasm. 25. Monoamine oxidase inhibitors are also associated with sexual dysfunction.Apr 2, 2013

      • Nortriptyline is a metabolite of Elavil, actually. Your liver processes Elavil and shoots out nortriptyline. But nortripyline has its own unique pharmacological profile.

      • Yes, high doses of nortriptyline increasingly inhibit prolactin and cause anti-cholinergic effects. But I suspect relatively low doses are all that’s needed for the zaps.

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