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.

721 thoughts on “About”

  1. I also read that NAC, vitamin C and other antioxidants can help sleep apnea.

  2. Go back to the previous page, toward the bottom, in the older comments, to read what I just wrote about Dr. Gominak and what she has to say about vitamin D. Hopefully, it will help someone!

  3. I’m suffering jerks for more 4 years now. They all started after appr 1 year of insomnia problems I.e bad quality sleep, night arousals. My view is if I can improve quality of my sleep I hope I can fix jerks. In the recent couple of weeks I have decided to start recording my sleep patterns on a daily basis on my smartphone. I also bought a fitness band to record heart rate which can be sync with phone. Now with this I started recording during each night heart rate, body movements, sleep cycles and snoring. What I’ve discovered immediately is by being in bed of on average 8hrs in fact I only sleep 5hr. ~1 hr is spent on falling asleep and the other 2 several aurousal during the night. Interesting that my heart rate Bpm picks at night are happening at the same time as arousals. It might be a sleep apnea problem or be some other cardiology problem. I’m going to get some more statistics on my sleep in coming weeks and share with my doctor

    • I read that sleep apnea does cause the heart rate to go up because when you stop breathing, your adrenaline kicks in. Get a sleep study done if you can. I was in bed for seven hours during my sleep study and only slept for two or three of the hours. They said all of my arousals followed an apnea, and I was very surprised because I hardly ever wake myself snoring, and I’m not overweight. I think they said my apnea is mild too. Look up Dr. Gominak’s findings on vitamin D and apnea/sleep if you haven’t already. Vitamin D can get rid of sleep apnea. You may need/want to take additional vitamins also. I also read that apnea is caused by a serotonin deficiency. Vitamin D is supposed to boost serotonin.

  4. yes to the earlier comment testosterone is not the same as cortico steriods and yes i dont know how to write very well lol i wil work on it.But cortico steroids is more like a pain killer and vitamin d believe it or not is a steroid hormone but doesnt give any relief i believe in most cases because its the wrong type of hormone prednisone is used to treat the jerks in morvans and isaacs syndrome.I thought some of the others on here would look at that and find that interesting,not only that but the hypothalamus creates steroid hormones/hormones thats why i thinks its related.When morvans and isaacs starts it starts with the jerks then people go sleepless and then the neurological symptoms follow such as dementia,hallucinations,dreaming while awake,being mute unable to talk,walk,eat,or do much of anything.If you have during the day twictching muscles aka not jerks muscle fasiciiations under your skin like worms crawling under your skin they are called is another tip off you have the auto-immune disease as well.Whats funny is if maybe we were treated right away with this i believe we couldve prevented or the doctors couldve prevented it all together in most of our cases that we have on this website,rather be cured than have to take benzos for three years to ten years for some on here..Its been three and half years fo me so far want it to end.

  5. Im still trying this new thing and it seems to be working prolly wont work tonight because i kinda fell off the wagon today but well see got another 2 nights of amazing sleep with .1/2 milligram instead of the 1 point 2 milligram dose that i usually have to take,but tonight i thinks its gonna be a rough one.But i will keep you all posted and hopefully i found something that may work for some of us.Might not be a cure but it might give relief.Still dont wanna get my hopes up cause its happened where i find something that gives temporary relief but its only temporary but so far this has worked the best.

  6. prednisone with clonazepam does help its one of the only drugs that ive been able to use with clonazepam but no ive been trying something else i just want to make sure its that before i start telling everyone about it ill know in about three days.

  7. Has anyone tried trazodone for the jerks? My doctor recently prescribed this as an alternative to ambien but I haven’t tried it yet. According to my doctor, it’s actually an antidepressant but is used primarily for insomnia now since it makes you tired/relaxed.

    • Anonymous said:

      I have taken trazodone for a sleep for a number of years. I have found that while heavily sedating, it does nothing, good or bad, for the jerks.

  8. So I got my CPAP to try for this week from the doctor, but I still had the jerks last night. They kind of gave me a false hope telling me I moved when I had an apnea, but I found out yesterday I’m having 27 apnea every hour, so the fact that they could tell a movement was from an apnea seems strange since I have so many of them. I think the other problem was that I didn’t have hypnic jerks the night of the sleep study for some odd reason, since I have only had two nights without them since this all started. I had some trouble sleeping with it last night, but I’m hoping if I can learn to sleep with it, it will stimulate my parasympathetic nervous system, and maybe help the jerks in some way. I woke up at 2:30, drank some tart cherry juice (natural form of melatonin) at 3:30, and I don’t think I really had any jerks for the next three hours until my alarm clock woke me up. But I did not sleep with the cpap during these three hours. Anyways, I think my first four hours of sleep with the cpap was probably more restful, so anything that can help my sleep at this point is worth a shot. I also read that sleep apnea causes damage of the brainstem that can be reversed after six months of using a cpap. The damage involves over activating the central nervous system (possible cause of jerks). After using a cpap for six months, this damage is supposed to be reversed. So maybe, just maybe, untreated sleep apnea could still be the cause of hypnic jerks, at least for me. Gotta hold out hope that there’s an answer and a solution to these terrible jerks!

    • I’ve had hypnic twitches on and off for three years. I did a sleep study after an initial three months. I didn’t twitch at all the night of my sleep study so they (the neurologist who specialized in sleep movement disorders) thought they had gone away. So did I, until they came back two weeks later. My point is that even specialists in the field don’t really know much; they are still a mystery. Clonazelam and other benzos help when they are very bad, but keeping your mind open to any solution is best. Personally I don’t think they are related to sleep apnea (because that was the line my GP was trying to peddle to me and the sleep study proved I didn’t have them) but everyone is different. Good luck to you!

      • Thanks for the reply. The problem is that my doctor won’t prescribe anything
        for hypnic jerks. The sleep specialist recommended three different medications for me (mirapex, clonazepam, and I’m not sure what the third one was). It’s been almost three weeks and I still haven’t heard anything about a prescription, so I’m assuming my general doctor decoded not to prescribe anything. It’s really fruse rating trying to get help with this, yet nobody wants to help me. I slept with the cpap last night and was so tired today I had to take an unrefreshing, jerky nap. I felt even more tired today than I usually do without the cpap, which I find interesting and discouraging at the same time. The cpap is still not getting rid of the jerks, but thanks for letting me know your doctor also blamed it on apnea. I even have small spasms during the day, and it’s really starting to concern me. My mother is sure that it is a deficiency. My iron and vitamin D are just a couple of points above abnormal, but it seems like most people on here have tried supplementing with those, and a lot of other supplements, so I’m getting discouraged that this is a deficiency. I’m also afraid that I will never get anything to help me, especially since my doctor seems to be so uncooperative in this matter. Just having a bad day I guess. Hopefully, I will get more sleep tonight and my mood will be better tomorrow.

      • You are very welcome. It’s easy to have bad days when you can’t sleep, and very frustrating when your doctor doesn’t listen. My doctor wouldn’t refer me to a neurologist so I had to get a new doctor. Seriously! And because the twitches didn’t show the night of my sleep study I had to later beg for the medication, which was clonazepam, not clonazelam, as I wrote previously. I’ll share something with you, but you have to be very careful: you can buy the medication you need online without a prescription if you look hard enough. I’m not advocating self-medication for anyone but myself, but when my clonazepam got low and I needed something similar, I turned to the web. Now, I only used the medication when I absolutely had to, as they are very addictive, do hence never got addicted. BUT! And this is important: I did mess around some with analogue medications (research chemicals) and got mildly addicted to them after a month of steady use. It two weeks of withdrawal to convince me of a safety issue.
        Do some research, look into analogue compounds. Someone mentioned etizolam here once. It is legal for purchase and works very well. It isn’t a ‘research chemical’; gig can buy it I. Factory sealed blister packs online. But be VERY careful! Never exceed the recommended dosage or take for longer then necessary. The withdrawals are terrible.
        Good luck to you! I’ve been there, and suspect this is something I’ll be dealing with got the rest of my life. Try anything that helps (vitamins, supplements, etc.) and only use the pills when you HAVE to.
        Take care.

      • I did try to buy clonazepam online, but the website wanted me to set up some Russian account or something, and I freaked out and figured that all of the websites are scammers. If you know of a legit website, please share! I actually had a prescription for clonazepam years ago for anxiety, and I never got addicted or had any withdrawal when I stopped taking it. I am desperate because my doctor talked to the neurologist about my case and he’s the one who told her I have hypnic twitches and that they are normal. I told her I researched the subject and that clonazepam is something that helps but she said she would not give me something that can create dependency and that may not help me, even though I had no issues of dependency in the past. When the sleep lab told me they were going to recommend my doctor give me clonazepam, I told them that she won’t give it to me and asked if I could I change doctors. They told me no and that it just looks bad if I change doctors just to get prescribed a certain drug. So now i have zero medications. Anyways, sorry for rambling. I just feel like if I push any harder I’ll be looked at as a drug seeker.

      • You certainly don’t want that label, trust me! My condition was caused by the one time use of a stimulant (an analogue of methylphenidate or Ritalin) and because I was honest with the doctors I got ‘drug abuser’ stamped on all my medical files. The only reason the neurologist prescribed clonazepam for me was because the sleep study was so expensive and I practically begged! I only took them when absolutely needed to make them last as long as I could. I discovered etizolam through a UK website, and I’ll share with you one that is in India. I’ve ordered from them five times with no problems. Etizolam is like diazepam (Valium) and works for the twitches (for me). It’s also very good for insomnia. The site is saferx.com and they also sell lunesta (if that helps you at all). They don’t require a prescription. Etizolam isn’t FDA approved, but it is a prescribed medication in India, Japan, and Italy. Price isn’t too bad. Almost forgot! There is a US vendor called top nootropics. They also sell it. They are in California.
        Be safe, hope this helps. Take care!

      • Also, I know nothing about analogue compounds. Can you please explain what they are?

      • Analogue compounds are medications in which the formula has been tweaked to change them enough to make them legal. The US has an analogue law but it is only for schedule 1 & 2 drugs like meth or opiates. Fortunately the benzos are schedule four. There are other research chemicals one can legally purchase (like the clonazepam I mentioned) but they are not prescribed meds like etizolam. I’d try that first since it is readily available.

      • Lousy auto spell! I meant clonazelam.

      • So, which one do you recommend I try first? Etizolam? Also, I do not know where I would buy a clonazepam analogue compound. Can you please recommend somewhere? It would be greatly appreciated.

      • Etizolam would be safer because it is actually a prescribed medication, but you can find clonazelam at a safe, trustworthy site called smokeychem.com. They are purveyors of research chemicals that carry it. I have tried it and it is comparable (actually a bit stronger) than its parent compound. But please be safe.

      • Thank you! You are a lifesaver! Looks like they are all sold out of clonazepam right now though. Not sure if that means they don’t sell it anymore or what. I should probably try Etizolam first anyways, like you said, since that would probably be safer. I’m still having some luck with vitamin D, maybe you might want to try that also. Higher dosages are better for stopping the jerks, the highest dose I tried was 5,600 IU, but I don’t weigh a lot and I only need incredibly small dosages of things. I feel like I have trouble sleeping about twelve hours after a dose, so maybe somehow it wears off, but that seems strange since it is a vitamin. So I’m probably going to experiment with taking it at different times. Hope this helps!

      • Vitamin D is actually a hormone, not a vitamin. Don’t know if that means it could wear off or not, but maybe, since it’s something we need to get everyday.

      • It takes weeks if not months for Vitamin D to build up in your system.

      • Anyone use betaloc meds? They are suppose to decrease heart rate.

      • I’ve read that you can raise your vitamin D levels in three weeks if you take 10,000-15,000 IU of vitamin D per day. I am not recommending anyone take this much though. I just read something online by Dr. Mercola that said calcium, magnesium, vitamin K-2, and vitamin D should all be taken together to create a balance since they all work synergistically. Too much vitamin D can cause a magnesium deficiency. Taking all of these together should help keep your vitamin d from reaching toxic levels also. Calcium and magnesium should be taken together at a 1:1 ratio, not a 2:1 ratio. Whether it takes months or not for your vitamin D level to increase or not, I’m still having a lot of success with vitamin D and the jerks. Yesterday, I took only 1,000 IU of vitamin D and had a great night, maybe one small jerk after waking up in the middle of the night. I took it a couple of hours earlier in the day than usual, I think around 2 pm, and I was able to fall right back to sleep after getting up during the night. Vitamin D is something that is recommended that you take anyways, and 40 percent of people in the U.S. are deficient in vitamin D. Hopefully, this will help more people.

  9. Problems with jerking, stomach muscles, legs, hands flailing, etc. while trying to fall asleep. Muscles constantly moving and twitching during the day. This has been going on for years, but recently took a turn for the worst. Doctors just want to send you to a neurologist. Spend a ton of money. I asked for a vitamin d blood test. It came back pretty low. It’s been two weeks of 50,000 mg. It seems to be working. Twitching almost down to a minimum and, knock on wood, the jerking has subsided at night. I do want to mention that I had unexplained blood clots in my legs and in both my lungs. In doing my own research, because you are your only advocate, I found out that being low in Vitamin d can cause this. Thanks themanwhocannotsleep for this blog. It’s nice to know I’m not crazy.

    • That’s great that you’re feeling better! I’m definitely going to up my vitamin D intake. My level is 23, which I feel is low, even though my doctor said it’s “normal”. Hopefully this will help others as well. Thank you so much for the tip! Hope this works!

    • Thanks for joining the blog, and I hope you have continued improvement. I really do also think that cortisol levels have something to do with this. I continue to experiment and see if anything helps. Good luck to everyone. Keep us all updated.

      • Thank you so much for creating this blog, it’s been so therapeutic and informative for me. As saddened as I am that there are others out there suffering with this, there is some comfort knowing all of you are here and that we can help each other through all of this. I hope you continue to share what is helping you and all of your wonderful blogs, I don’t know where I would be without you! Thank you again for helping all of us through this difficult trial, and for giving us all a sense of community! Take care!

  10. Thank you so much for saying that. I really appreciate it. I honestly didn’t know if I was the only person in the world who suffered from this or not when I created the blog. Like you said, it’s good to have the comfort of others, but it’s hard to know they are struggling, too. Some day it would be nice for all of us to meet, when a cure has been found and we are sleeping again. One can only dream, right? Take care.

    • Your totally welcome! It’s so funny that you said that because I was just thinking how wonderful it would be to meet all of you and put faces to all of the stories! And of course I want us all to find a cure. I’m so sorry that you had to go through this thinking that you were alone in all of this in the beginning; that there was no one out there like you that could relate to what your were going through. I would be so sad if I found something that helped me and it didn’t help everybody else on here too. Hopefully it will be a “one size fits all” cure that we can all share!

  11. Ok, so yesterday I took 4,400 IU of vitamin D. I fell asleep without jerks. This is the second time I have taken a high dose of vitamin D and gotten these results. Last time was on Sunday, before I got loaned a CPAP from the hospital. The vitamin D also caused some insomnia again as I was up around 2 am and drank some tart cherry juice to get back to sleep about an hour and a half later. Then I woke up at around seven am on my own after about six hours of sleep. I may have had some minor movements after falling asleep the second time, but I’m not sure if they are true hypnic jerks or some kind of damage caused by the 5-HTP supplement I took during the summer. Anyways, my vitamin D level is 23, 19 is considered too low. The fact that I probably couldn’t raise my vitamin D level in one day leads me to wonder if the boost in serotonin is what is actually responsible for this good result. I’m hoping I can find a dosage that provides relief from the jerks amd doesn’t cause me to wake up in the middle of the night unable to sleep. If I can’t find a way to get rid of the insomnia, this may not be an answer for me. Hopefully though, it can provide relief for others.

    • I have taken large doses of vitamin D over several months, and my level is now 84. It was a little too much, and I began having ringing in the ears, and didn’t feel generally well. Be careful with your dosage, but I encourage trying to raise your levels.

      • Thanks for the tip! I read that having a vitamin D level that’s too high can be just as bad for sleep as having a level that is too low. Not sure if it’s true or not! My mother suffers from ringing of the ears and takes ginkgo biloba for it and it helps her. I’m still experimenting with the dosage of vitamin D, just taking 2,000 IU right now to see if it helps the jerks because the higher dosages were causing me to have insomnia. Can I ask what dose caused your level to become so high, just as a reference? Do you know what your level was prior to this? Thanks for your help!

  12. If anyone has any suggestions for me on how to not wake up in the middle of the night unable to sleep, I would greatly appreciate it!

    • My vitamin D was so high because I took megadoses of it. I am always trying anything that might help my sleeping. The ringing stopped about 2 weeks after stopping the vitamin D, so I hope it won’t return.

  13. I also suffer these thr last 4 months and find it hard to explain to people and the Doctors. Was on Ativan that worked but had to get off for EEG test. Trialing out Remeron but looks like it might not be as effective. Anyone have luck with Mirtazapine?

    • Hello,
      I hate to be the one on here that is giving all the pill advice when there are others promoting vitamins, supplements, etc., but I have been suffering from the twitches for such a long time now that I have tried anything just to get some sleep. Just now I was taking a ‘nap’ and I twitched awake three times. My problem goes through cycles; it comes and goes randomly.
      I have tried mirtazapine. It helped me to sleep occasionally but the side effects were feeling spacey, tired, or just plain brain fogged. Also, it is more effective at smaller doses. I was prescribed 30 mg and I quartered the tablets and it worked better at 7.5 mg. Much less bad side effects at that dose pulse more effective.
      Someone here also asked about trazadone. It is similar to mirtazapine: they are both antidepressants with somnolent properties. Trazadone works better, but neither combat the twitches. Both medications only worked for me when I wasnt in a full blown ‘twitch cycle’. Nothing stops the twitches but an anticonvulsant, such as a benzodiazepine or thienediazapine (such as etizolam. Now, that is just me. I am not advocating the use of addictive drugs, I am just sharing what works for me. I am fortunate that the problem goes away from time to time so that I don’t get addicted, although I have had mild withdrawal symptoms and they are extremely unpleasant.
      That’s my two cents. Doctors are still baffled by this but any sleep movement disorder neurologist worth their salt is familiar with this condition. Good luck.

      • Thanks Brian. I will continue with 7.5mg. In my second week and have found that I get up aftrr 5hr of sleep and can’t do back. At 15mg same thing but felt heart race a little more.

    • Anonymous said:

      Be careful with Remeron. I thought I might have read somewhere that it causes jerks. Do a google search for Remeron and jerks and see if anything pops up. I also recommend doing a very slow taper off of drugs like benzos and antidepressant type drugs because people have reported getting hypnic jerks during or after a withdrawal from these drugs. I started having hypnic jerks after stopping the supplement 5-HTP, which increases serotonin the way an antidepressant would.

      • I dId find remeron to give me restless leg at 15mg and slightly at 7.5mg. I have come of it and will be trying Elavil. Has anyone had success with Elavil (amitriptyline)? I am trialing Lyrica (thats what it’s called here in australia) and so far 4 nights with some succees. However these were given to me by friend and self medicated. I have read Elavil is similar on wikepedia in that it assist with nerve pain.

      • Hi CK, how long have you had the jerks? I have the same thing after using Clonazepam. It is terrible.

      • HI I have had them now for 6 months. I be started clonazepam
        I am not sure if I should mix the week up with taking Ativan to not get
        an addiction. Anyone doing this?

  14. I am your twin sister. I hate even trying to sleep, it never lessens.

  15. sorry every one i posted it one the wrong page ughhh i hate this computer

  16. Alright i have been trying this so far every night for me has been 7 hours 6 hours one night i had nine hours some jerks but there were very few.The three years i have been trying everything except this of course i fell of the wagon few times but i stopped having sex anything sexual will throw me right back into jerking all night long,exercising makes it worse becuase it depletes a certain hormone in the hypo thalamus.The hypo thalamus and the genitals are linked if you have too much sex im gonna put it plainly and dont replenish this hormone or workout too much your asking for a night filled with onset sleep jerks or seizures what ever you want to call it.Now this might work for me and someone else might have a different thing going on like some others on here used phenibut and it worked,but i use benzos and cortico steroids prednisone thats the only thing that works for me…The benzos must affect this hormone and balance it or shut it down.I also stopped eating past 6-7 oclock i know that has helped tremendously Sorry for keeping everyone in suspense i had to make sure it was helping ive been doing this for about three weeks now but like i said i fell of the wagon few times and gave in and caved i have not tryed it for longer than a week straight being abstained but i can tell you every 2-3 days im doing it i am sleeping like a baby jerk free i still use 1/2 clonazepam right before bed 3-5 mins before bed.I hope this works for you i still believe this condition is the beginning stages of morvans and isaacs because in most cases those syndromes the hypothalamus is widely affected they run pet scans on the hypothalamus use cotico steroids that mimic the hormone that is made by the hypo thalamus to stop the jerkings that is keeping these people awake for 6 months and killing them slowly.The doctors put them on the cortico steroids along with other drugs to treat the symptoms i think this hormone balances its self some how and wammo jerking gone they can sleep again!

    • If prednisone helps the jerks, then the cause of the jerks would be low cortisol, because I think prednisone would raise cortisol. Cortisol balances norepinephrine which also keeps adrenaline balanced. So cortisol lowering herbs and supplements would actually raise adrenaline. Gaba lowers norepinephrine as well as serotonin. So supplements that boost gaba and serotonin would help lower adrenaline and maybe help with the jerks. Someone said their doctor told them to take glycine to lower adrenaline. I also read that olive leaf extract would help lower adrenaline. So I’m thinking that low cortisol levels, which results in higher adrenaline levels, could actually be the cause of the jerks. One way to test this theory would be to take a 24 hour cortisol test, which I think can be ordered online or maybe a naturopathic doctor could give you one. Does anybody know what their cortisol levels are?

      • Interesting theory on the cortisol. Have you had the chance to try prednisone? My twitching started because of Clonazepam, which affects all of the receptors you just mentioned. Wish we knew exactly where in the body these stemmed from. Crazy that this hasn’t been figured out by doctors yet. I am hoping to “pioneer” a way to get deep brain stimulation for this disorder, lol. I have seriously been in so much pain from this that I’ve looked into it as an option to consider with my neurologist. He will likely look at me like I’m crazy. I’m willing to try anything at this point.

      • No I haven’t tried prednisone, but I had thought that I was maybe suffering from low cortisol before all of this mess started with the jerks. I agree with you completely and have thought to myself so many times how easy this could be if somebody just knew exactly what causes these dang jerks. I really do wish that a university would do some research about it; somebody just needs to take an interest in it. Our doctors don’t look into it. I really do think they should start trying deep brain stimulation for this, maybe they could try it on guinea pigs or mice first. Something really does need to be done about this, and the medical field needs to start looking at this as a serious and debilitating condition and not tell us that it’s normal like my doctor did.

  17. This is my last comment i have to leave with you all unless i find something new if it ever comes backs as bad as it was think outside the box,if your depending on the medical community to fix this problem they wont!The other things i have tryed are these drugs and things that havent worked belsomra,depakote,depakine,gaba pentine,colostrum,valerian,zinc,vitamin c,ketogenic diet,fruits and vegetables diet no meat,ropinirole,couple beta blockers,5 htp,doxepin,trazodone,silica,magnesium,orange juice before bed,electrolites before bed,behavoural cognitive therapy what a joke that was and still is tryed that for a month,phenibut,somnapure,vitamin d3,another sleep aid to cant remember the name.
    Now the things that worked for me stop eating past a certain time 6-7 oclock is the cut off point,clonazepam,temazepam,ativan,prednisone,propanonal worked nights in a row,cyclobenzaprine combined with clonazepam,and the thing that has me sailing on air right now is stop having sex for two three days at a time that has worked so well i might be able to finally return to work again but hopefully can find low im pact job.Another that was the most amazing help was absorbing sunlight that helped like 30% of the problem couldnt get enough suni always thought the sun didnt give you just vitamin d3 but many different hormones absorbed directly into the skin.
    Last things that make it worse exercise,sex,drinking,stress getting stressed out over stupid things lol,eating too late,anything physical exacerbates em for me mostly.
    Well thats all have to give you guys like i said i hope this works and if it doesnt i hope you all can find something that can give you some relief i remember when i went 6 in half days without sleep and a full 6 months on only two hours of sleep a night some nights none at all 2-3 days worth,if it werent for my natural path id probably be dead,he gave me the clonazepam and it gave me some of my life back.The medication gave me the time i needed to come up with my own solution to my own problem 2 years later lol its been long fight and i hope they never come back like they did the end.

  18. sorry man who cannot sleep posted it on the wrong page i feel like complete gooooober.

  19. After some googling, I have a list of vitamins that can help our jerks. Vitamin B-1,
    vitamin B-6, vitamin B-12, vitamin D, magnesium, potassium, vitamin E and iron. I read that magnesium deficiency can take months or even years to correct. Not sure if this is true or not. Two products that claim to stop muscle spasms and twitching are MgBrite and Quinton Marine Sea Plasma. I have no idea if they actually work or not, as I have not tried them myself, but you can buy them online. The one thing that confuses me is calcium. Some say too much calcium causes twitching, while others say too little causes twitching and spasms. Maybe there has to be a perfect balance or something, I don’t know. I read that vitamin D deficiency will cause low levels of calcium in the body. So I’m wondering what all of your thoughts are. Does calcium help the jerks or make them worse?

  20. I was reading a bunch of posts on celiac.com, and everyone of these people had muscle twitching as a symptom of having celiac disease/gluten sensitivity. Some had buzzing, tingling, twitching symptoms in the legs or body as well. Some have tremor also. After going gluten free, all of these symptoms disappeared for them. Have any of you been tested for Celiac Disease/gluten sensitivity? Do any of you think that are symptoms are caused by gluten? I know I have daily headaches which could indicate gluten intolerance and I used to suffer from joint pain before as well, which is another symptom. Brain fog is another symptom, I think. Just wondering what all of your thoughts are.

  21. Has anyone actually found anything that works consistently OTHER than clonazepam? I am currently tapering off the meds, and it has been hell. I take a bunch of magnesium and don’t drink and exercise in the morning and bla bla bla bla bla. This started 6 months ago and I fear it will never end. I do relax and meditate, but unless I take a sleep aid, I am tossing and turning in bed, and just as I fall asleep, am woken up by a jerk. I usually get the jerks in my neck and shoulders and, oddly enough, in my ears and face (which are more like twitches). I would love to read some success stories- are there any out there??

    • I have the same thing . Clonizapan has stopped working all of the sudden and I dream all night . Not good . I’ve had twitches in every part of my being

      • Why is dreaming all night not good? That means you are sleeping, correct? Or am I missing something?

      • Anonymous said:

        Means you are in light sleep and awake enough to remember the dreams . Not good .

      • The sleep lab told me after my sleep study that I spent most of my sleep in REM sleep too. From what I have read, only 25 percent of your sleep should be spent in REM sleep. I also was jerking myself awake right before deep sleep. Not good.

    • For me Ativan or Sleep aids are the only thing that worked. Having the same issue now for 5 months. I am currently on 15mg Mirtzipane(going to drop to 7.5mg) as not really helping me get knocked out, just more drowsy the next day and 3,5mg Zopiclone and get 5-51/2 of sleep. I have found nothing else other than a sleep aid works. I was only on 1 Ativan a night for 3 months wihich always worked and like you wanted to get off the drugs but found no luck without them. Mine are mostly mild but still not enough to allow me to sleep. I only get the jolt through the body, however its enough to wake me even though i am sometimes in the REM sleep as wife says i started snoring. What sleep aids are you on? and how much do you need to knock you out?

      • Have you tried a cpap machine for your snoring? I got to try one for a week after my sleep study and it really helped my jerks. I was down to only one or two jerks a night most nights while sleeping with it. I also took 0.5 mg of ativan and some vitamin D and made sure to eat some sunflower seeds for magnesium. The sleep lab said I would move after an apnea, but I’m not sure if sleep apnea is the complete cause or not. Last night was my first night not using it and I had a lot more jerks. My insurance won’t pay for a cpap for me though, so right now I have to sleep without one and I am hating it and am so tired all over again.

      • Anonymous said:

        Cpap helps lower the sympathetic nervous system . Helps you with sleep regardless of apnea in convinced . Been tested 3 times showed my apnea only once . If I don’t use the mask I wake up every hour

      • Anonymous said:

        How many miligrams of ativan helps you?

      • Only 1mg Ativan . It worked every night for 3 months so does 5mg diazepam. I Stopped it as had to get EEG done and did not like the inter dose anxiety I got from it the next day. Its half life is medium. I am still using diazepam 5mg zopiclone 7.5mg and will be trying elavil next week.

      • Anonymous said:

        Elavil can cause or worsen jerks.

      • I hope not. Will be trying it next week. Have you tried it or know anyone? I trialled lyrica with some success. So assume Elavil is similar but not as strong on pain side.

      • Anonymous said:

        I’m not familiar with lyrica, but when I looked up elavil, it looked like it is also known as amitriptilyne. I don’t know anyone personally who has tried it, but one of the side effects is myoclonus. There was also a study done that showed that it can cause periodic limb movement. You should do a search on amitriptilyne and hypnic jerks on the internet, because I’m pretty sure I had read some comments somewhere of people saying it caused them to have jerks. Just thought you should be informed of this before you decide to try it or not.

      • I’m hoping a small dosage of 10mg might not affect me to much. It’s suppose to help with sleep and is similar to lyrica Pregablin which I’ve had some succees at 75mg and 150mg.

      • Anything at low dose would be better than a benzo. I’ve had luck with 15mg Temazepame but for long term would prefer something else. The neuro gave me these and I am hoping at small dose might have success as I had some luck with Lyrica(similar just older) dampening the jolt. That’s what I found. .

      • Anonymous said:

        Lyrica is used to treat epilepsy and elavil is a tricyclic antidepressant. Antidepressants help you sleep more deeply because they increase serotinin, which is converted to melatonin, which is a hormone that helps deep sleep. I wonder if this whole jerk thing is a low serotonin issue for me because my serotonin may have dropped after stopping a serotonin supplement (5-HTP). So it very well may help you, but there are reports of tricyclic antidepressants causing jerks as well. I personally never had jerks after being on SSRI antidepressants as well as natural supplements for depression like St. John’s Wort, rhodiola rosea, and SAM-E. I found vitamin D to be helpful with the jerks, especially in high doses of 4,400 IU-5,600 IU, and I think maybe it was the boost in serotonin that was helping me. The vitamin D pills I was taking also had safflower oil in them, which I think boosts serotinin also, but I haven’t really researched it yet. Seemed like the vitamin D with safflower oil helped more than the regular tablets with the jerks, but I’ll have to experiment more.

      • Thanks for your reply. 8 an stopping lyrica as I found even at 7mg was getting a tingling and daytime twitches during the day on my calves and not sure if they or the 3.5mg Mirtzipane I was also taking were making the jerks worse. I honestly fellt they were personally. Only on lyrica for 6 days.. trying Sam-e last few days. I am planning to trial the Amitripline as 8 am still alittle concerned about it. Hoping the sedation at 10mg might be stronger than Mirtzipane which sedated me but couldn’t get me past the jerks. My vitamin d seems to be high already. I pray something will work.

      • Sorry 75mg Lyrica

    • One person said Japanese knotwork tincture stopped their jerks. Another said 8,000 IU of vitamin D a day helped most of the jerks go away. I’ve read a couple of posts saying that accupuncture got rid of their jerks. Someone said ashwagandha stopped their jerks. One person said 1600 IU of vitamin D with 800 mg of magnesium got rid of their jerks. Another said 1000 mg of calcium with 1600 IU of vitamin D stopped their foot from jerking. Some have had some good luck with magnesium oil, sometimes added with oral magnesium. The guy at the health food store said only 25 percent of magnesium capsules are absorbed, so it’s better to take a product like Natural Calm because it’s in liquid form.

    • So the one thing that has worked consistently for me, other than ativan, is vitamin D. I have to take at least 3,000 IU but it works. Took it yesterday and had one small thumb movement while falling asleep and maybe one or two in the morning after getting up and falling back asleep and that was it. I also ate about a handful of sunflower seeds for the magnesium yesterday, and I have been eating more apples for B vitamins. I have taken as much as 5,600 IU of vitamin D, but it seems to cause me some insomnia at doses above 4,000 IU so I am taking it earlier in the day, around 10 am and taking less and it seems to help with the insomnia. Right now 3,000 IU seems to be an adequate dose for me. I read on Wikipedia that myoclonus (jerks) has something to do with glycine, gaba, and serotonin, so I think if you could raise your levels of those, maybe it would provide relief. I have been jerking a lot more after waking up in the morning, but it lasts maybe half an hour
      while lying in bed. It’s really wierd, and I’m starting to wonder if the jerking is actually a side effect of the ativan wearing off. I’m afraid I may be one of those people that has jerking from benzo withdrawal. Hopefully, it isn’t something permanent, and I’m not causing another jerking problem, so I am scared to go off of it.

      • Did you have myoclonus before Ativan? If so, do u think it is worse now? Mine came from clonazepam.

    • Yes, I have found high dosage n acetylcysteine (NAC) to be highly effective. A chain of research will lead you to some evidence of hypnic jerks being related to restless leg syndrome and restless leg syndrome is a neurological disorder. N acetylcysteine helps to modulate the neurological system.
      I personally started NAC about a year ago for the jerks, and at this point I barely have them, and they certainly don’t cause me to lose any sleep. I take NOW brand, 4-6 capsules about (very important!) an hour before bed. This gives it time to get into my system before sleeping. I took about 2 weeks for the effect to build up for me; though I noticed immediate benefit.

    • Anonymous said:

      Somebody on here said that 5 mg of biotin in the morning and 5 mg before bed is helping them.

      • I might try the biotin? Hopefully we can get some feedback from the person who has tried it..

      • Anonymous said:

        It’s me me …..the biotin. Take what I said for a month

      • Just bought some. T hey are 150mg so noit sure what it is in grams. How many would that equate
        to in MG? They won’t affect slwwp by taking them late?

      • Anonymous said:

        That is like nothing . They are sold in 5 and 10 mg. 150 I think you would have to take 35 to be 5 mg

      • Anonymous said:


        Biotin (which is also known as Vitamin H) is also important for a productive nights sleep. It helps to regulate and control energy production in your cells and is partially responsible for the bodily function that turns consumed food into energy. Deficiencies of Vitamin H may result in insomnia symptoms, according to the University of Maryland Medical Centre, including difficulty falling asleep or constantly waking up in the middle of the night.


      • Anonymous said:


      • Anonymous said:

        I plan on buying the biotin. I’ll probably stop by Vitaminshoppe tomorrow, since I am running out of Hyland’s Calms Forte. I’ve taken calms forte for the last two nights and it stopped the jerks after taking it, but it could be a total coincidence, so we’ll see. I also thought Hyland’s restful legs was helping, so I may try that again, if needed.

      • Anonymous said:

        I also read somewhere that biotin helps calm the central nervous system and I think it was in an article that talked about restless legs treatments. I’m beginning to wonder if there is a correlation between restless legs syndrome and hypnic jerks, or if the same treatments will work for both.

      • Anonymous said:

        And I do think that hypnic jerks may be a symptom of an overactive central nervous system. Does anybody else think so?

      • Anonymous said:

        Mine started when I got on testosterone . I’ve tried it for a month 3 times and every time I have jerks I would bet are worse than anyone here . That bad . After months and moths off testosterone they subside mostly . So yes there is no question to me it is central nervous system .

      • Did you take anything to help while you had the jerks?

      • Anonymous said:

        Yes I have taken everything basically. Once it gets started it takes months to stop. I taker Klonopin but it seems to wear off. I will not up my dose. Bioton seems to work.

      • Thanks. 5mg Diazepam even 7.5mg zopiclone sleep meds work for me but want to drop those for natural. On 3mg biotin and 3mg at night started 2 days ago. How do u find the biotin working. Does it ease the jerks? I’m still combining with benzo so not sure if it’s kicked in

      • After a couple of weeks just me know if they go away on Biotin.

      • I’ve been on Biotin for years for other reasons and they have no effect on my jerks.

      • Anonymous said:

        So I tried biotin for only one night because it gave me insomnia and a terrible headache. I only took one 5 mg pill right before bed. I did not have any jerks after falling asleep, but then I woke up a few hours later and could not fall back asleep. I took Hyland’s Calms Forte and drank tart cherry juice (contains natural melatonin and serotonin) to finally fall back to sleep. When I was falling asleep this time, I did have some jerks. Even though I only took 5 mg one night, I do feel it helped with the jerks, because I did not have any jerks falling asleep the first time, and this is when I always have jerks. I wish I didn’t have the other side effects along with it because I don’t know if I can take it now. If anyone has any suggestions of how to help the headache and insomnia, please let me know. The next night, I took gotu kola and had a similar reaction as the biotin. I had no jerks when falling asleep the first time, but I slept probably an hour longer (about 4 hours) but was able to return to sleep more quickly with another dose of gotu kola and tart cherry juice. During this second time falling asleep, I did experience jerks.

      • Anonymous said:

        Take it a few hours before bed in the evening or earlier

      • Anonymous said:

        Does biotin completely get rid of the jerks, or does it just reduce the number or the severity of the jerks?

      • If testosterone therapy makes you get jerks, maybe you should look into how hormones effect neurotransmitters in the brain. Raising your testosterone levels could be lowering your serotonin levels because testosterone boosts dopamine. Estrogen is responsible for boosting serotonin and possibly other neurotransmitters as well. From what I have read, raising serotonin levels inevitably decreases dopamine levels and raising dopamine levels decreases serotonin levels. So I have read that you should take supplements that raise both serotonin and dopamine at the same time.

      • Now that makes sense possibly. What supplements would increase each? An SSRi like Zoloft for seretonin? Thanks

      • SSRI’s would help increase serotonin levels for sure. I wouldn’t recommend Zoloft because a lot of people get brain zaps from it. There are many other SSRI’s like celexa, prozac and I think lexapro. Most antidepressants increase serotonin, I believe with the exception of welbutrin. Welbutrin increases dopamine. Rhodiola rosea is a supplement that is supposed to increase both serotonin and dopamine. St. John’s Wort also boosts serotonin. Requip and mirapex boost dopamine as well as supplements like DL-Phenylalanine, l-tyrosine and mucuna pruriens.

    • I started having horrible hypnic jerking after 2 months on Clonazepam (started in April). It actually started after the 4th day off. Went to my doctor complaining of my symptoms and she put me back on Clonazepam and said I just needed to catch up on sleep and I would be good as new. That never happened. I continued taking it while thinking that I had something very wrong with me. The doses started losing effect quickly and so I started digging around online for answers. In July, I realized after reading the Ashton Manual that this horrible symptom is a side effect of benzos. I tapered off the clonazepam and ended my taper on Sept 3rd. I am now 2 1/2 months off the poison and my hypic jerks are worse than ever. I literally cannot sleep without taking Seroquel (and that has its own set of problems). The worst thing is that the Seroquel only allows me a few scattered hours of sleep and I feel terrible until it wears off. I have also tried Trazodone and Mirtazipine with no results… and every single supplement on the shelf. I wish I would never have touched Clonazepam… it has ruined my life! I sleep only a few hours a night and have gone approximately 15 nights in the last few months of zero sleep (4 of those were in a row). My future seems very bleak at this point. My jerks are so severe that they sometimes feel like mini-seizures. Do you get these? I have everything from spasms, twitches, tics, head rushes, popping sounds, and jolts to my chest and head that startle me each time I doze off. They are relentless. I really think I am the worst case here as most people seem to get at least a few hours of sleep without meds. Please write back… you can e-mail me at jmhanson92@hotmail.com. It’s a very isolating feeling knowing that you are one of the few who literally cannot sleep! I used to love sleep and would get 8-10 hours each night before this mess started. I need my life back as I have two beautiful daughters and a wonderful husband. I really hope I can get some answers. I have a sleep study this week. I have seen so many docs and am losing hope. I am willing to go as far as brain surgery if I knew it would work!!! Deep brain stimulation?? Seems to work for those with Parkinsons, OCD and other neurological disorders. Can’t find anything about it working for this mystery awfulness though.

      • It does sound as if you have it the worst out of anyone I’ve seen here. Mine were very bad for the first month, tapered off, came back persistently for years and now seem to be on a two-four week loop of on and off. They are relentless when they are bad.
        I’m writing to advise you to make the very best of your sleep study. They are very expensive and insurance sometimes doesn’t cover all of it. I had to pay out of pocket for most of mine.
        I hope they can help you, as your condition certainly sounds severe.

      • Brian, did Clonazepam start these for you? How many years has it been? How much sleep do you get when you have the jerks? I just can’t imagine living life like this much longer. No sleep is really getting to me.

  22. Has anybody else heard about jerking as a side effect of benzo withdrawal. Does anybody know if small doses of ativan can cause this? I’m currently taking 0.5 mg of ativan at bedtime. Does anyone know if the jerks caused from benzo withdrawal are permanent or how long it lasts? Any input would be very much appreciated!

    • Anonymous said:

      Depends which benzo. Xanax for sure . Klonopin no . Klonipin seems to have worn off for me

    • Personally, I think that my jerking IS a result of klonopin withdrawal. I have read on benzobuddies or someplace like that where other people have had the jerks and they go away, some others don’t. Try to be patient with the benzo withdrawal. It can last a long time, but the brain and body has a remarkable way to heal. Right now, the best thing that is working is relaxation! I find that if I focus on relaxing my muscles and trying not to freak out when I have an initial jerk, I am able to sleep more quickly. I do have a lot of dreams and am in and out of sleep, but this might not be due to the jerking and have more to do with the fact that I am not a great sleeper. I have done acupuncture and didn’t see much of a difference, although I think it could help with getting better sleep. Am interested in this Japanese knotwork tincture. . . I also think Clonazepam brought on the jerking (I was taking for anxiety) and so I am getting off. Am hoping that the jerking goes away completely once I am off of the meds, as this can be a paradoxical effect. For me, getting off of the clonazepam has been a really tough ride, but benzos can be really hard to get off of, and so I am sticking it out. I did take ashwagandha and again, I don’t know how much it helped with the jerks, but it did help relax me. Right now, I am taking Isagenix Sleep Support Renewal spray before bed and it seems to be working. Again, my sleep is a bit fitful, but I am not having such crazy cortisol responses and seem to fall asleep faster. . . I take Natural Calm twice a day as well.

    • See my comment above yours (from Jessica). Yes, benzos are the devil!!
      My e-mail address is listed if you want to talk about it. Hopefully yours isn’t as bad as mine.

      • OK, I just realized that my earlier post will likely get deleted because I left an e-mail address… so it might not be there. Anyways, I reposted it below. I would love to keep up with your progress as it seems we are in the same boat. Although, it also seems that my symptoms are much worse than yours. How long have you been off of the benzo? How long did you take them?

      • How old are you ? Are you going through menopause ?

      • I am only 35 years old, no even pre-menopausal yet. Even through all of this, my periods are still normal. I was very healthy before this happened to me. All my blood work and MRI came back normal. Though, I am still going to do a sleep study this week. I hope it is not a waste of time and money. I’ve already had to quit my beloved job, have spent about $6,000 on this mess and countless hours at appointments. I wish I could sue my doctor for giving me 4 months worth of sleeping medications when I was not a case that qualified to receive them. Not even a warning about these meds when she gave me the script. I should have gone the natural route.

    • I have read so much stuff on benzobuddies.org (not a member though). Sounds like most people who get this from benzos will recover. Sometimes they only have it for a few weeks and sometimes much longer. I believe I must be the worst case ever. I keep reading from those suffering that they do eventually fall asleep for 4-5 hours. No me. When I realized that Clonazepam was doing this to me, I used the Ashton Manual to taper off the drug. I spent 2 months tapering off of 1mg. When twitching started, I was taking .5mg every other day and then hit tolerance so quickly that I had to keep upping my dose to sleep. So, I tapered over 2 months time while also using Gabapentin and glycine to help me stay asleep longer. Clonazepam by itself was mostly useless. However, Gabapentin by itself is also useless.

  23. Anyone tried Norgesic? My doctor suggested to try it. I’m on 7.5g mirtzipane which really is not helping with 3.5mg zopiclone or 2.5mg Valium on alternate days.

    • Anonymous said:


      • 8nteresring. I have been on it for 3 weeks. I do find the sedation of 7.5mg effective but haven’t noticed any more jerks than normal. Anyone else experience more Jerks with Mirtzipane or any bad withdrawals?

    • Anyone tried Norgesic. ? ?

      • CK, I was just told by my doctor to continue taking Mirtazipine. I had taken it about 3 times last month with no results. I’m really taking it now for mood issues as I’m having a hard time coping with all of this, but hopefully it will eventually help the jolts. Because it has histamine in it, I wasn’t sure if I should take it as dozing off isn’t the issue. I asked if I should be on a non-sedating anti depressant but she told me to take Mirtazipine. I’ll let you know how it goes.

  24. Other than Clonazepam what else have people have some success with reducing jerks? Diazepam, loremzapam and sleep meds work but only get me knocked out and am up 5 hrs later and cannot sleep past the jerks.
    I am trying lyrica (pregabalin)and working up the doze to 225mg to see if i have any luck.

    • Anonymous said:

      A lot of people have success with magnesium. I took some Natural Calm magnesium last night and I only had two jerks and it was the best night’s sleep I’ve had in ten days. Eighty percent of the Natural Calm drink is absorbed, compared to about twenty percent when taking it in capsule form. I read that taking 1600 IU of vitamin D along with magnesium got rid of the jerks for one person. I’ve had success taking over 4,000 IU of vitamin D alone and over 5,000 IU helped even more, but you might need to take it in the morning because it gave me some insomnia, I think. The other thing I did last night was lay down an hour before my daughter’s bedtime in the dark. This is good because the light from a cell phone, tablet, computer or TV disrupts the production of melatonin in the brain (a sleep hormone), so it is recommended to avoid this kind of light an hour before bed. You can also buy orange lensed glasses online to wear to avoid the light, one hour prior to bedtime, if you don’t want to give up the cell phone or whatever prior to bedtime. I also took three tablets of the homeopathic Hyland’s Restful Legs before bed, which I feel has helped some in the past. It’s hard to tell if this is all a fluke or not, but people have reported having success with magnesium, usually at high doses (800-1,000 mg) but I took a very small dose because I tend to be sensitive to side effects. I’m not recommending a super high dose of it unless you are comfortable with that. I plan on continuing with the Natural Calm magnesium again tonight, with my fingers crossed that it works.

    • Anonymous said:

      Taurine is supposed to help the jerks.

  25. Anonymous said:

    I just read a post on curezone from someone that said they had hypnic jerks. After taking
    two 300 mg pills of krill oil daily for two weeks,
    their jerks went away.

    • Anonymous said:

      I need to correct the post about the krill oil. The krill oil didn’t get rid of the jerks completely, but the person said that they hardly ever have jerks anymore.

  26. Anonymous said:

    Does anyone know if the dosage of a benzo is dependent on how much the person weighs?

  27. Anonymous said:

    Somebody posted on here that colostrum stopped their jerks, but that they could not sleep on it. Has anyone else tried colostrum for their jerks?

  28. All

    Has anyone done a Hair Tissue Mineral Analysis? I just got one done and my results showed high pottasium,high sodium , high cobolt and high lead and high rubidium. I am at the point where I am exploring all avenues and desperate to get to bottom of it. Clonazepam. Is the only med that is working well. I will start low dose Amitripline soon. I know people have said to be careful of it but being on clonazepam long terrm sort of worried me also.

    • Anonymous said:

      I’m glad that you are determined to get to the bottom of this! Hopefully, you can help others in the process, depending on your findings. No, I have not had a hair analysis, but thank you for posting your’s in case there is a link to all of this. My blood test concluded really low, but still in the normal range, ferritin (iron stores) and vitamin D levels. Low iron can supposedly be a cause to other movement disorders like restless legs and periodic limb movement, so maybe this is the cause of my jerks. And supposedly low vitamin D can also create spasms. Last night, I had maybe two jerks tops on my first night of taking trazadone along with 0.25 mgs of ativan. I usually take 0.5 mgs of ativan at the beginning of the night. It was pretty amazing. I still woke up early, about 5:30 am, but I didn’t feel as exhausted as I usually do after 5 hours of sleep (probably because of the serotonin boost from trazadone). If the trazadone keeps working for me, which I hope it will, I suggest that everyone give it a try, that hasn’t already. I only took half a tablet. Also, I didn’t get a headache today, and I have headaches everyday, so that alone would be a reason for me to take it. I think trazadone may be helpful to those who experienced jerks after coming off of an antidepressants also, because these are when mine started. Maybe my jerks are related to low serotonin after antidepressant withdrawal, even though it was a natural antidepressant (5-HTP). I hope everyone on here can find something that helps them!

      • Anonymous said:

        I also found some information on the web stating that Trazadone helps periodic limb movements and restless legs, where as other antidepressants can worsen or cause these. It also said Wellbutrin helps restless legs and that periodic limb movement syndrome and restless legs syndrome after antidepressant use is thought to be caused by low dopamine or an imbalance of serotoinin, dopamine, and norepinephrine. Wellbutrin boosts dopamine and this is why it helps restless legs syndrome. So I’m beginning to think their may be a link between Periodic Limb Movement Disorder and hypnic jerks and maybe restless legs syndrome as well.

      • its a shame i cannot show my Hair tissue mineral report.. This is one part of the report that was given regarding my high potassium low sodium..

        ‘The adrenal glands regulate sodium and potassium levels in body. An elevated potassium level may indicate an increase in adrenal cortical activity. Also as mentioned my Lead level is high. The following is an extract from a report about Myclonus in childhood.

        Table 4 . Potentially Reversible Causes of Myoclonus

        Category Example
        Cofactor deficiency Biotin, pyridoxine, cobalamin (congenital or infantile)
        Drugs/intoxications Psychotropic medications, antibiotics, insecticides, phenytoin, carbamazepine, anesthetics, narcotics,
        dopaminergic drugs; antineoplastic drugs, cardiovascular drugs, toxins (strychnine, lead)
        Infections: Meningitis, encephalitis (EBV, Coxsackie B), HIV, group A beta-hemolytic streptococcal pharyngitis
        Metabolic Uremia, hepatic failure, electrolyte disturbance, hypoglycemia, aminoacidurias, urea cycle disorders,
        disorders organic acidurias, Wilson diseaset
        Tumors (non-CNS) Paraneoplastic disorders
        tMore typically

      • Is Trazadone similar to Mirtzipane.?

      • Just to give an update, the trazadone got rid of my jerks the first two nights, but not the third. I’m going to continue taking it though because I slept about seven hours on it last night, maybe a little more, and I am feeling a lot better taking it than not taking it. Trazadone and Mirtzipane are both antidepressants. I don’t know if the way that they work is the same though, because trazadone, I think, works differently than other antidepressants. It was first used as an antidepressant, and when they realized how heavily sedating it was, doctors then started prescribing it as a sleeping aid. I definitely am feeling less down and less anxious about everything right now, and it has really helped my daily headaches. I feel that it is helping my sleep and I’m not really feeling that sick feeling I was having from sleep deprivation anymore now that I’m on it.

      • I have still felt tired though the last two days while on the trazadone, amd I don’t know if it is a side effect or if it’s because of the jerks disturbing my sleep cycle. It seems like I start to get more energy in the afternoon, and by the evening I feel pretty good. I know antidepressants can have more side effects the first seven to ten days also, so maybe the fatigue will get better. Or the fatigue could be caused by ativan also, hard to tell since I haven’t had normal sleep in the last two months since the jerks started.

    • Anonymous said:

      You may also want to try a liver cleanse to get rid of lead. I have often wondered if this would help us. Chinese medicine believes these symptoms that we are all having are due to liver heat. I’m starting to wonder also if high ammonia levels have something to do with the jerks. There are a lot of liver cleansing herbs you could try, milk thistle might be the best. Burdock root clenses the blood as well as the liver, I think. Dandelion root is good for detoxifying the liver as well, I think. You can research liver cleansing/detoxifying herbs on the internet and you may even consider combining herbs for best results.

  29. that’s what I am thinking. the rush and heart racing that comes straight after the Jerks which do not let me sleep at all..Not once, regardless of how exhausted I am because I feel like my adrenaline has kicked back in and takes another hour to try and settle than i revert to the meds..

    • Have you had a sleep study done? Sleep apnea can also cause the heart racing that you are describing. It can also supposedly cause jerks, and I’m still not really sure if the apnea is the cause of my jerks or not at this point. When you have an apnea and stop breathing, it causes adrenaline to kick in and your heart can race. My sleep study showed sleep apnea, and I definitely did not think that I had it before the sleep study was done. I didn’t have any hypnic jerks the night of my sleep study like I usually do, but I was aware of waking myself with movements during sleep. The sleep lab said I would have an apnea and then move in my sleep, so maybe I have two separate problems. I would definitely suggest you get a sleep study done just to rule it out.

      • Also, I still have hypnic jerks even when using my cpap, but I guess a cpap does not get rid of every single apnea. I think they said I was still averaging 4 apneas per night, even with the use of a cpap machine. They said that maybe the jerks would improve if I continued to use a cpap. I read on the internet that six months of use with a cpap can reverse damage to the brainstem caused by the lack of oxygen from sleep apnea, so maybe so.

  30. trying Milk thistle however alot if the herbs interact with the meds, I have done a liver cleanse from Naturopath early in stage. Trying chinese herbs also but wasn’t comfortable while taking the meds for sleep. Mine dont come and go they are there every night all night.

    • How much sleep are people getting on average and with what type of meds?

      • I answered this question of yours below… how much are you getting and do you just dream or do you get any deep sleep?

    • Anonymous said:

      Listen everyone..BIOTIN works. 5 MG in the day. 5 30 minutes before bed. It will not keep you awake. it will kill minor jerks. It has in me. There is no doubt any longer. Vitamin D in the morning. I take 4000 and that along with BIOTIN will knock it out. Drop there rest. Also, this is a Hormone related manifestation I really believe.

    • Mine don’t really come and go either, like some others on here. What Chinese herbs were you taking?

      • Tried Chinese meds, no luck. Trying Nac , Taurine, Biotin and still nothing. Might start the Amitripline as even with Temazepame, diazepam, ativan, only getting 4 hrs straight sleep. Not sure if jerks are waking me or just my body clock. Anyone else find they get up for no reason? Or do u sleep through?

      • That is exactly what has been happening to me! I get up for no reason. Then the jerks will begin again if I am not able to get right back to sleep. I’ve been wondering what was causing this, and if it is related to high cortisol. There was something I read about the reason for this before, I think it was something I read online from the book The Mood Cure. I figured it had to do with the stress caused by worrying about this condition, depression, or maybe a weird side effect from the ativan even. Someone said their doctor told them they would wake up as a part of benzo withdrawal while taking clonazepam (Klonopin). Anyways, I did not wake up randomly last night for probably the first time in a while. I’m hoping the trazadone is helping with this. I do know that depression and I think even anxiety can cause sleep problems. Depression can cause too little sleep or over sleeping, as well as early morning awakenings (waking up early but still feeling tired).

      • Okay, just looked up The Mood Cure and I am thinking maybe our answer to all of our sleep problems and jerks could be in this book. With one exception, the use of 5-HTP, because that’s when the jerks started for me and it raises cortisol, so if you already have high cortisol, you should definitely not take this supplement. It looks like the book has quizzes that can explain which amino acids you are deficient in, and why you wake up at different times during the night ( ie 2-3 am or early in the morning). And it does say that early morning awakenings are caused by high cortisol. It recommends which amino acids to take based on your symptoms. I may just have to buy this book and I recommend everyone to check it out!

      • Great find. I just had my cortisol level come back normal through a blood test. It was done in the afternoon. I have asked for a 24hr adrenal urine test which i hope to do on Friday. I still feel it’s Cortisol related. I am getting to the point where not only anxiety but depression. Is kicking in. Mine came out of the blue one night 5 months ago. Like others here everyday is an experiment.

      • I know how you feel. I feel really depressed on the days that I have not gotten enough sleep the night before. It has been really difficult coping with all of this. Before that, I probably could have been diagnosed with mild depression, even though I didn’t necessarily feel bad. I’ve also had anxiety for some time now. I am feeling great today because I actually had a night with zero jerks. I’m still taking 0.25 mgs of ativan and 50 mgs of trazadone. I am praying that the trazadone will stop my jerks completely. Are you having a naturopath test your cortisol levels? Please let us know how your cortisol test goes, since I think many of us have been wondering of there is a link to cortisol levels in all of this. Hope you start feeling better. I know exactly what you are going through and what a difficult struggle this is. You are not in this alone. We are all here for you and completely understand what you have to go through everyday. Just appreciate the good days and try to stay positive!

      • Everyday is a struggle. I was a great sleeper prior to this also. I have been trying accupuncture weekly, kinesiology, cranial massage the lot. My 2 young boys are suffering because dad is absorbed in this sudden change in life. The neurologist mentioned that hypnic jerks can be associated with hyperekplexia. Has anyone else been told this? My cortisol was normal at 477nmol/L.

      • Great to hear you are having success with Trazadone and Ativan. Ativan 1mg worked for me but once it wore off I was unable to slepp past the jerks and sleep starts.

      • I also wonder if depression and/or anxiety plays a role in the jerks somehow, but not sure.

      • I had the same thing where the ativan wears off by morning and the jerks would start up again. The trazodone is helping with my morning jerks as well as the beginning of the night jerks. I read that trazodone is used for periodic limb movement syndrome, which I don’t think is what I have, but may be similar to hypnic jerks and may be why it is helping me.

      • I’m sorry that this is taking a toll on your family as well. I think it is affecting my daughter as well. I am a single mother and we live alone, so that is an additional struggle and I could really use some support right now. I have not been told that I have hyperekplexia, but I’m definitely going to Google it.

      • One more thing. I read about someone who was able to get rid of restless legs through accupuncture. But, only one acupuncturist was able to help her with the treatments. When she tried a different accupuncturist because her regular one was all booked up, the treatment didn’t help her restless legs. So, you may want to try another accupuncturist to see of they are more skilled at what they do and give you some relief. Just a thought! Good luck on your journey!

      • I have a couple more ideas that you may want to try or run past your doctor. Have you tried taking 0.5 mgs of ativan at night, and then taking another 0.5 mgs when it wears off? Seems like that could be effective, in theory. Also, xanex (another benzo) has and extended release version; Xanex ER. So, maybe it wouldn’t wear off. It looks like trazodone also has an extended release version of the drug, but I don’t know if that would be needed.

  31. Hi All

    Just started clonazepam 0.25mg and only got 4-5rs sleep with 10mg Amitripline. I Tried sleeping again but could not sleep past the sleep startles. I was expecting to get a better sleep as I was getting the same amount on valium or Ativan. Now I’m not sure where to stay with the valium or up the clonazepam and see if it makes a difference. Any advise would be greatful..

    • I would say stick with the clonazepam for at least three weeks so it really gets into your system, and will maybe start working better. Or you could consider upping your dosage because I think most people are taking more than what you are taking. You can also try gotu kola, it seemed to get rid of the jerks I have at the beginning of the night. Research shows that gotu kola helps stop the startle response and has anti-anxiety properties as well. I think it also boosts serotonin, so you might want to get advice from a doctor about adding it to what you’re already taking. My thoughts are that you could try it in place of the clonazepam amd maybe even the amitriptilyne if you are looking for a more natural approach. I read a post recently where someone said vitamin D combined with omega 3/6/9 got rid of most of their jerks, so that’s something you could try also. Google luck on your quest! I know how difficult this is!

      • DHEA. Try it. 10 MG morning only.

      • Has anyone tried DHEA? I’m trialing Nac with b6 in it made up from a compound chemist. Also on
        Calcium plus.magnesium zinc, pyridoxine ,glycine.,glutamine as trying to get my balance right. My bloods come back perfect yet a Hair analysis stated I had high pottasium and sodium yet low calcium and magnesium. They stand that hair sample goes back 3 months and blodd are measure only for a short period in the body.. who knows. Got to try it and hope..

      • Yes I have. Seems to work also.

      • I am interested in DHEA. I just read that you should get your levels tested before taking, so just wanted to mention it if this concerns you.

      • Be careful with glutamine. I read that it may be involved with raising glutamate, which may be the reason behind the jerks.

  32. Thanks for your comments everyone.
    My vitamin D is high and i do take omega 3 triple strength. Sometimes my jerks arent the issue, it is weird and hard to explain. I find that as my mine is drifting it’s like a switch goes of in my brain and wakes me sometimes no jerk.. like a sensory type awakening hard to explain. Anyone else get that?

    • Yes it is the lesser of the Jerk. When you get the jerk it is more of an arousal. Worse…Same thing just worse.

      • Thanks for the reply.

        If I could get past these I think I might be ok as I get those more than jerks. Not to say I don’t get jerks. I checked my vitamin D and it’s up at 104nmol. .
        Does anyone have any luck sleeping throughout the week or even a few hours without pharma meds?

      • 104 is to high needs to be under 80 for sure . Above 50 . Optimal is 60. I’m convinced it’s hormonal . I know for a fact t is with me . If I take testosterone therpay I will jerk of the bed and for months after I quit usuage

      • Do your jerks eventually go away after stopping testosterone therapy? If so, do you know how many months it takes for the jerks to go away?

      • They do go away eventually after therapy. Maybe months after. I can not have a jerk for months then take testosterone that night and I’m screwed for months unless I get off of it in like 3 days. So there is no question it is hormone related.

      • I get these “brain awakenings” as well, at the beginning of the night only. I had these last night, but luckily no jerks. When I took biotin, it got rid of the “brain awakenings” and jerks at the beginning of the night, but i had some morning jerks. The trazodone helps get rid of the “brain awakenings” sometimes as well. I am starting to feel like whatever is happening to us is coming from the brain. Does anybody else think this? Maybe if we could balance out the neurotransmitters in the brain, maybe this would stop. What do you guys think?

      • I also read somewhere that somebody’s doctor told them that this is a disorder of the sleep/wake transition. So maybe that’s what we have. There is a new drug on the market called Belsomra. It’s supposed to be the only medication out there that regulates this. Maybe it would help us.

    • Yes, I get this also. Do yours ever produce a sound? Mine would be comparible to the sound of tinnitus. I also get strange “inner” jerks in my arms that make a popping sound in head. I think I’ve had every bizarre sleep symptom (coming from a person who had zero sleep issues prior to taking Clonazepam).

      • it is called Exploding head syndrome. Look it up. How many MG were you taking and for how long?

      • I was only on .5mg of Clonazepam every other day for 2 months when the symptoms started. My doctor had me alternating days with Trazedone. A month before the twitching started, I began a sleep diary to track my sleep as I was starting to get less and less sleep each night (not realizing it was the sleeping pills all along). Going back through my diary, I realized it was the clonazepam doing this because each night that I didn’t take it I was having interdose withdrawals with some severe anxiety symptoms while in bed (adrenaline rushes and feeling doom). These were symptoms I had never had in my life. The only reason I went on those damn pills was because I have a baby that was getting up at night and was having a hard time falling back asleep right away. So stupid of me. My sleep was great, even if I was losing an hour or so each night.

  33. I hope something like Belsomra is the answer.. I am starting to not
    Manage this condition well and everyday is a struggle.

  34. I posted this same message earlier, but noticed that another persons post was deleted because they left an e-mail adress (as I did). Here is my story…

    I started having horrible hypnic jerking after 2 months on Clonazepam (started in April). It actually started after the 4th day off. Went to my doctor complaining of my symptoms and she put me back on Clonazepam and said I just needed to catch up on sleep and I would be good as new. That never happened. I continued taking it while thinking that I had something very wrong with me. The doses started losing effect quickly and so I started digging around online for answers. In July, I realized after reading the Ashton Manual that this horrible symptom is a side effect of benzos. I tapered off the clonazepam and ended my taper on Sept 3rd. I am now 2 1/2 months off the poison and my hypic jerks are worse than ever. I literally cannot sleep without taking Seroquel (and that has its own set of problems). The worst thing is that the Seroquel only allows me a few scattered hours of sleep and I feel terrible until it wears off. I have also tried Trazodone and Mirtazipine with no results… and every single supplement on the shelf. I wish I would never have touched Clonazepam… it has ruined my life! I sleep only a few hours a night and have gone approximately 15 nights in the last few months of zero sleep (4 of those were in a row). My future seems very bleak at this point. My jerks are so severe that they sometimes feel like mini-seizures. Do you get these? I have everything from spasms, twitches, tics, head rushes, popping sounds, and jolts to my chest and head that startle me each time I doze off. They are relentless. I really think I am the worst case here as most people seem to get at least a few hours of sleep without meds. It’s a very isolating feeling knowing that you are one of the few who literally cannot sleep! I used to love sleep and would get 8-10 hours each night before this mess started. I need my life back as I have two beautiful daughters and a wonderful husband. I really hope I can get some answers. I have a sleep study this week. I have seen so many docs and am losing hope. I am willing to go as far as brain surgery if I knew it would work!!! Deep brain stimulation?? Seems to work for those with Parkinsons, OCD and other neurological disorders. Can’t find anything about it working for this mystery awfulness though.

    Specifically to the Man Who Cannot Sleep, do you know of any person who had this from a prescription drug and their symptoms went away? Also, do you have any muscle activity during the day? Whenever I am resting or sitting, I will get some twitches in my toes, popping spasms in my legs and sometimes a few spasms elsewhere. Do you ever get a sensation in your head, as though the twitches and spasms produce a sound right after they happen? Or a bolt of electricity to your heart? And lastly, do you feel you ever reach a deep sleep? When I do sleep, it seems to all be a dream. I wake every hour or two out of one. I’m pretty sure the drug caused this as well as benzos are known to suppress the much needed slow wave sleep. It’s just lovely how doctors don’t warn you of this before you take them. Thank you for creating this site. We are truly the unlucky few on this earth, it seems.

    • ONE MORE THING… Does anyone else have a rapid heart beat? I’m not sure if mine is from benzo withdrawal or lack of sleep. My pulse is always around 100 and sometimes up to 117. My blood pressure is above normal but not in the danger zone. I used to have very low blood pressure before I started Clonazepam. I was also very fit and healthy. Now I can hardly carry my 16 month old.

      • Jessica, I’m so sorry about everything you are going through! Don’t give up hope! Try biotin 5 mg in the morning and 5 mg thirty minutes before bed. I think you will eventually find something that will give you your sleep back. I also had exploding head syndrome and I have twitches during the day as well. My symptoms, I’m pretty sure we’re caused by the supplement 5-HTP. I’ve been on it twice. After the first time I stopped taking it, my thumbs would move under my pillow and wake me at night. So I started sleeping on my hands, and it stopped the problem. Many years later, I forgot that I had thought that maybe 5-HTP had caused this problem and began taking it again. After I stopped taking it the second time around, I started having pretty much every symptom that you speak of. The exploding head syndrome has gone away, and my daytime twitches are getting better. My nighttime twitches are much better as well, but I think that trazodone is helping them. For the past four nights, I have slept pretty well, and I feel good. I used to have head rushes also. My blood pressure is a little high and it used to be low. Try taking vitamin D also. I found that taking 4,400-5,600 IU helped my jerks, but take it in the morning because it gave me some insomnia. The higher dosage worked better. Also, try gotu kola. This helped me with the jerks. I think trazodone helped me because it gave me back the serotonin my body was missing after I stopped taking 5-HTP. So if you are having withdrawal from a benzo, I suggest trying to restore your GABA levels again to help with your symptoms. Some supplements that ate supposed to boost GABA levels are L-theanine, taurine, vitamin B-6, zinc, inositol and herbal therapies. You can also try NAC, and I also heard that taking 300 mg of krill oil twice a day can help. I am a single mother, so I know what you are going through. I think that things will get better for you, even if it takes time. Also, it is hard for me to know if my symptoms ever went away completely after taking the 5-HTP the first time, since sleeping on my hands was fixing the problem, but I think sometimes I would leave one hand free and not have problems with it moving. So I think the twitches did get better with time, but I’m not sure if they ever really did go away completely. Also, I’ve noticed that others who had jerks after taking a medication have seemed to disappear from this blog, so I am thinking maybe their jerks eventually stopped. It just has to get better, that is what I believe.

      • Also, try rhodiola rosea for your sleep deprivation. Take it early in the day, before 2 pm, because it can be stimulating. I used to take it when I was sleep deprived and u would no longer feel sleep deprived. I have not taken it since the jerks started, because I was nervous to take a supplement that boosted serotonin for awhile, since that is what caused this problem. I have taken other serotonin boosting supplements and medications after and before the first time I took 5 HTP with no problems, so I think it only would be caused by the 5 HTP and not by serotonin supplements and medications. If you try rhodiola rosea, and it helps with your sleep deprivation or jerks, please let me know because I have been thinking about trying it again.

      • So sorry to hear what your going through. We are all
        working together to get to the bottom of it and get on with
        our lives..

      • I’m pretty sure I read somewhere that rapid heartbeat is caused by benzo withdrawal.

    • Thank you to the person with all of the tips and encouragement. I really need it. How much do your jerks interfere with your sleep? How much sleep and how many jerks/ type of jerks do you usually get? How long has this been going on for you? This is by far the most devastating thing to happen in my life. Everyday is a struggle with barely any sleep. Last night I took a Trazedone but it did not block the head sounds and jolts. It seems that the “jumpiness” of my jolts/jerks are less severe, but still wake me just the same. Lots of big spasms and electrical like zaps with a few seizure like jerks each night. It is so frustrating, especially when I know how tired I am and I doze off over and over all night just to have this happen. Fortunately, I did fall asleep last night after 2:00am into 2 or 3 little naps that lasted less than an hour each. As usual, they are entirely a dream, no deep sleep. Daytime spasms and toe twitches as usual and the usual anxious/yucky feeling in chest with a hard time getting a deep breath (I think this feeling is more from sleep deprivation than anxiety itself). BTW, I can no longer take Seroquel. I had been taking it on and off since quitting Clonazepam but now the Seroquel seems to plug up my nose so badly that I can’t breath and the little sleep I do get from it is terrible. I think the histamine in it isn’t agreeing with me now. Even the Trazedone sort of plugged me up last night. God, I hope I don’t have to go back on Clonazepam. I hate that drug with every inch of my being! What I would give to go back in time. My body was never made to tolerate drugs. They have really destroyed me.

      • I know how you are feeling. It is devastating and truly the hardest thing I have ever dealt with. I think our brains will eventually heal from the withdrawal we are experiencing. I can be in bed for over nine hours, and still feel extremely sleep deprived, so I have no idea how much sleep I actually get. My jerks have gone down from maybe 15 possibly more per night (though I’m not entirely sure of this number) to usually one or less now. I am now experiencing less jerks and more times where my brain just seems to keep waking me up several times for no reason. The jerks aren’t interfering with my sleep as much as they used to I believe. I had a really bad two and a half week stretch of little sleep before starting the trazodone. I have been having jerks for about two and a half months now. The reduction in jerks is probably due to medication, 0.25 mgs of ativan with 50 mgs of trazodone. I do feel like the ativan stopped helping as much which is why I added trazodone, and I have seen major improvement with trazodone. Like I said before, I think this is because it is replacing the serotonin that got too low due to stopping 5-HTP. So maybe more serotonin would help, but that means more drugs and I am just taking what I need to get by for now. I’ve read about brain zaps on the internet that are caused by antidepressant and benzodiazepine withdrawal. I think that they are a different form of a hypnic jerk and/or are caused by the same thing going on with the nervous system and/or brain. In researching what helps brain zaps, most people say that omega 3’s are what really help the most (1,000-2,000 mgs a day, but you cold probably take evendors more if you wanted too). I also read that vitamin C, B-12, ALA, and multivitamins can help these zaps. Another thing that has helped someone on here is phenibut, because it increases GABA. I did get the biggest improvement in my sleep about a week after starting trazodone. Maybe it will help even more after more time on it, or possibly upping the dosage. How much trazodone are you taking and for how long? I think you should try to look into increasing your GABA levels again and try taking omega 3’s because they can help the brain heal. Good luck on your journey and never give up hope! Things will get better!

      • One more thing. I read something recently where someone experiencing benzodiazepine withdrawal is trying to eat a low histamine diet, but not trying to eliminate it entirely because some histamine is needed by the body. She thinks that there is a link between her withdrawal symptoms, too much histamine and benzodiazepines. I’m sorry that I can’t exactly remember the specifics, but I think it might have been that benzos contain histamine and that you can become sensitive to histamine. I read it on http://www.madinamerica.com. You can do an Internet search for madinamerica histamine and try to find it in her blogs. Maybe it could help. Good luck!

      • Again, thanks for your reply. U sound much better off than me, but I see u are on a benzo? Ativan will definitely suppress your jerks. Of course, I cannot take one as they are what started this mess for me. I just had an appt with a new doc today who explained with pics why benzos do this. She drew transmitters and what happens between GABA and serotonin when a benzo is removed. Basically a big mess that can take years to recover from. Be careful with the Ativan if u feel u don’t need it. Seems like some do well on them, but what then if they start to make things worse? Tolerance with them sucks! I envy people who can get off of them with no problem. Actually, I just envy people who can sleep! It has been since February since I last had a restful night of drug-free sleep.

      • Forgot to add to your question… I have only tried trazedone, 50mg, 3 times. Each time was worthless. Seroquel was very sedating but lost its effect. Basically, I have no other prescription options other than a benzo. Just got theanine today. According to the doc I saw, I just have to be patient and make sure I get sunshine, light exercise and lots of food (I’ve lost 20 pounds and thin as rail).

      • I am really nervous that I have been taking ativan for this because it can cause jerks, but I really had nowhere to turn at the time. I cut back from 0.5 mgs to 0.25 mgs a week ago. I literally don’t know if I should continue to take it or not now. I’m scared that going off of it may cause more jerks, and I am hoping that my recent cut-back does not cause more jerks. So this is something I have been ruminating about. Like I said, it did take about a week for the trazodone to really have an effect on me, so you could try it for a little longer so it builds up in your system. I am interested in how a benzo effects serotonin and screws up gaba and serotonin. I didn’t think it affected serotinin at all. I’m just trying to learn as much as I can about all of this, and hopefully others in the process. I did take clonazepam, about six years ago, and had no problems getting off of it, so hopefully the ativan won’t cause problems either. I also took ativan for about a month, I think, almost four years ago and had no problems stopping it then. So hopefully, God will have mercy on me and not let it screw me up. Just trying to push through all of this sleep deprivation and the emotional trauma it has caused me. I am glad that I have found this blog and the people on it and greatful to themanwhocannotsleep for creating it and sharing his experiences and feelings.

      • I am also glad to have found you people so that I don’t feel so alone in this. I just went to bed an hour ago and have had a jerk attack that went on for 15 minutes (at least 20 jerks) followed by a full body seizure like one. Now I can’t even relax enough to doze off again. There is something really wrong with me. I have nothing to do but sit here and write this and cry. It is going to be yet another long night. U might want to read the ashton manual for tips on withdrawing from Ativan. Yes, benzos are known to effect pretty much all of the receptors, particular GABA, glutamate, serotonin and norepinephrine if I remember correctly. They deplete the latter 2.

      • I feel your pain. It is incredible that we share something so crazy and bet we were all good sleepers at some point, i know i was. The seizures should settle i know mine did after 4 days. Mine came on overnight never took a benzo or any type of drug. Don’t smoke or drink and was fit to the point where i was playing tennis 3-4 days a week and just turned 44. One night i got up startled in the middle of the night and bam 6 months later and feel like the world is falling apart around me. seeing a second sleep speacialist next week. Been on diazepam, ativan, mirtzipane, amitriptyline and now given clonazepam. The ones that get me are the sleep starles as i drift off sometimes with no body movements. I can actually go to sleep with the smallest amount of benzo which frustrates me more as i feel at times i am nearly asleep. I ve had maybe 3 nights sleep without meds in 6 months. I want to ask has anyone tried Medical Marijuana at all??

      • Thank you for the tip about the Ashton manual. I’m not sure I am ready to tackle that yet because I just don’t have the energy right now, but I may try to taper soon. I’m just not sure yet. I’m so sorry you had such a rough night. It seems like the jerks wax and wane and I’m not sure why. I have cried many times over this, especially in the beginning. I feel like the trazodone is really helping me cope with this emotionally because it can help with depression and anxiety. I have read that the jerks can be caused because you fall into rem sleep too quickly at the beginning of sleep. This is not when you should be having rem sleep. I know that I was doing this before the trazodone. I would see images like I was starting to dream. This doesn’t give time for the muscles to relax, thus creating a jolt or jerk. Antidepressants decrease rem sleep. The sleep lab told me I was having mostly rem sleep. This is not normal. Depressed people also have lots of rem sleep; about 75 percent when you should only be having about 25 percent. So I am thinking if we can decrease the amount of rem sleep we are having, maybe it would help us.

      • I tried medical marijuana a few weeks after I quit Clonazepam. It was the worst 4 hours of my life. It had too much TCH (26%). I felt like I was pinned down to my bed and in and out of reality. Had the worst hallucination and my hard was going about 150 beats a minute. Awful. Never again. I had to take Clonazepam after that to calm my convulsions. Fell asleep, and then the next morning had the worst feeling of doom I ever had. I took myself to a mental hospital for a night which was another mistake. Keep in mind, I was the most sane, active and non-depressed person on earth before I touched Clonazepam. I’m still in shock that this is my life now.

  35. To the man who cannot sleep

    How are you going? Hope all is well?

    • Ck, my spasms during rest/sitting didn’t start until about the 3rd month while on clonazepam…. Mostly in thighs. Interesting about the hair gel. How long ago? I read a post from someone who got this from rogaine. Not sure what ingredient would do this but somehow it must be hormonally related as there are others who report this from testosterone. Have u researched the gel?

      • Hi Jessica.

        Is it ok if I correspond via email. I believe u had ur email in previous posts.

      • Hi Jessica,

        It was 6 months ago now. Interesting about Rogaine. I will looks this up. Prior to it I was fine then aftrr that day it’s been hell so only can put it down to the product but no one tends to believe it. I am suprised at your wealth of knowledge and find hope that people like yourself are doing all they can.

  36. Has anyone ever talked with a neurologist about where in the brain this originates? I keep hearing it is from the startle response in the brain. After looking this up on Wikipedia, that it orginates from the amydala and hypothalamus. Both of these can be removed from the brain, leaving some other symptoms including less fear. Coming from someone who literally cannot sleep without medication, I willing to discuss this with my doctor, along with DBST. There has to be a treatable answer other than meds… especially when they causes this disaster for me.

    • Let me revise that… amydala and hypothalamus are related, but I think you would only remove the amydala as that part is responsible for fear, fear memory, and startle response… and? Wouldn’t it be grand if this could be cured by simply removing that part of the brain? Others have done it, but not sure how common. I hope you all don’t think I’m crazy, lol.

      • I don’t think you are crazy. I think we all would do just about anything to get our lives back. I had a bad night last night, with lots of jerks while trying to fall asleep, after upping my trazodone dose to 100 mgs. Not sure why since it was really helping me at 50 mgs. So I’m going back down to 50 mg to see what happens. Does anybody know if desyrel (generic trazodone) has histamine in it and why or if histamine makes jerks worse or causes more jerks? If that is not the case then maybe I am suffering from serotonin syndrome since taking 5-HTP. Also, another approach to your startle response theory would be to try gotu kola. There have been studies done that prove that it significantly reduces the startle response, and the one night I took it I got really good results. I thought that it may have caused a bit of insomnia, but maybe it wasn’t what caused it. It also really helps with anxiety and has other medicinal uses, like treating varicose veins, and I think maybe it even helps with memory but I’m not quite sure if I am right about that one. Why not give it a try?

      • Histamine makes them worse

      • Okay, maybe it has histamine in it because my muscles started spasming after taking it before I even fell asleep. Hopefully, I can continue to take 50 mgs again with no problems, otherwise I will need to find something else to help with the jerks.

      • It must be similar to Mirtazapine. I get a great sleep on 3.5mg with it mixed with only a tiny amount of clonazepam but find my neck gets tight and i get the no no wobbe at rest. Anyone else get this?

      • How much clonazepam are you taking? My jerks are coming back again, and I’m wondering if trazodone has histamine in it or not and if I’m still feeling the effects from the larger dose I took of it two nights ago. I’m going to probably take 50 mgs again for a couple of more days at least and see if they subside.

      • 0.25mg. I’m finding it takes 2 hours to work though and getting more twitches in fingers and forearm which I never had before. Might get back on the valium as 5mg worked quicker and did not get any extra twitches. ..really annoying .

      • And yes, it is similar to Mirtzipane.

      • And I’m glad that you’re doing well!

    • Please let us know what your doctor has to say about these things as possible treatment options. I have wondered about deep brain stimulation helping us also.

      • To anonymous… are you able to use a name so I can differentiate you with anyone else who also uses anonymous? I think I’ve been talking to the same person all along, but not sure. Anyhow, I will definitely keep everyone posted on anything that I learn. I really wonder if this is some sort of twisted form of epilepsy? Not sure why else my body sometimes has convulsions like a seizure (they only last 2 seconds thogh). If related, I’m hoping that some type of brain stimulation will work.

      • How long have you had the jerks and seizures for again? Mine started as seizures but eventuated to jerks and sleep startles. Mirtazapine works well at low dose. I am giving it another go as 3.5mg and tiny amount of clonazepam helps but I feel I am tight chested and tight neck with it. Let me know how u go? I found this happened straight away with me

      • Yes, you have been talking to me all along lol. I was thinking of creating a name for the same reason. About these seizures that you guys speak of, I wonder if you are having periodic limb movement disorder. It is characterized by multiple jerks in a row after falling asleep. Did you have that sleep study done yet? I suggest that you have one to see of this is what you have or not.

      • Another good reason that everyone should get a sleep study done is to rule out sleep apnea. I had no idea I had sleep apnea prior to my sleep study, and my apneas are severe during rem sleep and mild during the rest. I didn’t have any hypnic jerks the night of my sleep study for some odd reason, but I did have movements that woke me during it. The sleep lab said I would have these movements after an apnea, and that the jerks that would wake me while falling asleep sounded like hypnic jerks. I still get jerks while using a cpap machine, but from the report that the hospital gave me it looks like the cpap machine didn’t get rid of every single apnea, even though they told me it got rid of the apneas. I haven’t been able to use the cpap because I wake up when I wear it and can’t fall back to sleep easily. But if I could, I know I would have more energy even with the lack of sleep caused by the jerks. So I kind of have a double whammy.

      • CK, have you had a sleep study done? I suggest getting one done if you haven’t yet.

      • Hi Caligirl
        I have had a sleep study. Came back mild sleep apnea.

      • Hi CK! Did the doctor tell you that your apnea was related to your jerks?

      • He said it was mild apnea. Mine came about from a sudden awakening at night so maybe I did have a bad apnea that night that has somehow triggered something in the brain.

      • Also, are you using a cpap now? If so, does it helps with your jerks?

      • I am actually on CPAP. I was sure that was doing it at first. It still maybe I honestly after almost 3 yrs of jerks I do not know. I have seen 25 doctors plus. Best in the country Rush Medical on and on.. MY apnea in 3 different studies only showed up mild once. (13) That said, when I don’t use cpap I have less energy and I wake up more. When my jerks were at the worst after taking testosterone.I could turn the pressure up as high as it would go and still have horrible jerks. I am still baffled just grinding it out. I do believe it is Central nervous system related obviously. I mean I can almost guarantee one way to get rid of them. You take 1 MG or even 2 MG of XANAX XR 1 hour before bed, XR being the key. That will shut you down man. Problem is they are to addictive. Or you could take them forever. We all die there are some things at 49 I am willing to take until I die if they work. I got off Xanax XR after 3 months and finally understood the term coming out of your skin. I have never done an illegal drug or even rarely prescription. However it worked like nothing else on the Jerks. Also the whole next day I was so mellow. But after I got off them it was hell. Now I take 1 MG Klonopin and Lunesta The net day I feel no different on Klonopin and expect zero addiction. I also have frequent urination or the urge to go that goes hand t hand with the jerks. Ive seen 5 Urologists. Trying to get someone that can figure it out.

      • And CK, what did the sleep lab say was causing your jerks? Did they just say they were hypnic jerks? Please share!

      • Yes they saI’d hypnic jerks

      • It could very well be central nervous system related. Why did you stop taking
        Xanax XR? I’ve taken Klonopin before and I never became addicted to it but I took a very small dose, 0.125 mg.

      • I cut down the dosage once and I felt horrible . Then I cut it all out could not sleep and felt like I was going to die suicidal thoughts . Not good . But it works and maybe everyone does not have that side effect .

    • Somebody who used to post on here who I think was a nurse or worked in the medical field, said that this originates in the brainstem.

  37. CK, this has been going on since April after I took Clonazepam for 2 months. The seizure-like startles have been happening since, but are non-existant on nights I take Clonazepam.

    So, 2 nights ago I buckled and had to take Clonazepam for sleep. I had gone an entire week with about 8 hours of sleep… seriously. I’ve worked so hard to stay off of it and to get my sleep back naturally, but it just won’t happen. I thought that taking meds like Seroquel and Mirtazipine would help with sleep while my GABA receptors healed. Without meds, I simply cannot get past the jerks and like I said before, they have all stopped working. I was so deprived of sleep that day that I couldn’t even smell or taste anything and beyond depressed. My blood pressure keeps rising. This condition is literally killing me. I called my doc yesterday and was told to continue Mirtazipine. I took it last night and miraculously I fell asleep for 6 hours. However, I suspect that I slept because I still have blood levels of the Clonazepam in my system, and mixed with Mirtazpine I was able to sleep. Have my sleep study next Monday. Really feeling hopeless, especially since you can’t really cut parts of your brain out to fix this, as I’ve learned. Apparently the amygdala is good for more things than startling you. If it is seizure related, there is a surgery for that which involves a partial removal of the amygdala. But, I guess my little twitches and spasms that happen the majority of the time wouldn’t fall under the seizure category. Can’t find any research on DBST for sleep disorders, just parkinsons related sleep disorders. I’m continuing the search though. So desperate.

    CaliGirl, I thought of periodic limb disorder, but that condition happens “during” sleep. Mine only ever occur right as I drift off.

    • I don’t recall, have either of you experienced exploding head syndrome? Mine seems to be getting more frequent. I have about 3 different sounds… a thump, door shutting, and a tinnitus-like ring. I also get inner ear spasms.

      • The only time I think I had exploding head syndrome was two days after taking a small dose of clonazepam, and I mean small, 0.125 mg. I had at least one inner ear spasm during the day, and then I had a sound while sleeping, maybe like a buzzing or electrical sound, but kind of hard to explain.

      • https://www.psychologytoday.com/blog/the-athletes-way/201405/how-does-the-vagus-nerve-convey-gut-instincts-the-brain

        Just a link I found about “vagus nerve stimulation” for anxiety and other issues.

      • Great find! Looks like there are a lot of other interesting articles on there as well. I have heard about the brain-gut connection before, but it never talked about the vagus nerve. I also wonder if the vagus nerve could be damaged during pregnancy, because I read in a pregnancy book that you shouldn’t sleep in a certain position (I can’t remember if it was on your back or a certain side) because it could put pressure on the vagus nerve. I have wondered too, if taking probiotics would help the jerks at all, since most of our serotonin is in our gut, I think 80 percent, if I remember right. The other thing that crossed my mind is hypnosis, because sleep can supposedly be improved through hypnosis as well.

      • Check out this article on vagus nerve stimulation. http:// http://www.news.com/t/newsmax/article/594746

      • I’m not sure why the link I just posted isn’t working but just do an Internet search for “how to calm down the brainstem” and then read the newsmax article on vagus nerve stimulation.

    • Mitrizpam will cause jerks after 2 or 3 nights watch

      • Do you know if there is something similar to Mirtzipane that doesn’t cause jerks? Something without histamine?

      • Take Lunesta and clonizapan or Lunesta alone

      • Unfortunately it does. Shame I liked the sedative effect I got from it.

        Jessica what is seroquel like? Does it give you that knock out punch effect?

      • Seroquel does seem to work really well the first few times of use, but then it stopped working for me and made some symptoms worse. It blocks serotonin and dopamine, I believe. Also has histamine. I really wish I never tried it because I wonder if it has delayed or worsened healing from the benzo. I don’t believe the doctor who prescribed it to me had any idea what he was doing. I had to take a rescue dose of Clonazepam 4 days ago and was advised to retry the Mirtazipine the day after. Since then, the Mirtazipine has worked to put me to sleep but the hours of sleep are getting shorter and shorter (3 nights now… last night I slept 4 hours). I think this is a result of Clonazepams long half life wearing off (I took 1mg). Now, I have more auditory sleep starts than jerks. Serotonin from the Mirtazipine causing these? I don’t know, I’m such a mystery and want to get to the bottom of this! My sleep study is tomorrow, but now worried that they will not see any big jerks since I haven’t had them since Tuesday… Just little bitty ones with the dang noises in my head. It sounds like someone has fallen on the floor. I also wonder about an alternative to Mirtazpine as to not mess up the histamine receptor (I assume we don’t need help in that dept, right?). Maybe Effexor? Man, I hate psychiatric drugs! My poor brain has been screwed by them. Seriously, I will get the dang vagus nerve stimulator if there is even the slightest chance it could work!!! I read that persistent hiccups can be cured by this… aren’t hiccups and sleep starts related somehow? I think I already asked this, but what is everyone’s pulse? Mine is always at least 100. Either from sleep deprivation, benzo withdrawal, or anxiety from this mess… not sure.

      • My pulse is 105. And I actually slept last night. Is that bad?

      • Are you overweight? 105 is dangerously high.

      • No, my body mass index is in the normal range. I’ve always had a high pulse, but not this high. Maybe it is caused by withdrawal from the supplement 5-HTP. Or maybe I miscounted, I was watching TV at the time lol.

  38. Let me correct something. Everytime I said I was taking 50 mgs of trazodone, I realized I was actually taking only 25 mgs of trazodone. And when I said I took 100 mgs, I only took 50 mgs. So anyways, I thought that the one night I took 50 mgs of trazodone, it made the jerks worse because of the histamine. So the next night, I took 25 mgs and the jerks were still worse, but better than when I took 50 mgs, I think. So I decided to take two nights off of the trazodone and I think it threw me into a withdrawal with more frequent jerks in the morning than I had during my previous withdrawal from 5-htp (both pills increase serotoinin). So now I don’t know if I should go back on the trazodone or not. Should I start taking 25 mgs of trazodone again (half a pill) and stay on it, never take it again since going off of it has seemed to make the jerks worse again because I’m going through withdrawal again, or take the 25 mgs and maybe taper off of it more slowly even though it is only half a pill? Does anybody have any suggestions for me? I would greatly appreciate any imput.

    • Cali girl listen . Start taking at least 1000 mg of epa fish oil megagenics is a good one . Look on Amazon . Also take 5 mg of biotin if you haven’t tried it an hour before bed.

      Also are you overweight ? Do you eat. A lot of sugar ?

      • Thanks for the tip! Are you taking fish oil? If so, is it helping your jerks yet? I tried biotin once and got a killer headache for days, so I haven’t tried it again, but it did help kill a lot of the jerks. No, I’m not overweight and yes, I probably eat more sugar than I should. Why do you ask?

    • I have taken Trazedone a few times with no change, good or bad. However, I took Sam-E one night and I had a jerk about 3 times a minute for hours… seriously! It was awful. I did read an article (can’t find it now) about a man who withdrew from benzos and was put on Mirtazipine. Apparently it got rid of his jerks. Everyone is different, so I’m not doing back flips over this but will remain hopeful that the Mirtazipine will straighten things out with time. If the Mirtazpine is causing more auditory sleep starts though, I will have to quit. I can’t handle not knowing what is real and what is not. I’ve gotten out of bed several times over this just to verify it was all in my head.

      • That is good news about the Mirtazipine healing one man’s benzo withdrawal. Gives us some hope! Try to stick with the Mirtizipine for at least a few weeks because antidepressants take a few weeks to kick in.

      • I found mirtazapine gave me more jerks especially my head knowing.

  39. Don’t know how people are going but I’m so exhausted with this symptom I think starting to lose my mind…

    • I’m so exhausted too. My memory is getting worse. I’m so tired. We need the medical community to start research on this and find us a cure! Ck, how are you doing with your medications and supplements? What are you taking?

      • Hi caligirl

        Taking magnesium, biotin, Nac, calcium, vitamin c, Taurine, you name it everyday I’m taking 20 odd tablets a day. Before bed I have been taking 2.5mg of valium as started clonazepam for few days and for some reason takes 2 hours to kick in and found I got more twitches when I started it. I am going to go back on temazepam as I was at least getting 4 hrs sleep on 10mg. I know what you mean about forgetting stuff and the headaches that come with lack of sleep are just as painful. What are you on at moment?

      • On the valium I am able to fall asleep but I don’t understand why I get up after an hour. . I don’t think it’s the jerks but my brain just seems to wake up after an hour of sleep. I have manged to get back to sleep and can get maybe 3 hours in the end which Is not enough.

      • Hi Ck! I was getting those same “brain wake-ups” you are describing. Trazodone has seemed to have gotten rid of these for me. I found that clonazepam actually helped my headaches, but two days after taking a dose of it, I got new twitches that haven’t gone away, like one where my jaw clenches shut. I thought trazodone was similar to Mirtazipine, but it after more research, it looks like they are somewhat different. Right now I’m taking 0.5 mg of ativan and 25 mgs of trazodone. Have you tried trazodone yet? I feel like it is helping to reduce the amount of jerks I am having. I probably would have gotten a good night of sleep last night had it not been for the snort that woke me up. I’m thinking the snorts are from sleep apnea. Are you using a cpap machine for your sleep apnea. I still wonder if there is a connection between some of the jerks and the apnea. Hope you start feeling better!

      • Yes i have done a sleep study. Only came back mild apnea. Hired the cpap for a 6 weeks and made no difference in my opinion, however struggled to use it as it was at early days of the jerks and was vwry unsettled. started .25mg clonazepam again as was not sure to take clonazepam or ativan or diazepam which have all worked in past. The only issue with ativan was that by the arfternoon I was having inter withdrwals which I had no idea about. Diazepam is to long acting. I thought clonazepam last time gave me some extra twitches but I did start elavil at the time which I have dropped. I’m seeing another sleep specialist tomorrow. Anyone had any luck with Valerian? And which type or brand is the strongest?

      • When looking for valerian, you want one that’s standardized to contain 1 percent valerenic acid. I haven’t tried it yet for jerks, but I used to take it years ago for sleep and found it to be pretty effective.
        How did your appointment with the sleep specialist go?

      • Basically wants me to trial Sifrol which is Miraprex. Not sure if anyone has had any luck with miraprex?

      • Update…. Had my sleep study. Don’t have full results yet, but the tech said he didn’t see any seizure activity even though I had several little jerks before I decided to take a mirtazipine. I don’t have apnea. He said that my legs moved while I slept so I’m guessing I have periodic leg movement disorder? This would make sense as I wake alot during my “naps” and sometime notice a twitch or jerk when aroused. What I’ve concluded so far is that clonazepam has caused a major anxious state in my brain similar to someone who has PTSD symptoms. If u do a search on combat soldiers with this disorder, u will find they they have similar problems. Vagus nerve stimulation has been used with some success in people with both PTSD and depression (I have both now). I believe I will always struggle with PTSD for the rest of my life because I will fear these jerks coming back if they ever do leave. This leads me to the notion that vagus nerve stimulation has to be an option for me. Very expensive, but worth a try and quality of life if it delivers. Already have been in touch with the only clinic in Montana thst places these. Have to talk to a doc yet, so I’ll keep u all posted.

      • Jessica, how much do you weigh? And what MG were y9ou taking on Klonopin?

      • That’s is quiet interesting.. I wonder if they have it in Australia. Took 1 Miraprex last night did not do much. Had to take 5mg valium and that only got me a few hours. No jerks just the bloody brain awakenings. I’m exhausted today and hating every day more and more.

      • Jessica, there is something called transcranial magnetic stimulation (tms) that you may want to try or get a consultation for first. It is used for depression, although I don’t know if it would help our condition or not. My thought is that because it helps the brain and neurotransmitters that it may be of some use to us. It isn’t invasive like vagus nerve stimulation is, so you might want to look into both options. The PTSD theory is a good one, especially since the supplement I took causes a rise in cortisol (stress hormone) so it might make sense in my case also. Just wondering, how much does vagus nerve stimulation usually cost? Even though I didn’t have leg jerks the night of my sleep study, the sleep lab told me that the leg jerks could mean that I have periodic leg movement and my doctor prescribed requip for it but I haven’t tried it because I didn’t think a simple leg jerk could diagnose me with the disorder. Trazodone does help periodic limb movement disorder though, so maybe that is what I have since trazodone helps me. Is periodic limb movement disorder different from periodic leg movement disorder? Also, the last three nights I have been doing deep breathing while falling asleep at night, which stimulates the vagus nerve, and it seems to eliminate a lot of the jerks and they are getting weaker, so I have been sleeping pretty well. I suggest that everybody try it. It also seems to help get rid of jerks and spasms when I am awake if I do it.

      • It’s good to hear you are doing well caligirl. Is trazodone the only med you are on? Also, I wonder if others on here have gotten over this condition as not many are posting. I pray that mine does everyday..

      • Thanks CK! I’m sorry you’re not doing well. I know exactly how you feel. It is incredibly difficult trying to get through life on little sleep. Hopefully things will get better for you soon! I pray for everyone on here and everyone who suffers from this. I’m still taking 0.5 mg of ativan along with the 25 mgs of trazodone. They seem to be pretty effective together, but I feel like I have more fatigue taking 0.5 mgs rather than
        0.25 mgs of ativan. But I feel like 0.5 mg is more effective. So I may cut back when I am feeling brave. I am hoping that this goes away too, since people do seem to disappear from here. I wish some of the people who posted on here
        before would give us an update on how they are doing. Hopefully they are doing well!

      • Also, I keep meaning to post about this. Dr. Oz said that the herbal extract oatstraw works like Valium on the brain. Might be worth a try!

      • Thanks Caligirl. I know it would be nice if people could update there progress. I will check out the other product Dr oz suggests. Are you still getting the brain awakenings?

      • I weigh 107(5’5″). I’ve lost 20 pounds because of this. I will look into the magnetic stimulation, thanks! Yes, it would be nice to hear from past posters who are better… We need hope that this goes away for most people!

      • Forgot to answer somebody’s question… I was taking .5 mg of clonazepam every other night for 2 months when this started. I was alternating days with trazedone, 50mg. After the symptoms started, I was put on clonazepam every day, up to 1mg at one point. Once I noticed how fast the doses were wearing off, I read up on the horrible drug and learned what my doc didn’t tell me. I weaned myself off and the last dose was .25mg with 300mg gabapentin every night (for about a month). The gabapentin helped me stay asleep with less awakenings, but did not help the jerks.

      • Hi Jessica. Sorry what are you on now?

      • I Love the way I feel on Gabapentin but it gave me jerks 100 times worse…Klonopin dose not for me. Everyone is different. I do not get it but it is very true. I do feel like Klonopin is wearing off but I think all drugs do as your body adapts to them. I have read horror stories on Gabapentin. Many.

      • Jessica. Are you experiencin anymore jerks with mirtazapine? I felt it gave me more anxiety and some increased neck movements I never had. I’ve had 3 attempts with it.

      • Ck, I never have brain awakenings anymore. It seemed like I had an increase in them and then they just stopped. It all happened while taking trazodone.

      • Ck, I haven’t tried Mirapex, but i think a couple of people who have posted on here said they tried it and that it helped. If you try it, please let me know how it goes, and I hope it helps you!

      • Ck, it may have been requip that helped them and not mirapex. Just really hard for me to remember. I think they are similar though since they are both dopamine drugs and are prescribed for similar things.

      • Thanks Caligir for always replying. I hope you are doing Ok and do hope Miraprex gives me some relief. I know the man who cannot sleep tried it and it didn’t work but hoping my bidy accepts it as hate taking the benzo or sleep Meds for it. Next one will be keppra but hope and pray it will go as mine came out of the blue overnight.

      • Last night was my 8th night on mirtazipine. While it allows a few hours of scattered sleep and seems to help me cope a bit better with this,I found that last night’s jerks were back to producing more of the brain and chest rushes/lightening jolts (these were getting better). Now I’m back to thinking that serotonin contributes to this? Hopefully they were just a product of the pumpkin pie i ate. has anyone been avoiding sugar? ive been trying to eat healthy with no sweets or caffiene. Excercise seems to make them a bit worse. i hate this so much!! Am I the only one who feels like this thing is trying to kill me?

      • Your definitely not. We all feel the same and some days are better than others. Hang in there and be strong. Does mirtazpane help or induce anxiery? I found i was very tight chested while on it. I know it would be nice to have a pill that just works. I am trying gotu kola also and biotin, hoping and praying it helps. I don’t know why no others are on and only hope there symptoms have passed and they moved on which would give us some hope.

      • Jessica, I’m so sorry about what you are going through. This is just so incredibly difficult and exhausting. Sometimes I wish I could just be admitted somewhere until they figure out what is wrong with me and fix me. I’m getting confused too about whether serotonin is helping this or not. When I upped my dose of trazodone (serotonin drug), I felt like I was getting more jerks that were more intense. So I went off of it for a couple of days and became very sleep deprived again. So, I started trazodone again and I feel tired (might be from the ativan), but not really sleep deprived. And now the last couple of days I feel like I’m having more movements again during the morning hours. So I think I’m going to stick with the trazodone through the weekend at least. I have to say though, I did have more head rushes when taking trazodone at first, and then they completely resolved. So maybe that is part of the healing process. I’ve been taking trazodone for three weeks, and like I said I’m tired, but not really sleep deprived, which is better. Plus, it does help me feel better emotionally, which is a huge help in this. Maybe just try to stick with it a few more weeks until you get the full effects. The brain just might be readjusting itself again. It seems like serotonin supplements are the only thing people haven’t tried much for this so it is just hard to know if they really help or not. Also, I’m really thinking that stress and/or anxiety plays a big role in the jerks. I don’t drink caffeine and I’ve been trying to eat less sugar, but I don’t know how successful I’ve been with that. I even tried staying away from msg foods, but I’m not really sure if I saw a difference or not.

      • The other thing that I’ve been thinking is that adding a dopamine drug may help the serotonin/dopamine ratio stay balanced because I have read that if you raise serotonin, dopamine goes down and vice versa. And low dopamine does seem to be involved in some movement disorders, from what I’ve read.

      • Caligirl, I too have felt like admitting myself somewhere until I’m fixed! Actually, I admitted myself to a psych unit for a night thinking that they would have a fix. That was 2 weeks after withdrawal from clonazepam and I was suffering from every imaginable thing… Intense tinitus, hallucinations, dripping sweat, etc… Worst time of my life. I never want to go through a benzo withdrawal again. Anyways, all that the psych doc wanted to do for me was put me back on a different benzo (Librium). Yeah right (so I got out of there). He gave me seroquel which reduces dopamine and is probably part of the reason that I have periodic limb movement now as well. Another doc had wanted me to try requip. I think this drug boosts dopamine? I might have to try it, though it sounds like it does little for jerks. i will continue the mirtazipine and report back on progress. Praying that we all get better and live happy lives.

      • I know how u both feel. This is a crazy condition. I was off caffeine for a month and don’t think it made a huge difference. Only having a coffee in the mornings. Took .25mg clonazepam and had a good sleep but hate the fact I have to take it. I will start miraprex tonight and see how that goes. Be strong and keep praying we will beat this …

      • Glad that u can get good sleep on .25mg of clonazepam. When I got down to that dose (with gabapentin), I was only getting 4-5 hours. Of course, now I wish I was getting that! I would love to hear back from people if they ever stuck with an antidepressant and got any good results? Seems that there are
        only a few of us on here. I hope the owner of this forum is doing well.

      • Mirtazapine gave me a good sedation when taken with a small amount of benzo or sleep aid, but found mirtazapine gave me more anxiety even at 3.5mg. How much mirtazapine are you taking? I’m getting 5 or so hours of straight sleep which is not great considering I was getting 7-8 prior.

      • Ck, I am on 7.5 mg of mirtazipine (and nothing else). I find that it has helped my mood some in the last 9 days of taking it. I’m still having sleep anxiety, muscle spasms and fast heart beat all day, but not any worse. Last night I had mostly exploding head waking me up with a few little jerks. I got about 5 hours of scattered sleep. The medication is definitely changing something in me. Hopefully for the better. I’ll be giving it more time. I see my doc on Tuesday to talk about mirtazipine alternatives as I’m skeptical about taking something with histamine. Does anyone wake in the middle of the night with a sense of doom? Anxiety, I l know… Just want to hear from others. This feeling I get is how this all started. I drifted off to sleep one night but woke feeling like I was drowning. My first panic attack ever.

      • Hi Jessica. Have you tried just a sleep med. I used 7.5mg zopiclone which is lunesta in the states and got about 5 hrs straight sleep. It’s probably better than using clonazePam which I will use on occasion. It’s a shame mirtazapine makes things worse as when I was taking 3.5mg only and 3.5mg of zopiclone I was having a more natural sleep but the jerks did get worse. Mine started also from just a panic type attack in my sleep where I woke up suddenly. Don’t remember the dream or nightmare. Was really weird.. let us know how u go and hope things only get better..

      • Ck, my problem with lunesta is that it’s a “baby” benzo and will hinder my benzo healing. I believe mirtazipine isn’t much help in the the healing process either, but I’ve gotta sleep. So for now, I’m staying away from ambien, lunesta, etc. sorry, please remind me what caused this problem for you? I know it was 5htp for caligirl. I’m really nervous about mirtazipine side effects… I’ve been reading up on antidepressants. One article written by a doctor stated that natural serotonin levels usually do not return back to normal after repeated exposure. Lovely. I’m really hopeful about vagus nerve stimulation if all else fails. Hopefully a neuro doc would be on board. I remember only 8 months ago I was getting my ortho braces off and was thinking about what else I could improve on… Jeez, now I would give my legs just to sleep. Funny how life can change so quickly and change perspective.

      • Ck, I just posted something but it disappeared? Anyways, I have 2 theories for u… First, maybe having your neck back for the shampooing tweaked something? Could see a chiropractor if u suspect that. I know my chiropractor has seen patients with this and can be fixed. Second, I’ve read posts from people who got from testosterone therapy and rogaine. Seems that rogaine is connected somehow with the hormones in it and perhaps the hair gel did too? I know shampoos are connected to early puberty in children. Though, a one time use would make u hyper sensitive!

    • Ck, forget my last question… I read your older post that your condition came out of nowhere. I see that some people believe this is damage from an injury. Do u recall any injuries leading up to this? Do u have any history of ssri use? Stressful event? I myself didn’t have any of this except the short term use of clonazepam and trazedone. One or both caused this, no doubt. I’m sure this is particularly frustrating for people who can’t pinpoint a cause. Oh, do you have spasms, twitches while sitting?

      • No never anti dependants or benzo, was fit and healthy. The only thing I did different that day was the hairdresser put a Hair staightener product in my hair, shwakzkoff GLATt (never done such a thing ever prior) and I didn’t like the smell it was quiet strong so i washed it out again when I got home. That night was when I jumped out of bed and from then on the jerks have never stopped. I only on occasion get some muscle twitches during the day which I found while using clonazePam , and only on my left quad. My left pinky feels like the nerve is playing up and usually numb sometimes in the morning. I am not overweight and watched what I ate. . I am so baffled by my one it’s not funny and just want it gone. Last night my jerks where mainly upper body shakes. I took zopiclone and was out in 10 min. Really frustrating and then at 5pm got one of those brain explosion as I dreamt of a branch falling on my head. ..weird. AD can someone cause more problems from what I hear. If mirtazapine works and your not noticing more jerks then stick with it. I could not sleep through jerks just on mirtazapine. .

      • Also. Hardly ever stressed in the past … now I bloody do!!

      • Ck… To add to my above comment, maybe it is a hormonal thing. At 44 years, have u had menopause symptoms yet? I’ve also read that hormone therapy works for some, though I’m sure you already read about it. U, me and caligirl might have to exchange emails… Hopefully people aren’t sick of me writing so much!

      • Hi Jessica,

        I am 44 year old male so not sure about the menopause. ill check previous posts and track down your email address.

  40. I’m interested to hear how ‘the manwhocannot sleep’ is going? whether he has trialed anything new?

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