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.

1107 thoughts on “About”

  1. Also had colonoscope found redness in there but no Celiac’s disease or Whipple’s had MRI of colon chest nothing had EKG eeg had pet scan of entire body fatal insomnia blood tests negative so far…..sleep studies at mayo and the spinal tap blood work twenty four hour urine one thing that is odd is I have white shit coming out in my urine all the time watch when you urinate if you see it collect bring it into the doc office and show him mine thinks this is the route of the problem but……its hard to get fresh sample I want to see what this stuff is under microscope he said because he thinks it might be the white matter that encompasses the brain in paraneoplastic syndromes.also had emgs done but I suggest all you collect you urine if there’s white shit coming out in droves I believe this to be the answer

  2. And my doc says special test has to be done for the urine 24 hour in clear container so he can see the specimen collect it put in micrscope

  3. I wish we could talk to each other on video lol would make this allot easier

  4. also had a copper blood test all of my b vitamins zinc all the minerals and metals you can think of hair analyses serotonin urine and blood work dopamine blood work dhea sulfate which was high and kinda still is a little high

    • I’ve had all the bloods done also. 24hr copper urine, cortisol, 24hr urine adrenaline, magnesium vitamin d, all came back normal. My hair analysis and skin analysis showed high copper low zinc and low magaesium which makes this confusing. Anyway, I’ve been on high dosage magnesium, calcium., zinc Nac, and honestly no difference. How are the jerks going for you Rick? I remember you had a few things happening.. Mine are all night every night. Mirtzipane and zopiclone are the only relief I have to get some sleep and usually only 4 or 5 hrs for the past 8 months.. hope all is well, talk soon.

      • Also, I am trying a copper chelate from my homeopath and a herb mixture of
        Californian poppy, wild oats and passionflower, all to calm the nervous system. Just started this about 4 weeks ago.

      • im still using prednisone and clonazepam prednisone every other day clonazepam every two days but so far they are both werking.For the jerks for the insomnia and the jerks i use trazadone sometimes i can just get away with trazodone at least twice or three times for me a week but if not i use prednisone or clonazepam but mostly my jerks are over because i discovered it has something for me to do with sexual activity,i am sure of this now that i have test this theory for months.When you have any sexual activity you deplete serotonin this intern depletes meletonin which i believe is the reason for the jerking.That being said when you jerk you either have too much serotonin or too little or not enough or medium.If your serotonin is too high you wont sleep at all if its too low you wont get the jerks,if you have only enough serotonin somewhere in the middle you will have falling then jerk which ends in a six hour period if i have them.The jerks are definatley being caused by serotonin in my case and probably most cases lack of serotonin,and i still believe this is the early stages of morvans most people dont get help with the jerks and eventually are hospitalized for lack of sleep,which then turns in to a pareneoplastic manifestation,which requires mao inhibitors clonazepam blood pressure meds,and cortico steroids or immuno therapies such as intraveinous immunoglobulin or plasmapharesis.

      • My neurologist said she tested for Morvans and Issac and camw back negative. I pretty much have the jerks every night and never have luck even with a nap. I’ve got clonazepam on standby but use zopiclone at low dosage and mirtazapine at low dosage. I’m not sure if others have tested to see if this could be early signs of Morvans and Issac syndrome. I’m only averaging 4hrs sleep sometimes less (lately less) a night. I know if I take clonazepam I could get more but at this stage trying to manage on that. I believe our startle response is all haywire and if it could correct itself eventually we might be ok.
        How many hours are others getting?

      • the reason i think its lack of or too much serotonin which i for got to put in the lengthy description is because clonazepam blocks serotonin,because that is what they use in treatment for serotonin syndrome which also might be a cousin of morvans and isaacs syndrome.The first symptoms of these people have is the jerks then they cant sleep then they develop autoimmune disease from not sleeping!

  5. Hi guys,

    Going to a sleep doctor on Friday to determine whether I have sleep apnea although the jerks I have upon falling asleep feel more like something neurological than an obstructed airway. A good night for me is where i only have two or three very mild twitches before nodding off, a bad night I will be bolt upright in a panic with a very rapid heartbeat.

    I’ve been making a bit of headway with it lately, firstly it seems that working / using my brain in any kind of complex way before bedtime makes it worse, so I’m going to try getting into a regimen of winding down a lot earlier. I often find myself not feeling satiated after dinner and then eating more food close to bedtime, and the jerks often happen during times where I am still digesting food when I sleep (a jerk is usually followed by the need to burp). I have a feeling that by working on complex problems right up until bedtime I am burning through too much of the energy eaten at dinner and then my body is perhaps low on certain nutrients.

    Something else I have been pondering, is if it perhaps caused by a possible H.Pylori bacterium infection – a parasite that lives in the stomach, approximately half of the world’s population has it. It is often the culprit for people’s acid reflux, and although it generally doesn’t cause issues in people, it has been linked to Parkinsons and Parkinsons-like symptoms.

    Lastly, I tend to sleep with some kind of light on in the room and that seems to make things worse too, so have also been having a bit better luck sleeping in total darkness for a change.


    • Hi J! I did a sleep study and I didn’t have any hypnic jerks that night, like I usually do, but they did determine that I would have an apnea and then I would jerk afterward. They said the jerks I was having at sleep onset sounded like hypnic jerks. So apparently I have both problems. I got a Phillips Respironics Remstar Auto cpap and didn’t really get any relief from the jerks, which I still think is odd. They told me that might jerks might get better with time of I kept using it, but it was so difficult to sleep with that I quit using it. I don’t know if I still had jerks because it didn’t get rid of all of my apneas or what. Now I wonder if a cpap that doesn’t automatically adjust for the apneas and starts out at the therapeutic pressure would be more effective in helping me. The reason that I think this is because I borrowed my Dad’s cpap for a night before I got my own, and I didn’t have any jerks, but I only used it for a few hours and at the time, I thought it was just a coincidence. He has the RemstarPlus M series. Anyways, good luck with your sleep study! Let us know how it goes and update us on your progress!

      • Anonymous said:

        After years of going through the same thing I can turn up the CPAP as high as it goes and still have jerks. It sounds weird but certain things most definitely give me jerks and arousals. Anything that raises my testosterone. Rogaine for my hair…Both cause water retention. So after yrs I am not sure if it is breathing or nervous system. it could be both. Drinking heavily will cause it also. If you have them bad enough nothing will stop them. Only thing I ever fond was Xanax ER but trying to get off it is scary.

      • Yeah, I can’t figure it out either. Seems like if I am having jerks from the apneas that a cpap would help, but I don’t notice a big difference. Alcohol raises cortisol, I don’t know if that has anything to do with it. But the supplement I took, 5-HTP, is what started this while mess for me and it also raises cortisol (stress hormone), so maybe there is a link. Really wish I could figure this thing out. Also, I think sleep apnea could also raise cortisol levels since the fight or flight system can kick in when you stop breathing. So that could point to it having to do with the nervous system, I suppose. I know my jerks are worse with stress, but I don’t think everyone feels that way, so I don’t know if everybody’s jerks are caused by the same thing or not.

      • Anonymous said:

        I am taking Flexeril tonight a muscle relaxer. Seemd to knock me out for a while last night.

      • Also, it seems like Xanax should be affecting the nervous system, so maybe your jerks are due to an overactive sympathetic nervous system.

      • Anonymous said:

        Yes, so what is the answer? I am convinced anyone that takes enough of Xanax WILL sleep. Based on that everyone would have central nervous system issue.

      • I think your best bet would be to ask your doctor what exactly does Xanax do and how does it affect the brain, body, cortisol levels, adrenals, nervous system etc. If you can figure that out, then maybe you can solve your jerks and even look into a more natural approach such as supplements, vitamins or minerals to fix the underlying cause of the jerks.

      • Please let the rest of us know if you get any answers.

      • Caligirl; Another thing, you said they didn’t tell you what is causing your apnea?
        One clue is that you borrowed your dad’s sleep apnea machine. I’ve seen where it also runs in families. It could be the structure of your jaw, your mouth. An ENT dr could probably tell you more than a sleep clinic. My dad snored very loud sometimes. I think he slept at least 6 hrs but took a nap in the afternoon whenever he could. Maybe his sleep rhythm was off during the night because he always was up by 5am and said he’d been awake awhile. Sure wish I could take naps.

    • Hello, I just wanted to chime in as I saw that you take Xanax for your symptoms. Yes, getting off of it could be scary so I would recommend a slow taper if you choose to get off. Refer to heather Ashton’s manual (google it). She explains how to come off of benzos. I came off of clonazepam after finding her manual.

  6. the difference between isaacs and morvans syndrome is that morvans starts slow with the jerks or the sleep starts at the beginning of the disease isaacs comes on more rapidly quickly later the insomnia is the main symptom of both diseases.The hallucinations and memory loss come from the inability to sleep just look up the symptoms of sleep deprivation peter trip is a good example i will put that link there as well the man who stayed awake for eight days straight.

  7. Where is the ‘man whocannotsleep’ these days? I hope all is well with him.

  8. Yes, I have been wondering as well, where are you manwhocannotsleep? How are you doing?

    • Thank you, guys. I am here and always read the comments. I am still battling this issue and believe it has something to do with cortisol or adrenaline or something related. I also think inflammation has something to do with it. I have been keeping extremely busy and my career is really picking up. My work has been great, but this silent battle is always with me at night. It is lonely and isolating, as you all know. You are always in my thoughts, and I wish I could contribute more to this site and actually meet you guys at some point. I love all the information and support you guys contribute here. Please keep up the good work and keep everyone updated with any theories or advice. Love you guys.

      • Brian Martin said:

        I found this blog almost three years ago when my problem first started, and it sometimes amazes me that so many other people suffer from this. I also find it reassuring because when my troubles began I had to see six doctors (two at urgent care, my GP, a second opinion, a psychiatrist, finally a neurologist who diagnosed me). My health insurance collapsed, I lost my business and had to move back home with my parents. It was the worst thing that ever happened to me. Finding this blog gave me some hope. Three years later and I still have the sleep twitches but I’ve become accustomed to dealing with it. I read all the comments too, contributing advice occasionally. I too have tried a lot of different things, have had good luck with clonazepam and etizolam, although they are both very addictive. I’ve been addicted to both. But I have to sleep, and on the plus side my life is back on track.
        I am grateful for this forum and to all the people who contribute. Best of luck to everyone suffering from this problem. I wish you all a good night of sleep.

      • Anonymous said:

        Mine started the same time this blog started also . I know it’s one of 3 things . Hormonal . Sleep apnea . Brain stem issue .

        It is silent hung that alerts the cns and arouses you . If you take enough drugs you can eliminate them. Let me know if anyone is using flexeril. It seems to be working . A muscle relaxer

      • Flexeril is not a benzo right? I am not sure we have it in Australia.(will have to look into it)
        Is it working well for you?

      • It’s good to see you are back on track Brian. It’s terrible that we all have to suffer such a crazy condition. I’m trying my best to avoid clonazepam and am managing on zooiclone which is you Lunesta and a small amount of mirtazapine .
        I also found that mine are worst later in the morning, say after 5am. The few times ive had success sleeping has been on my side. Ive never had any luck when laying on my back, has anyone else found this?
        How many hours sleep are you managing?

      • Brian Martin said:

        Thank you, I appreciate it! It took a while but I’m getting better as time goes on. I just got off the benzos; I was also taking Clonazelam, flubromazelam and etizolam when it was bad. I also take zopiclone and ezopiclone, and had a prescription for ambien. I forgot that when I was listing meds I used. In other words, anything I could get my hands on! When I say I just got off the benzos I mean just this past month. I tapered down until I could quit them completely.
        Thank you for this blog, glad to hear you are doing better too! My career is back on track and I feel as if I am back to living a normal life. Take care!

      • Great to hear Brian. It’s also great you get on the blog and let us who have only had this crazy condition for a while know that there is hope. Mine came out of the blue so it is eeally annoying as I don’t know what to pin point it on. The only thing was a Hair straightener product that I used that day and that night and the next 3 nights were like I was being electiricuted every time I tried to sleep. Its been 8 months and they have tamed down say 70 percent, but like you said even the smallest once are always at the wron time and just as hard to fall asleep with. Again, great that you are doing well and keep in touch…best of luck with it all.

      • Thanks for your posting, Brian. I hope things continue to get better!

      • Great to hear you are doing well. Its good to see your career has taken off and you are managing this crazy condition. Are you still on Clonazepam? or are you trailing something different?

      • For those who followed my original post a few months back, I thought I would give an update…

        When this first started my jerks were about as bad as they get (some felt like seizures). Pure torment and I had to take seroquel to get a few hours of sleep. Remember, this is a paradoxical side effect from clonazepam, so taking benzos is out of the question for me.

        Now, (5 months after clonazepam) I am still suffering but my symptoms have changed. I currently take about 2mg of mirtazpine. I have not had a jerk free night even once, but I have had a few nights with very little… And I finally for my first time in 10 months, slept 8 hours! I’m in a wave again (last 3 nights were under 2 hours sleep). Anyway, my jerks are different. I’m mostly getting what feels like tight contractions of my muscles where my body doesn’t move. These are usually followed by a noise in my head. I also get other kinds of auditory sleep starts still, and I also still get some shoulder, foot and head jerks (but they seem smaller). Last night, my tongue kept spasming or clicking while making a noise that was waking me constantly. Very annoying. If it weren’t for all the noises that I get with these spasms and jerks, I think my sleep would be better. Does anyone else get a lot of this too? I pray that the change in symptoms means that healing is taking place. I used to feel like I needed to tuck all of my body parts away in the couch cushions just to sleep at night (of course that never worked). Now, I don’t worry so much about my body parts flailing around and try to just sleep in whatever position is comfortable.

        Before my current wave, I was averaging about 4.5 hours sleep a night. Far from my old 8-9 hours that I so badly miss!! Peaceful sleep to all of you…

      • Brian Martin said:

        That’s what I used to do too: try to pin my hands and feet so they wouldn’t move when trying to sleep. It never worked; something else would twitch. I also get audio hallucinations. Instead of a twitch I’ll here my alarm clock go off, or a dog bark, or some other sound.
        The worst period I went through was the first two years. The most sleep I could get with medication was about 3.5 hours. Gradually it got better. I hope yours does too. I go through cycles where they go away, but they always come back. I was just trying to take a nap and I felt like I got hit with a cattle prod: my whole body jumped, I had that three nights ago but was able to sleep the last two with just melatonin and Benadryl, getting about 6.5 hours.
        I hope yours eventually tame down. At first they are unrelenting and so severe it seems impossible that this isn’t a highly documented disorder, but eventually they get weaker. Even when they are light they still keep me up though; my limbs aren’t flailing around though.
        I did the benzo route, and I also took mirtazapine, trazadone, flexeril, soma, medical marijuana (both cbd and thc-second one didn’t work) as well as Benadryl and doxylamine…anything to get some sleep.
        Best of luck to you and everyone here!

      • Thanks “mhcs” for coming back. Do you think that your symptoms have improved over time? Are you still taking clonazepam? I think some of us were really worried about you… Glad you are still alive and well!!

      • Congratulations on your success with your career! I feel like this could have something to do with cortisol or adrenaline as well. I hadn’t thought of inflammation, but I could see that playing a role as well, since I have been suffering from daily headaches for a while now. I wonder if a cortisol lowering supplement could help with the jerks? It’s good to know you are here, and I will keep everyone in my thoughts and prayers.

      • Thank you so much! I think a cortisol lowering supplement is a very good idea. I have had some mild results with Ester-C, which lowers cortisol. I began a trial of Relora, and I think it lowered my cortisol and was helping. Unfortunately, I also have autoimmune issues, and it made those symptoms worse. I think Relora is worth a try. I take turmeric and ginger in hopes of cutting inflammation in my body, too. Has anything worked for you?

      • Are you still on Clonazepam?

      • Yes, I’m still on it. I really dislike it and sometimes wonder if I feel worse than if I didn’t take it and didn’t sleep at all. Sometimes, I won’t take and be up all night. Other times, I’ll take it and still be up all night. It’s not a great option, but if I keep taking more, I usually will eventually fall asleep.

      • I know what you mean. I have it as backup but use zopiclone mainly.
        I do find I get more daytime twitching with clonazepam. How many hours do
        you manage?

      • It’s hard to really say. More nights than I’d like to admit, I don’t get any at all. I used to never be able to sleep at all without a klonopin, but that has changed somewhat over the last few years. How about you?

      • Well, I am all over the shop at the moment. Mine started in
        June 2015 and was alot worse in the early stages. I have had
        some success without zopiclone but only get 3 hrs and probably only a dozen or so times in
        the ast 8 months without meds. I am currently taking 7.5mg mirtazipane.
        Which helps with anxiety.
        I can get to sleep with just a quarter of a 7.5mg and still only
        get 3 hrs. Insomnia sometimes makes things worse than the jerks
        themselves. The jerks have settled alot but still come at the wrong time
        I have worked out that no matter what I will get jerks while laying
        on my back(don’t know why). I am trying various herbs so will see how things go.

      • Hi Brian! It’a great to hear that you are doing so much better and that you have gotten off of your medications. That is a tremendous accomplishment! I wish you continued success!

      • Anonymous said:

        Does anyone have frequent urination in conjunction with the jerks ?

      • Yes, I even posted a blog post about it. I have to urinate more when the jerks are really bad. It’s a weird connection.

      • Brian Martin said:

        Thamk you so much, I still appreciate your support
        . We all go through bad patches and step off the grid for a while, and that’s just what I’d done. And then I read other people’s stuff and I want to chime in. I have incorporated vitamins but I find that I have a similar situation as others; it extremely hard to pinpoint just what it is. Mine started after taking a research chemical that was supposed the me like ecstasy. Suffice to say it was not and the subsequent problems nearl derailed me. Well, if I ( and others) can come out of it then there is hope.
        Thanks for the message, take care! As far is sleep goes I varies between four and six hour0ccasionally seven. At the wordt!? Zero to mine.
        Taker, thank you for starting this blog!
        Brian Martin

      • To anonymous,
        I had frequent urination after I withdrew from clonazepam. That lasted about 2 months. How did your jerks start? Frequent urination is a common drug withdrawal.

      • Sleep apnea causes the body to release a chemical into the body that causes frequent urination. I’ve had to limit my liquids at dinner for a while now. I find that when I use my cpap, it fixes the problem. Maybe you should consider getting another sleep study done to see if your sleep apnea has gotten worse, because you may need to make an adjustment to the pressure on your machine.

      • I have my Cpap on 9 and I can turn it up to 20 and still have utination . I have tiny proststate. The jerks always come with utination . Always . I have researched for years can’t figure it out .

      • I know an sleep doctor that has her kids using Cpap and she does also but doesn’t show over 5 an hour . She swears it gives people more energy regardless of the defined sleep apnea .

        Mine started at the same time I used prescribed testosterone . I only used it a month . I have never been the same .

      • Anonymous said:

        For the man who cannot sleep. I need to send you a private email. How can I contact you via the blog?

      • Thank you for the tip about the relora. I’ve tried ativan and clonazepam, which both helped. I also took trazodone for about three months, which helped also, I believe. I have a combination problem of having movements caused by apneas, as well as hypnic jerks. I believe they are both caused by the same problem, an increase in cortisol. Not fun! I’ve been drinking tart cherry juice every night, which helps inflammation and also contains natural melatonin which promotes a good night’s sleep. I’ve also started using a cpap again for sleep apnea. I have a lot less jerks than I did five months ago when the jerks started for me. I usually have three or less per night, so my condition is getting a lot better. So, I believe there is still hope!

      • I drink tart cherry juice every night, too. I’m really convinced it is a combination of inflammation and cortisol for me. I’m happy things are getting better for you! Hang in there.

      • I too have the exact same issue. Started 4 years ago. I call it a fight or flight response just as I’m dozing off. I am SO beyond sick of it. Getting tested for H Pylori. Could be it… or could just be another hopeless branch in my travels of possible answers.

      • Alkalyzing the body is a good way to deal with inflammation. A glass of lukewarm water in the morning mixed with the juice of a lime or a lemon is a one way to do this.

      • People, please stop messing around with trying to fix it with prescription drugs and supplements! You could have sleep apnea, which is a very serious nightime breathing disorder. I’ve have these repetitive sleep starts along with chronic insomnia for a long time. Doctors did not suggest a sleep study for me because I’m a small person. But I was recently diagnosed with severe sleep apnea (in supine position) and mild sleep apnea while on my side. I am a small person, not overweight at all, I do not wake gasping for air. My sleep study showed that my tongue obstructs my airway when do get some sleep. Abnormal breathing rouses the brain over and over. Yes, sleep apnea eventually caused various types of inflammation for me too. Sleep apnea symptoms can vary, depending on what’s causing the breathing disorder and how long you’ve been suffering with poor quality sleep.

      • I agree that a sleep study should be done for anyone with this condition, but be ready for the cost. In the Midwest (Madison, Wisconsin) it was $5600. My health insurance only covered $1500 of that and I paid the rest. It turned out in my case it was not sleep apnea, simply exaggerated hypnic jerks, but it is good to rule everything out so you can receive the proper diagnosis.
        Good luck to all.

      • Been dealing with this 3 years. I just lost 13 lbs and the jerks stopped. I wear a cpap also but still had them.

      • Jessica said:

        That’s awesome mark!! How long have they been gone? Strange how this thing happens for so many random reasons. Did you eat a certain way to lose the weight? Maybe it is your new diet?

      • Caligirl said:

        That is great, Mark! I’m so glad you finally found your answer! My body mass index is still in the normal range, but I have gained a few pounds over the years, and I don’t think I had sleep apnea when I was thinner. Maybe if I could lose some weight I could get rid of these awful jerks as well. Did you exercise and/or diet to lose the weight? Congratulations on your weight loss, and most importantly, getting rid of these terrible jerks!

      • Caligirl said:

        So why didn’t the cpap get rid of the jerks? Are cpaps just a big scam? Do they even correct sleep apnea?

      • Cpap appears to give me more energy. After 3 years I cannot say exactly how they affects the jerks. I do believe it helps. I have been snorting before without the mask and placed it on and it stops. That said many times I have had jerks with the cpap and I can turn it all the way up to 20. It is maddening. I am a believer in CPAP just not positive how it helps the jerks. I have had 3 sleep studies only one showed moderate Hypopneas. THe other two did not show it. I know a sleep doctor and she has not been diagnosed with Sleep Apnea. She uses CPAP and has her three kids using it. She swears it gives them more energy. I agree with that.

      • Caligirl said:

        I wonder if I am having central apneas that my cpap isn’t stopping. My cpap says I’m having one or less apneas per night, so it seems like it should be taking care of the jerks and it’s definitely not. Either that or maybe it has something to do with the ramp setting. Maybe I’m having central apneas during the five minutes of ramp time. I don’t quite understand when the ramp mode happens.

      • I have went back and forth after using cpap for 3 years it does not stop the jerks. I think it provides benefits but it just does not stop jerks.I think it is very rare that sleep apnea causes jerks. I do now think it is anxiety and possibility certain medicines.

      • Certainly some medications.

      • Hi Mark,

        Which meds do you suspect make them worse?

      • This will sound weird. But Testosterone therapy is when mine started and definitely caused them or exacerbated them to where I noticed them. Also, if I take rogiane for thinning hair it gives them to me like clock work. Almost like anything that revs you up. I cannot figure out the correlation but I can be off these medication for months upon months now and I still have the jerks. It’s something with the central nervous system.

      • Interesting Mark.. Mine started one night after the hairdresser put a hair straightener product in my hair and that was 10 months ago.. There was something about the smell that bugged me for days and that night I woke up startled and things haven’t been the same. I get the head noises, the constant jerking, twitching, you name it… Torture

      • Yep that’s exactly what happened to me. I pretty much think Rogiane started it. There are no other reports of testosterone causing this. There is all kinds of stuff on Rogiane. I just cant believe it.

      • Unbelievable, did yours start straight away? Like I said, mine happened that night and I had not done anything different other than the hair product… I also don’t understand why it still haunts me every night.. Are you sleeping better and how long has it been?

      • I have never truly figured it out now. The first night i took rogiane before I ever took Testosterone I have restless legs for 4 straight nights. I was 46. never had them in my life. But they went away. Then about 3 moths later I started testosterone.The jerks came on one day in Chicago as i was taking a nap. I kept gasping so I thought I wasnt breathing. Had 3 sleep studies. Only one showed moderate hypopneas. So I got on CPAP. I can say that I do not know what caused it for sure but rogaine and testosterone both give me them way worse. And then it got to where if I had one drink of alcohol they went off the charts. After I go off off everything I would have them for months afterward. Then I would try one of the things. Testosterone..Rogaine..Drinking. The testosterone and rogaine both cause them immediately. It is so weird.

      • So interesting Mark. I had 4 nights of feeling like i was being electrocuted the day after I had a hair straightener product appled..I didn’t sleep for 1minute those 4 nights and had to get on valium. Things have settled a little 8months later but still not med free.. I also notice that if I drink, that night will be horrid, even if it is 1 beer. My sleep study showed mild sleep apnoea.. I am organising another one soon..
        You are sleeping med free most nights correct? I hope things have gotten better for you.

      • Anonymous said:

        Exactly what happened to me . Exactly . I went 3 months without having a beer then I would have one and jerks went crazy after not having any for 2 months . Whatever it is it takes months to clear your system and then you can start drinking again .

      • And I bet anything it was that hair product. Once you get them they never go completely away. People think they do, I don’t. They go away for a while. Then your body becomes sensitive to other things that sets them off. I tired Zoloft a few weeks ago for two days. It made me very tired but the jerks did go away and I slept like 12 hours. I was trying to see if like usual they would come on when I was no longer tired. Could be coincidience. I don’t know.

      • So do I Mark.. The hair product has certainly changed something in my body that is now struggling to get back to normal.. My heart rate is higher than normal muscles twitch more than normal, everything is just so screwed up.. Did you take Zoloft more than 2days to confirm that it helps the jerks? Also are you in any other meds?

      • The problem with Zoloft and other ssri they are known to cause jerks, so who knows. I’ve been taking mirtazipane 3mg now as the jerks have lessened but I feel it could be giving me stomach problems..

      • Anonymous said:

        Rand guess what mitrizipne gave me horrible jerks ….. No doubt. about it . M reading that Seretonin is closely related to sleep disorders . I took Zoloft 3 nights and was out like a rock no hint of a twitch but it made me tired . Gong to try again something you said earlier about testosterone causing dopamine makes me think the Ssri may be right for me

      • Do you take it in the morning or night?

      • I feel the need to chime in as to make sure that any newbies here don’t become scared off into thinking their problem is permanent. First, you need to figure out why you have the problem. If its apnea related, it can be controlled ad possibly corrected with a cpap. If its due to anxiety, it can also be controlled via natural coping techniques like cbt. If its from taking a supplement or drug (like most here) then it can be corrected by staying off ALL drugs. Sure, there may be certain drugs that cause permanent brain damage, but not even benzos (which are considered to be one of the most damaging drugs on our planet) cause permanent damage. The damage that had most likely occurred to cause these jerks is an imbalance between GABA and serotonin and an over abundance of glutamate. Anytime you mess with the natural balance by tipping the scales with synthetic drugs, you are making gaba and other chemicals in the brain to become lazy and stop working on their own. When the drug stops working, basically your brain stops working normally and it will fight for homeostasis (but may take many months or possibly years to get there… Up to 5 years with benzo use). Fortunately, most people recover from benzos within 2 years. Mark, you have mentioned that this started from testosterone use. Testosterone is closely linked to GABA functioning (as is progesterone and other hormones). For sensitive people like us, these drugs and hormones create the need for our bodies to produce its own hormones/chemicals again. By taking a drug (like a benzo or even alcohol) to cover up the problem of another drug, we are essentially keeping our bodies out of homeostasis. However, some drugs may help us through the worst of it if you are careful about your use and taper off when the time is right. I had to take mirtazipine and I’m thankful I had it. I’m 2 weeks off of it now that my brain has stabilized a bit. I think the key thing in this mess is patience when it comes to healing. Easier said than done!! I’ve about lost it many times over in the last 6 months off of clonazepam. Thank god I stayed the course and have rid my body of the poison that did this to me. I am on benzobuddies.org and have talked with several people who have had these jerks (some of them as bad as us) and they no longer have them. For most, it took up to a year for them to feel at least 90% better. For people in benzo withdrawal, there seems to be a pattern of waves and windows where symptoms rev up again after a period of normalcy. I think this might ring true for others here who got this from a supplement or hormones as I keep reading how people cycle through rough patches. Eventually, those rough patches should cease and all will be normal again… As long as you stay away from more mind altering drugs!! I just had a terrible wave 2 nights ago. My whole body was back to violent full body jerks all night. Again, I was about to lose my mind but thank god I was back to sleeping again last night (6 broken hours). I keep hearing from the benzo “experts” that these sneaky waves mean that more healing is taking place and that what follows will be a better baseline. I’m starting to think that they are right. My last big wave (2 weeks ago) created a better baseline where my jerks really died down. Anyway, sorry this turned into a novel! I just wanted to make sure that people don’t lose hope that this condition is permanent… For most, it is NOT!! Get sunshine, stay away from msg’s, most supplements, hormones, sleeping pills (if you can) and eat healthy!

      • Ok I have a question . I want to take testosterone ! It make me feel great . Excluding the jerks . Would an Ssri help with that taking it along with it? As I stated when I took an Ssri for a few days I couldn’t produce a jerk if I wanted too . So are all ssris bad in your opinion ? It just made me really tired but as we all know being tired does not make you not have jerks . But I had zero for those days . I could sleep forever

      • Mark, I think you need to weigh the pros and cons of your testosterone use. Would you rather feel good or sleep poorly? I guess I’m confused how it can make you feel good if you aren’t sleeping though. For me, sleep is everything! I would never take something if it made me feel euphoric during the day but robbed me of sleep. Sleep is so important to our bodies. Slow wave sleep is how we regenerate and heal ourselves. Without it, we are more prone to disease and cancer. Not to mention mental instability. Anyway, I would advise to stay away from testosterone and alchohol and get yourself back to balance. I am completely against taking an ssri to counteract the side effects of other drugs. I only think that ssri’s should be taken for severe cases of depression/suicial ideation. Cbt had been proven to work better than any pill. However, trazodone/mirtazpine/doxipen/etc. are sedating antidepressants and should be used if a a person is experiencing complete insomnia like I was. If you aren’t experiencing complete insomnia, just rid your body of all the experimental stuff that you have been taking and find other natural ways to feel “good.” Good for me is SLEEP! And now I’m on track to getting there naturally:)

      • Hi Mark

        I guess if you took it for a short period of time at low dosage it might not be a big problem.. I agree with Jessica that for any normal person taking meds probably wouldn’t be such a big deal but the fact we have this crazy condition seems to affect and bring on more issues.. How many mg are you taking?

      • IM not taking testosterone now but I am 49 and I feel great on it. I am trying 25 MG of Zoloft. I have read low levels of Seretonin can cause sleep disturbances and even sleep apnea.

      • Please keep us updated Mark.. My Dr suggested I try Luvox which is in the same class as Zoloft.. I tried 12.5mg and got some bad nausea then started reading about Ssris and decided to stop it.. I know people who have taken it with no problems. I guess I’m being more skeptical about things as I never took meds prior.. What type of testosterone are you taking?

      • I’ve noticed my jerks have settled but I am getting alot of the internal head and internal jerks where my body doesnt actually move.. Also once I wake after 4hours sleep, I cannot get back due to the constant internal head noise waking me… So annoying.. Anyone else get these and are you able to sleep through them?? Last night was med free so I’m doing me best to see if I can get things back to normal.

      • Anonymous said:

        Yes it’s a minor jerk ….

      • Hi Caligirl, From my own experience your fasting glucose of 100 isn’t high. It’s barely into borderline prediabetic. When my fasting glucose was at 106 three yrs ago, doctors told me that prediabetic is between 100 and 120 and 106 was okay. I don’t know about the hunger part but I think the jerks (which I also have when trying to fall asleep at nite) and the shaking are nerve related problems, and so is insomnia. The apnea rouses your brain over and over. From what you’ve said before, it sounds like your sleep has been abnormal for years (so has mine) and it takes time to heal your nervous system, like even several months on cpap every single nite before you consistently get normal sleep and feel better. I’ve read quite a few postings on cpaptalk.com and other sites where many people say that persistance is the key with c-pap. They say don’t interrupt treatment, do not give up. Some are lucky and start feeling better within days while for others, it takes several months of gradual improvement or even no improvement. One lady said she had to stay with it for 7 mos. before finally she started “getting to the other side”. It was difficult but she was determined to “get her life back”. One piece of advice I keep seeing is “you have to use it every single day/nite.” One person said she started out gradually with 2 hrs, then 4 hrs, and on up but she put it on every single day and or night and tried. You must treat the apnea every nite or you won’t heal. If you go to the main page of cpaptalk.com, look down where it says “Post a New Topic”, and beneath that, look down the links and the last one is “Newbie would like to hear success stories, please.”. I read through some of those, there’s 39 pages going way back to Oct 2006. Some people say, (especially ones who’ve had untreated apnea for years), it can take several mos. to see consistent results. I noticed soon after I started getting insomnia, my appetite actually went down and since then it varies, I get hungrier when I’ve slept more. I think sleep apnea can affect about anything.

      • Thanks, Sylvia. So you don’t think I need to worry about my blood sugar reading? It’s just strange because all of this started for me after I stopped taking 5-HTP. The night time jerks, daytime twitches, leg trembling, insomnia. I had been having light sleep for six years before that though. Did the jerks start for you after you took 5-htp, or were you already having them? I do really want to use my cpap, but I used it last night and I woke up after 5 hours of sleep or so and had difficulty falling back to sleep, and this is a pretty consistent problem when I sleep with it and I don’t know why. And I know trazodone would probably help me sleep with it, but I don’t know if that is a good reason to go back on medication or not, especially with everything I went through to get back off of it recently. It’s such a difficult process. I will check out those success stories you talked about on cpaptalk.com. So you think cpap could really heal all of these symptoms as well as our nervous systems? That fives me some hope, I do really want to be free from all of this. I do think this has something to do with our nervous systems. The technician at the sleep lab told me that my blood sugar and blood sugar related headaches would get better with cpap therapy. I’ve also been practicing deep breathing throughout the day and while falling asleep at night for the past three days, and I feel like it coild be helping with the jerks some. It’s supposed to calm the nervous system and I feel like if I keep doing it everyday, it could help my nervous system heal.

      • Caligirl said:

        The jerks never go away? That’s depressing. I do think something like Zoloft could help the jerks. Trazodone helps my jerks. Sometimes, I can take some in the middle of the night and it stops the jerks completely. Trazodone and zoloft both raise serotonin levels. Testosterone can raise dopamine, which in turn, would make serotonin levels go down. The jerks started for me after I stopped taking 5-HTP, which increases serotonin. From what I have read, when you take something that increases serotonin, your brain will start making less of it. So, after I stopped taking it, I’m sure my serotonin levels dropped, and my brain isn’t making more of it again like it should be. It seems like my brain should adjust again, but I just don’t know at this point.

      • Caligirl said:

        Please let us know if you try zoloft again and it still helps you. Hopefully, one of us can find something that helps.

      • Adding an ssri, like Zoloft, would probably help keep your dopamine and serotonin in a better balance, if you were going to try testosterone again. I agree with Jessica, in that I would personally want to stay away from anything that was causing me to jerk, as sleep is the most important thing in my feeling good as well. As far as medications go, I don’t know if the body can reach a complete homeostasis while on medication. That said, I took trazodone for close to three months, and in that time, my jerks got much, much, better and now that I am off medication, things have gotten slightly worse, but my jerks are far better than they were prior to taking trazodone. So, it is possible to get better while taking an antidepressant, I believe, I just don’t know for sure whether you can get all the way better while taking it. And your brain will have to go through an adjustment again after you stop taking the antidepressant, because your brain will need to get used to producing more serotonin on it’s own again after taking the drug. That said, my adjustment was a small one and was well worth it.

      • Also, I believe there are some natural supplements that can increase testoterone, so that might be a safer way to go if you really are wanting to get back on testosterone therapy.

      • They make me jerk also..Nothing like the real deal.

      • Mark, just curious, but what personal benefits do you get from testosterone? I wonder if there is something completely unrelated to testosterone that can give you the same benefits?

      • Makes me feel 18. Unreal. Man thing.

      • Maybe buy a muscle car and get a tattoo to feel 18, lol!

      • Honestly cant put into words how good I felt. In a few years every man will be on it in my opinion. It affects some better than others. I’m going to make a comeback soon damn the jerks. I was jerking off the bed but still felt great the next day.

      • here is another aspect that may help figure it out..Every time I had the jerks, I had frequent urination or the urge to go. Many people have reported this also. Constant urge to go every 10 minutes tops.

      • Mark, when I’m in full jerk mode, I’m up peeing about 3 times in the night… Full bladder too. Prebenzos, I never would have to pee until I woke up.

      • What the hell is that?? I have told some of the smartest doctors in the states about this…NO answer.

      • Hi Mark

        My homeopath describe is at the body releasing the unwanted adrenaline..He said it’s like when people have to pee when they get nervous..

        Do you have any tunitus through this? My ears have been ringing non stop.

      • Caligirl said:

        Frequent urination is a symptom of sympathetic nervous system activation.

      • Caligirl said:

        So basically, our bodies are in the fight or flight mode. Just like when you get nervous and you have to pee. Animals do the same thing if they get really freaked out.

      • Hi Caligirl; That’s good you get 5 hrs sleep with the c-pap. If you can’t fall asleep again wearing it, then have you tried taking it off and going back to sleep. A friend of mine who is on medicare was told he had to wear c-pap for at least 5 hrs a night so they must consider that enough to heal sleep apnea. So he was wearing it the required 5 hrs (said he fought the hose) and then took it off to get better sleep. He tried it for 5 months (with data going to a clinic) but then gave it up. Because several yrs ago, Medicare was making sleep apnea patients pay for the machine if they gave it up prior to 5 mos. So now this same person is afraid of the sleep apnea causing a stroke (he’s over 70) so he’s going to try again. I told him the machines/mask are improved since then. I’ve been getting headaches lately too and I’m not prone to headaches. Not sure if it’s from abnormal sleep or trying to taper from everyday use of clonazopam. Saw my sleep dr. yesterday and am scheduled for a 2nd study later this month. He said they would order a Phillips Respironics machine with a nose piece mask. He said a full face mask isn’t necessary even though I’ve been breathing through my mouth. Based on him saying that, last night I decided to try nose strips and salt saline to help me stop the mouth breathing. I’m also trying a humidifier since I live in a desert climate I got these ideas from an NP at the neurology clinic. It can also help to raise the head of your bed if you can. Did they tell you what causes your obstruction? The sleep doctor told me that the jerks, audio, and restless legs are caused by the apnea, not from sleep deprivation.

      • Hi Sylvia

        Are you based in the US?. Also, do your audio sounds come and go.. I find mine will go and then come back.. The Audio ones are the worse for me and definitely know alcohol brings these on for me, even just 1 beer.

      • Hi Ck; Yes, I live in the SW region of the United States. My audio sounds do come and go very randomly. Now I just wait for them on the nights I have that wide awake and wired feeling, just as I start dropping off to sleep. I seldom get sleepy anymore but if I do, I’ll go lie down for sleep right away. Sleep (without clonazepam) is precious to me. I never drink anymore but I’m more likely to have the jerks/audio if I’ve had a any sweets in the evening, or even if I’ve had a Starbucks coffee drink in the morning or if I’m stressed out about anything. Caffeine and sugar stimulate the brain and my nervous system has become very sensitive from the longtime insomnia. And now a sleep clinic tells me I have this apnea and I don’t know when that started, probably years before the chronic insomnia started in 2012. Yeah the audio is very strange, usually I get this snapping noise like somebody popping bubble rap, or it can be a thump, or sound like a horn or guitar string. Lately I’ve been getting a popping sound, very sudden like a rock hitting the windshield of a car. Are those the sounds you get? I was relieved to find out from internet sites that many others get them too. Small dose of clonazapam helps me bypass them and sometimes I can overcome them on my own after one or two. I saw where an internet doctor was calling them sleep starts; jerking, audio, or snorting awake just as you’re starting to drop off. For me, I’m sure it’s because I’m entering the wrong sleep cycle over and over, which normally comes later in the sleep cycles, not when first falling asleep. That question was also asked at the sleep clinic I went to; “do you ever start dreaming right away when you fall asleep.” My sleep cycles are messed up and I’m hoping that c-pap will fix that so I can once again sleep through the night. Are you going to get help for yours? Can you sleep without medication? I’m trying to slowly cut back the clonazapam but now getting headaches.

      • Hi Sylvia.

        I am pretty much in the same boat.. I have exactly the same symptoms.. I seem to be overly sensitive to things now where I had no problem before. I have good nights and bad nights.. The jerks have settled the past month a little.. Up until then I was not able to sleep without a sleep med or benzo.. A quarter of clonazepam was the most i took.. I am now able to get some sleep with Mirtazipane and sometimes without it. I only manage 4 hours tops then wake and then find it hard as a combination of insomnia and head clicks that get me out from the sleep transition.. I seem to go into a deep sleep and normally don’t remember a dream.. I have gone through phases where I have had the weirdest dreams and then weeks with out dreaming. My ears have been ringing since all this started 10months ago and haven’t stopped.. I sometimes feel like they are clogged up.. I never had ear problems prior.. My ent mentioned that my lower mouth and tongue do obstruct my air way.. Sleep study showed mild sleep apnoea. I am getting one done this Sunday, however worried this insomnia that has now come about could create problems. I was even thinking about getting a mouth guard made up if I had to. Have you looked into this?? I also hired a cpap
        for 6 weeks in the early stages but found it hard to use when this first started as the anxiety was through the roof. Maybe this time around it could be different.

      • Hi Sylvia! I tried sleeping with the cpap two nights ago, and it didn’t go well. I only got about four and a half hours of sleep, and only about three hours with the mask on. I did end up taking the mask off after I had been up quite awhile and I looked at the clock and realized it was much earlier than I thought it was. I used to take my mask off in the beginning of my cpap treatment, but I think I still had trouble falling back to sleep. Now, it is especially difficult to get back to sleep, because I have a lot more jerks when I wake up during the night than I do at the beginning of the night. If I don’t wake up at all, I can get through the rest of the night without jerks, so that is the predicament. I really do wish it was easier. And sleep is becoming more difficult to get since I stopped taking trazodone. I’m afraid that my already low serotonin levels may have dropped even further due to taking the drug. So, I’m a little frustrated, but I know things could be worse. That’s great that you are able to get another sleep study done. When was your last one? I have no idea what is causing my apnea, and I really wish somebody had looked at me to try and figure out a reason. I hope your cpap therapy goes better for you than it has for me. I’m sure it will! It should take care of your headaches regardless of the cause, because it should reduce the inflammation in your body. Let me know how everything goes.

      • Anonymous said:

        Get the air Quattro mask trust me

      • Hi Sylvia! I forgot to mention something in my post above. I looked up on YouTube how to adjust the pressure on the cpap myself so I could start out at my prescribed pressure of 7. Otherwise, the machine starts out at 5 and automatically adjusts to a higher pressure when needed. At least, I think that’s how it works. And there’s also a ramp setting, so that keeps the cpap from going to the prescribed pressure for a set amount of time, that can also be changed. I did seem to have a harder time getting to sleep, and maybe staying asleep with it starting out at a 7, but I only had one jerk with it on. So, maybe doing that helped with the jerks, but I don’t know for sure yet.

      • I don’t think I would need a full face mask though, since I’m pretty sure I don’t sleep with my mouth open.

      • Ck; Wow, can’t believe I’ve met two new cyber friends (you and Caligirl) dealing with pretty much the same thing I am. So sorry to know that you’re having to deal with this nightmare of insomnia hell, the bizzare neurology stuff, doctors, pills, c-pap machines. And you both sound younger than me, maybe alot younger. I’ve told doctors about the snapping noise and they give me this perplexed look, even a neurologist. That’s okay, I’ve been around for awhile so I just stare right back at them! Although the neurologist did ask if I was getting various sounds as he told me that he was sending me for an MRI (came back negative for lesions or whatever else they check for). That leaves me wondering today, why did that neurologist not know to send me for a sleep study, instead he prescribes clonazapam. And all the other doctors I’d been to who shrugged and said to take sleeping pills. Is it the expense?

        Well I have a question for you; You say it’s tongue obstruction, did you have any extensive dental and orthodontic work done as a child or teenager? Because that can cause apnea later on. My teeth were very crowded and I have a small jaw. An orthodontist ordered 4 teeth pulled to move the others back. So by age 20, I had a nicer smile but it may have caused my sleep apnea. They pull teeth and move the others, it makes the tongue not sit right as it also gradually changes the jaw and makes less space. I’ve come across several postings from others saying that their orthodontic work left them with sleep apnea many years later. I’ve read articles that back this up. I mentioned it to my sleep doctor and he didn’t disagree. People with a receding jaw are more likely to end up with sleep apnea. I’ve read about the mouth guard and heard it’s custom made and very expensive, like several thousand $? Would you get that through an ENT doctor? I also have the tinnitis and figured it’s just aging but not sure. My brother has it very bad and has lost some of his hearing. I’ve also had buzzing in my ears, and asked the sleep doctor to check them. He used an instrument (he’s also an internist) and saw earwax buildup. Told me to get earwax removal drops. Works great. I used them last night and buzzing is about gone, will use it again tonight. Did you ask the ENT dr to check your ears?

        Your sleep is indeed very similar to mine. I wake up early, usually between 2 and 4am, depending on when I got to sleep. Then I go through the same thing as you whether I took any benzo or not. I’ll start to drift off and and get the pop, or snapping noise, no matter how loud or soft and I’m wide awake again. But if I do get back to sleep again, it’s fragmented sleep with vivid dreams for up to an hour. Then I feel somewhat better the next day. Good luck with your sleep study. Maybe it will show some different numbers this time. Sleep can vary alot from night to night when you have this.

      • conkousoulas said:

        Amazing Sylvia. I got the Dr to check and yep both ears full of wax. I too started waxsol last night so what a coincidence.. I’m using the waxsol for 4days then off to the Dr to clean them out.. I think there must be a relatiion with the nerves in the ear and these noises.I wonder how many others get the noises? I know Jessica on here does..I have had work done as a boy, the usual tooth out here and there from memory and plenty of fillings. I had a real bad sweet tooth. The noises are the hardest to bare I believe, no matter how small or loud. They always come on after the 3oclock mark and like you maybe get a shut eye. I’m not having many dreams when I first go to sleep but yes if I get a sleep the second phase will have some dream, at times it feels like I was thinking not deeaming… I am 44 so yes younger. I pray that it goes away and maybe it was a bad apnoea or possibly the hair product I used which many have said unlikely as it was a shwarkzoff brand, (who knows). I just know I haven’t been the same. 

        Sent from my Samsung Galaxy Alpha

      • Amazing Sylvia. I got the Dr to check and yep both ears full of wax. I too started waxsol last night so what a coincidence.. I’m using the waxsol for 4days then off to the Dr to clean them out.. I think there must be a relatiion with the nerves in the ear and these noises.I wonder how many others get the noises? I know Jessica on here does..I have had work done as a boy, the usual tooth out here and there from memory and plenty of fillings. I had a real bad sweet tooth. The noises are the hardest to bare I believe, no matter how small or loud. They always come on after the 3oclock mark and like you maybe get a shut eye. I’m not having many dreams when I first go to sleep but yes if I get a sleep the second phase will have some dream, at times it feels like I was thinking not deeaming… I am 44 so yes younger. I pray that it goes away and maybe it was a bad apnoea or possibly the hair product I used which many have said unlikely as it was a shwarkzoff brand, (who knows). I just know I haven’t been the same. 

      • Hi Ck; One more thing about your sleep study. They may (or should) let you take a sleep aid. I originally went there thinking I could do a home study. When I told my sleep doctor that I may not be able to sleep enough at the clinic, he said to go ahead and take the clonazapam, he wanted me at the clinic. So I took a whole mg, 2 pills. Prior to that, I’d been taking 1 pill about 3x a week. Without it, I don’t think I would have slept much with being hooked up to wires and people coming and going during the night. I did sleep 4. 5 hrs then got woke up by somebody leaving at 3:30am.

      • Hi Sylvia,

        I know, that is my only worry also. Last sleep study I did i took 2 Valiums and managed 5 hours. I will try and do it without meds and see how i go, I’ll take some just in case.

      • Hi Caligirl; Hope last night went better for you with the lower setting. Give yourself credit for any sleep you can get with the c-pap. You’re probably still dealing with rebound insomnia from Trazadone and Ativan. It’s really been harder for me to cut back the Clonazepam from just 2 wks of continuous use. Think the tapering needs to be done very, very gradually. My last sleep study was Feb 11. Next one is Mar. 26th but think I’ll call there today to see if there’s been any cancellations and try to get in sooner. Last night I took half a pill right before turning in, had just one head noise before dropping off. I think Ck is on to something, maybe it was earwax buildup causing the audio. I’ve used ear drops the last two nites, some of it runs out though but I have an appt. with an ENT next month, will get him to remove the wax if need be. My sister says it’s painless.

      • Hi Anonymous; Thanks for the tip on what mask to choose. But it sounds like I won’t get to choose at this sleep clinic, (they are within my insurance network). I see the quattro mask is full face, made by ResMed in Australia? I asked the doctor about the ResMed machine because a friend has one but he said they order the Phillips Repironics which is made in Germany and also good quality. He said the nose cover will be sufficient even though I breathe through my mouth. Will try it and see what happens.

      • Hi Sylvia

        If you are a mouth breather like me you might find it difficult as I’ve used both here in Australia when i hired the machine .The Resmed was a good machine from memory but the nose mask was almost impossible for me to use.
        I wanted to also ask you,are you taking anything for tinnitus? You can email me ckouso14@gmail.com if you like.

      • Hi Sylvia! I’m so glad that the ear drops seem to be helping with your audio noises and I hope it helps Ck as well. Fingers crossed, it fixes things for both of you! That is great news! I want to thank you for encouraging me to use my cpap and educating me on sleep apnea and the difficulties that one can face while adjusting to it. I have been slowly reading through the stories you suggested on cpaptalk.com and I had no idea that others had so much trouble
        sleeping with cpap in the beginning, until you mentioned it. I thought it was just an issue for me! Anyways, last night went great with the cpap and I feel so much more rested. I slept at least 7.5 hours, maybe even 8 hours, I had some trouble getting to sleep at first, before I decided to try using the cpap again. I jerked twice when falling asleep, and that was it for the night! I think you’re going to really enjoy using your cpap and feel great and have much more energy once you get adjusted to using it! I just need to somehow get over my fear of not sleeping well with it, so I can start using it every night. I wondered too if I somehow inherited sleep apnea from my Dad, that makes sense now. His pressure is set to 8 and mine is a 7, so it sounds like our apnea could somehow be related. Also, I did have lots of orthodontic work as a child, my teeth were very crowded and I have a very small mouth, but I only had baby teeth pulled, no permanent ones, so maybe it just has to do with me having a small mouth or something. Just curious, did you start having the jerks before or after taking 5-htp? All of my jerks started about six weeks after taking it. I also read that 5-htp can cause you to go straight into REM sleep, because it messes with serotonin. I know I have been doing this a lot lately. And yes, I am a bit younger than you, I’m 34 years old. Anyways, good luck with your sleep study and your ear drops! Keep in touch!

      • Hi Sylvia! One more thing, I was thinking of having my nine year old start orthodontic work soon. Will it cause her to have apnea even if they don’t pull any permanent teeth?

      • Also, Sylvia, you can check out the Ashton Manual online. It should help you do a very gradual taper from clonazepam.

      • Hi Caligirl; So glad you got such good sleep last night, that’s another feather in your cap! Like one person on cpaptalk said, give yourself credit for every bit of progress.
        I tried 5-htp maybe one night a couple years ago when I saw it recommended in a Reader’s Digest article. I got more sleep but didn’t like how it made me feel the next day, very sluggish. So I’m sure it didn’t one tablet didn’t do me any harm. From what you say about the REM sleep, maybe it did trigger your jerking since your nervous system was already sensitive. What triggered mine was taking magnesium, then they went away and then I took iron (for the low normal ferritin) and jerking started again and I’ve had them off and on for the last 18 mos or so. I think it’s the sensitive nervous system from the apnea. People without a sleep disorder probably wouldn’t get the jerking from those supplements. Interesting that you also had the orthodontic work and I didn’t know that they’d pull baby teeth for that.

        I don’t have any formal medical or dental training, I’m just somebody who reads alot so I’m not qualified to give you advice for your 9 yr old. You would need to speak with an orthodontist about your concerns about future sleep apnea possibly caused by orthodontic treatment. There’s also sleep dentists you could look up for advice.

        Yeah I know about the Ashton manual. I don’t plan to go completely off clonazopam as of yet since I know I’ll need it to help me adjust to c-pap. I’m hoping to taper off for good in the next 3 mos. and that’s when I’ll need the manual. Hope you have another good night!

      • Caligirl said:

        Hi Sylvia! That is interesting how the iron and magnesium triggered your jerks. I took some iron a few months ago after the jerks had started, but I felt like it might be causing me more fatigue, so now I’m kind of glad I stopped taking it since hearing that it triggered your jerks. I also took magnesium for a few days, and on the fourth day, my jerks were definitely stronger on intensity, so I quit that also. I also read on an antidepressant withdrawal forum where someone said that magnesium makes things worse. I don’t remember the exact details now. I have been sensitive to caffeine for about four years now, and I always wondered why. I can’t even drink a soda anymore because it interferes with my sleep. I used to drink coffee everyday in my 20’s and it didn’t seem to effect my sleep at all. So, you think this sensitivity could be triggered by sleep apnea or sleep deprivation? Did the doctor tell you that your movements were a direct result of your apneas; ie you have an apnea and then a movement? That’s what the sleep lab told me, so I’m just really confused because I slept about ten hours with my cpap last night and jerked all throughout the night. When I looked at my cpap this morning, it said my AHI index was 0.6. So, I’m just so confused right now. Maybe you can help me she’d some light on this situation.

      • Caligirl said:

        Also, Sylvia, iron boosts dopamine levels so I wonder if that had something to do with it. Boosting dopamine levels causes serotonin levels to go down. It seems like some of us have had success with drugs that raise serotonin levels, like antidepressants, and it also fits in with the testosterone thing since testosterone also boosts dopamine.

      • Hi Caligirl; So you actually slept a whole ten hours? (I’m lucky to get that much in 48 hrs, especially w/o benzo). So do you mean that your sleep was fragmented with jerks, waking you up often, and then you went right back to sleep each time? How do you feel on that today? Just curious because that may be just another phase of the healing process. Have read a wide variety of stories on cpaptalk.com but most of what I’ve seen there don’t mention jerks, only one person I think. The good news is that you’ve had some normal sounding nights and that means a whole lot, it does seem to go back and forth for many, one step forward and two steps back maybe. I think magnesium can be hard on people who have a compromised nervous system and that would be people like us. Probably iron too but I did take prescription iron (small coated tablets) for a few mos. last year and they brought my ferritin up w/o bothering my sleep. In fact sleep was improved a year ago while taking that iron but then I was also using bioidentical progesterone cream which has a calming effect for those of us who no longer have hormones. Previously I had used some liquid iron and it gave me the more wide awake feeling and my jerks came back after 2-3 wks of peace. Also caused slight headaches. If I were you, I’d make sure to get plenty of iron from foods such as red meat (but not alot), shellfish, beans, spinach, etc.
        Regarding the coffee, guess I was lucky to easily tolerate a morning or afternoon Starbucks cafe latte habit until 3 yrs ago. Now it’s a very special treat for when I’m having a very good day. And if c-pap works for me some day, I’ll be going back! Soda pop I gave up a long time ago, don’t even like it anymore.

        I brought up the jerking and head noise with my sleep doctor on two separate occassions. He said it’s caused by the sleep apnea in general, not in response to each apnea occurrance. Does that make sense? And whoever told you that the jerks are in response to each apnea occurrance? Well, I think you’ve proven them wrong with your AHI being less than 1 after all those jerks, right?

        Yeah, low ferritin is tied in with dopamine, forgot about that. And low dopamine in the brain can cause restless legs which I also have. I’m sure sleep apnea messes up the brain chemicals and only good sleep itself will straighten them out once again.
        Great job using your c-pap!

      • Some good opinions. Honestly, I do not think anyone knows. I now do not believe it is sleep Apnea. And I could be wrong. I have turned my machine to 20 and still jerked non-stop at on-set of sleep. It is depressing dealing with this and dealing with life in general at almost 50. I am not sure it is worth it. This life is short regardless. If there is no God, life is absurd. My only answer is to put my faith there because I cannot handle life on my own anymore.

      • Hi Mark,

        I know what you mean. If it wasn’t for my wife’s support things would’ve been different. This condition is bloody crazy. Even talking about it makes me sick. We shouldn’t be dealing with this. I went from being energetic and outgoing to exhausted and demotivated nearly every day. It’s been the toughest 8 months and every night I don’t know what battle I am going to have with my brain. Hang in there, be strong and have faith, that is all we can do.

      • Caligirl said:

        Hi Sylvia! Yes, I think you’re right about me proving the sleep lab wrong about why I am having jerks. Your explanation makes sense about the jerks being caused by sleep apnea in general. I sure hope that is the case with me. Whoever called me from the sleep lab told me I would have an apnea and then jerk and also the person who took care of me at the sleep lab, I’m guessing she was a technician. Then, when I went back to the sleep lab to turn in my cpap that they loaned me for a week, I told the person I saw for my appointment (I’m guessing she was a technician also) that I was still having jerks and her answer was that maybe they would get better if I kept using it. So, my diagnosis went down the toilet lol. As far as my ten hours of sleep last night, I did go right back to sleep after each jerk, and I was in bed for 11 hours. So, I figure I got around ten hours of somewhat broken sleep. I only have God to thank for that. I feel pretty good with that amount of sleep, but I’m hoping that my energy will get even better at some point. But my sleep is still disrupted by the jerks, so that probably effects my energy levels and my sleep quality to a degree. Last night wasn’t the first time I’ve slept ten hours since the jerks started either. I’ve been very fortunate that way. I know at one point, I was only getting five hours of sleep, maybe less, during my first three and a half months with the jerks. After being on trazodone for maybe six or seven weeks, my sleep got better and longer. I started getting 7+ hours a night at that point. Taking an antidepressant makes it so much easier to fall right back to sleep after each jerk. That’s what I found while taking trazodone, even though I am still off of it. There’s a good article about a sluggish lymphatic system causing sleep apnea by wellness resources (I tried posting the link at the bottom, but I can’t figure out why it won’t go to the page. You can google “lymphatic system sleep apnea” and look for the “wellness resources” article. It also mentions some supplements to help with the lymphatic system and circulation. I suggest you look it up, it’s quite interesting. Good luck on your sleep study! I hope all goes well!

      • Scott Meeuwsen said:

        Have you looked at heavy metals? I got sleep jerks suddenly (every…single…time…I dozed off – all night long) and found it quite literally impossible to sleep due to them after getting an amalgam (mercury) filling replaced unsafely by a regular dentist (NEVER DO THIS!). For 3 months the only way I could even get a few hours of sleep was with double doses of benzos. After getting them removed by a bio-dentist (IAOMT.org) and doing chelation with Andy Cutler Chelation (https://www.facebook.com/groups/acfanatics), I’m jerk free. Zip, nadda, 100% cured and have been now for over 6 months. Mercury is a nasty, nasty toxin that will clog up your neurotransmitters, your adrenals, thyroid, etc. If you have amalgam in your mouth, a full work up of vaccines, or other mercury exposures don’t delay! (If you want to get laughed at, just ask your doctor about this…if you want to be healed, then just look into this yourself with the above links)

      • I thought dentist no longer used Mercury ? Did you have it taken out or out in when the jerks started ?

      • Anonymous said:

        And could you clarify are you saying you had them your whole life ? Until you removed Mercury ? If not, when did they start ? How long did you have them ? I have has silver in my mouth since I was a. Kid but the jerk started at 46

      • I have thought of the possibility of mercury poisoning as well. I have had mercury fillings, quite a few of them, since I was a kid. I know over time mercury can seep into your body and wreak havoc on your system. So I am thinking of asking my dentist to remove them.

        I also am wondering about copper. I had issues with adrenaline rushes and the occasional twitching in my sleep before…the twitching was rare though and the adrenaline rushes were frequent. I was desperately going to doctors trying to get an answer and a good friend recommended a naturopath to me when the MD’s weren’t helping. So I went and she uses a machine of some sort that works on frequencies to tell her what’s wrong in your body. She told me I had a severe copper deficiency and a severe phosphorus deficiency and started me on liquid forms of both of these.

        I felt fantastic for a month…better than I had in my whole life, and then thing took a turn for the worse and have gradually gotten worse and worse to where I get the jerking every single night every time and try to sleep, and now getting sleep starts as well where I get a sinking falling feeling during sleep, my head feels like it goes number and I wake up in a panic with my heart racing.

        I am starting to wonder…if this naturopath got it wrong and I don’t have a copper deficiency, then I have been gradually poisoning myself with copper. I don’t know how to test this though. I have read that copper is tricky because while you can have low concentrations of it in your blood you can have high concentrations in your tissues, brain, hair, skin, etc. So a doctors blood test could show low or normal copper levels while your body is still overloaded with it. I know hair analysis should show this as well but I have also been washing my hair with a copper shampoo! So I would have to stop using the shampoo, let my hair grow out, for awhile, and then cut the part of the hair that is grown out to send in for the analysis.

        I suddenly developed a thyroid issue too, I went from normal TSH readings for years (last test being Aug last year, to having high TSH and low thyroid now. High copper levels will also cause this and could make sense why my thyroid has quit functioning now after years of normal blood test results. I didn’t have the thyroid problem before taking copper,.

      • Hi Scott, Did you do a hair or skin analysis to tell you that you had high mercury. I’ve had both and both have come back high metals especially copper and lead. I started a copper chelate and zinculum but as these jerks seem to be so inconsistent the day I took it I had some bad jerks and backed off. My bloods for copper, lead all came back normal,but as we know and Michelle mentioned it lives in the skin and bones. I’ve also thought about removing my fillings so that is another option as I have had mine since I was a kid. For me the jerks came out of the blue, I was fit healthy and had 2 sleep tests done with only the mildest of Apnea so i to believe metals could be a contributer. Good to hear you are on the right track, we are all praying to get there. It’s been 10 months for me and everyday is torture.

  9. Brian, thanks for coming back and giving us an update. I’m happy that you are managing well with this. I don’t recall from your older posts, but did this come on out of the blue? I find it amazing that people can get this awful crap and then take a benzo without suffering terrible withdrawals. Did you have any side effects after going off clonazepam? Did you taper? I think I’ve spread some fear about benzos on this forum, so just want to clear the air for others who are not sure what to do. Maybe a benzo is a solution for some… Just not me!! Since you just got off of them, perhaps your Cns will level out after you’ve been off the meds for awhile. I’ll be curious to hear how the next weeks/months play out for you. Is there any supplement, food or lifestyle habit that you think has helped you? I can’t figure out if excercise makes this worse for me. Thanks Brian!

    • Hi Brian (again). I just realized that you are the one who wrote me awhile back about this coming on from research chemicals. You say that it has been 3 years that you had this problem. Perhaps I can give you a little hope by sharing something that one of the docs told me. She said that benzos can take 5 years to recover from. Perhaps the chemical you took is somewhat similar in terms of damage?
      She drew me a picture of how the receptors and chemicals get rearranged. It was awful to hear as I cannot imagine living with this for that long! But since you are 3 years away from that nasty chemical you took and feeling better, maybe in a few more you will be as good as new. There is a lady I’ve been in contact with who got this from ashweghanda. She is now over 5 years into this. She is like you now… Symptoms come and go but much milder. However, she takes keppra everyday so I wonder if it might be holding her back from complete recovery. And for all others who read this, i Recommend staying away from Quinolone antibiotics like cipro. I’ve been in touch with another person who who got this from cipro and have read about other similar stories. I would hate to take one and send myself back to square 1! Anyways, keep in touch!

      • Brian Martin said:

        Hi, thank you for your reply. Yes my condition started after the use of a research chemical similar to mdma. Over the course of three years the jerks have gotten better; I can only hope that continues to be the trend. I’ve read about all the things people have tried, from medications and supplements and I must confess I simply took the medication route. I’ve also added vitamin B complex and that has seemed to help as well. Like others I also get the twitches in the early hours of the morning, after about five hours of sleep. I also intermittently suffer from partial insomnia ( I can get to sleep but can’t stay asleep) caused by many factors (stress, not giving myself enough time to sleep etc.) and I’ll get the jerks if I can’t fall back asleep within an hour or so.
        I’m sorry the benzo route. Triggered yours as that seems to be the most effective at combating them.
        Thank you for reply, and I wish you and everyone else here the best in working your way through it!

      • Has anyone here tried seriphos to lower cortisol?

      • No, but I think that is a great choice. Have you tried it?

    • To the man who can’t sleep…

      No, I have not tried seriphos. I take vitamin c before bed (supposed to help control cortisol) but it doesn’t seem to do much.

      I’ve been wondering how this started with you? I know you don’t know what triggered it, but do you recall the first few nights this started? Did it gradually build up or just start suddenly? It seems that some of us here started off with nights of extreme anxiety that led to the jerks. For me, it was about 5 nights of adrenaline surges and panic before the jerks settled in (clonazepam withdrawal).

      Also, do you get muscle spasms when you are sitting?

      • Mine started completely out of the blue one night after I took a bromelain supplement. It happened the entire night as has never stopped. I doubt it was the supplement, because I’ve never taken it again. Yes, I get muscle jerks during the day, too. They don’t affect me much, but they are there. You should try some other supplements to address the cortisol. I’m trying to find something that works.

      • To the man who can’t sleep:

        How long after you started jerking did you start on clonazepam? What has been your longest break from it? Whatever your trigger was, I often wonder if that drug has kept a lot of people in the fight or flight mode. It’s the only thing that makes sense to me as that drug is not only good at stopping them, but notorious for causing them. I’ve met a lot of people on benzobudies and beating benzos who had/have them. Seems they last for most between 3-24 months. Have you given mirtazpine a good try? It’s the only crutch I’ve found to work for me while I get through this crap that benzo withdrawal is!

      • Klonopin not addictive to me at all . Xanax was however . Everybody is different . These jerks are central nervous system related for sure . But apnea or many things could set it off . It’s amazing no one really knows a cure and the best doctors in the world don’t know . I’ve been to them .

      • Hi the man who cannot sleep.. Are you able to tell us what you are actually taking at the moment that might help some of us including vitamins? Are you still on Keppra?

      • Michelle said:

        I have been trying Serophos now for about a month and I notice no difference. I read that it lowers cortisol and since I thought this could be cortisol related I tried it. But haven’t seen any change.

        Does anyone here ever get a weird dizzy-like feeling in your head? Or sometimes a feeling like electricity swirling around in your head? I have been experiencing dizziness, lightheadedness, extreme forgetfulness (I forgot how to spell my name at the lab when I went for blood work and had to look at my driver’s license to finish spelling it…so embarrassing) a spacey feeling in my head, and sometimes when I am very sleep deprived I get the swirling electric feeling in my head accompanied by a strange tingling or tight sensation in my lungs and I know this feeling is prior to horrible and terrifying sleep starts that I get. Gabapentin is controlling my jerks now but the sleep starts have taken their place. Always some new symptom that takes the place of the old one.

        I went into my dr’s clinic this morning in a panic because the electric dizzy feeling in my head was so strong I was terrified. My doctor wasn’t in for an hour and I had not slept for so long I didn’t want to wait and hour and agreed to see another doctor there. I wanted to punch him. I’m telling him all my symptoms and all he can talk about is depression and anxiety. I’m sitting there telling him there’s electricity swirling in my head and that my face became tingly and all the other symptoms I have and telling him it’s NOT depression or anxiety and he says “I’m not saying you have depression or anxiety but maybe in this case an SSRI would help” Motherf–@#$%^&*! I was so mad. I practically demanded a referral to a neurologist and he said it would take until July to get in to see one. I told him I’ll take it, then when his receptionist was on the phone with the place they said they JUST had a cancellation and they could get me in tomorrow. I sure hope it helps, but I’m wary. I googled the doctor and he also has a website under his name for a money mart type set-up where they loan money to people at…get this…365% interest. His name was also on an article for a homicide 4 years ago at a house owned in his name and yet I couldn’t even find one review on this doctor as to his actual service. I did find a bunch of scientific neurology studies he was involved in. Fingers crossed he’s not a total ass and will actually do some tests on me!

        What a horrible day.

      • Sorry to hear Michelle, It is a crazy condition. I get most of what your feeling, some days are better than others. I have been experiencing the lung tightness also and constantly gasping for air. Have you taken a cortisol test showing if you had high cortisol? I took seriphos for a few nights and stopped it till I do a saliva cortisol test. I think it made my jerks worse, but could’ve been just the night. The sleep starts your experiencing are the worse, i get the head noises and jerks and yes followed by the sleep starts. Hang in there, I knows it’s tough.

      • The Cns must be slowed down somehow . I bet we are all type A people high strung in general. I never thought about it much when a buddy told me I was the most anxious person he knew . What about the rest of you ? Of course before the jerks ….

      • Same Mark, I was always on the go and would get anxious with general stuff, but luckily never in 44 years experienced panic attacks or anxiety issues as I must’ve suppressed them well enough with all the sport I did. Now after the jerks I’ve had the lot.

      • Same here I was 46 when they started . I think it catches up finally possibly . I do know things exacerbate it . When I took testosterone I dimint think anyone here knows how bad they can’t get. I don’t think that caused them but unleashed them . Once you have them it’s hard to put them back away . Vicious cycle . I was jerking so bad . Having exploding head syndrome every night hearing all kinds of noises that weren’t there . I was freaking out . Drinking alcohol makes them worse . No doubt . Our system is just fried basicically. I wonder how many others could be described as high strung ? I took klonopin last night slept much better no jerks . After having them for weeks . Your body also gets used to things medications . I believe it may be the case we all need some type of Med forever . At least there to stop them when they go nuts . Slow the Cns down

      • Anonymous said:

        I have to agree: I am a very high energy person who is also a chronic worrier. Not anxious enough to require med’s, but pretty high anxiety. When I first got the sleep jerks I was so anxious I worried ten pounds off! I was also worried because no one believed they were real; the neurologist was the first person who truly understood what I was going through. I still worry a lot, and when I do at night and twitching or insomnia takes over, medication to the rescue.

      • Maybe a common thread developing here . at least then we could point to anxiety . Actually I was worrying about a house sale when mine started also . I also am chronic worrier . And att hat time I was as stressed as ever in my life . Had just moved cities with house sale falling through .

      • Michelle said:

        I have always been a type B personality. Totally relaxed, calm, patient, quiet, introverted. BUT, that being said, I have had a huge amount of stressors in my life and being a type B I tend to stuff the stress down and not express it much.

        When all these problems first started, I didn’t have twitches, I had adrenaline rushes…every single time I tried to sleep, right at sleep onset. I have long thought I was in the early stages of adrenal fatigue but didn’t know exactly how to correct it. When the adrenaline rushes started last year I researched and tried taking supplements to correct this. Well I tried every supplement under the sun for adrenal fatigue and finally after months and months I found that taking licorice root made the adrenaline rushes go away. the relief lasted 1-2 months and then they came back. I had also worsening insomnia and was constantly feeling exhausted and wired at the same time.

        Then I went to a naturopath who put me on copper and the adrenaline rushes again went away and I suddenly had huge amounts of energy and felt fantastic. Then they came back, for a short time,. And then went away again, only to be replaced by twitching at sleep onset instead.

        I got to my wits end with the twitching and sleep deprivation and finally gave in to taking medication for the twitching. Now the twitching has gone away and is replaced with sleep starts and jolting awake shortly after falling asleep.

        With that said, I still kind of relate this all back to adrenal fatigue. Here’s a page that describes the stages of adrenal fatigue: http://adrenalfatiguesolution.com/stages-of-adrenal-fatigue/

        When your adrenals stop functioning your neurotransmitters and other hormones get all screwed up too. And these sleep jerks, twitches, sleep starts etc seem to be related to neurotransmitters.

        So I wonder if anyone here has been to a endocrinologist? I am planning to ask my doctor for a referral. In medical terms it’s actually called HYPOTHALAMIC-PITUITARY-ADRENAL AXIS DYSREGULATION. They don’t recognize the term adrenal fatigue in the medical community.

        I think overall, what could be causing this is huge amounts of stress throughout our lives that either doesn’t end (I worked 2 jobs for about 8 years, as a social worker, and also had a bunch of personal stressors in my life to deal with as well). Eventually our bodies just can’t keep up with all that stress. I could be way off…but I think it’s worth looking into. From everything I have read about cortisol, Norepinephrine/adrenaline, and how our neurotransmitters all work together, I think it’s a viable theory.

      • Hi Michelle,

        I agree with you. My take on these jerks is that they are triggered by (at minimum) the following: medication, artificial hormones, extreme stress/changes in adrenal functioning, heavy metal poisoning, sleep deprivation and sleep apnea. For me, my sleep problems were triggered by taking clonazepam and after brig off of it for 8 months, I am still suffering really bad with this condition. I’m an extreme case. I have done so much digging on why this medication takes so long to recover from. What I’ve found is that benzos down regulate GABA which then create chaos with the activating neurotransmitter, glutamate. Also, these drugs also disrupt hormones and soar every thee bodily function including heart rate. What meds have you taken for your jerks? Sounds like they are much worse now since taking meds? My theory is that people can’t truly heal from this crud until their brains reach homeostatis. If this condition started out of the blue from stress or something else, I believe that every avenue should be explored before resorting to meds, ad they can do further damage. I’ve read about people having a sudden clearance of symptoms by just getting their fillings out or meditating. Or, by stopping things like alcohol use or exercising before bed. There are SO many things that cause this crap! Anyway, I think you are on the right track to solving your issue. This crap is so debilitating and I wish we could all find our overnight cure. I see an endocrinologist in a month. I hope it’s not another dead end for me. My fear is that clonazepam had caused some kind of permanent upset in my body. I pray that I’ll get over this soon. I only sleep an average of 3-4 hours right now. Sometimes 0.

      • Hi Jessica, Sorry to hear about your withdrawl setback. I’m kind of going through the same thing right now with clonazepam. I’m very, very gradually trying to ease off as by now I’ve gotten more accustomed to using c-pap therapy. Suspect my insomnia with off and on head noise/jerks is at least partly the effects of withdrawal. I never took more than .5 mg but this year I took that amount for 3 wks straight to get more sleep while adjusting to various types of sleep apnea therapy. Felt good with consistent 6 hrs every night for awhile but now it’s averaging 5 hrs of fragmented sleep. Just like you, I never know what I’m going to get each night but it was like that for over 2 yrs prior to starting clonazepam. I also develop a headache after 3-4 nights of using the lesser .25 mg dose, then I return to .50 for 1 or 2 nights. Whatever it takes. Although some nights of taking .25 mg, I get longer sleep than on .50 mg. Go figure. Most likey I’ve now developed a tolerance. But although I’ve been prescribed up to 2 mg, I’ve refused to take more than the .5 mg and never take it during the day. All of last year, I took between .25 and .50 mg 2 to 3 nites a week, sometimes less, depending. By the way, I not a type A personality with high anxiety. I have been anxious in the past only when there’s something out of the ordinary going on like learning a new job or working under a difficult supervisor and sometimes that affected my sleep, but not for long. My abnormal sleep and chronic insomnia just showed up out of the blu, not caused by anxiety like doctors want to tell you. Hope you have luck with the endocrinologist.

      • Sylvia, sorry you are continuing to struggle. You determined that your jerks are caused by sleep apnea though, right? I had a sleep study and my breathing is perfect. I have no metal in my mouth, never had any real stress, etc… Definitely triggered by clonazepam for me. I hope that you can find your way off the junk without further troubles. Most people coming off the stuff don’t suffer with Hypnic jerks for even half the amount of time that I have. But it is common to have them in withdrawal.

      • How many people here drink to little water ? Also , has anyone tried more salt ?

      • Michelle said:

        Hi Mark,

        I definitely don’t drink enough water. Here’s something interesting…years ago when I was in my late teenage years I was told by a naturopath that my adrenals were not functioning properly and put on an adrenal cortex supplement. He also did muscle testing and found salt had a positive effect on my body and I needed more of it. He literally told me “Go ahead and put salt on everything, you need it”. Well I just googled it to see if there is a correlation between salt and adrenal function and found this:
        “For the person with depleted adrenals sunbathing on the beach can have devastating results. The salt loser that attempts to function on low salt does not understand why he feels faint, or is suddenly unable to function in the heat, or he feels his mind is cloudy and his energy gone. He may become very weak, tired, and depressed. Salt is needed for the electrical function of the heartbeat, to make hydrochloric acid in the stomach, and for the fluid around the cells. Sodium is the principal fluid outside of the cell (extra-cellular fluid) and as a result affects the proper function of all cells. The nerve cells of the brain, and consequently all of our emotions, are affected by the salt levels. Adding enough sodium chloride (salt) to the diet may be all that is needed for some patients.”

        I believe this twitching problem is somehow directly or indirectly related to adrenal function (or lack therof) so maybe supplementing some salt in the diet would help, as long as you don’t already have hypertension.

      • Brian. Have you ever thought we are dehydrated ?? Not drinking enough water . That would explain utination and twitches . I read on it all last night .

      • Hi Mark, that is a good point, one I had to address at one point because of where I live. I reside north of San Diego, and it is geographically the ‘high desert’. One can become dehydrated here very easily. I moved here twelve years ago from Wisconsin, where it wasn’t an issue, so I was unaware of the danger, and I work outside. Kraken care to stay hydrated, drinking a lot of water and Gaterade, but when my problem started I was dehydrated (because I was using a stimulant and wasn’t aware of my condition).
        In all honesty I don’t know, so I’ll have to note how much liquid I am consuming when s twitch cycle starts (I just finished one that lasted about a month). My last one came about when I was overworked, over stressed and not hydrating enough, so it could be.
        All the best to you,

      • Michelle said:

        Hey Jessica,

        I have been given gabapentin for the twitching and it actually worked wonders to stop the twitching very quickly. But as soon as the twitching stopped I started getting sleep starts where I’d having a feeling in my sleep like I was falling into a black hole and wake up with a jolt, heart pounding and absolutely terrified. Zopiclone seems to be helping with that sometimes, if I am very sleep deprived though zopiclone will only work if I have a shot of booze with it. I try not to take the zopiclone unless I get the weird feelings prior to sleep that tell me it will be one of those really bad sleeps (with the sleep starts), but yeah the gabapentin has helped the twitching…I don’t twitch at all as long as I am taking it. The good news is it’s also non addictive (as oopsed to the zopiclone which is why I try not to take it all the time)

        I also think heavy metals play a part at toxic levels. I have a lot of mercury fillings from when I was a kid and I have a dentist appointment coming up and plan to ask my dentist if I can get them removed. So after I have them removed I will try tapering off any meds and see if there is a difference.

        Sorry to hear about your bad experience with clonazepam. It’s crazy how something that helps one person can totally screw up another. I guess it all comes down to our bodies own sensitivities and chemistry.

        I did a lot of research on gaba and found out about the connection with glutamate as well. One thing that counters glutamate is L-Glutamine. I posted about all this on the food and drugs page on this blog. Gaba is produced by L-glutamine (a completely different NT/Amino Acid that does the opposite of what Glutamate does) so perhaps supplementation with L-Glutamine could help with your twitching. The gabapentin I take has an effect on Gaba somehow but doctor’s really have no idea how. The mechanism of action is unknown, but they believe the primary effect is on Gaba which is why it is named gabapentin. For me, I have no twitches as long as I take it, but I do still have sleep starts, but not every night, mostly when I am over tired or sleep deprived (I work night shift so flipping from days on weekends to nights during the week when I’m working definitely has an effect on this that other people might not have as much trouble with). I actually am getting anywhere from 8-10 hours of sleep again, but I still want to find out the cause of this and eliminate the twitches and sleep starts altogether because I prefer not to be on medication my whole life. I took NO medications prior to this. I take L-glutamine now and also supplement with magnesium taurate which is a combo of magnesium and taurine. Taurine also helps to increase glutamine levels and prevent the breakdown of Gaba. So maybe by chance this info will help you in some way.

        I hope you are able to figure it all out. It sounds like you’ve done a ton of research as well so hopefully you’ll get there!

      • Michelle,

        You are fortunate that gabapentin works well for you. I took it for a few months but it did nothing to get me to fall asleep. I had to take seroquel with it. I was told to take the gabapentin to prevent seizures that the clonazepam withdrawal might cause. Anyway, nothing worked to get me to sleep at the beginning of withdrawal except for seroquel… And even then it was only a few hours of unrestful sleep. At month 4 of withdrawal, I switched to mirtazpine and that worked for a few months. When it stopped working in month 6, I quit everything and miraculously I started sleeping on my own and getting up to 6 hours some nights. But, for the last 4 weeks, I’ve been miserable again and nothing really works. Last night I had relentless jerks so I took a seroquel for the first time in months. I got 3 hours of sleep on it. Yes, I’m a very tough case! Seroquel should knock out a horse as its known to knock some people out for an entire day. I really wish I had some answers for myself as I can’t live in withdrawal like this much longer without losing it.
        When did this crud start for you? do you ever have sleepless nights? do you get muscle spasms during the day? i have every known sleep start… spasms, electrical jolts, contractions, auditory, flashing lights, etc. the worst of it is the jolts and jerks that make my heart race… very uncomfortable! Thanks for the l-glutamine tip… I’ll look into it.

      • My gosh, have you looked up exploding head syndrome?

      • Yes, I have it. Not my worst symptom though. Actually, I would give my right leg if I could just have that symptom.

      • Michelle said:

        Also here’s an article about it as well that describes what it is and how to begin correcting it. I still think a visit to an endrocrinologist would be beneficial to find out for sure though http://nbwellness.com/stress-recovery/

        And CK thanks for your encouragement. I went to the neurologist today and he spent 1.5 hours talking to me, testing my reflexes, my response to touch, balance etc. He refused to do an MRI and basically related everything to my low thyroid. Very frustrating. He then told me he could also order a clinical sleep study which at least made me feel better about the lack of MRI. But then he said “We’ll have to focus on your thyroid first and then possibly a sleep study could be ordered after”. I started to cry. I asked if he had any idea what it’s like to live with something that disrupts your life dramatically on an everyday basis. I asked if he had any idea what it’s like not to sleep every day, to be exhausted but unable to sleep. To have sensations of electricity pulsaing through your brain and body causing twitching and spasms and terrifying jolts from your sleep, and then I literally begged him to order the sleep study NOW instead of making me wait until my thyroid has supposedly been “perfectly balanced” which would take months. He finally gave in and agreed. But seriously I am so tired of these doctors who don’t really give a shit cuz they aren’t dealing with it. When I asked about the MRI he told me it wasn’t necessary because he already “looked at my brain” as that’s what he was doing in talking to me for the last hour. WTF! I didn’t know neurologists these days have bionic vision.

  10. Anonymous said:

    Is it Brian Martin that started the blog?

  11. Brian Martin said:

    No, the man who can’t sleep started it, but I believe I discovered him shortly after he started it.

    • Anyone on here from Australia?

    • Anonymous said:

      I need to reach him badly. Any ideas?.

    • Hi Brian ,

      I’m currently taking Zopiclone as I think it’s a better option than clonazepam, Ativan, or Valium, my question is.. how long did you take it? , what dosage? and did u get any bad withdrawal symptoms from it? It’s supposedly the baby of the lot..
      Appreciate any advice, and do hope you are continuing to do well. Cheers Con

      • It has always worked better for me than everything. 3 mG

      • Thanks for the reply. How long were you on it? If seems to get bad posts on the forums though? Did you get any withdrawals coming of it?

      • I’m talking about Lunesta FYI

      • HI Mark

        I believe they are very similar. Have you been taking it for long?

      • On half a tablet 3.75mg. I only get 3hrs or so that’s it.

      • I am doing what my neurologist calls polytherapy. That is I take several different medications so that I don’t get addicted to one. I still use zopiclone, and unfortunately it takes twice the amount to help me, buts it’s better than just taking clonazepam. I don’t advocate this, but it works for me. I get about six hours of sleep that way. I hope for you all the best!

      • Thanks Brian, How much are you taking? 3.75mg usually gets me 3 maybe 4hrs sleep at times. I try to avoid going up more for obvious reasons. I started getting some intedosing withdrawal and shortness of breath after about 3 months on and of it, so stopped it and will monitor. Do you have success with doxxylamine succincte? . We have it here in Oz?
        . Jerks have settled just cannot get a good sleep even with meds. I am on a low dosage mirtazapine and that is hit and miss ranging from 2-4hrs. I know you mentioned you were only getting 3.5hrs at one point .

      • I do not recommend this, but it takes me two 7.5 mg tablets to get about six hours of sleep. I know that sounds high, but I have developed a tolerance to sleep meds. The only ones the continue to consistently knock me out are benzos, and I only take them 1-2 times a week. In fact, I take ezopiclone one night, then melatonin and Benadryl the next, then clonazepam, Mel and Ben, then zopiclone, Mel and Ben, then etizolam. If I am on an ‘off’ cycle (my twitching cycles in and out) I stick to the Mel and Ben and get about 5.5 hours to 6.5 a night, sometimes less. When I’m in a twitch cycle I do what I previously described. The best sleep I get is with clonazepam and etizolam, but the ezop and zop work ok if I take double doses. I also must add I have insomnia issues, I’ve had them all my life since I was a kid. I slept fine in my 20’s thanks to weed and booze but when I quit they came back. Marijuana still helps sometimes, but other times makes it worse. Alcohal does not work anymore. I don’t have any breathing issues, but of course we are all different. When my twitches go, they are gone for up to a month, but they always come back. I was twitching like mad last night until the etizolam kicked in and shut it down; I wouldn’t have slept on zopiclone I doubt. I needed an antisiezure type med. I’ve taken mirtazapine but it doesn’t do much, makes me feel spaced out the next day. Trazadone works better, and I take that too sometimes. Since this started I’ve hoarded pills; I have hundreds at my disposal. I found them online, sites from India, Japan, China…I don’t have prescriptions for any of these! You can get anything online if you dig. Just be careful and only use what you need. I got addicted to the benzos and withdrawal sucks.
        Take care, I wish you the best!

      • Wow. Thanks Brian, alot of information there. I will be doing my best to see if I can still get away with as little as I can. My next step is to try Keppra but I’m not sure if people have had much luck with it. I believe some have. I forgot to mention I tried sifrol for 3 weeks which didn’t do much either. Lets keep on praying, that’s all we can do.

      • Hi Ck,
        Sorry for the information overload! Keppra could be promising, and it’s no surprise Sifrol didn’t work; I was prescribed ropinerole (it’s for Parkinson’s and restless leg) and it didn’t work for me. So you don’t think I’m a walking pharmacy, I was prescribed the majority of these meds and when I needed more I saved money on Doctor visits by buying them online. Neurologist bills are not cheap, even with health insurance, and I was required to see him everytime I needed a refill or wanted to try something else. In other words, I took matters into my own hands. People don’t understand how serious this is and I wanted control over my care.

        I hope you find something that works. Take care

      • Thanks Brian, All the information is great and I do appreciate it. I know exactly what you mean. I’ve had days and nights crying over how I’ll get through this long term. Taking matters in your own hands sometimes is what needs to be done. Drs can only do so much and because it’s rare, they look at us in a funny way also. Here in Oz the medical system is much better and things are available through a Dr. I’m lucky I have one that listens. It just sux that we have to go through this unnecessary crap when we should be enjoying life. I just tried to take a nap after only 2 solid hrs last night and no luck. It’s probably my 50th attempt and another fail… So unfair… Keep us updated, and thanks again

      • Hi Brian,
        Have you or anyone else used L-tryptophan for sleep?

  12. I’ll send you an email in a minute or two. I hope everything is well with everyone.

    • To ttmwcs, how much clonazepam are you on these days? Has Keppra helped? as I am looking at getting it from my Dr. Please, please let us know..

  13. Hi everyone,

    I posted on here several months ago when I started having these jerks. I had them for about 5 months straight, every night, and usually only managed to get 3-5 hours of sleep a night (and sometimes none at all). I wasn’t able to nap, either. I tried several things – ambien, sonata, trazodone, natural calm, magnesium/calcium supplements, melatonin, etc. – but didn’t have any luck. I saw several doctors who didn’t seem to know what I was talking about and could only suggest that it could be stress-related. I felt like I was stuck in a nightmare. I eventually started getting occasional jerks and muscle twitches during the day, too. In doing my own research, I found out that b12 and iron deficiency are common in vegans (I’ve been mostly vegan for about 6-7 years) so I asked my doctor to check my levels. My b12 came back low and my iron was at the lowest end of the normal spectrum. So I started taking a women’s multivitamin w/ iron and a b12 supplement (1000 micrograms/day) about 3 months ago. I didn’t see much improvement for the first month or so, but I’ve been gradually getting better since about a month ago. I don’t know if it’s the b12, iron, or a combination of both. I still have occasional jerks but I’m back to getting 7-8 hours of sleep on most nights. My jerks also used to be significantly worse on days that I exercised but I don’t seem have that problem anymore.

    I know that many of you have other causes for your jerks that are unrelated to vitamin/mineral deficiencies, and many of you have already tried b vitamins, but I just wanted to share this in case it could help anyone.

    I’m glad this blog exists for people to share their experiences and I sincerely hope that everyone suffering from this can find a solution soon.

    • Thanks for sharing! I agree that iron seems to have something to do with it. I haven’t experienced the Vitamin-B connection, but maybe I’ll give it another look. I also sleep much worse on nights I exercise and sweat a lot. Thanks, again! I’m happy things are getting better!

    • Sb,

      Thanks for posting. Before you started supplementing, did you feel like the jerks were getting any better compared to when they started? Any auditory sleep starts? I’ve taken b12 and iron with no luck. So strange that this comdition is triggered by such a wide variety of things. It’s been 10 months with this and waiting for a miracle!

      • Jessica, I recommend you get an overnite sleep study. I recently had one and my sleep doctor told me the sleep starts (jerks, auditory, snorting awake) were caused by my sleep apnea. I went a along time of suffering with this before finding out that it’s cause by my tongue obstructing my airway.

  14. im very happy to hear this good news about your jerks
    i posted a lot in this blog, trying to help out as im a victim or i was in fact but now i sleep well thanks to god
    i told you before that it came to me due to working out at night lifting heavy or extremely heavy wieghts i was trying to bulk at 1-2 Am 3-4 days a week and ofc i used to go home at 3 am after taking supplements including ginseng/ caffeine / L-carnitine without getting any minerals /vitamins i was just focusing on much proteins for the rest of the day and i kept that stupid routine as far as i didnt have any problems i thought that im a tough person and was happy to go and workout after 12 hrs of work without having any problem with that, but one night i was hit by that curse, and i woke up, i stopped exercise completely and i started getting the foods that i was cutting to get leaner like Molases which is rich in iron and magnesium and i was unlucky coz sleep deprivation at that time triggered my panic attacks so i started my paroxetine/ alprazolam course i cant tell if they helped or miniral re-balance helped more but i was sure that working out was the thing that triggered it coz the day after i started having that jerks i had no workout and i slept well, but when i worked out the day after i had it and it didnt go away since then
    so yeah dont exercise at night, do your workout before 12PM if u can, and before bed time try to relax watching something funny while lying on bed like a comedy show or something and eat a snack before sleep by 2hrs or so containing magnesium, iron and potasium like bananas or molases or so
    and i cant tell the time your body need to completely stop this jerks for me they were gone suddenly as they started suddenly and dont meditate coz all these practices worsens it
    try to go out of home to gardens and pretty nature views like embracing nature, coz these jerks results from tons of stress from work and life that puts u in physical/ mental stress on your body
    when i was on paxil for the first 2 weeks i went to Hurghada in Egypt and spent a week there when the jerks started to fade away gradually when i came back home i was shocked after sleeping the first night 100% jerk free and im fine since then
    so try to detach from your daily routine coz it may be one or the main reason for it

    • Thanks for coming back and updating us on your progress, that really helps a lot. I’m so glad your jerks went away for you and never returned! Thank you for all of the tips also, that also helps a lot! How long have you been jerk free and how long did you take alprazolam and paroxetine for before the jerks went away completely for you? Did the jerks stop for you before or after you stopped taking the medications and did you take both medications at the same time?

      • Anonymous said:

        sry for being away from the blog all that time,
        now while im talkin to you its about approximately 9 months jerk free, although i get it once every now and then but when it happens more than 3 times at the same night i take atarax “hydroxyzine” at dose 20mg and after then i sleep like baby and hardly wake up next day, now im alprazolam/ paroxetine free and im done with alprazolam long time ago, i used it for about 2 and half month, but i kept taking paroxetine for about 6 months thats when i forgot the jerks at all, u know the most important part of the cure is to completely forget the jerks, and this is something that u cant achieve unless u really shut them down,its like a gate to hell that needs to be shut down
        it stopped suddenly as it came suddenly, i was sleeping with alprazolam for 2.5 months although it takes like an hour to fall asleep and ofc during that hour i get many many jerks all over my body, but suddenly i wake up and say, cool i slept 8 hours, i cant remember the second i felt asleep but it happened, believe me every time i woke up i was happier than ever in my life, coz at a certain stage of this strange curse i was preparing myself mentally that its god’s will and sooner or later im going to die, and no kidding i wasnt sleeping at all, but thank god its all gone now
        the first night i tried to sleep without alprazolam, i was returning back to my home after a week off, that i spent with my family at Hurgada Egypt trying to relax and forget this misery
        i came back home after a 3-4 hours of travel and i was tired, once i reached my bed i wasnt thinking about anything, nither sleep nor alprazolam i just slept like a baby without any sleep aids and when i woke up i was like ” WTF HAS JUST HAPPENED…………… OMG I SLEPT NATURALLY,” without a single jerk
        although the day before i slept like usual with quarter a pill of alprazolam 0.5, as i was tapering off and although i sleep with alprazolam i get several jerks before i sleep.
        ask me if u need any explanation, and remember that ure suffering mainly from hypnic jerk but either u admit it or not, once u start to jerk, a parallel health condition starts which is anxiety and depression as result of sleep deprivation that will lead to low serotonin levels producing anxiety and depression ofc its mild condition but it will keep u away from sleep even more than the jerk itself and ull get stuck in this cycle
        last to mention, i think that getting away from work and home helped me a lot, seeing new places and new people and having fun is something that most of the “jerkers” really miss

        to summer it up:
        short answers to your questions
        How long have you been jerk free? 9 months or more
        how long did you take alprazolam? 2.5 months
        and paroxetine? about 6 months both medications started together then stopped alpra and kept taking paro
        before the jerks went away completely for you? after stopping alprazolam the jerks stopped completely but paroxetine needs to be continued for longer time and takes longer tapering period than alprazolam
        Did the jerks stop for you before or after you stopped taking the medications? previously answered it

      • What does hydroxy zine do? Is it addictive?

      • Yes ck please tell us more about that drug

      • Not me Mark, it’s Anonymous who posted the meds, I’m hoping to find out also.

      • Thanks for coming back to us with your success story! So happy for you. Man, if I had one it would be comparable to winning a massive lottery. Anyway, do you believe the antidepressant played a big role in getting better? My intense jerks were caused by benzodiazepines and I’m sure that my serotonin is very low as a result. I tried one with bad results and thinking of trying another. Mine are relentless. I didn’t sleep for one minute last night as they continued the entire night. It’s been a year of misery for me and I hope I come out of this like you have. Do you know what triggered yours?

  15. i forgot to mention that u need vit. B3 and B5 in addition to magnesium and calcium and potassium and stick to these for as long as it takes it wont do a magic trick between a night and a day

  16. one last thing that most people are embarrassed to talk about, there are many practices that can elevate your adrenaline at night thats gonna worsen the jerks ofc, like masturbation / action video games/ any muscular activity so try to stay away from these coz they gonna worsen it

  17. Has anyone had any success with baclofen and Keppra?

  18. I have exact level of problem the blog described. The jolt comes from my lower back muscle everytime i am about to fall asleep. It is at the point where that muscle area relax. I have back injury in the past and bone spurs grow around it naturally. I suspect everytime my back muscle relax when falling into sleep, it touches the pointed spurs and i got jolted. I did fall asleep finally maybe due to tiredness.

  19. Hi, I’ve had trouble with restless fragmented sleep with vivid dream and insomnia for 3-1/2 yrs. Sleep cycles were different every night and sometimes just out of the blue, I would get a break with normal sleep, it was very random. About 15 mos. ago, a neurologist put me on light dose of clonazopam because I started getting restless legs, accompanied by what he called nocturnal myoclonic jerks. Along with the jerks (and sometimes right in unison), I would hear popping or snapping noises. I also have tinnitis and buzzing in my ears, mostly at night.
    Clonazopam helped me get to sleep and stay asleep but since it’s addicting, I continued to research for the root cause of my sleep disorders. Finally last month a neurology NP sent me to a sleep clinic where I was diagnosed with severe sleep apnea while on my back, and mild sleep apnea while on my side. Sleep doctor said sleep apnea was causing my sleep disorders. So those of you who don’t know the cause of your chronic insomnia and other sleep disorders, I recommend getting an overnite sleep study. Right now I’m trying out a slumberbump belt, recommended by the sleep doctor, it keeps me off my back. I most likely will end up using a c-pap machine to better treat the apnea, since I don’t like being restricted to my side all night. By the way, I am not overweight and never woke up gasping for air. I’m 5’3″ and weigh only 115 lbs. Anybody could have a sleep breathing disorder. Go to a sleep lab for help.

    • Caligirl said:

      Thank you so much for posting your story. I actually had a sleep study done and they also told me my my jerks are caused by sleep apnea. I’m pretty small, like yourself, and I was surprised by the diagnosis. I now have a cpap machine, but I still have jerks when I use it. It’s a Philips Respironics remstar auto A-flex system one. Before I was able to get my own machine, I borrowed my Dad’s for a night. I only used it for a few hours, and with it, I had no jerks. His is the older version of the Philips respironics remstar. So, I often wonder if the reason my cpap doesn’t get rod of the jerks for me has something to do with the fact that it starts out at a lower pressure, and then automatically adjusts itself to a higher pressure after the apneas start. My Dad’s cpap was also set at a higher pressure than I needed (an 8 instead of a 7). I never sleep on my back, only my side or stomach. So, if you do decide to look into getting a cpap and you find one that gets rid of your jerks, please, please let me know which cpap you are using, I am desperate to get rid of these awful jerks! I’m glad you were finally able to get a diagnosis after all that time and maybe you can finally get off of your medication.

      • Hi Caligirl, thanks for the reply. Good to know that you were told the same thing about the jerking by a sleep clinic. Not sure how this restrictive side sleeping is going to work for me. At age 61 I’m probably quite a bit older than most of you here, so lack of hormones in post menopause could be playing a part in my breathing disorder (or so I’ve read) and always shifting to my back in my sleep, I never used to do that as a younger person. My sleep doctor wants me to try the slumberbump belt for 6 weeks, then I see him again. It’s been 2 wks and I am feeling more clear headed by being kept on my side. No more falling asleep in the recliner in front of the TV even though that helped on some nites for me to bypass the jerking and get a good start on sleep without needing clonazopam. Then I could sleepily get to bed for another fragmented 3-4 hrs, sometimes with jerking starting up again around 3 or 4 in the morning then dozing off again if I was lucky. Averaged 4-5 hrs a nite and seldom felt rested. On some nites I had to take my 0.5 mg of clonazopam to bypass the jerks when I couldn’t do it on my own and that helped me maintain sleep. I didn’t always feel refreshed the next day though, even with more sleep. Unrefreshing sleep is another sign of having sleep apnea. Even with wearing the slumberbump, my husband says I still snore loud at times and move across the bed. So I will most likely need the c-pap machine. I see there’s some that are made for women and I’m going to try and get a state of the art machine, even if I must pay out of pocket. I don’t know much about these machines but I’ve read many reviews and for some people, it takes months to really make a difference in how they feel. Some people say they notice a difference right away or within a week or two and others say their sleep improves gradually over several months. So maybe your jerks will gradually subside. Everybody is different. Or you could go back in for another sleep study and get some help adjusting your c-pap machine. I’ve seen where some people went through trying 3 or 4 different types of machines before finding the right one. Some say they had the face mask too tight, others didn’t have the right air pressure or it was the wrong size for their face. Apparently, sleep technicians can help with that. Also, for me the jerking gets worse if I’m feeling stressed, upset about something that happened during the day. Unwinding and relaxing before trying to sleep can help. I’ve also seen where yoga can help. I now read a book of bible verses instead of watching TV or being on the computer at night. Anything calming you can think of might help. During the day I also have a cup of sliced fresh ginger in hot water and squeeze in half a lemon. Then if you can tolerate it, sprinkle in a little cayenne pepper spice. Somebody on a hypnic jerk site recommended that and it has helped lessen the jerking for me most of the time.

      • Caligirl said:

        Thanks Sylvia, for all the advice! I keep meaning to try that cayenne pepper tea, because I read about that also, but I always forget! Ginger is great too, because sleep apnea can be caused by low serotonin and ginger binds to the serotonin receptors or something like that. I was taking a low dose of trazodone, and it seemed like it helped decrease the amount of jerks. Low serotonin can cause sleep apnea, and antidepressants could possibly be used as an effective treatment in the future, from what I have read, and trazodone helps raise the levels of serotonin, so this is maybe why it seemed to help. The hospital already monitored my sleep for a week while using the cpap, and they said that it was indeed helping my sleep apnea. They also said that maybe the jerks would get better over time if I kept using it. I also traded in my mask for a smaller size and the technician helped me try it on. I do have trouble staying asleep whole using the cpap, not sure why, so that deters me from using it more often. I have been using it off and on, more off than on, for the last four months or so. So, maybe I just need to be better about using it to get rid of these jerks, not sure. I have also found that stress worsens the jerking, and that doing something that relaxes me can help. Do you also have any muscle twitches during the day? I started getting these shortly after the night time jerks started. Did clonazepam get rid of your jerks completely? It’s funny that benzos have helped you and I since it should relax the muscles and worsen sleep apnea from what I have read. Maybe it helps us not to startle so badly from the apnea episodes. Good luck with your apnea treatments and let me know how things go!

      • Clonazopam is a tranquilizer benzo that forces you to sleep by bypassing your normal sleep cycle. That’s why it works and it works better than the sleeping pills like Ambien and Lunesta (which are very close to the same thing with patients being told that they are “safer”). It varies how much the clonazopam helps from night to night as the sleep starts and insomnia varies with me from nite to nite. And that’s with taking it intermittently to lessen the degree of dependence. Lunesta helped me for awhile three yrs ago but then started giving me nightmares. Then I was also prescribed Trazadone which sometimes helped and sometimes not at all. It also gave me a stuffy nose so I didn’t use it for long. Guess I could ask my sleep doctor about it and give it another try since it’s not supposed to be as addicting. The neurologist who prescribed my clonazopam over a yr ago said it would help relieve my restless legs and myoclonic jerks. That it did and I’ve tried to use it sparingly, 1/2 mg 2-3 times a week, as needed to stop the jerking and snapping head noise that goes right along with the jerking. The head noise sometimes blends in with my tinnitis and can go on for hours. Had it alot last night from trying to taper off clonazopam I suppose. I took the half mg pill for 2 wks straight while trying to adjust to slumberbump belt. Not easy to suddenly restrict my sleep position to only my side so I took one pill every night to help. Felt real good using it for consecutive nites like that but now it’s payback time while trying to cut back. Got only 4-1/2 hrs of sleep on 1/4 mg when I’d gotten used to 6 or 6-1/2 hrs for the last 2 wks. This tells me so far that the slumberbump is not helping to control my breathing disorder, especially since my husband told me I’m snoring loud and moving around some of the time while on my side, not much different from being on my back. So I plan to call the sleep clinic this wk and try moving up my followup appt. Don’t want to waste more time trying this slumberbelt, would rather be trying the c-pap machine. Most likely will lean on clonazopam while waiting for c-pap to help me breathe normal. A neurology NP told me I would need to take a full mg while adjusting to c-pap but I don’t plan on going that high. I don’t believe that the jerking/sleep starts are a direct cause of sleep apnea but I do believe the apnea causes some people to get chronic insomnia after they’ve had it awhile. Think I had sleep apnea for yrs before the insomnia started, then the jerking, restless legs, etc. started 2 yrs after the insomnia started. It seems to be an offshoot sleep disorder where I’m going directly into REM sleep dreaming and I think longtime sleep deprivation caused it by messing up the nervous system. Others on here have said that same thing, they keep going into REM sleep and jerk awake repetitively. What a pain. That’s not the normal sleep cycle. As we all know, REM sleep should come later in the cycle, not right away. I’ve caught on that many doctors just give you an answer to avoid taking the time to give you a full explanation. What do you think? Yes, I have had the twitching in my legs but not for a long time now. That could have been a mineral deficiency. I since saw a naturopath doctor who tried me on bioidentical hormones and she also prescribed iron for my low normal ferritin and also magnesium and vitamin d. In Nov. my levels were normal, vitamin d at 38 and I’m getting alittle sun lately to get it up higher. My magnesium level is at 2.1, also normal range. I eat mostly whole foods, low sugar foods but still must include carbs to maintain weight. Good luck to you with balancing your clonazopam with the jerks and c-pap. May I ask what dose you take and do you take it every nite as they advise? Keep trying with the c-pap. I think achieving some longer sleep cycles is the key to killing those sleep starts!

      • Jessica said:


        You say that you had insomnia 2 years prior to the jerking? Were you using sleeping pills during that time? Just curious because almost all sleeping pills, even Benadryl, have been linked to these jerks at night. I don’t doubt that your sleep apnea has played a role, but I would investigate the role that these pills have played in your condition if you used them prior to the jerks starting.

      • During that time I mostly toughed it out, trying to improve my diet, more walking, meditation, and lots of praying. Doctors and friends would encourage me to “just take something”, don’t suffer. But no, I didn’t take benedryl or anything similar unless I had a virus with stuffy nose which wasn’t often. Although I know when I did take that, it helped me sleep more. I also tried melatonin as advised by doctors but finally one doctor tested my melatonin and cortisol levels (saliva test) and they were both normal.
        Melatonin and the other “natural” stuff like 5-htp can make me sleep longer but I wake up feeling more unrefreshed. Like I was telling Caligirl, I tried Lunesta for awhile, maybe for a month but it doesn’t work that well and can give me wild dreams. I tried Trazadone off and on but none of this stuff is a cure, just a band aid fix. I agree with you, doctors should have known to send me to a sleep clinic, especially the neurologist. I complained over and over. Apparently the older doctors (most I saw were over 50) don’t know that sleep apnea can cause chronic insomnia. And since it’s gone on for this long, it may be harder to fix with c-pap, but I also need to think positive.

      • Caligirl said:

        Here’s a great article about sleep apnea and how vitamin D and B deficiencies cause sleep problems. drgominak.com/vitamin-d-hormone.html

      • Caligirl said:

        The article also talks about how vitamin D deficiency causes inappropriate movements during sleep, so I think it is worth reading!

      • Caligirl said:

        I also go straight into REM sleep. It does seem that a lot of other people who have the jerks, say that they do this also. The sleep lab told me that I was having mostly REM sleep. From what I have read there are three things can cause too much REM sleep. They are stress, sleep deprivation, and depression. All of the jerks started for me after I stopped taking 5-htp. So, for me, I think my serotonin levels suddenly dropped and never went back up, and this caused my body to start jerking. Yesterday, I took 400 IU of vitamin D from Carlson Labs, and I had only tiny jerks after I woke myself up snoring. They also have safflower oil in them, which I believe raises serotonin, so it could be the safflower that helped. I’ve taken these same vitamin D pills before and they seemed to help, in the beginning of all of this. I’m not taking clonazepam, but I did take ativan for three months, which seemed to help some. I recently stopped taking trazodone, but taking 12.5 mgs of it did help me sleep the night through while using the cpap. I wanted to get off of medication to see if my body would somehow heal on it’s own, and the last three nights have been decent. I got 7 to 8 hours each night, after having a worse than usual week after stopping the trazodone. Recently, I was thinking back to when my sleep problems began (I became a very light sleeper and was easily awakened by noises) and I realized that it all started six years ago after going off of the birth control pill, so now I wonder if hormones are playing a role in my sleep problems. I also read that certain hormones can help with sleep apnea, so maybe that has something to do with it as well. I think starting your cpap therapy is a good idea. I noticed I can get by with less sleep while using it even for just a night, and it helps my daily headaches as well. I also have a trembling feeling in my legs that started about three months back. I think sleep apnea could be causing our nervous systems to be out of whack somehow. Good luck with your cpap! I hope it helps you and let me know how it goes!

      • Caligirl said:

        One more thing I forgot to mention. My Mom suffers from chronic tinnitus and she takes ginkgo biloba for it and it helps her. I also read that ginkgo biloba can be good for restless legs, I think because it increases blood flow. It is also touted to help anxiety and I think I read that it could even help with depression. It also seems like there are others that are suffering from tinnitus as well as the jerks, so maybe there is a link. I think my Mom said the doctor told her tinnitus can be caused by anxiety. I think I read recently that benzos can also cause tinnitus, so you may want to look into that. Good luck with your benzo tapering and I hope things get better for you!

      • Thank you Caligirl and I’m glad you’re doing so much better with c-pap! Just took some persistance. I’ll keep the trazadone in mind and might ask my sleep doc for a prescription. See what he says about it. From your reminder I took some vitamin d today, mine has probably dropped some over the winter. I had tinnitis and buzzing off and on in both ears prior to taking clonazopam so can’t blame that. I’ve also had alittle vertigo and sleep paralysis, very seldom though but I think that also stems from abnormal sleep. Tinnitis is also just another aging thing and I have an appt. to see an ear, nose and throat doctor next month. This particular ENT doctor also specializes in sleep apnea so I’ll be happy to take my sleep report for his review and get another opinion.

      • Caligirl said:

        Sylvia, My Mom also deals with vertigo. She has to sleep partially upright and with a light on or she’ll wake up dizzy during the night. Her ears used to ring a lot at night and prevented her from sleeping until she started taking ginkgo biloba. That pretty much gets rid of the ringing for her as far as I know. I stopped taking trazodone because I wanted to be off medication, and I had trouble sleeping with the cpap again, so I haven’t used it in awhile. I should probably try it again at some point and see how it goes. As far as the trazodone, it really helped me fall right back to sleep after each jerk and I was even able to nap most days. So, I am missing it a bit, but now that I have gone through most of the withdrawals, it probably doesn’t make sense to go back on it right now. But it was the one medication that really helped me get through the most difficult part of this and I don’t know what I would have done without it. I’ve had sleep paralysis also, and I don’t know if that is normal or not either.

  20. Jessica said:


    Thanks for your concern. It’s nice to have a forum to share info with each other. I had a sleep study done in November. It showed that I breath normally but that I woke up 21 times. That night I took mirtazipine after I jerked for 30 minutes. I fell asleep after that and got a total of 6 scattered hours. Anyway, my problem is most definitely a result of my use of clonazepam. I am 6 months off of it and still suffering very bad, but better than I was at the beginning of withdrawal. I have been med free for 5 days and I’m getting between 3-5 broken hours. Quite a victory for me compared to where I was. I still have a long ways to go and get a lot of my support from a few members here and and some people on benzobuddies.org. I’ve been in touch with approximately 10 people on that forum who have this, ranging from mild to severe. It seems that the severe cases like me take over a year to be at least 90% better. That is where I get my hope from- their stories and recovery. I’m glad that you found what was causing this for you. It is such a horrible condition. Sleep deprivation had ruined all that was so good in my life. I still have my family though and that’s what matters most. I hope to be free of this in the next year and back to the way things once were. I urge anyone who reads this to really reconsider a benzo to treat this. If you have a mild case, ask yourself this… Is it worth it to take a drug that has caused so many people to suffer for months and years on end? Especially when it is only recommended for short term use and tolerance builds quickly for some people? For those who are just starting to get this condition, please realize that most doctors will likely recommend a benzo when other methods may work… Trazodone, mirtazipine, Magnesium, etc. Yes, Sylvia, you are right… People need to be tested for sleep apnea before getting on drugs! If they don’t suspect a drug withdrawal like mine, I think that should be the first step along with a blood test. Many find immediate relief by supplementing with magnesium. From my experience, I would only give my patient a benzo for this if it was completely debilitating and without a known cause. Take care!

    • Hi Jessica, So sorry you’re suffering this much from clonazopam withdrawl. I guess with reading on benzobuddies you knew how to very gradually taper off. Everybody is different. I’ve seen postings by some people who say they step right off from it but maybe they weren’t taking it for sleep or nerve disorders. Some take it to cope with anxiety. To seek help, I take it you were having trouble with insomnia to begin with? Did they test your thyroid, iron AND ferritin levels? There’s so many root causes for insomnia. Some get it from celiac disease which can cause mineral and/or vitamin b12 deficiency. I’ve been tested for all that. Oh yeah, and then there’s hormone imbalance. I remember having off and on insomnia even in my late 20’s and have since found out from all my recent reading that hormone imbalance (estrogen dominance) can cause that in younger and middle aged women. When I started on birth control pills at age 29, my insomnia disappeared within a month or so, they must have balanced my hormones. Glad you’re getting more sleep on your own. You might want to see a GYN doctor.

      • Jessica Hanson said:


        I was having minor insomnia for a few weeks when my baby was waking up every 2 hours. It escalated after she was sick for a week and I was staying up around the clock to monitor her. My insomnia was situational and made much worse by the drugs. I was an excellent sleeper up until that point.

        Sorry to ask again, but did you take any sleeping pills before your jerks started? Lunesta or anything like that?

        Sent from my iPhone

      • Jessica said:


        I was having minor insomnia for a few weeks when my baby was waking up every 2 hours. It escalated after she was sick for a week and I was staying up around the clock to monitor her. My insomnia was situational and made much worse by the drugs. I was an excellent sleeper up until that point.

        Sorry to ask again, but did you take any sleeping pills before your jerks started? Lunesta or anything like that?

  21. During that time I mostly toughed it out, trying to improve my diet, more walking, meditation, and lots of praying. Doctors and friends would encourage me to “just take something”, don’t suffer. But no, I didn’t take benedryl or anything similar unless I had a virus with stuffy nose which wasn’t often. Although I know when I did take that, it helped me sleep more. I also tried melatonin as advised by doctors but finally one doctor tested my melatonin and cortisol levels (saliva test) and they were both normal.

    Melatonin and the other “natural” stuff like 5-htp can make me sleep longer but I wake up feeling more unrefreshed. Like I was telling Caligirl, I tried Lunesta for awhile,
    maybe for a month but it doesn’t work that well and can give me wild dreams. I tried Trazadone off and on but none of this stuff is a cure, just a band aid fix. Didn’t take any of it long enough to cause problems and the jerking started much later on. That’s when I finally decided to see a neurologist. I agree with you, doctors should have known to send me to a sleep clinic, especially the neurologist. I complained over and over. Maybe it’s the expense of a sleep clinic? Apparently the older doctors (most I saw were over 50) don’t know that sleep apnea can cause chronic insomnia? And since it’s gone on for this long, it may be harder to fix with c-pap, but I also need to think positive.

  22. A new baby? Just maybe that threw off your hormones, the lingering insomnia may have been more than just situational stress. Think about getting your hormones tested, it’s just a simple blood test for estrogen and progesterone. May I ask how long you took the clonazopam and at what dose?

    • Jessica said:


      Thanks for answering my question. I always find it important to gather as much information as I can about people like me and their history with prescription drugs.

      When I was put on clonazepam I took it for 6 weeks, alternating days with trazodone. I quit both without many issues, perhaps some lingering anxiety about sleep that wasn’t there before. I powered through 2 more months without taking any drugs, but then my parents moved in for a month when they sold thier house. That was the beginning of my problems. My dad is a night owl and paced the house all night. I’ve been a semi-light sleeper all of my life and had some anxiety about him making noises So I stupidly started taking clonazepam and trazodone again. There a thing called kindling with benzos… I guess that when you start a benzo, stop it, and then restart it again, it can cause problems in some people. That must be what happened to me because I immediately began having heart palpitations as my first symptom, then extreme anxiety a few weeks later. The jerking started after taking it for 2 months. I continued taking it and tapering it for another 4.5 months. Most Doctors are really clueless when it comes to benzo withdrawal. Of the 10+ professionals that I’ve seen, only 2 understand exactly what’s going on with me. The others don’t Beleive withdrawal lasts more than 6 weeks, and some don’t recognize hypnic jerks as a side effect. Please read the ashton manual if you haven’t yet. It will prepare you for withdrawal when you get to that point.

      • Yeah I’ve had anxiety over night noise too but don’t normally, only if I’ve been having trouble sleeping from some other cause. Our home backs up to a wide neighborhood street and on weekends, the motorcycles are here racing off and on. Then my husband is also a night owl, like your dad. He’s retired and sleeps more in the daytime than at night. If he closes a door downstairs or starts coughing alot, that can wake me up but years ago, it did not. He knows to keep the TV down low. Can’t do earplugs since I’ve had some inflammation in one ear. I had a long bout with insomnia at menopause too which is fairly common. Suffered for a year before a GYN clinic finally gave in and prescribed me a low dose of hormones. What a relief that was and I took them for 2 yrs, stepped off and was able to still get 6-7 hrs of refreshing sleep every night until 2012. Then the short sleep started happening again. I’ve tried hormones two different times but no help there this time. The only real explanation I’ve gotten is the recent diagnoses of sleep apnea. I did try to find a suitable sleep clinic in this big city 2 yrs ago. I’d call around and find out they had closed, another one was run by an East Indian doctor who I didn’t trust, and the one I recently went to required a referral. If you want to seek further help with withdrawl, I would recommend a psych clinic. There’s a stigma attached to that but they are the ones who prescribe benzos more than any other kind of Dr. I think you’re on to something about the intermittent use and jerking. I’d been doing that for over a year and the Neuro doctor said it was okay to take as needed. But then I’d been getting the jerks and head noise along with restless legs very randomly for at least 2 mos. before I even went to that clinic. Taking mineral supplements such as magnesium and iron seemed to aggravate it, also having anything sweet in the evening and I’ve almost quit caffeine totally. Anyway, we all hope for better sleep every nite.

  23. For those that have are managing to sleep at night, are you having any luck takinh a Nap? Why is the Nap so impossible. I’ve had success falling asleep for a few hours at night lately but cannot still get a nap in. Just tried my 200th nap after only having 6 hrs sleep in 2 days and the jerks were relentless… Thanks.

    • I have to agree: naps are impossible. No matter how tired I am
      I twitch like crazy until I finally give up and just get up. Sometimes I actually feel somewhat rested after these attempts, yet I don’t know why. Maybe it was because I almost fell asleep about ten times before getting up.

      • Yep, it is so weird. I find that also at times. If I crack the Nap I’m on the right track..

    • Hi Ck;
      I manage to sleep some at night, it varies, from 4 hrs to 6-1/2 hrs, depending on how much low dose clonazopam I take and random luck. Sometimes I can get 5 hrs of fragmented sleep when taking nothing. My sleep later in the night (btwn 2-4am) is fragmented sleep with vivid dreams and some jerking in between as I try to relax myself back into sleep.

      I get the same thing as you when I try to nap. About 2 yrs ago, I could nap maybe 5 min. in the afternoon and then wake up with a half snort.
      More recently, as I just start to drop off, I awake with a half snort, and one time it was a gasp, but mostly it’s a jerk with a popping sound in my head that halts the transition into sleep. Just recently, I was diagnosed with sleep apnea and hope to start c-pap therapy soon.

      A sleep tech told me not to try napping unless I feel sleepy.

  24. Caligirl; You said you’re using a Phillips Respironics c-pap machine. I’m looking at one on their website called “Dream Wear”. Is that the one you’re using? The hose extends back from the mask band at the top of your head, not from your face. Looks more tolerable. Or do you use a full face mask? I got my next appt. moved up to next Monday.

    • Caligirl said:

      Hi Sylvia! I tried a similar mask the first night I ever used cpap, and I woke up four hours later with the inside of my nostril hurting. So, I never did try that mask again. Now, I use the F&P Eson nasal mask that the hospital gave me. It’s not a full face mask, it only covers my nose and I’m happy with it. The philips respironics REMstar auto a-flex system one is what I’ve been using. It’s one of the quieter machines. It also has a humidifier which really helps my sensitive skin. When I had the humidifier too low, I was getting horribly chapped skin on my upper lip.

      • Caligirl said:

        Not on my upper lip. Above my upper lip. After I turned the humidifier up more it solved the problem.

  25. Hi Caligirl; Thanks for the reply, i’ll keep those in mind. I’ll probably need a full face mask. Tried one on in a c-pap store yesterday and know that it will take some time to be able to sleep comfortably with that on. I think it’s doable though with a good quality one. At first, you took sleep medication didn’t you? I read that wearing the mask for awhile during the day can help with getting used to it at first. Only at home of course. As a teenager I wore headgear (for braces) but in those days I slept like a rock every night.

    • Caligirl said:

      Hi Sylvia! I was taking 0.5 mgs of ativan when I started my cpap therapy, but it didn’t help me sleep the whole night through. I could sleep four hours with it and then I would wake up and couldn’t fall back to sleep with it on. It was about a month after the jerks started, so sleep was very difficult in general, and that may have been part of the problem. I did wear it during the day before my first night using it. I found that I slept very well with cpap when I was taking 12.5 mgs of trazodone. Trazodone raises serotonin, and setotonin helps you sleep more deeply. Good luck with your cpap therapy!

  26. Caligirl said:

    I think this thread could explain why we have the jerks. It says that even people without any sleep disordered breathing can have sleep onset centrals.


  27. Caligirl; I searched the link and it doesn’t go anywhere. I’ve been on cpaptalk.com before and found alot there. I’ve been reading on the other link you provided to Dr. Gominak’s site on D and B vitamin deficiency. That’s interesting, her experimentation with the sleep disorders she found in people who thought their sleep was normal and also the connection to insomnia, sleep apnea, and gut bacteria.
    I read awhile back that low ferritin (stored iron) can cause insomnia, restless legs, and myoclonic jerks. I took iron supplements for a few mos. last year. It raised my ferritin level up to 43 but didn’t stop the jerking or anything else. Jerking while trying to sleep is also a side affect of medications such as tramadol for pain. Some people get it temporarily while coming off antidepressants.

    • Caligirl said:

    • Caligirl said:

      I’m glad you found it interesting. My sleep has been poor lately since I stopped taking trazodone. The jerks started six months ago for me six weeks after I stopped taking
      5-HTP, which is an herbal antidepressant. I figure I had sleep apnea before I started taking 5-HTP, but 5-HTP also raises cortisol levels, so I think my cortisol levels went up and then got stuck there. It’s just a theory, but I’ve taken other antidepressants in the past and never had this problem. My ferritin is also low, 22, and that seems to be a common link with some of us on the here. So, I wonder if it has something to do with it. My vitamin D level is also low, 23, which seems to be another common theme here. Something’s up with my body, I just wish whatever it was would stop now.

    • I think I read that ferritin levels should be over 50, even though they consider 20 to be normal.

  28. Caligirl; Thanks for the link, I’ll check it out. So sorry you’re not doing good but least you’ve had a break there with much better sleep. Everything I read says don’t give up on the cpap machine. For some people, it takes months of very gradual improvement. Now that it’s getting warm out, I’ve been getting out for some sun, that might help you. Sounds like we have other similarities, mainly the sleep apnea insomnia itself. I really think apnea is the root cause. A common symptom is feeling sleepy and even dozing off during the day which I did have but only for 2-3 mos. in 2012 when I went through major sleep transitions . But since Aug of 2012, I’ve had short sleep most of the time, transitioning between sleep onset insomnia and sleep maintenance insomnia. Most of the time I have this wired and wide awake feeling, seldom felt sleepy, especially not in the daytime. My ferritin level was also at 22 (with normal iron level) when first tested in Oct 2014 and vitamin D was 28. Right now I’m back to sleep maintenance insomnia because the sleep starts have almost disappeared, nice to have a break. I fall asleep anywhere between 8:30 and 10:00 and wake up between 1:30 and 3, wide awake. This is what it’s been like most of the time for the last 3+ yrs. Sometimes I would get relief with being able to add on some fragments of rem sleep with vivid dreams off and on until 4 or 5:00 and felt better the next day. Last year I was seeing an MD/GYN who is also like a naturopath doctor, she prescribes supplements and diets. I gave her most of my symptoms and she tested me for candida overgrowth. Bloodtest came back negative but she said (and I’ve also read) that people can test negative when they actually have the overgrowth of bad bacteria in their gut. Then she also said that ongoing poor quality sleep can cause the bacterial overgrowth and that the overgrowth eats ferritin. Not all doctors believe in candida overgrowth but some conventional drs will admit that it’s being researched and they just don’t know enough to address it yet. So I just take a good probiotic, and try to stay away from sugar and yeast. Other strange symptoms I’ve had that randomly come and go in the past 3 yrs are burning pain in upper back, numbness in my right leg and foot, which sometimes turns into restless legs, sweating for no reason day or night, sleep starts, and waking up with numbness in my hands and forearms. There’s more weirdness that I won’t mention here. I did find a posting on ehealthforum from somebody with sleep apnea who said waking up with numbness in hands and forearms is a symptom of apnea and advised another poster to ask for a sleep study. She also said that it was an easy fix for her with cpap. That makes me even more hopeful.

    • Caligirl said:

      Thank you for all of the info, Sylvia! I’m so sorry you’ve had to deal with the insomnia for so long! It can be torturous at times. The last three nights, I’ve been dealing with some insomnia myself, so I’m considering going back on trazodone again. It seems like the a lot of us, if not all, are suffering from insomnia along with the jerks. That’s great that your’s have almost dissapeared. How long have you been having jerks at night for? I just saw a commercial for the Dr. Oz show. Monday’s episode is supposed to be about the five gut types and they’re going to talk about candida also. Thanks for telling us about the candida overgrowth eating away at the ferritin. I never knew about that, and I’ve been wondering if the gut could be playing a role in this somehow. My iron level was normal also, just the ferritin was low. So, it sounds like that could be the reason. I think I’ve had some sleep apnea symptoms for awhile now, but I never knew what was wrong with me. I just knew my body felt different, but I never knew why. I have headaches every day and my once small appetite has become huge. My blood sugar feels like it is all over the place. And I used to be a very heavy sleeper, and now I am not. You said that you wake up more easily now also. What do you think is causing that? I would love to know. I think you will notice a difference right away in some of your symptoms when you start using a cpap. I don’t even find mine uncomfortable anymore. I just have trouble sleeping the night through with it on for some odd reason. I know I should try it again sometime soon, but right now, I’m just taking things day by day.

  29. Hi Caligirl; Yeah you should probably go back on trazadone, maybe take it every other night for a week, then taper to every third night. I’ve read that trazadone is less addicting but maybe not for some people. You were on a very small dose, right? That was the second treatment prescribed to me for insomnia in 2013. I was given 50mg pills and told to start with half a pill and work up from that until it helped. Seemed to help off and on, very sporadically. Clonazopam works much better for me. I didn’t want to go above 50 mg of Trazadone and if I did, it woke me during the night with a very stuffy nose. I took it for maybe a month. I see where some people take it for years and it works good, then it suddenly stops working. Then with no help, they are awake all night. One lady said her doctor wouldn’t prescribe her anything else so she turned to alcohol. Very scary.

    To answer your question, I started jerking awake about 1-1/2 yrs ago and it showed up very gradually along with restless legs. It started about 2 yrs after the insomnia started and taking magnesium made it worse. Some nights were okay during that time where I could get 6 hrs sleep, then the next night I’d have the wide awake and wired feeling, followed by a jerking episode when starting to fall asleep. It was like an attack, all of it together with restless legs. I’d end up with maybe 3 hrs sleep at most but I wasn’t taking anything during that time until I finally saw a neurologist in Dec 2014. He sent me for an MRI of my head and neck, and since I also have tinnitis, they gave me a balance test. Neither test came back with any concerns. So then he prescribed clonazopam, saying that people develop a tolerance very gradually (I don’t quite believe that). I got more of the real scoop from reading from benzobuiddies and other sites and have been careful with it. I don’t alternate it with anything else and don’t take it every nite except for the 2 wks I was adjusting to the slumberbump belt I wear to stay on my side. Slumberbump might be helping some with stopping the jerks. Had just one jerk last night where I went right into REM sleep and dreamt I was being hit in the face by a cupboard door, jerked me awake and then I went right back to sleep. Before that, I had dozed in front of the TV for maybe half an hour in my recliner. Trying to cut that out. Slumberbump belt is starting to bother my upper back so I’m taking it off after 4 hrs or so. If I sleep any more after that, it’s Rem sleep dozing on my side anyway.

    You say your blood sugar feels up and down? Have you had it checked lately? High blood sugar also keeps people awake and affects the appetite. My appetite has been relatively low but then I always start eating soon after I get up, hungry or not. I eat three small meals and 2 or 3 snacks everyday. Keeps the blood sugar stable, I used to be prediabetic. I’ll try and remember to watch Dr Oz on Monday, haven’t watched him in a long time.

    • Caligirl said:

      Yes, I had my blood sugar tested but I fasted before the test when I didn’t have to, so I still wonder of it affected my result. My result was 100, and I told my doctor that I fasted before the test and she said that all of my blood work was normal. But after the jerks started, my legs started to feel shaky inside everytime I get hungry. This started probably three months after the jerks started, and nobody else seems to have this symptom. Have you heard of sewing a pocket into the back of a t-shirt and placing a tennis ball inside to help sleep apnea and/or snoring? Maybe it would be more comfortable than the slumberbump.

      • Sorry, I put my reply to this posting under another posting of yours from today, one where you mention central apnea. I didn’t reply about the tennis ball though. That isn’t recommended by the sleep clinic I went to recently. They said it’s was advised years ago but slumberbump is what they now recommend and it does work much better than a tennis ball. I tried the tennis ball therapy for one night several years ago when I was suddenly waking on my back and not feeling refreshed some days. I woke during the nite struggling to get on my back. Ended up hurting my shoulder and took a couple weeks to heal. A sleep clinic I went to in 2004 told me to do that so it’s old advice that doesn’t work well. I remember back then a sleep dr. saying that I couldn’t possibly have sleep apnea because I have a small sized neck. Pretty funny how little he knew.

      • Caligirl said:

        Yes, I have a small neck also and when my doctor suggested a sleep study to see if I had sleep apnea, I thought it was a complete waste of time. Boy, was I wrong.

      • Caligirl said:

        I saw your reply under the central apnea comment and I put a reply under that as well.

  30. Mark, you said that rogaine and testosterone both cause water retention? It turns out, that sleep apnea is caused by an overload or malfunction in the way your body processes water, especially relating to the lymphatic system and veins. When you’re sleeping, the fluid heads towards your neck. Alcohol will also cause this in any amount, as well as eating after dinner, having a high fat dinner, a high stress day, or a physically exhausting day. Also, blood pressure medications will make sleep apnea worse because of the fluid retention around the neck, and the ingredient in rogaine, minoxidil, is also used in oral form as a blood pressure lowering medication. This article talks about it and also recommends some supplements that will help with the fluid retention and the lymphatic system.
    http:// http://www.wellnessresources.com/health/articles/a_sluggish_lymph_system__causes_snoring_sleep_apnea/

  31. Ok, I don’t know why that link isn’t working, but you can google sleep apnea lymphatic system and the wellness resources article will come up.

  32. A chronic low-grade infection in your digestive tract (bacterial or candida imbalance) also causes lymph stagnation which can lead to sleep apnea/hypopnea/snoring.

  33. Hi Mark

    How are you going with Lexapro? Is it helping much with the jerks?

    • I hate the jerks

      • We all do Mark. We shouldn’t have to deal with this I know. Are you taking Lexapro at all? .

      • No it was Zoloft . It did take away the jerks but I literally could not function . I took it like a week I could not ride out the tiredness . I felt so weird and just a bad feeling . I had to get off it . I couldn’t work !

        Someone please try 10 mg of biotin . Take 5 in the day or late day and 5 about an hour before bed . Someone please try it . Report back .

      • OK mark. Ssri tend to give you nausea and alot of unpleasant side effects in the first week from what I’ve heard. I have biotin 3mg. I remember using it and felt. Like it gave me insomnia, might have been a coincidence. Many have said on the blog the it works. Have you tried it? It’s a Vitamin b7 from memory

  34. Caligirl; Hey how are you doing by now? I had my sleep study early, on Wednesday night and it went okay, at least I got some sleep with wearing a nasal mask. Sleep tech had me try on 3 different masks and I chose one with the nasal pillows. I like that it’s lighter and less of a footprint. Sleep tech had to wake me up when a monitoring device on my finger came off. Then couldn’t get back to sleep for awhile.
    Then another time I opened my mouth in my sleep and of course with air coming out, that woke me too. Dr. should still have enough data to write me a prescription. Just lately I’ve been getting more sleep and less jerking, even got a couple naps in and I’ve never been a nap person. That’s okay, I’ll grab sleep whenever I can get it. Last night I got 5-6 hrs of fragmented sleep without taking anything. Got woken up from wind rattling an awning outside. Starting to wonder if this is just a fluke or if the positional therapy is finally helping. Side sleeping is supposed to make for less apnea events. Anyway, that’s the latest. Hope all is well with you.

    • Caligirl said:

      Hi Sylvia! That’s great that you’re sleeping better and having less jerks. I feel like I’m having more jerks with cpap than I was without it. I’m also having occasional nights where I wake up early in the morning for no reason, and I wasn’t doing that before. I read on cpaptalk.com that some people have increased centrals when they first start using cpap, and sometimes it resolves over time. The technician at the sleep lab told me that I was having mostly obstructional apneas, when I questioned her about my results, back in October with my loaner cpap. So, I guess I had some centrals also? Last night was kind of a bad night. I woke up after a big jerk and was up for probably an hour and a half. Right before the big jerk, I woke up a couple of times right when I was going straight into REM sleep. So, I decided to check my apnea hypoxia index (AHI) and it said 3.3. Then, I checked it a couple more times before falling back to sleep, and the number kept going down and was in the 2 point something range. By morning, the AHI was below 1, so I guess I was wrong before when I thought that having an AHI below 1 meant I wasn’t having any full apneas. It gives me a little hope, but I still don’t know exactly why I’m still having apneas. Also, after my first jerk, it said my 90% pressure was at 5, which is the pressure level I started with, so it seems like maybe the pressure didn’t increase automatically like it should have to prevent the apnea. So, I’m just really confused right now about what is going on with my machine. It is still pretty new, so that shouldn’t be the problem. The other thing I have is some twitches and movements before I seem to be falling asleep or while laying in bed fully awake in the morning? Do you ever have any of these? This condition is just so confusing to me. Anyways, I think if you can manage wearing the nasal pillows, it might be better than wearing the triangular nasal mask that I have because it leaves me with a huge, red mark around the sides of my nose. Not a good look for me, lol! Make-up covers it some, so it’s not my main concern right now. Anyways, it sounds like the side sleeping is helping you, so that is a good sign. Let me know how things go!

      • Hi Caligirl; Sorry you’re still having the bad nights. Since everybody is different on c-pap recovery, it’s hard to pinpoint the problem. At least you are still getting some improvement over a month or two ago, right? I couldn’t believe the 10 hrs you got that one night. Yes, I’ve had that twitching in my legs before but not in a couple years. What I have now sometimes when I wake up early (as always) is a slight tremor running through me, kind of like a faint electric current. Don’t know how else to explain it but some women on a menopause forum (yeah I hang out there too, ha ha) have described the same thing. I still have some faint jerking and head noise but not so much when I’m first getting to sleep. More of it when I wake up and trying to get back to sleep. Then if I’m lucky, I get another wink or two of REM with vivid dreams. Yesterday I went and had a latte in the morning and small desert later on, seldom do that. Still managed to get 4-5 hrs fragmented sleep without taking anything. Probably wouldn’t hurt for you to set a followup appt. with your sleep doc. If nothing more, maybe you could get some assurance that c-pap is helping. You’ve been getting by with no sleep aids, right?

      • Caligirl said:

        Hi Sylvia! My jerks have been better the last three nights, so I think the 4 or 5 bad nights I had was hormone related. Last night, I only had one jerk and got a 6-6.5 hours of sleep. So, I feel good on that amount since my sleep wasn’t too disrupted and I slept with my cpap the entire time. I think I have that tremor you are talking about, but it is only in my legs. The doctor told me I have a slight tremor also, when she had me hold my arms out in front of me. I’m also experiencing less jerking when first falling asleep and most of my jerks occur if I wake up during the night or early morning. Last night, I only woke up once to roll over quickly, and it didn’t cause me to start jerking again. That is probably my biggest change since cpap therapy, is that I hardly wake up at all anymore during the night to roll over. It took a little while for that to happen, but if I don’t wear my cpap, I’m back to constantly waking up and rolling around. So, that’s a nice change. Also, my headaches are really improving. So, I know that the cpap must be helping me. It probably would reassure me a lot more if I went to the doctor about it, but I’d rather not spend the money on that right now, since they don’t seem interested in my case at all. But, I’ll keep that in mind. I think I may be having some shallow breathing in general, because even before I fell asleep at night, my pressure went from 6 to a 6.5 and my AHI was at a 4. So, I was a little confused thinking, “Did I have four apneas while I was awake?” Really strange. This was during my first 30 minutes in bed when I couldn’t fall asleep. I’ve noticed my pressure has gone up before when I haven’t slept also, when I was trying to nap. So, I don’t know what to make of that. I also feel much calmer, happier, and don’t really worry anymore now that I’ve been sleeping with my cpap every night. Tonight will be two weeks exactly, hopefully more good things will come. I think you’re really going to enjoy your cpap! It sounds like you’ve been doing better too lately, so that is great! And yes, I’m still off of all sleep meds.

      • Hi Caligirl; Finally getting back to you with an update. Glad you’ve got steady improvement and feeling good now, that’s what we all want. Finally got my Dreamstation Auto CPap last Friday. DME issued me a ResMed AirFit F10 full face mask (highly recommended) even though my sleep doc prescribed a P10 nasal mask. Figured out some of the settings were probably working against me after getting only 2.5 hrs sleep on Sat. night, was on the machine much longer than that. Set the humidity from 1 to 3 and the flex setting from 1 or 2, to 3. I think the higher air resistance and no humidity were getting to me. Woke up with very dry mouth one time, then couldn’t get back to sleep. For now I’m just taking it a day at a time, using the machine every nite for at least 5 hrs and getting whatever sleep I can. Not expecting miracles and none have happened. Last night I got 4 hrs broken sleep on the machine and another hr of REM sleep on my own. That is with clonazepam but I know it can get worse for some people before getting better. Today I’m going back to the DME for a P10 nasal mask because I’ve already gone and complained about the leaks from the full face mask. Can’t change position without having to make adjustments for new air leaks. I looked at various masks on cpap.com and now see that all masks available from DME are made to fit men. The Cpap machine itself is fine, no noise and easy to operate. My prescribed air pressure is 7.

    • Get on the Full face for her air quattro. In the end I am just not sure apnea has much to do with jerks. 3 yrs CPAP now. I am trying EmergenC Electrolytes. Their new upgrade on the IPHONE wont let you open links. SO I can’t post as much. Lovely. Side sleeping does help. I think CPAP is good for anyone but I just lost 15 lbs and still have the jerks on CPAP. It is nerve related.

      • Hi Mark; My sleep doctor told me that with forced air coming through my nose, my mouth will close. Sleep tech told me they were giving me minimal air pressure for the sleep study, I’m sure it will be stronger by prescription. Don’t know much about this yet since I haven’t even been to a DME. I will look at the quattro mask (if they have it) and may just get two masks even if insurance pays for one. Sleep tech told me another sleep study is necessary about every two years to re-evaluate the apnea and have the machine pressure reset if need be (?). Maybe doing that would help you.

      • Interesting. I have had 4 sleep studies. MY friend is a sleep Tech. I know way more than I want about CPAP. It is just the opposite with a nasal mask, the air blows your mouth open that is why people that use them sometimes use a chin strap to keep their mouth closed. The mask I’m talking about is full face mask. It is extra light and leaves few marks. You can also buy something called Rezzzs which covers the mask where it touches your face. Of course they say a sleep study is needed. They wish you would have one every week. I really hope this is what is causing your jerks. Either way I bet it helps. It lowers Sympathetic tone of your nervous system which in itself may slow the jerks. I do believe that. I just don’t believe that is the cause apnea.I have seen the so-called best Neurologist in country or one of them and 4 others. The Jerking is Primary not secondary to Sleep Apnea. For me….Hopefully you are different.

      • Mark, What I think happened with me is first sleep apnea, starting in 2012. This first caused longer sleep with daytime sleepiness, which transitioned into restless sleep and insomnia, then ongoing restless sleep and insomnia eventually causing the sleep onset jerks , along with restless legs. I read years ago when my insomnia first started, that it’s hard on the nervous system. Always had that wired and tired feeling, very seldom got sleepy. I saw doctor after doctor who (after preliminary tests) wrote me prescriptions for antidepressants or sleeping pills or recommended melatonin. Those either helped for a short time or not at all. So if c-pap helps me sleep longer and deeper, the nerve problems should disappear. I came across some postings about the jerks on cpaptalk.com, two or three that said c-pap eventually got rid of jerking while trying to fall asleep. But of course it won’t resolve the jerking if it originates from supplements, antidepressants, etc. I don’t know what a person can do about that.

      • Keep me posted please

      • I’d like to add my two cents that I believe the condition is mostly related to a neurological disorder of the central nervous system. I do believe apnea can play a part, but most folks here appear to have gotten it from something that altered their CNS in some way, from testosterone, stimulants, seratonin enhancing or depleting medications, benzos, etc and most agree it is exacerbated by alcohal, sexual stimulation, stress and more.
        This is only based on my observations, not scientific data, so of course I could be wrong. We are all different but seemed linked by the varying onset and duration, as well as how strongly it affects some (limbs literally kicking of flapping for some-me) but also noticed mentally like a ‘brain twitch’, which I get too.
        I’m not discouraging sleep apnea research, as I believe it can play a pivotal role, but I think the real culprit is our CNS being disrupted in some way.
        Just my two cents! Best wishes to all!

      • Totally agree Brian. After reading 1000’s of posts for 3 years and studies this is exactly my conclusion. And after seeing over 25 doctors in every field. Sadly.

      • Do you get a lot of brain twitches? I’ve been getting mostly those in the last few days. That, and some spasms in my legs. Otherwise, my jerks and jolts have mellowed down in recent weeks. The brain twitches are strange… Literally feel just like one.

      • I agree with you Brian. Our startle response is also the culprit I believe. The brain twitches are crazy and I still cannot work them out as they are so random. This condition has a mind of its own. I find I’ll get a massive jerk when laying on my back no matter what. I still get them on my side but have had success falling asleep without meds on side.

      • Better on the side would indicate sleep apnea but it’s not. .Could have something to do with the Spine.I did have a couple of adjustments and they went away for a while.His X ray showed where my spine enters the brain it was as crooked as he had ever seen.

      • Well, I’m back in a crazy sleep pattern. Just posted this on benzobuddies…

        “Almost 7 months off clonazepam. My sleep has been very up and down since the beginning of march when I was able to drop mirtazipine and finally be med free. Overall, I was averaging 4.5 broken hours sleep for the last several weeks. Last night was terrible. I slept up to 30 minutes with a horrible nightmare and the rest of the night was jerking awake with leg spasms and other crap. Very nauseas with chills all night too. Had to pee 5 times!! I’m so sick of this. It had been 2 months since a bad night of sleep like that- i thought the 0-1 hour nights were behind me. Feeling so down today and exhausted from crying and no sleep. I need this torturous sleep to end!

        If I would’ve never touched clonazepam, I would be working at the job I love, wouldn’t be crying in front of my little girls all of the time, would be sleeping in the same bed as my husband, wouldn’t have heart concerns, etc, etc. That crap has ripped my life from under me.”

        Basically, the jerks are still ruining my life… And back with a vengeance last night.

        Brian, do you ever get sleepless nights anymore? Did you/do you ever get nausea or severe morning anxiety?

      • Sorry to see this Jessica. I thought you were doing much better, didn’t you post not too long ago that you got 6 broken hrs? Did you feel better on that? That’s pretty extreme what happened last night but it may not be just the clonazepam by itself, it could be residual effects from the combination of treatments you were prescribed.
        If this keeps up, I would suggest going to a clinic where you can get professional feedback on what is happening to you. It may be perfectly normal for this extreme rebound months later and some of it may be withdrawl from mirtazipine too. I searched under “natural tranquilizers” and there’s such remedies as; chamomile tea, L-theanine (which is in green tea), lemon balm as a tea or capsule, exercise, yoga breathing, etc. Best thing you can do for yourself is try not to worry. I’ve had nights with little to no sleep but not consecutive nights like you have. Try to focus on any little thing that’s positive and hope for better sleep tonight. Take it just one day at a time and tell yourself that eventually you will recover. Prayers that you get more sleep tonight.

      • Thanks Sylvia. I was getting 6-7 broken hours on really good nights, but my average for march has been roughly 4.5 hours. I keep a sleep diary so I track it.

        I’ve seen about 15 medical professionals in the last 7 months. I won’t be wasting anymore time with them. They are mostly clueless when it comes to benzo withdrawals. And if this wasn’t from a benzo, they would still be baffled and unsure what to do with me, except put me on a benzo… Something that a few suggested, even though they knew I was in withdrawal. Anyway, the thousands of people on benzobuddies know more than the doctors, unfortunately. I get my information there along with other good sources like the ashton manual. Sadly, withdrawal can take 6-18 months. Sometimes longer. I’m guessing I have at least a year before I can claim victory over this horrible condition since my symptoms started out worse than anyone else I’ve heard of. Mirtazipine didn’t seem to upset things with me, but who knows. I don’t trust pych drugs. Period.

  35. I was reading about sleep apnea, and I think I may have figured out why some of us have hypnic jerks that weren’t diagnosed with sleep apnea, or aren’t getting relief from the jerks after starting cpap therapy. I know that when I had my sleep study, I didn’t have have any jerks at sleep onset, like I had been having basically every night prior to this and after (although, I think they are getting better). I did have jerks during deep sleep that they said were caused by obstructuonal apneas. I told them about the jerk at sleep onset that I normally had, and they said it sounded like hypnic jerks. Central apneas can cause you to wake up without a jerk at times, possibly several times, over and over again, at sleep onset. And I think at other times, they cause us to jerk because we stop breathing. While researching apnea online, I found out that the use of supplemental oxygen, which I know I received during my sleep study, can help treat central apneas. So maybe there are some of us that didn’t have central apneas the night of our sleep studies because of the oxygen therapy we were receiving. You can also check out this article to get some info:


    Also, from what I understand, it sounds like cpaps may not be as effective at helping central apneas as they are with obstructional apneas. This could be the reason that we aren’t seeing results from cpap therapy, as far as eliminating or reducing the number of jerks.
    It looks like an ASV machine could be more effective in treating central apneas. It also treats obstructional apneas. Also, central apneas are related to the central nervous system, and it seems like many of us think that the jerks are caused by some sort of nervous system dysfunction.

    • I showed zero Central Apneas on 3 studies. I do not believe this is the issue. Maybe for some of course. As in 1 percent.

      • Caligirl said:

        Did they give you oxygen during these sleep studies? That could be the reason why a central apnea wouldn’t occur.

  36. Hi Mark/Brian,

    Just checking guys to see how you are going? Hope all is well.. Same old from my part. Some good news is that I’m able to fall asleep on my own with just 3mg mirtazapine, but bad news is I’m only averaging 4hrs a night as after that the contractions and twitches are at there worst. I’ve tried biotin 3mg-6mg Mark and gotu kola for the last week and can’t say it did much. I do take them in the morning as worried they could give me insomnia. Anyway, hope everyone’s doing as best as they can.

    • Have to take it at night no insomnia . I am trying chiropractor now . I did last year and they went away but I didn’t believe that was the cause . I paid 770 bucks today for 18 adjustments . He said where my spine hit the Brain stem was the most crooked he had ever seen . This guy is well respected I saw the x ray. So ill let you know but reading a lot in how important the spine is to the Cns and signals to the Brain . Also valerian root will make you drowsy but not sure that helps the jerks . Depends on how bad they are . I also find days I have to work the jerks are worse . Almost as if I know I have to get up and stay more stressed . But it’s not the cause . For 7 yrs I was on vacation sleeping until noon when all of this started . I could sleep 20 hours if I wanted .

      • Thanks Mark, have you taken the biotin at night and how many mg? I ve started seeing a chiro keep us updated on the results

      • Hi Mark did the chiropracror help at all?

      • I am not sure yet. I have had 4 appointments. I saw one other person that it helped. So far I cannot say it has. He says where my spine enters the brain stem is the most crooked he has seen. We will see. I went today. This last round of jerks came of of no where. I know a few things. Alcohol will DEFINITELY create them of make them worse. Medications can. Just depends which. I absolutely love how Gabapentin makes me feel. Other than Zaanax best feeling drug ever for me. It makes me sooooo relaxed and sense of well being. Guess what…It gives me the worst jerks ever! Makes no sense at all. How in the world can make sense of this? I have no answer.When my jerks are bad my urination is off the charts also. FYI. I saw one other here, I think Brian has that also. No doubt this is depressing. My friends all say, can’t they give you something for that? Also with me, they have went away for long periods. And they usually start back up when I change my routine or start taking something new. Or I start drinking, even just a few. Get this, rogiane for thinning hair makes them go nuts. For a while I was sure that was the cause but I know everyone here has not used Rogaine. I am pretty smart with a touch of OCD and I cannot figure this out. And I can’t believe I can’t.

      • Do u find vitamins or herbs make them worse. I have noticed that?

      • It depends on which ones..Valerian root seems to help.

    • Hi CK,
      Thanks for asking. My sleep twitch goes in cycles; I am in what I call a ‘twitch cycle’ now. It last anywhere from ten days to a month in varying degrees of severity. When it is bad, I take clonazepam. When it’s not too bad I take antihistamines and get about 4-6 hours of sleep, depending. I’ve learned how to survive on the least possible amount of sleep, but prefer to get at least 4 hours. I am on my third year of this condition and expect I’ll have it for life.
      I hope you are doing well! Take care.
      I hop

      • Brian, how long are your good periods lasting? How much sleep do you get when you aren’t in jerk cycle? Are you able to nap ever? And, have your symptoms improved a little over the last 3 years? I’m currently at 7.5 months off of clonazepam and struggling. 0 sleep last night. I’ve had some better days though so trying to stay hopeful that my brain will right itself. Don’t take any meds right now.

      • Hi Jessica,
        The worst I experienced was in the first year. If there is any consistency with this problem, hopefully that will be the same for you. The cycles change for me, but one constant us that no matter what, they always come back with varying severity. In a twitch cycle I can’t nap, but between them I sometimes can. I hope that if yours last this long, they will get weaker over time. I also suffer from insomnia too, so mine may be different. I hope you find some peace from this. Take care!

      • Briannive said this before over the last 3 yrs or so but everything you say is exactly what I go trough . Exactly . Do you ever drink alcohol anymore ?

      • Alcohol definitely makes things worse. Tried and tested many times.

      • I do drink occasionally but any more than three beers and I get terrible insomnia that only the strongest sedatives can tackle. Alcohol used to give me severe twitches too. Painkillers do as well, but stimulants are the worst. I can drink coffe only in the morning right when I get up. Anymore caffeine later and it has a terrible effect on my central nervous system. This condition sure has been a treat, I hope you get some relief from your!

      • I have one beer and screwed. Coffee I have worked out like yourself, one in the morning, that’s it. It sure is a screwed up condition. If it was as easy as eliminating certain foods or beverages and we’re able to sleep I’ll take it, but sometimes even on strict days I find I get them. Interesting if others can chime in on whether they have similar effects

      • Hi Brian,
        Sorry to hear I actually thought you were getting better. This condition has a mind of its own and we don’t know what to expect from one day to the next which is the annoying part. Are you taking any vitamins at all? I remember you taking small dosage of mirtazapine in the past, have you tried that again? I found even 4mg helps me get 4hrs sleep and that’s all I’ve averaged the last 2 to. 3 months. The last 2 months Ive thrown in Zopiclone, in there maybe for 5 nights, so. I’ve tried dropping mirtazapine and seem to be having some luck with getting 4 hrs for the last few days. I’m getting more of the sensory starts after I wake and have been getting those more than twitches and jerks I’ve worked out.. Also, have not touched a drop of alcohol for 2 months which I am sure has helped. Take care and keep on fighting, that’s all we can do.

      • Hi Brian,

        I was reading your post about antihistamines. I was diagnosed with RLS (although still not sure the diagnosis is entirely accurate) and was taking antihistamines prior to this whenever I needed extra help sleeping (this was before my twitching problems started). I have since read that antihistamines can cause RLS and muscle spasms. I was also taking over the counter sleeping pills as well when needed.

        “Diphenhydramine is a sodium-channel blocker. This can account for the muscular twitching that occurs when used at moderate levels. The passage of free sodium into and out of muscle cells is needed for proper electrical conductance and innervation. Sodium ions are needed for the smooth passage of electrical current along the nerves and by inhibiting the channels or ‘gateways’ that allows the sodium into the various cells types involved then one can expect certain ‘hiccups’ in the overall system, embodied by such symptoms as muscle dystonias.”

        It might be a good idea to stop taking the antihistamines…just a thought.

      • They make me twitch like crazy can’t take them . If this is the case do I take more sodium ?

      • That is an interesting bit of info about antihistamines. I suppose I am really lucky that they work for me. I also take Lunesta and Zopeclone when I have to, but Benadryl and doxylamine work for me too, depending on the severity. As I said, I also have partial insomnia; I never got to bed without taking something, and am glad when it is something non-addictive. Melatonin and trazadone work sometimes too.
        I am sorry to hear about the nights you can’t sleep at all; those always made me unable to function and very depressed. Best of luck to a swift recovery!

  37. Michelle said:

    Wow this is my first time finding this blog and it’s truly crazy how many people have this same problem with no known cause or cure! Ugh! It’s such a frustrating problem. I have been reading through the comments and I also believe it could possibly have something to do with cortisol or adrenaline.

    A bit about my situation. This started for me last year. Prior to this my only sleep problem was excessively sleeping 12+ hrs a day sometimes, for the majority of my life. Doctors could never figure it out so eventually I just adapted and now I would give anything to go back to that as opposed to dealing with this!

    It started out for me with adrenaline rushes while I was sleeping. These were not jerking or sleep starts but a warm rushing feeling starting in my midsection and moving out either to my arms or legs (rarely both at the same time). I began seeing doctors who kept telling me it was anxiety. I disagreed as I had absolutely nothing to be anxious about and felt completely calm and relaxed during the day. Eventually I saw a naturopath who diagnosed me with low copper and I started taking a liquid copper supplement called Oligosol. For a month I felt better than I had in my entire life. The adrenaline rushes had stopped and I suddenly had more energy than I had ever felt.

    That month was short lived and I began having twitches every night at the onset of sleep. The adrenaline rushes started again as well. I would have either an adrenaline rush or twitches but never both at the same time. Now the adrenaline rushes have stopped again and I am left with the twitching. One doctor just gave me zopiclone to sleep. It worked great for a whole 2 days. After several days of no sleep I went to the ER and was given trazadone. It also worked great for about 2 days. Eventually I realized I would sleep good with either of those meds IF and only if I mixed them with a shot of booze (terrible I know but I was desperate and it let me sleep). I stuck to only a shot because I don’t want to be too risky and it’s only the minimum needed to sleep.

    I saw another doctor who diagnosed me with Restless Leg Syndrome. He put me on gabapentin and I slept great for about 1-2 weeks. I was supposed to increase my dosage of gabapentin slowly which I have done, and it has stopped the twitching but now I am getting what I would describe as sleep starts. They are absolutely TERRIFYING. Basically I fall asleep and shortly afterwards, I wake up feeling like I was getting sucked into the depths of hell. That is honestly the best way I can describe the feeling. I was terrified to go back to sleep because I thought I would die. The feeling is very dark. I feel like my heart has stopped and I wake up taking a big deep breath of air as if I had stopped breathing, my heart is racing, and it feels like my head and face are half numb and the feeling quickly rushes back as I wake up and breathe.

    I was diagnosed with sleep apnea previously when I was still searching for answers in the beginning. But I didn’t really believe that diagnosis because I had never had trouble sleeping before, and because my sleep apnea was so mild it almost didn’t register as sleep apnea. They told me a normal rating for stopping breathing is 4 and I was rated as a 5…meaning I stopped breathing 5 times in one night and 4 is considered normal. This didn’t make sense to me that suddenly I would have developed this problem and that it would be so mild. I did try a c-pap but couldn’t continue with it because it pumped my stomach full of air within an hour and caused horrible stomach aches. I still believe the sleep apnea is actually a side effect of something else, the same thing which is causing these sleep starts and twitching.

    I also notice a strange feeling in my stomach prior to bed. And have also had my stomach muscles seize up on me while I am awake, relaxing in bed, prior to sleep. The feeling in my stomach is almost like a precursor that lets me know that tonight is going to be an especially bad night. The seizing muscles in my stomach are almost like having a seizure but it only happens in my stomach and i’m awake and aware of it when it happens. It’s not painful, just annoying.

    Anyways, that’s my story. Still searching for answers. Have another dr appt this week so I can tell him of the new developments.

    I have taken just about every supplement known to man trying to find a natural answer to this. Tons of research as well. I believe it could be adrenaline or cortisol related, or possibly related to seratonin or dopamine.

    I have continued with the gabapentin because it stops the twitching, and now I’m back to taking zopiclone with one shot of alcohol to prevent the sinking into the depths of hell sleep starts. Another interesting thing to note is I begin feeling the depths of hell feeling (like a tingline, numness on my head/face) sometimes before I have even completely fallen asleep, which now will make me wake myself up sooner because I’m so scared of the feeling that comes with it so now I’m kind of aware of it before it happens completely.

    • Hi Michelle,

      Sorry to hear you are suffering like the rest of us,. It is so confusing and frustrating to deal with every day. Are you taking any vitamins or found any that help? I’ve tried everything there is and now started trying vitamins that calm Gaba neurotransmitters, but not sure how it will go. I posted earlier if anyone has had some luck with the them. I like everyone am so confused and pretty much get depressed everyday from this condition, it has ruined everything for me.

      • Thanks CK. It is super frustrating. I felt like I was going mad. Thankfully gabapentin has been helping me with the twitching and zopiclone seems to be helping me sleep as well so I have not been suffering as much now as I was before when doctors kept telling me “it’s just anxiety” and talking to me about “sleep hygiene”. Talk about wanting to shoot someone lol But I’m not one to take drugs…I’ve never taken anything besides antibiotics and OTC medications, and I am determined to find out the cause not just mask the symptoms. I posted a very detailed and long post in the comments on the food and drink page that you might find helpful to check out: https://themanwhocannotsleep.wordpress.com/2014/01/26/food-or-drink-that-makes-the-jerking-worse/

        It’s what I’ve researched so far about vitamins, neurotransmitters, minerals, and diet. It’s not all encompassing, as there was probably more I could have added but the post was getting really long lol Maybe you will find something helpful though. I am in beginning stages of applying what I’ve learned and will let people know if I find something that helps.

        Sorry you are also struggling with this. If I didn’t keep doctor hopping I’m sure I’d be in much worse shape with this than I am today. But still have days where those sleep starts scare the crap outta me and make me think I will die. Not fun.

      • Hi, I have to comment on the Dr. Hopping: I’m glad I did too because I had one doctor give me the sleep hygiene speech, one tell me it was all in my head and to see a psychiatrist, a psychiatrist who listened and referred me to a neurologist, who then recommend a sleep study in which they detected abnormal brain waves when the twitches occurred (the sleep starts) and confirmed the diagnosis I’d found simply Googling my symptoms. $$$$ later and my friends and family finally believed me; all along they thought I was having a nervous breakdown.
        I wish everyone here the best, and I’ll definately read the article you posted regarding your research. Take care!

      • Brian, so what to do about the abnormal Brain waves? And what is causing them? And MRI showed I had small vessel disease but there is no cure.

      • Sleep apnea was ruled out by the sleep study. What it basically proved was the physical existence of the sleep starts, that they weren’t imaginary, as many around me thought. Friends and family saw that I lost a drastic amount of weight in a short period of time, that I was extremely anxious and somewhat paranoid (all conditions caused by lack of sleep) and assumed it was in my head. The neurologist merely confirmed what I already knew and prescribed clonazepam, which helped me tremendously. I, unlike others here, do not have this problem from benzo use; that drug actually helped me and still does. According to the neurologist there is no cure, he said the medication may help me sleep (acting as an anticonvulsant) and the twitches may go away with time. That was over three years ago. They have gotten a but better though, weaker, sometimes more spaced apart. The first year and a half was the worst. I hope this info helps. Take care!

      • Brian,

        It’s good to hear they have eased up for you over the years. I hope that they will leave for good for all of us. Compared to your first year with them, how much more sleep do you get now? I’ve been getting anywhere from 0-7 broken hours, but my average has been 4 broken hours. Absolutely no nap in the last year since these started. Can you relate? Do they feel more like little twitches or startling jerks? I don’t mind when I get a twitch in the hands, feet, etc.; but when I get a jerk or spasm it sends me over the edge and makes my heart race. Unfortunately, I’ve been getting more of the awful stuff than the tolerable stuff. Hate it so much! And always awake by 2-4am. Very rare that I can fall asleep again after that.

      • Get Xanax xr and take it just a couple nights a week . It will knock you out I bet anything . Take 1 mg . Just can’t take it every night but I think it can reset your nervous system and slow it down . One the jerks get unleashed we all know they stay for long periods you have to stop the trend somehow

      • Jessica, got the jerks from coming off clonazepam so unlikely she will touch another benzo. Zopiclone which is a baby benzo would be an alternative at low dosage , or maybe even Keppra non benzo, as some have had success after reading some old posts.

      • Anonymous said:

        No one really knows what causes them. I never took klonopin and I got them. I’ve now taken both and I will say my jerks are worse getting off klonopin but had nine coming off Xanax xr

      • Hi Jessica,
        Compared to the first year I am doing better, but I think it’s because I am now trained to get by on the least amount of sleep possible and still be able to function. Naps are mostly impossible, and I get by on an average of five hours of sleep a night, never all at the same time unless I take strong sedatives like 2mg of clonazepam. The twitches aren’t so startling anymore; mostly they are annoying.
        I hope everyone who contributes to this gets some relief, and that doctors start taking it seriously.
        Take care!

      • Brian, are you taking any vitamins at all? and any you found help?

      • I take a b complex with vitamin c every day, but that’s it. I’ve had theories ascot what causes the jerks, brings them back, etc. but find that nothing is uniform. Sometimes just very random.

      • Thanks Michelle,

        It’s great that people like yourself are willing to share your knowledge and others on here also. It is a silent battle and at times I feel like i am losing. It is hard on everyone and hopefully collectively we could find some form of treatment that maybe settles them down. I understand everyone is different and some react to medication in different ways, however surely some things help more than others and certain foods affect us more than others. Many have been down the benzo path, including myself, and every other drug thrown at me. I know it’s a fight we must keep on fighting and eventually we will get there. Some it seems already have, with time.

      • Brian I am still kind of doctor hopping. I want a referral to a neurologist. I went to the ER last month and outright asked for a referral. The doctor there referred me to this specialist center where it seems every doctor seems to refer to (do they get kickbacks for that or something?). Anyways after a week of hearing nothing from the neurologists office I called them and was told they are so backed up it would take 3 weeks just to get a phone call from them to make an appt. I still haven’t heard back and it was early March when the referral was sent. I’m going to ask my new doctor to refer me and tell him I don’t want that damn specialist center. A question about your sleep starts…does it seem like you stop breathing when you have them? I wonder if that’s why I was diagnosed with mild sleep apnea but I don’t really believe it’s actually sleep apnea, I think it’s related to sleep starts somehow. So just curious. Thankfully I live in Canada so the medical part of this doesn’t cost me. But the supplements I’ve been buying trying to find an answer that helps has cost me a lot. My kitchen looks like a natural health store.

        CK I agree if we can all come together and share what has or has not worked for us and share what we have learned in our own research, maybe we can find some answers. Before I was just kind of blindly trying to find things that worked. One thing that helped me for awhile was a natural supplement called Ortho Sleep. It pretty much has every natural calming herb etc in it…melatonin, valerian, passionflower etc. It actually works quite well for sleep and calming, not so sure it helps much for the twitching as I believe I was taking it when I had the adrenaline rushes in my sleep, before the muscle twitching started. I also wonder about coconut oil and Omega 3,6,9 because they are supposed to have protective factors for the brain, helping to build the myelin sheath or something. I’d have to look into that more. I’ve just started taking cannabis oil as well…it’s the kind they give people for seizures and there’s no actual THC in it. So far no difference but I do wonder if it could help the brain in some way as well if taken longer term.

    • Hi Michelle, how are things going with yourself? I’ve been getting these sleep starts again with no jerks, and also the tongue swallow sensation do you find they come and go randomly?.

      • Michelle said:

        Hey CK,

        I have been waiting longer to post to actually see if what I’m experiencing is really true. Suddenly within the last week I have stopped experiencing the jerks and the sleep starts for I would say 99% of the time. Occasionally I still get mild twitches but nothing like I was experiencing before, the sleep starts seem to have stopped in the last week as well. I also still get that strange feeling in my stomach like a rising feeling and occasional shortness of breath (which is what this all actually started with just before I started getting the adrenaline rushes.). I tapered off the gabapentin and zopiclone to see if there really seems to be a change and there definitely is!

        So here is what I’ve changed in the past week: I started taking P5P which is a precursor to the production of a number of neurotransmitters. I started taking Magnesium Taurate (Or Magnesium+Taurine). Prior to this I was taking magnesium citrate with no change, so if it’s this that has made a difference it would be because of the Taurine.

        Also, my brother told me that he just got diagnosed with Hashimotos (an autoimmune disease that attacks the thyroid). He told me about this because I was diagnosed with hypothyroid about a month ago. He read that taking selenium with vitamin E can reverse Hashimotos and get the thyroid functioning again so he thought maybe it would help with hypothyroid as well. So I started taking selenium and vitamin E about a month ago. Unsure if this would have an impact on anything else. None of the other symptoms I have besides weight gain, low energy, and headaches fit with a low thyroid diagnosis, but I suppose it is possible that the slenium and Vitamin E has helped other things as well, and the thyroid gland can effect functioning/release of NT’s as well so it could be possible I guess. But I saw no changes from anything I’ve been taking until the last week when I started the P5P and Taurine.

        I am not 100% twitch free but I am doing WAY better. Hope this can potentially help someone else out there. This is the most difficult and frustrating thing I have ever dealt with.

        I saw my doctor today again and he still says he believes I have RLS. My thing is that these things, even if you get a firm diagnosis, HAVE to be caused by SOMETHING, and so I still continue trying to figure out what that something is. I am hoping it is related to the Taurine and P5P. I don’t think it is related to the hypothyroid because when my symptoms first started my thyroid was tested and was completely normal, although the thyroid problem perhaps could have made the overall problem worse. After spending a long time quietly reading the notes on my file he also looked at me and said “You also have symptoms of anxiety and depression”. I KNOW the neuro and the other doctor that referred me to the neuro MUST have put notes on my file about that because I started crying at the neuro’s office and at the other doctor I was freaking out because he wanted to pump me full of SSRI’s after a HUGELY bad night with sleep starts, twitching and extreme electrical currents swirling in my head. I really hate doctors. I told my doctor, it wasn’t until these sleep issues starting getting really really bad that I started feeling anxious about them and the doctors ignoring my issue and continually saying it was JUST an issue with anxiety, in which case when I first started seeing the doctors about this stuff I felt fine emotionally, not depressed and not anxious, however their ignorance and failure to take it seriously certainly contributed to me feeling depressed or anxious and that once the sleep issues get taken seriously and corrected (which is what current doctor has been doing) the feelings of anxiety go away and the depression is GONE because he is actually listening. LIke wtf, it doesn’t take a genius. I swear all any of them want to do is hand out depression and anxiety medication to everyone that comes to them. Not to mention a symptom of hypothyroidism is depression as well! COME ON!

        (end rant) lol

      • Hi Michelle.

        That is great news and good to hear things have taken a turn and lets pray that they continue too stay that way. I have tried various magnesiums also with no much luck, but not taurate and will try the taurate. Sylvia, in the blog here has also recommended it. I was taking some Taurine and I think it might have helped not sure yet. I have some Gaba from a compound chemist which I tried once and was worried it might make things worse. My jerks are very mild now and I only get the head sensations like you mentioned, electricity running through it and am just kept up with head noises. Have you heard of gaba (gamma aminobutyric acid powder)?

      • Michelle said:

        Mark I will definitely keep updating. I hope they don’t come back but ya never know.

        CK I am getting a good 8 hours sleep, more if I need/want. I have tried gaba…it did nothing for me. From my research on Gaba supplements, they do not cross the blood brain barrier. However things like P5P and Taurine do. Taurine reduces excitotoxicity in the brain by interacting directly with the GABA receptors. P5P helps regulate GABA levels in the brain and is also needed to produce tryptophan which is a precursor to Serontonin, and also helps the brain to synthesize dopamine. If these supplements have helped reduce or prevent these jerks and sleep starts I will never stop taking them. Magnesium taurate is basically just Magnesium Citrate combined with Taurine. Maybe one helps the other to be utilized similar to how magnesium and calcium are often combined in supplements. I asked at the health store for Magnesium Taurate because I couldn’t find it. I was given magnesium Threonate which is not the same thing. I told the lady that it’s magnesium combined with taurine and she left the section that had the magnesium supplements and went to the section that had the “brain boosting” supplements and it was just called Magnesium + Taurine. So it could be called either.

      • I have already made few posts here on GABA. Phenibut is equivalent of GABA that crosses blood barrier. It helps to control jerks. I’m using this for several years now. Phenibut is availible in some countries as food supplement for fitness.

      • Hi Alex.
        So normal Gaba is different to Gaba phenibut? I do remember reading tour posts but wasn’t sure it was different. Do u know of any brand names. I’m in Australia so not sure we have it,and would like to check.

      • Here is the link in wiki on this drag. https://en.m.wikipedia.org/wiki/Phenibut

      • Cheers, thanks Alex

      • Michelle, what is PHP and why does it work in your opinion? What is our deficiency that makes it work? I have tinkered with Magnesium for years. IN fact, I took magnesium and zinc last night and had no jerks.

        Could you tell us what brand you are using on both? Sometimes that does make a difference. Thanks!

      • Hi Michelle, how many hours sleep are you getting.? I’m averaging 4hrs without meds and not much more with meds. My brain refuses to sleep more than 4hrs, even on nights I haven’t had jerks.. Annoying, as I used to get 8hrs straight before this crap started.

      • Keep Up posted mine have gone and come back so many times now I can’t count .

  38. Has anyone tried Gaba, Taurine, or inositol for the jerks or sleep? I guess they are a different type of vitamin.

    • Gaba off the shelves set mine off! FYI. I think Gaba is in Xanax or bumps it up. Or most benzos. I only know one thing that has shut them down. Xanax XR.

      • Thanks Mark, this is the over the conter stuff not the hard benzo. I got some. Compounded at a chemist and took it last night. I also think it might ve made them worse, but not sure if helping my boys soccer team brought them on also, as I don’t do anything after 6 and last night was quiet late. God, I hate this crap..

        Are you taking Xanax now?

      • It was Xanax XR, important distinction. It would knock me out 6 hours no matter what. But try getting off of it. wow. I Iearned what drug addiction is. Was only on it 3 months. Horrific to come off of it. But best sleep of my life. I don’t know what you are taking but I was surprised as usual when I took gaba supplement I jerked out of the bed. Again, makes no sense. Worth mentioning sodium again. Nerve impulses need sodium. That is a possible culprit I guess.

      • Yep so bloody weird. Xanax is strong stuff. Zopiclone helps when needed but found mirtazapine to help lately. Do you mean take or reduce sodium?
        It would be nice if we can somehow create a register of the meds people have tried and tested. Instead of people having to go through the pain of trying something and going backwards after having a good wave. It is annoying how then ‘mwcs’ doesn’t update what he has tried and what has given him some success up to now or what he is taking.

      • Take Sodium. I guess salt..Key component in Electrolytes.

      • Have you had any luck with it?

      • Have not tired it seriously. MY Dad is 85 and has a disease where he does not have enough sodium. He doesn’t have the jerks though.

      • Hopefully someone on here might ve tried it. Which valerian are you using. It seems to be hit and miss with valerian.

  39. Hi guys,

    I posted a huge post about the research I’ve done thus far on some neurotransmitters, vitamins and minerals and diet and their possible connection with these muscle jerks. The post is on the food and drink page posted on this blog. My understanding is that gaba supplements on their own do not cross the blood brain barrier (with the exception of “leaky brain” in which case too many substances that are not supposed to cross the BB barrier are allowed to cross due to leaky brain similar to leaky gut). I tried gaba supplements before knowing this and they didn’t seem to do anything. I have since read that taking gaba supplements is pretty much useless but there are other things you can take that can increase gaba naturally. Maybe you will find my post on that other page helpful. I still continue researching this on my own all the time, reading scientific studies, articles, forums etc looking for an answer.

    • Hi Michelle,. Hope you are still doing well. My jerks have settled also somewhat but the sleep starts are lingering. They do come and go though. With your sleep starts to you find you get those and no jerk or twitch? Mine just wake me without a twitch or jerk. Someone mentioned they are brain arousals but not sure why they are lingering on nights I have no jerks. Hope P5P is still working. Might be another med on list. I have tried b6 pyridoxine hydrochloride early in the jerks and taking taurine lately, but ran out of the practitioner one I get and got one from health store which wasn’t the same. I’ve read up on P5P and looks promising. Keep us updated.

      • I know you all keep mentioning p5p buy isn’t this basically vitamin b6 ? Sorry if I missed a post . This is killing me still . I’m depressed . I know you all get it . I’m very depressed . Anyone give me some more hope I’ll go buy this tonight . Do they sell in krogers? It is online better ? Thanks

      • Michelle said:

        Hi Mark, I mentioned both P5P and Taurine with Magnesium because these are both things I started taking at the same time and it was after taking them that I saw a change in the sleep starts and twitching. P5P is an activated form of B6. Ordinary B6 is an inactive form of B6 and is not as effective. This might explain it better:

        “What is Pyridoxal-5-Phosphate?
        Pyridoxal-5-Phosphate, or P5P as it is commonly known, is the active form of vitamin B6. In foods or most supplements, vitamin B6 is found in one of three forms: pyridoxine hydrochloride, pyridoxal, or pyridoxamine. Inside the body, these forms of B6 have to be converted by the liver to the active form the body needs – P5P. Low rates of conversion from the inactive to the active form of vitamin B6 have been reported, especially in people with impaired liver function, celiac’s disease, older adults, and in children with autism. By consuming vitamin B6 in the active P5P form, conversion is no longer necessary, and the full benefits are available immediately after absorption.”

        Hope this helps.

      • Thanks Michelle. I am going to try P5P and purchase now. I am not sure it will help of course but I will try anything.

      • I know what you mean Mark. What are you using to help you at all now? You’ve mentioned a few things in the posts. How many hours are you managing with or without meds?

      • I take Lunesta and Klonopin both. Lunesta saved me when they were at their worst. Ultimately I have to take whatever will knock me out. I don’t care if I get addicted or not. I have to sleep. But I try to wean off here and there. I can only take .5 Klonopin and sleep sometimes. I think I jerk all night but don’t notice it until it wakes me up.

      • Great info there Mark. Definitey worth looking into. I’ve taken b6 pyridoxine hydrochloride with no luck, maybe P5P could be the answer.

      • I already purchased solgar p5p it arrives tomorrow . I’ve read it can give you energy I may start off by taking it in the morning

      • Michelle said:

        Also I live in Canada so I’m not sure if they sell it at Krogers. You can get it online or probably at a health food or vitamin store like I did.

      • Michelle said:

        Hey CK, I have been doing well. But yesterday I completely forgot to take both my morning and evening dose of P5P and Taurine and I didn’t exactly have sleep starts but I did start getting that electrical feeling in my head and spine again and kept being woke up by it. I also stayed up way too late so this could have been a factor because I realize sleep deprivation (or pushing myself to stay up beyond what my body wants and then getting that 2nd wind) seems to contribute to the sleep issues I was experiencing before, especially sleep starts. That being said, working night shifts I often flip from nights to days on the weekend and I did that on Friday, staying up over 24 hrs and did NOT experience anything related to sleep starts, twitches or electric zap feelings in my head or spine, AND I DID take P5P both in the morning and evening that day. So that being said, I definitely believe it is having a positive impact on these sleep issues.

        If anyone is curious, I take P5P from Optimum Health (a Canadian Company) 2 50 mg capsules in the morning and 2 50 mg capsules in the evening. I also take AOR Magnesium+Taurine 365 mg x 5 capsules both morning and evening. I have never tried taking just the Taurtine or just the P5P, so I cannot say which of these is helping or if both are, because I started taking both at the same time and that’s when I noticed a difference, so I haven’t changed it and have continued taking both.

  40. Anonymous said:

    let go all synthetic supplements they wont work like natural ones, eat bananas and chocolate and drink full milk and get molasses in huge quantities
    cut off all the physical effort specially wieght lifting and when the jerks goes away u can start over with wieght lifting BUT with lighter weights and less muscle effort and more supplements than before
    learn breath techniques like 4-7-8 technique and use it before bed time and when stressed out and u can read about it
    i used also electrolyte powder sachets thats sold OTC for dehydration post diarrhea as they contain most needed electrolytes like sodium potassium and so,
    dark chocolate and molasses rich in magnesium and iron, bananas rich in potassium and magnesium milk is rich in calcium
    also try to get away from any tension a couple of hours before bed time, by the way video games is considered a tension and also all competitive activities like online games, also watching bad news like ISIS terrorists and earthquakes and all this kinda disasters that we see everyday in the news is stressful activities that needs to be cut off before bed time
    reading a book or watching a comedy show before bed time while lying on your bed is the best way to sleep naturally BELIEVE ME THATS HOW IT WORKED FOR ME

    • Anonymous said:

      i forgot to mention to cut off coffee not only before bed time but also throughout the whole day, forget this drink, tea also contains caffeine, dont take a nap, make yourself a bedtime and sleeping hours must be longer than normal person, must be not less than 8-9 hours may be more if possible the more u sleep the faster u gonna cure from this jerks,
      by the way im they guy who talked previously about alprazolam and paroxetine in this blog

      • Great to hear and thanks for giving us an update. We all need hope to get us through this and what you say is correct. Take care..

  41. Has anyone tried an alpha or beta blocker for the adrenaline induced jerks? I was given propanolol last year when these started and it didn’t work. I tried one again about a week ago when I wasn’t getting to sleep and it did help me finally fall asleep (for just a few short hours though). Since, I’ve tried it one more time and it didn’t work. I’ve been reading on benzobuddies about 2 people who were prescribed prazosin for their adrenaline rushes and nightmares. Both have had success with it. I have a doc appt on Monday and will ask about it. Also, who here has had success with trazodone?

    • I took it for awhile, maybe a month or so in 2013 in various doses up to 100 mg. For me it was hit and miss as far as helping with sleep. I remember waking with nasal congestion more than once when taking over 50 mg. But many doctors prescribe this antidepressant in a lower dose (starting at 25-50mg) for insomnia. Supposed to be less addicting than other medications that can be prescribed for insomnia. Caligirl was taking it but can’t remember for how long and she said it helped her get past the jerks and fall asleep. Think when she stopped, it took her about a week or so to get past rebound insomnia while on c-pap. She didn’t taper off.

    • I’ve tried traz and prop neither stopped twitches both felt great though but did nothing for the jerks . Same for gabapentin which is the best drug I’ve ever taken for anxiety but made jerks way worse .

  42. I wanted to ask if anyone has used Baclofen at all? My pharmacist had suggested it.. Please let me know if you have or know anything about it. I’ve done some research and it could help.

    • I thought they were extremely addictive but inhale not tried a muscle relaxer. I guess someone here should had by now . I may have once I’ve tried so much I’ve forgotten . I have a hundred pill bottles in a big storage basket of things I’ve tried . I think we should all go out and try everything if even for a week . Seems like muscle relaxer would work I’m pretty sure I tried one and it didn’t work .

      • Me too mark. I never took a multivitamin prior to this and now I am a vitamin king store. It says on Wikipedia it has similar properties to phenibut, and someone on here has had success with it. I am a little worried of trying new drugs as my jerks have settled but I get the head arousals or brain sleep starts. I was getting 4hrs med free lately which I was happy about but some nights it takes me up to 2 hrs to sleep other nights 10min, I’m on yeast free, low gi, no sugar and doing a hypoglycemia test on Friday. Who the f%$/$ knows what is going on. I stick to a routine that I have luck with and even then it gets out of whack. 4hrs med free is not much but I feel better than getting 4.5 or 5hrs with Zopiclone as it zonks me out and that is on quarter of Zopiclone and works in like 5min which frustrates me even more. Mine are all head arousals, head twitches the body twitches have settled like 90% yet these arousals are just as bad. Your right the more people that try stuff like Michelle has and inform others it would be great. It will be hit and miss also,. I’m sure people in the past on here have had some luck as they are no longer on here, just hope if it was the case they would share it… Also took practitioners strength taurine and P5P, with mag citrate, and compounded Melantonin, last night and honestly had the worst night in weeks, go figure..

      • Michelle said:

        Hey CK, sorry to hear the P5P and taurine weren’t helpful for you! One other thing you may want to read about is L-glutamine. It was the next thing on the list for me if I wasn’t getting results with anything else. L-glutamine counteracts L-glutamte. L-glutamate is excitatory and can also become inflammatory without enough L-glutamine calm it’s effects. You could check it out and decide if it might help you or not. I can’t say I’ve tried it yet because I’ve done pretty well with the taurine and P5P, but I still find I get some weird sleep issues (although much milder) if I am sleep deprived, which never used to happen at all. So I may give it a shot as well, although being that I have mild effects and only on occasion, if it were to help me with the last of the issues I’m having, I couldn’t say that it would definitely help you. But it’s something to consider. I really hope you can figure it out.

      • Thanks Michelle, Sorry I should’ve made it clearer. I was having a little success with Taurine and Magnesium then decided to get taurine made at the compound chemist and took it last night and had some weird head arousals and what felt like a racy heart. I then decided to take P5P and see if I had any luck but I think by then it was too late. At the moment I’ve only taken in 1 night and that was after things started with this crazy head of mine. I’ll go back on the other Taurine which is from orthoplex. Maybe the compound chemist one is too strong. I’ve also had Gaba compounded but took it one night and it gave me weird head arousals. Again, I don’t know if it’s just timing or coincidence that when I decide to try something I get a stupid outcome. Like I said my jerks are milder but I just cannot seem to get past this 4 hrs stretch of sleep even when I’m on or off meds. It’s good to hear you are going well. Keep us updated and thanks for the l -glutamate tip.

      • Michelle, wanted to ask, have you had any experience with Gaba, gamma aminobutyric acid powder? I know you’ve tried plenty of stuff.

      • Michelle said:

        Hey CK, I think I posted here before about Gaba supplements. I did try it for several weeks and it did nothing, but I read that is because it doesn’t cross the blood brain barrier which is where it’s actually needed. The natural form of Gaba our bodies produce is produced in the brain. And taurine and P5P are both Gaba precursors that do cross the blood brain barrier and can help support our body’s natural production of Gaba. I suspect this is why they are working for me. P5P shouldn’t have any negative effects because it’s simply an active form of vitamin B6. Regular B6 is an inactive form and our bodies break it down into the active form which is P5P, so having any kind of reaction would be pretty rare I would imagine. I would say if you’ve had some success with the other form of Taurine, definitely go back to that if it seems like your body reacted badly to the compounded form. Gotta do what works best for your body!

        Just to be clear as well, I mentioned L-glutamine as a recommended supplement, NOT L-glutamate. L glutamine is inhibitory and calming which helps counteract the effects of L-gutamate which is excitatory and causes more firing of neurons. Just wouldn’t want you to mix them up and take glutamate and end up having even more issues!:)

        Have you ever tried valerian for helping you sleep longer?

      • I tired P5P last two nights. Not sure if it is coincidence yet or not. Slept pretty well. I only took 50 MG. Michelle, how much do you take? it seemed to wake me up earlier but I have plenty of energy today.

      • Michelle said:

        Hey Mark, that’s great if it is helping:) I take 100 mgs. I don’t know if there’s a specific dosage and I can’t remember if I read the bottle for recommended dosage but that’s what I’ve been taking. Keep us updated on how it’s going.

      • Michelle said:

        Hey CK, I was just doing some more reading on this. Apparently in some people, melatonin can cause sleep twitching. I have not been taking melatonin recently but I was taking it in a sleep supplement called Ortho Sleep that is a combination of different sleep herbs such as valerian root, and melatonin PRIOR to the start of my sleep starts and twitching. I work night shifts so I thought it would help me sleep fall asleep better since I sleep during the day. I also took it a few times hoping it would help me sleep when I started getting the sleep twitches but it didn’t seem to help so I stopped taking it. I can’t say if the nights I took melatonin were worse or not in regards to the twitching I experienced because I didn’t know there was even a possibility of a correlation so I never thought to take notice.

        Here’s the page I found about it (http://factmed.com/study-MELATONIN-causing-MUSCLE%20TWITCHING.php), and while the instances overall of twitching were a low reported side effect, nonetheless, there are people who have reported it. I also read the comments and one lady said her daughter began having myoclonic seizures (similar to sleep twitching and sleep starts) and sleep apnea after taking melatonin. Another reported similar nighttime seizure activity. It also appears from what people said in the comments regarding sleep seizure activity that the effect started after using melatonin but didn’t stop immediately after stopping the melatonin. One guy that said he was having petit mal sleep seizures said they began after taking melatonin and continued for a week afterwards. I wonder if it’s possible, in people that are affected with sleep twitches that supplemental melatonin has a different effect on the brain than regular melatonin and if maybe the longer you take it the longer you could have these twitching effects or if maybe it somehow chemically alters the brains other neurotransmitters in some way.

        I also read that melatonin is only needed by the body in doses less than 1 mg, but most melatonin supplements are anywhere from 3-10 mgs. Also they do not work the same as natural melatonin in your body because they hit fast and wear off fast where as the melatonin your body naturally produces increases slowly and gradually decreases as the night goes on. It is also triggered by darkness and wears off with light so as daylight begins the melatonin effect stops pretty quickly. Also melatonin does not help you to stay asleep longer, it only helps to improve sleep onset, that is the time it takes to fall asleep. If your room is dark and you avoid tv or computer use (false light that can prevent your body from producing it’s own natural melatonin) your body should naturally produce the amount of melatonin that you require for falling sleep. Melatonin appears to be more recommended for people that work shift work or have abnormal sleep times because it often means going to sleep during daylight, in which case the body’s natural melatonin production is halted. I use a black sleep mask for my eyes and I have a black cover on my bedroom window that allows minimal light in, which I didn’t used to have so I think it’s made a huge difference in my ability to fall asleep during the day.

        I would encourage you to give the taurine and P5P another shot, but stop taking melatonin. Maybe stop the melatonin for a week or so and then try the P5P and taurine. A sleep supplement such as valerian might also be a good option in place of melatonin because it is a natural sleep sedative so works like a natural sleeping pill as opposed to melatonin which is only meant to regulate sleep onset.

  43. Just seeing if this works as I haven’t received any emails for a while.

    • Hi Kira.

      Yes it does. How are you going?

      • Oh good it’s working! I’m doing ok. Still taking 0.5 Klonopin every night to every other night. Only thing that has worked. Wish I could just sleep like a normal person though. I’m sure everyone in here wishes that though. How are you doing?

      • Hi Kira, how long has it been for you now? I have good days and be days. I’m averaging 4hrs med free most nights but sometimes need a sleep aid. I too hope that one day it will get back to normal. I’m 12months next month. Have yiu tried anything other than clonazepam? I definitely believe it made mine worse at the time but that just could be me.

      • Hey CK. I’ve been going through this for about three years now. Clonazopam was the only thing that worked so I’ve just stuck with it. I’ve never been off of it. Sometimes I’m tempted to go off but I’m pretty sure I won’t be able to sleep without it because even now once in a while I’ll have a few jerks before I can actually fall asleep. I’m almost convinced that a virus caused mine and maybe this is the case for many people. I say this because I was sick when it started and have read a few times that a virus is a possible cause. This or a brain lesion..lol Read below: (I copied/pasted this). The first bit of info is based on narcolepsy but it’s interesting how it may be related especially that it talks about a virus in the end……

        People with narcolepsy have been found to have reduced levels of a neurotransmitter chemical called hypocretin in their brain. Hypocretin helps to control your sleep-wake cycle. In someone with narcolepsy, lack of hypocretin is thought to play a part in the rapid switching between being awake and entering REM sleep.

        It has been suggested that narcolepsy may be a type of autoimmune disease where there is damage to the cells in the brain that produce hypocretin. (Normally, our body makes antibodies to fight infections – for example, when we catch a cold or have a sore throat. These antibodies help to kill the cells of the germs (bacteria), viruses or other germs causing the infection. In autoimmune diseases, the body makes similar antibodies (autoantibodies) which attack its normal cells.) It has also been suggested that other things such as a virus may trigger the damage to hypocretin-producing cells in susceptible people.

        Here is another interesting piece on brain lesions (I included the link to the website at the end as there is a bunch more info on hypnic jerks)…..

        Brain lesions: Some research shows that hypnagogic jerks may be more likely among those with brain lesions. Among individuals with neurological conditions, lesions to the pyramidal tract of the brain may lead to increased rates of hypnagogic jerks. Researchers believe that lesions to this particular region may result in uninhibited motor movements upon sleep onset.

        The brains of individuals without lesions are more likely to inhibit the motor systems (pyramidal tract) of the brain as we transition to sleep. Those with lesions to this particular area may be unable to inhibit the motor systems as a result of the injury or damage.


        I hope this info is a little useful. I know it almost feels useless when really we need medical professionals to figure this out not is but I’ve learned over the years that you have to be proactive and look out for yourself and never give up.😊

      • Mine have been 3 yrs like Brian . Everything changed since then in my life . I have stated this before but testosterone therpay started mine or made me notice them . If I were to get back on it as I’ve tried 4 times I would jerk off. the bed . Cns is involved somehow . In my 3 yrs there has been times where they have complete gone . I always do something to bring them back . Drinking alcohol definitely brings them along with coffee . Zero debate . It is amazing . After 2 night of p5p it has worked we will see . Definitely gives me more energy in the day .

      • Good to hear Mark. So you are taking P5P at night I gather?

      • So P5P seems to be working for me also. I know it is because I use the fitbit app and My restless events has dropped dramatically and I can tell I am not waking up and if I do I am not twitching trying to fall back asleep. But it seems so far it is making me so tired. I took a 3:30 minute nap! Maybe I am taking much at 50 MG. I take it in the morning. I may start taking it at night. Certainly I am surprised it seems to be working. Hope Michelle sees this.

      • Michelle said:

        Hey Mark, that’s awesome that P5P is helping you. I checked and P5P/Vit B6 can cause drowsiness. This is what I found “Your body needs adequate B6 in order to produce serotonin which is required for the sleep-triggering hormone called melatonin.”. So if it’s making you drowsy I would definitely suggest taking it maybe an hour or so before bed. If that doesn’t work you might want to try a smaller dose.

        Strange, I take 2 x 50 mg pills both in the morning and at night and I’ve never noticed myself feeling drowsy. But I have been sleeping well. It could be that my body just needs more if I have a deficiency or possibly that I just tolerate it better.

        Hopefully taking it at night before bed will work better for you.

    • Hi Kira; Just wondering how much sleep you get and is it fragmented sleep? You’re taking the same dose I am except I do alittle different, some nights .25 mg. I take the generic clonazepam and same as you, it’s the only thing that gives me a few hrs sleep most of the time without leaving a sleep hangover like I’ve had with other stuff. I have sleep apnea and have been trying a cpap mask for about 6 wks now, what a trial and error trip that is! I started taking it every night last Feb. to help me tolerate sleep apnea therapy.

      • Hi Sylvia. I usually get a full nights sleep. My Rx is 0.5mg but I threat a pill in half and take that one night and then I’ll skip the next night and so on. It works really well. I will however, once in a while, have nights where it’s quite fragmented. Not sure exactly why. Maybe just being hot and uncomfortable. But when I do have a fragmented night, I will usually take 1/2 a pill to whole pill the next night and I’m fine again. So perhaps my body needed more of the med. I will skip nights sometimes if I’m doing well so maybe this when my body is saying I need more meds. I don’t know. It sure sucks having to take meds to sleep but the cards have been dealt! Do you have sleep apnea? Or did they just want to check for it? I don’t have that…just this stupid sleep start bullsh*t lol. I have been reading some posts on here about P5P working for some people so I might give that a try. It seems to have many good properties actually.

      • Yes try the p5p almost had to be working my sleep first night changed and it’s been 7 nights now no jerks maybe just a little . It seems to make me tired . It’s doing something no doubt .

      • Hi Kira; Sounds like you take less of it than I do and not every night. That’s what I’ve been striving for but it’s not easy after taking a dose every night for the last 3 mos. to help me tolerate sleep apnea therapy. Now days, an intermittent .5 mg dose usually gives me 5-6 fragmented hrs. I was diagnosed with sleep apnea in Feb., and it’s severe when I shift to my back off and on during the night. But then I also snore off and on even while on my side so the slumber bump belt they started me on didn’t help much. So now I’ve been on cpap for about 6 wks and it seemed to be helping alittle off and on, making me feel sleepy and actually falling asleep 2 or 3 times in the afternoon and feeling sleepy at night (which before was very seldom). Before I tired but wide awake while averaging 3-5 fragmented hrs sleep, This was most of the time since late 2012. Doctors put me through all these tests but I know now that symptoms I’ve had are all inflammatory and most likely caused by ongoing untreated sleep apnea. In 2013 and 2014, doctors tried to treat the chronic insomnia with Trazadone, Lunesta, meletonin (yuck!), supplements, hormones, none of it worked for long if at all. Then the jerking, head noise, and restless leg attacks started in Sept 2014 and got more frequent so I saw a neurologist and finally gave in to clonazepam. Took it .5 mg 2-3x a week all last year, sometimes less. Will see the sleep doctor this week, so he can review my sleep (or lack of sleep) data and decide where to go from here. Will get his advice on using the clonazepam and the tapering I’ve been trying to do. I know I’ve been trying to taper too fast, it must be very gradual but I thought maybe I could get away with it because of using cpap therapy. I was wrong. I’m thinking you take so little (and sleep all night long) that maybe you could very gradually taper off to nothing and still sleep at least 6 hrs. I don’t know about you but 6 hrs every night is enough sleep for me. But then when I was younger (under 50), I needed more sleep than that to feel okay. When I take the benzo intermittently and vary the dose, just like you, I constantly go through slight withdrawl and adjust. When tapering results in hypnic jerks and being awake most of the night, I go back up again rather than suffer that much. It’s all trial and error figuring out how to taper off for good; patience, patience!

  44. Michelle said:

    On another note, I saw my doctor today. I had mentioned earlier that I saw a neurologist and he told me he would send the info to my doctor and recommend an overnight sleep study (polysomnography). So I saw my doctor about this last week to follow up and told him I was following up because the neurologist had told me he would recommend a sleep study for me and send the info to my family doctor. My doctor responded that I have symptoms of anxiety and depression. I told him if I am anxious or depressed at this point it’s because I’ve been dealing with these issues for the past year and doctor’s keep ignoring me and claiming it’s all anxiety when to start with I had zero anxiety and zero depression and now my problems are only worsening (I have not told him about the P5P or Taurine). I want a sleep study done because it measures your brain waves while you sleep and can show any strange activity as well as the twitching, basically proof that this isn’t an anxiety or depression issue.

    So after referring me to this sleep specialist he claims that he received a letter back from the sleep specialist, who incidentally has never even met with me, who stated in this letter that I have psychological issues and need to be referred to a psychiatrist.

    I nearly lost it. I laughed and told my doctor that is total bullshit. I told him I don’t have psychological issues and that so far my experience with doctors tells me that they spend 8 years in med school to learn how to tell everyone with an issue that the doctor’s can’t immediately identify that they have anxiety and depression and try to push drugs on them. I told him that a doctor who has never met me claiming that I have psychological issues is a bullshit diagnosis. I told him after a year of looking for a doctor who would at least pay attention, he (my current doctor) appeared to be the most promising so far in wanting to help me, but I had little doubt now that he would because he is now just getting on the “psychological bandwagon” because he is at a loss to find a true diagnosis and cause for my sleep problems and is unwilling to take me seriously enough to bother getting me the help that I need and that was recommended in the first place, and I said that is completely unacceptable.

    I was so pissed off. Here in Canada all medical systems are connected, so every doctor sees what the doctor before wrote. I have this crap permanently on my medical records and every doctor I see from now on will see that and will automatically have a predetermined opinion of me based on those notes. Funniest thing is I have a degree in psychology and work in the mental health field, something my doctor also does not know. So basically they think I’m just going to swallow their bullshit diagnosis and agree to medicate the crap out of myself with medications I don’t need that only serve to further mess you up. No thank you!

    So after basically ripping him a new a–hole, my doctor says “fine, how can I help you then?” I told him he can help me by referring me for the clinical sleep study like the neurologist recommended in the first place. So then he reads the notes from the neurologist to me out loud, and I find out the neurologist lied to my face. He told me he would recommend the sleep study to my doctor. I asked the neuro why he couldn’t so it himself, he insisted it should go through my doctor because then my doctor could continue to follow up with me. My doctor read what the neuro wrote which was that my sleep issues were a result of hypothyroidism and anxiety. There was no mention of sending me for a sleep study. My doctor then said if I REALLY want he will refer me for one. I told him I do REALLY want. He then printed of a referral form and I said to him “So this sleep study is an actual overnight study IN a clinic right?” And he says “No you have to do the shorter sleep study first and they will send you home with a machine.” I told him I’m not an idiot, and the shorter study only detects sleep apnea, snoring and heart rate, and I had already gone for one and was told I had mild sleep apnea, but that when I tried a CPAP it didn’t work for me because it literally pumped air into my stomach. So he then was left with no other choice but to refer me for a real sleep study. So he’s online googling it and he comes up with a sleep study that is run in a clnic by a PSYCHIATRIST and he can’t even hide the absolute glee on his face that he has now found a way to force me to see a psychiatrist. So that’s where I’ve been referred to. Fucking idiot is all I can say.

    I’m so done with doctor’s it’s not even funny. I am now in the process of requesting a copy of all of my medical records so I can see exactly what they have been recording on my file, and request to have inaccurate information removed. It’s basically like having a black mark on my record that will change the way every doctor I see treats me.

    • Hello Michelle,
      After reading your post, I had to comment. That is the same thing that happened to me. I saw my primary care physician (I live in USA, California) and after talking with me for only a few minutes decided I was bipolar. I’d only seen this doctor twice before, for heartburn and back pain. I then went to get a second opinion, and that doctor wouldn’t listen to me at all and told me to see a psychiatrist. So…I saw one, and she helped me out by prescribing Ambien and then referring me to a neurologist who specialized in sleep movement disorders. She was the only one who believed me. The neurologist had me do an overnight sleep study and my brain waves showed the hypnic twitches were real, not in my mind.
      I then got on Yelp and wrote scathing reviews for both doctors; one got buried (so I wrote another one, and that one was buried too) and the other is still up.
      In conclusion: doctors don’t like being baffled by illness/injuries/conditions they don’t understand and like to chalk it up to ‘mental problems’ so they feel better about themselves.
      The first doctor continued to send me a bill after the fact (and after I’d paid over $6000 in medical bills for everything else) and I sent him a letter telling him exactly what I thought of him and his poor diagnosis. The bill kept coming until I scrawled things like ‘Monster’ and ‘You should be ashamed of yourself’ all over the empty envelope I sent, and that was the last I heard from him.
      Keep pushing, keep being your own advocate, and don’t listen to what the doctors say. You know yourself, your mind, and your body. Don’t let anyone tell you different.
      Take care,

      • Michelle said:

        Hi Brian,

        Thanks for the encouragement. I am lucky I found something that works for me by doing my own research. The only reason I continued following up with my doctor was to try and get this “anxiety”, “depression” and now “psychological issues” cleared by having actual proof. But my doctor is playing games. It’s comforting to know I’m not the only one who has been through this crap.

    • Jessica said:


      I can sympathize. A doctor got me in this mess by giving me clonazepam for mild insomnia when my youngest was waking every 2 hours. I wad told by that doctor that my jerks are anxiety related (her answer to my problem was to increase the amount of poison that was causing them). I have seen many doctors since these jerks started and most tell me that I need a psychologist or sleep study. I’ve done both, and both have led nowhere. Hopefully a sleep study will prove something for you. It’s a frustrating nightmare to have this crap. After 8 months off of clonazepam, I am starting to have nights here and there where I only jerk a little. But, I’m still suffering really bad most nights. I had jolts and spasmning several times a minute last night. I wish I were exagerating. I’ve given up on finding a doctor who can help me.

      • Michelle said:

        Jessica that’s interesting. When I continued having trouble sleeping and my doctor kept trying to tell me it was all due to anxiety, he finally asked me if I wanted a sleeping pill to help me sleep. I had previously turned them down because I don’t like taking medications. But I finally agreed. And he gave me clonazepam. I went home and looked it up online and noticed it’s for anxiety as well as sleep. Which is why I say my doctor is playing games with me. He thinks I’m too stupid to notice that the “sleeping pill” he gave me also doubles as anxiety medication. Or that the sleep lab he is sending me to is also run by a psychiatrist which I had refused to see because he was saying it’s psychological issues not physical. He wanted me to take clonazepam every day 1-2 tabs before sleep. The pharmacist told me he doesn’t like that medication at all and suggested I try just 1/2 a tab to start with and advised me not to take it every day. I said “thjat’s funny because my doctor told me to take it every day”. Idiot doctors.

        Have you tried the p5p? it seems to be helping some others here including myself. Maybe it could help you too.

      • Hi Michelle, I’m glad you and Mark are finally getting some relief. I got the “anxiety” line too, more than once but only one doctor said it to my face. She had run me through several tests, treated me for a bacterial infection, then talked down to me, saying there was nothing wrong with me other than anxiety. I don’t have anxiety at all. Think she was pissed because she’d run me through the expensive tests and it turned out to be a wild goose chase. They did diagnose mitral valve prolapse which may also relate to sleep apnea. Then the neurologist I saw (who supposedly specializes in sleep), runs me through a brain and neck MRI, a balance test (for tinnitis), and prescribes clonazepam. This one didn’t tell me I had anxiety but that’s what he documented to justify the prescription. By default, I was eventually passed down to a new NP. She questioned me further and suspected a breathing disorder. Imagine that. Lucky the pharmacist watched out for you.

      • What kind of breathing disorder Sylvia? Dying to know what you meant there.

      • Long story here. Yes, last Feb.,a neurology NP said I may have a “breathing disorder” after I mentioned that my husband had recently complained of loud snoring and I also described the fragmented sleep with vivid dreams I’d been having. I questioned her about being referred to a sleep clinic because I had previously been referred for a sleep study back in 2004 (for insomnia) and remembered what they’d told me. The sleep doctor looked at me and got irritated at my gynocology NP for sending me there. He says; I can tell by looking at your neck that you don’t have sleep apnea. But since I was already set up, they put me through the sleep study anyway. Later I called them and a nurse there told me I had obstruction and to stay off my back (by attaching a tennis ball). She did not tell me I had sleep apnea. I thought at the time no problem because I always slept on my side anyway. After that the gyn clinic treated me with hormones for awhile and insomnia was gone within 3 wks. Everything was good until around 2009 I started waking up on my back. Thought nothing of it because I still slept and felt okay. In 2010 I started feeling unrefreshed from my sleep with mild insomnia off and on. Remembered the sleep clinic nurse and tried the tennis ball (inside a sock) pinned to my upper back. Woke up during the night, struggling to get on my back and messed up my shoulder alittle. Didn’t try again since my sleep was mostly normal again until another transition in 2012. In 2013 I started seeing doctors again and ended up finally at a sleep clinic this year. I have read that sleep apnea is only one of various types of sleeping disorders. Another one is shallow breathing and it’s called UARS. I’ve read that it’s harder to detect in a sleep study and harder to treat than sleep apnea. I’ve read comments by people who’ve been diagnosed with it.

      • I’m on Cpap also it is called upper airway resistance syndrome uars. Look up dr Steven parks I bought his book . Sleep interuppted . I think I have that also . I could talk for hours on it but won’t . I’m sick of it .

      • Mark, I came across Dr. Steven Parks website awhile back. Think that’s where I first saw that orthodontic work can eventually cause sleep apnea due to the missing teeth making the jaw recede. I had extensive orthodontic work to correct overcrowding when I was a teenager and that could be the root cause of my tongue obstruction sleep apnea. I looked up his book on Amazon and read a few reviews. I think the book was written several years ago and am wondering if there’s a newer edition update. I’ve thought about buying it but I have another sleep apnea book to read first.

        I saw my sleep doctor yesterday for a quick followup (always hurried). They had loaded my SD card and he said I was doing good. Not sure what all they can see on that card, any more than total usage and AHI? Do you know if they can see the number of hrs of actual sleep? THere were nights I’ve used cpap for 5-6+ hrs with only 3-4 hrs sleep or even less. I use a light dose of clonazepam but try to taper off intermittently so I don’t exceed .5 mg. That means usually less sleep on nights using .25 mg.

      • Jessica said:

        No, I’ve not tried the p5p. I will look into it, thanks. How long have you been on clonazepam? How long after your symptoms started did you start on it? Have you noticed any changes in your symptoms since taking it?

        It seems that most here on this forum don’t have nearly as many symptoms that I have. I currently suffer with the most debilitating form of this crap (1 hour sleep last night) and I have burning skin, fast heartbeat, depression (from no sleep) and fatigue. These are all withdrawal symptoms, even 8.5 months after stopping them! It’s very exhausting. Obviously, I’m very sensitive to these meds and should have never touched one.

      • Michelle said:

        I think I have taken it maybe a total of 3 times, and always days apart. Since taking the P5P I no longer need anything to fall asleep or stay asleep.

        Reading your post made me do some more reasearch. And I came up with a very long article on pyroluria and how it is helped with taking P5P. Pyroluria has a whole long list of symptoms, and a ton of them fit me. Pyroluria, to put it very simply is a liver defect. What got my attention when I read the article is that it specifically mentions that if you have pyroluria, your liver has a harder time breaking down and detoxifying medical drugs. Vitamin B6 is broken down in the liver into P5P, so if you have pyroluria your body won’t be able to break it down sufficiently into P5P, leading to a P5P deficiency

        So I’m just throwing this out there, as I have no idea if that is your problem or anyone else here, but maybe taking clonazepam overstressed an already malfunctioning liver. Taking P5P helps solve a lot of the problems caused by pyroluria so maybe it could help you.

        I haven’t touched medication since I realized the P5P and taurine combo I was taking was working for me. I am curious now to cut out the taurine and see if it’s just the P5P that’s working. That article even lists some childhood conditions that a person with pyroluria could have and I have a lot of them, so I find it all pretty interesting.

      • Michelle, you taking P5P at night also? How much again? I know it’s in a post somewhere.

      • She is taking 100 MG. I am taking 50. Seems to be working. But for me, it makes me tired or that could be a coincidence. Try it and let us know. I take 50. Which is not a small dose.

      • Ok still taking it in the morning? Mine are practitioner brand and believe are 36mg each tab.

      • Day or night mark?

      • Morning makes sense to me because it increases seretonin

      • Michelle said:

        Hi CK I take 100mgs morning and night.

      • Thanks Mark and Michelle. I’ll try it at night also.

      • This may be a silly question but how do you get P5P? Does your doc have to prescribe it? Or can you buy it off the shelf?

      • Google is a great resource . It is otc over the counter .

      • Michelle said:

        Any health food store that sells vitamins should also sell P5P. You can also get it online as Mark said. No prescription is needed.

  45. Michelle said:

    Here’s the article if anyone is interested in reading it.


    It links the P5P deficiency with deficiency of neurotransmaitters which causes nerves to misfire. Really interesting.

    • I’ve also tested positive for that h. Pylori bug again. Dr says I need another course of antibiotics. This is the second time. I wonder if it has anything to do with it for me.

      • Michelle said:

        Hey CK,

        Pyroluria is different than H. Pylori. But I previously suspected I had H. Pylori a few years ago and did a ton of research about that as well to find natural alternatives to getting rid of it. The antibiotic route is really hard on your body because the antibiotics are strong and H. Pylori becomes very antibiotic resistant because it takes multiple rounds of antibiotics to kill it off and in the meantime all of the good bacteria in your stomach gets killed off along with it, making you even more susceptible to illness. H. Pylori can also cause a deficiency in Vitamin B12 because it prevents proper absorption of it in your stomach, which can leave you feeling even more tired and depleted than you already are with your sleep issues.

        So if you are interested, here are some things that can kill H. Pylori naturally without killing your body at the same time:

        Mastic Gum has been successfully used by a lot of people to kill H. Pylori. It needs to be taken for at least 1-3 months. It should not be taken if you have already have an open ulcer. If you have an open ulcer one way to help it heal first is by taking cold pressed virgin coconut oil daily for a month and then start taking the mastic gum afterwards to kill the H. Pylori. Mastic gum is easily found in health food stores (or online). It is best taken with water on an empty stomach and allowing some time before meals.

        Matula Tea has also been successfully used for H. Pylori and some people take it in combination with mastic gum. Matula is not cheap (at least not what I’ve seen online) so you may want to give mastic gum a try before resorting to trying matula.

        Oil of oregano is another one that helps with H. Pylori. Best taken in juice to dilute it a bit because it’s strong stuff. 15 drops twice a day is what I have read is recommended, again before eating any food.

        Keep in mind if you start taking these things to kill of H. Pylori there is a good chance you could feel sick for a few days or experience some nasty symptoms like diarrhea or stomach upset, flu-like symptoms etc. These are not a result of what you are taking, they are not side effects. They are a result of die-off symptoms when the bacteria begins to die. It’s basically like your body is suddenly detoxing from a very harmful thing, so you could definitely feel sick before you feel better. But it’s worth it to get rid of this nasty bacteria because you could take round after round after round of antibiotics only to have it repeatedly come back. To deal with die off symptoms you could try an off-off schedule of taking this stuff, like 5 days on, 3 days off, or something similar. Also, if possible, cutting out sugar and bread/grain products for a month or so while you are doing this could help as well.

      • Thanks for the all the info Michelle. I will try the alternative way, as yes they want me to take another course of antibiotics again.
        Are you still taking the taurine and magnesium? Is P5P still working well for you?

      • Michelle said:

        Hi CK, I am still taking both the P5P and Taurine with Magnesium. They are still working well. The only time I have any problems now is when I am really sleep deprived. Working nights, I flip to days (normal people’s hours) on my days off. To do this I have gotten in the habit of staying up 24 hours straight to slip my hours. I think I will need to stop doing this and maybe try coming home on my last day off work and sleeping maybe 4 hours or so and then getting up and going to bed that night at a normal time. That way my body won’t get so sleep deprived on those flip days.

        Is the P5P still helping you? Have you tried anything else besides the melatonin to try lengthening your sleep?

      • Hi Michelle,
        My jerks have definitely lessened and it’s now more a case of sleep maintenance. I’m stuck on this 4 hrs and if lucky 4.5. I’m taking P5P now in the morning and night. I think it’s 60mg and getting to sleep quiet easy. I think it’s doing something and might try the compounded sublingual Melantonin I have when I get up. I just don’t like introducing more things when things are going ok. I have some homeopath called quietude which I might try.

      • Anonymous said:

        P5p definitely makes me sleep . No doubt . My buddy is taking it makes him sleep also . We both use the Fitbit to compare . He doesn’t have hypoc jerks though . But for me I feel like total crap the next day on it even though I’m sleeping . I have wild vived dreams on it . Every time I take it I need a nap the next day . Everyone is different but it’s odd that it has that effect on me .

      • Michelle said:

        Anonymous how much are you taking and how often? P5P is an active form of Vitamin B6. I have read that lack of remembering your dreams is a side effect of both B6 and P5P deficiency, so it’s possible that you are now remembering your dreams more or they are more vivid because of taking it.

      • That was me …. Yeah but I have read remembering dreams a lot means you are waking up to remember than also …. It is a debate . Dreaming all night is not good at least for me I’m exhausted next day . And I am totally exhausted when I take even 25 mg of p5p but it does take the jerks away . It’s nuts

      • Michelle said:

        Hi Mark,

        I am still learning and researching and of course everyone is different. In your case I might try cutting your 25 mg dose in half, even if it means you have to break open a capsule and split the amount in half yourself and just see what happens, if it still helps the jerks to stay away and maybe reduces your exhaustion during the day.

        I have done some more reading and some people need to start really low with P5P and work their way up, or stay at a low dose. 25 mgs might still be too high for you.

        Also have you ever had your B12 tested? Daytime exhaustion can be related to B12 deficiency. I would imagine if you might be low in one B vitamin you might be low in another. They all tend to work together somehow, probably why B vitamins are thrown together in a multi complex B vitamin.

        I also wonder if because P5P helps neurotransmitters to work again in some way, maybe yours are still “balancing themselves out”. This is another reason why it may be best to start with a lower dose and see how you tolerate it over time.

        The best thing you can do I think is try slow and small adjustments and experiment to see what works for you. I can keep researching and offering ideas, but ultimately only you can know how you feel so maybe try experimenting with different dosages or with adding B12 or a complex B vitamin.

      • Michelle said:

        Hi Mark,

        One more thing, you may want to have your iron levels checked, even if they were checked before. I just read this: Symptoms of B-6 or P5P deficiency may include: anxiety, seizures, involuntary jerking movements or tics, neuropathy, iron-deficiency that does not correct with iron-rich foods or iron supplementation, elevations in homocysteine.

        Iron deficiency could leave you exhausted as well. My thought on this is maybe you weren’t sleeping before due to the jerking, so you thought your exhaustion was a result of no sleep. Now you are sleeping but feeling exhausted during the day, so it could be the jerking and insomnia could have been covering up exhaustion possibly caused by iron deficiency, and now that the jerking is resolved, you are still left with an iron deficiency and it could appear as P5P causing your exhaustion when it could be iron. Again, just a theory. But might be worth having your iron levels checked.

  46. Hello, I started taking L-triptophan. Here is a link to it in web https://en.m.wikipedia.org/wiki/Tryptophan
    They say it is precursor to serotonin and melatonin. I have noticed that it makes me more drowsy and helps to fall asleep

    • Makes me tired also . For about a week after I take it ! Sucks . So does p5p makes me unable to function in the day. For days .

      • I’m also feeling tired but mainly due to lack of sleep I guess

      • Can’t say it makes me tired. Lack of sleep makes me tired. How many hours sleep are you getting on P5P Mark?

  47. Hi Alex, Just wondering if you posted on here last October? That posting by “Alex” mentions years of insomnia and then jerking awake started in? I remembered it as being most similar to my situation. Also mentions sleep apnea as a possible cause. Did you ever have a sleep study?

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