About

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

My dream is to sleep again.

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

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

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

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

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

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

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

331 thoughts on “About”

  1. How’s the nac working

    • So far so good. I have been reducing the dosage, and seeing how frequently I have to take it. I seem to be able to take 3600mg on say a Saturday, and I am good until Tuesday or Wednesday night. Then I take another 3600mg and make it back to Saturday night.

    • I did two sleep studies. They see sleep disturbance but they do not understand its reason nor specific treatment. So, no use in my case

  2. Manwhocannotsleep is the nac seeking for you?

  3. Working****

  4. ty for reply,keep me posted i hope maybe one day we get closer to resolving this i tryed krill oil it works on and off.keep fighting everyone =) one day we will figure this out.

  5. mark are you still using xanax xr or did you swicth to depakote??man whio cannot sleep have you tryed sugar glucose free diets yet like ketogenic diet designed by mayo clinic and are you still on clonazepam,and how is the nac working is it working at all?

    • I quit Zanax because when uncut it back I had terrible withdrawl symptoms . It definitely works on the jerks though . Now I’m trying Klonopin with some success not nearly as strong as Xanax xr . I read many places Klonopin plus sodium valporate is good option

  6. another thing i must put down about the sugar free diet is you cannot consume carbs either its no sugar at all its like if your a diabetic,so you eat allot of meats no starchy foods potatoes,nothing tomatoes has sugar in it stuff like that all meats and greens.

    • Google propriospinal myoclonus at sleep onset. Spouse has had this for years — used alcohol to get to sleep for 20 years — alcoholic now sober for a decade! But sobriety unmasked bipolar II and MYOCLONIC JERKING for usually 2 hours nightly until we could override it usually by holding his head down. He went to a renowned epilesy specialist in 90’s–told he was doing it to get my attention–left her office in despair and got a double brandy and took train home. He never went to any doc without me after that. Fortunately a good neuro psychiatrist put him on Depakote for bipolar which also helpful with jerks. Years later after using multiple

      • Sorry I’m so long winded but I may never get back to this blog –fighting foreclosure pro se and have little time but googled the above propriospinal and your blog came up. This condition was unnamed until 1999 when some neurologists in a Florence Italy clinic studied it. Bottom line there is hope but it is more trial and error. Sedative meds help but be careful because repiration can be sedated too much! Xanax er also helpful. After spouse said no more meds–I researched for diagnosis and alternative remedies. Came up with 5-HTP and Valerian Root. They worked well for awhile but finally he h

      • 3rd iininsinstinstainstallment.He had to go on klonipin and frequently takes homeopathic sleep remedies over the counter by Hylands such as Calms Forte and one for restlesslegs that also helps with this condition — apparently as alpha brain waves begin to put you in a sleeping state something gets triggered in your spine and the jerking starts! I think concussion in the past and possibly difficult birth as in forceps delivery may be factors.

      • 4th try–Fortunately the brain is being researched big time now. The other cause that seems likely is the brain chemistry issues such as Gaba. Just do not give up. The rare times I have trouble sleeping I start praying for others and very quickly fall asleep — worth a try! Know you’ll be in my prayers and if anyone tries to say it is in your head–tell them they might be on to something and list out half a dozen brain chemicals that just may make them grateful they can lay their head down in peace and sleep. I would not wish this on my worst enemy. Find a neurologist that will listen to you–what you’re describing is not epilepsy–do a sleep study with no meds

      • I did my sleep studies on Lunesta..BIg Mistake.

    • OK last installment. Tried to cover all the bases. Do keep a daily journal of meds hours of sleep etc. If you can figure out your triggers if any it may make it easier to find a remedy. BTW I find Dr. Amen’s books very helpful — he’s a psychiatrist who researches brain injuries and uses brain scans to figure out what supplements and meds fit the individual–his clinics are in CA. He’s often on PBS. Excellent!! My spouse found routine very important along with other healthy habits. We were fortunate to have good insurance and a great teaching hospital in our plan. But it was my determined research one intense weekend five years ago that found “propriospinal myoclonus at sleep onset.” There are lot

      • 6th try! Smart phone terrible for typing! Just wanted to leave knowing I had shared virtually all I have learned in the thirty years of observing this dreadful condition syndrome disorder or disease! Just know there is a solution out there but alcohol will only make it and your life much worse. Find someone to watch you while you sleep who can attest to your symptoms and describe them in writing. BTW “Elsevier” website is great resource for sleep research! Gotta run. Hope something in this epistle helps. Prayers risin’! MJ

      • Final installment — we saw 9 neurologists with only myoconus at night creeping into day. This occurs also in a relaxed state as in watching golf. Vigilance is a word describing mental action that overrides jerking by making your brain active rather than relaxed but it does not allow you to sleep so at best it is temporary solution. The TV series House had an episode describing this — they described it as your brain reacts like you are dying when you try to sleep and jerks you awake–don’t know what year it was but it was interesting. Perhaps if you’re near a teaching hospital a neurologist might want to study

      • Thank you so much for your contributions. I really appreciate you taking the time to do it. I’m sorry you guys had to deal with this for so long. It can paralyze your life. Please keep in touch and I hope you can post here whenever you feel like it.
        Take care!

  7. im not really buying into the whle stress thing i think the spinal thing might have some merrit because when ever i jerk i can feel it in the back of my head in neck area a loud ringing sound and then a leg moves or a arm thats why i wnat to give corti co steriods a try if its inflamed get the inflamation down and urica we are on are way back to being normal lol.

  8. o one more thing before i forget i have found a place supposedly doesnt use benzos for the jerks and i think use different anti convulsants for them its called cleveland clinic foundation up in ohio and aparently they have a range of treatments for this problem,i think if i get the money and the time ill head up there see what they can do for me.

  9. mark are you able to controll them in some way that makes you think its anxiety,if you are share cause i dont think its anxiety at all because i did meditation and notta i did it for months lol.The thing of it it is we are on anxiety meds it should nock anxiety right out of the game no??

    • Yes you have a point . I swear im still not sure . Mine started when I got on testosterone therpay . Every time I got in it they got way worse . Some mwdications make them worse. It is so hard to say . It could be hormonal also . But it could be deep seated anxiety also . For example when I take xanax er as I said it will knock them out . If you supress the cental nervous system enough they stop I believe . But using benzodiapines like Xanax are dangerous long term I belive . That is why I say it is anxiety possibly . Try a calcium supplement if you have not. The fright is no one knows exactly what they are . Could be withdrawl from some kind of substance also . Any sunstance .

      • yes it is true that benzos long term are dangerous but i know someone who was on it for 15 years with insomnia and hes still ok id rather take the benzo lol and sleep then not take em and go five days with out sleep like last time,ive been looking into cleveland clinic foundation and i think they have the answers we seek,o and mark i think your right on with the hormornal thing its definately something to do with that,because when it was sunny where i live i got sunlight, and the sun boosts certain hormones and i was able to sleep without jerking for about 4 months but i had to be outside for 4-5hours in the sun a day for it to get absorbed vitamin d into the skin,so i think your right its definately hormone related and i think that the benzos are blocking certain hormones like serotonin and gaba receptors in the brain were the hormones are released or other receptors that we cant even figure thats why doctors are stupid and wont even give it a second look because they havent been deprived of sleep like us yet.When a md gets it itll be a different story then o theres a serious problem def con 3 lol.

      • Hi,

        Anxiety plays a big part, definitely. I’ve been living with this for approximately five years now non-stop.

        Here’s my story on how it started:

        This started following a panic attack when I was around 23 years old. That was the second panic attack I had my entire life and I’ve never had them. So I was more anxious that time about it because I didn’t know how to handle it. But I didn’t go seek any professional help because I always thought I can handle it on my own and with the support of my girlfriend, and I did. When it started I couldn’t sleep for one or two straight nights at any given time with non-stop jerks as I start to doze off. Which, by the way, exacerbates the anxiety and led to depression.

        Here’s the interesting part:
        After about 3 months on with hypnic jerks learning meditation, relaxation exercises, training my mind to be positive (Because I was a very pesimistic persion before that). Gradually, the hypnic jerks just STOPPED and I mean completely. No hypnic jerks for approximately TWO YEARS.

        Note that I didn’t take any kind of drugs that time. No supplements, sleeping pills, nor anti-depressants. I didn’t smoke and drink that time. So I believe substance withrawal isn’t the only culprit for this as I read in the comments.

        Then, the sad part is after experiencing another panic attack by around age 25 due to, I would consider a quarter-life crisis, I got them hypnic jerks back and got depressed again. I managed to heal my depression with what I previously did which naturally just watch my negative thoughts and turned them positive. No anti-depressants of any sort. The closest one I’ve taken was an anti-allergy (anxiolytic) which was prescribed by a cardiologist I went to due to not sleeping for three straight days and because I thought it might be a heart problem.

        The depression only lasted for around 4-6 months. And I know how to handle mind now and hasn’t had any panic attack ever since. I’m now turning 30 years old. But the hypnic jerk remained.

        Sometimes it subsides for a week then it comes back. The longest I’ve been without it is a month of just two jerks. But eventually it comes back now. I get by mostly with magnesium and calcium supplements, alcohol and meditation. On worst nights, I take clonazepam (0.5 mg). I only started it for almost a year now when I abandoned my hope that it’s gonna just fade like it was the first time. I’m still hopeful to find a cure. I’m actually pretty optimistic now. That’s one thing I learned with this illness, anyway.

  10. Ironically, for me it got triggered with anxiety and depression. But now that those two things have gone. The hypnic jerks remained and is the one who’s triggering anxiety at not of fear of not sleeping sometimes. Because when these jerks start, sometimes you can’t help but be anxious.

  11. just talked with another person with morvans syndrome that makes three now and they have the jerks onset of sleep!This is the beginning of morvans syndrome im telling you all,i have the twitching muscles during the day and night i got these damn jerks and on and off insomnia!Each case of morvans is different one might not have morvans but have isaacs syndrome each have different names and have the same symptoms.

  12. trying couple new things ill keep you posted i noticed that if i have allot of sea salt in my soup like organic chicken broth if i have soup during the day keep my salt intake up i have less jerks and also try to well i dont know if i should put this advice on here because if you use it in the wrong way your asking for few days of discomfort or more jerks or just plain insomnia but it has allot to do with this its kinda inapropriate to put on here,this specific thing that we all do affects are steroid hormones and three other hormones serotonin dopamine and the what i call unknowns.The salt intake thing has really helped though keeping it up.Im starting to see a glucose\salt balance going on here because so many people say alcohol either makes it better or worse because alcohol converts to sugar in the blood stream by the liver but it jumps your glucose levels through the roof.I tryed cyclobenzaprine intermixed with klonopin
    .1/2 miligram with 10mg of cyclobenzaprine.

  13. Poodlepal said:

    I’ve been exhausted at my new job and sleeping like the dead. Now, I’m off for a week, and I had quite a jerkful (attempted) nap, complete with snort jerking. I’m going to take a calcium magnesium tablet and hope for the best for tonight. Oddly enough, I’m pretty calm now. If it is anxiety related, for me, it is delayed anxiety==it comes on after a period of stress,not during. That’s also when I’m more vulnerable to panic attacks.

    I definitely think it is mainly anxiety related for probably most people, though not all.

    • Anonymous said:

      You on on to something. I know it is not completely anxiety related please trust me. It does not help it for sure however. Make sure not to take to much calcium with magnesium. Try this. Get the NOW brand of Magnesium and zinc. Works better than just calcium alone. Both together may be best.

  14. I’m getting a lumbar puncture done soon I’ll keep you all posted as to what they find

  15. i am pleased to find this blog/forum on hypnic jerks or myoclonus. i very much appreciate the effort in an attempt to find a remedy. FWIW, below is a brief of my case.

    i’m in my late 60s and until a couple of years ago, rarely if ever suffered from this condition. Since the jerks began, they have become progressively worse, often awaken me in the middle of the night and also awaken my wife. Duration has been about an hour, after which the jerks seemingly cease, enabling me to sleep in the predawn hours. In any case mine are not restricted to the time of falling asleep.

    Most recently it seemed to be connected to taking ambien for sleep. After weening myself off that hypnotic drug i found 95% relief after a few days of being off the drug. Lately, after a couple of months of relief, it has been creeping back, though with less intensity and perhaps less duration.

    Previously, i had tried stopping my statin which had some success for a short while. i am now back on a statin, aspirin, and ace inhibitor.

    i have tended to be persuaded by the idea that this is brain related. i have cerebral palsy but that a has been stable from birth, so i do find it perplexing that this condition would flare up so late in life, if indeed it is related to the CP.

    In my case, i doubt it has anything to do with anxiety.

    • Anonymous said:

      Having this for the last 2 years plus I tend to agree. May people will say it is anxiety. I believe it may exacerbate it a Tiny bit but not really. It is physical there is no question anymore in my mind about it. Medications can definitely make it worse or cause it.

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