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.

317 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.

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