Non-stop hypnic jerks/startle/twitching as falling asleep—-doesn’t stop all night! :(

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hello, ive posted on here about my relentless insomnia which has cause major sleep deprivation for over 5 months. i sleep an average of 2 fragmented hrs a night in separate blocks and i dream a lot. some nights i sleep zero. as of a couple weeks ago i have had non-stop startle/jerking just as im drifting off to a deeper stage sleep...my body really wants to sleep but it seems my mind keeps telling it to stay awake. sort of like its in danger if it feels it might actually fall asleep. i know this all started with anxiety, but now i dot feel so anxious, i am more accepting of my severely fragmented/non restful sleep...but it doesnt matter cause my mind keeps jerking me awake every few minutes all night . i know hypnic jerks are common and usually happen once a night ( i use to get them only once and then be able to know out immediately after, so theyre not scary)...but this is happening repeatedly dozens of times and every couple minutes. this doesnt seem normal at all, and it often keeps me up all night . neurologist just said "theyre normal jerks that make you feel like youre falling so your mind wakes you up"...okkkaayayy, but one after another after another for hours?! she didnt seem to believe me, either that or she had never heard of someone having more than a couple at a time.

anyone every felt this or know how to overcome this...will it ever go away?! im so scared. i hope i dont develop seizures or maybe have some other degenerative disease and this is a type of myoclonus

2 likes, 56 replies

56 Replies

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  • Posted

    i deal with this as well.. i literally cant get passed the jerks unless i take pills. ive been on them for a year now.. none of my doctors seem to have any answers either i cant imagine what im going to do when they take me off my pills...

    • Posted

      did they Rx you benzos? also, out of curiosity when/how did these start for you? was it after a stressful time in your life, after being on certain meds, were you having really bad insomnia prior , or just out of the blue?

  • Posted

    Oh how i can relate to these. I used to suffer them predominately in the neck, shoulders & arms. They would happen just as i would finally start to fall asleep. I would average and hour & a half to 2 hrs sleep everynight to the point i actually contemplated taking my own life because of it. It cost me my fulltime job (i resigned) because i could barely function & i worked in a hospital. I now take a benzo called clonazepam to keep them under control & i no longer get them. Only once in a blue moon. No known cause was ever found. Every case is different but often they will go away on their own but if not & there's no known cause (often there isn't) & they are interfering with your daily life, the only option is medication. Benzodiazapenes are the most common drug used to treat this kind of problem. Also severe sleep deprivation can aggravate them too. Good luck.

  • Posted

    hi michelle, thank you for the info. when/how did yours start? i am reluctant to take bezos cause i actually weaned off pf using them for 2 months...i actually think this is partly what cause them, but im not sure. benzo use and gaba depletion go hand in hand and the little that i know is that there might be a possible link between low gaba and an i crease in these jerks. did you have high anxiety prior to first having episodes of these? i kniw for me, chronic stress probably depleated my gaba and killed my sleep...then the cycle began, and benzos only helped minimally, only putting me to slepe 3-4hrs max. i totally know what you mean about feeling like giving up which all the sleep deprivation. how long where they going on before you decided to started taking the clonazipam? also, did your doctors rule out other degenerative brain diseases ? hope all is well, take care.

    • Posted

      Hi again. Mine started completely outta the blue. No rhyme or reason. I guess you could say that maybe there could have been some stress involved but i don't solely believe that stress is a major cause of these other wise just about everyone would be getting them all the time. Benzos do come with some risks, i agree with that but when you've exhausted other avenues, what else is left. In my case, this medication literally gave me my life back. I had every test done known to man with the exception of an MRI as i can't have 1 done due to a piece of metal in my head. As mentioned in my previous post, nothing was ever found wrong with my brain or it's wiring. My specialist said to me that often there is never a cause found, they just happen to some people. I was severely sleep deprived from them for about 14 months, 7 days a week. Imagine that!!

  • Posted

    hi michelle, thank you for the info. when/how did yours start? i am reluctant to take bezos cause i actually weaned off pf using them for 2 months...i actually think this is partly what cause them, but im not sure. benzo use and gaba depletion go hand in hand and the little that i know is that there might be a possible link between low gaba and an i crease in these jerks. did you have high anxiety prior to first having episodes of these? i kniw for me, chronic stress probably depleated my gaba and killed my sleep...then the cycle began, and benzos only helped minimally, only putting me to slepe 3-4hrs max. i totally know what you mean about feeling like giving up which all the sleep deprivation. how long where they going on before you decided to started taking the clonazipam? also, did your doctors rule out other degenerative brain diseases ? hope all is well, take care.

  • Posted

    hi michelle, thank you for the info. when/how did yours start? i am reluctant to take bezos cause i actually weaned off pf using them for 2 months...i actually think this is partly what cause them, but im not sure. benzo use and gaba depletion go hand in hand and the little that i know is that there might be a possible link between low gaba and an i crease in these jerks. did you have high anxiety prior to first having episodes of these? i kniw for me, chronic stress probably depleated my gaba and killed my sleep...then the cycle began, and benzos only helped minimally, only putting me to slepe 3-4hrs max. i totally know what you mean about feeling like giving up which all the sleep deprivation. how long where they going on before you decided to started taking the clonazipam? also, did your doctors rule out other degenerative brain diseases ? hope all is well, take care.

  • Posted

    Hi , just been told by my doc ive got this condition prior to that ive had 8 weeks sleep deprevation after a trauma now this i just was getting it under control started sertraline/zoloft and had come off sleeping pills my life has snowballed out of control the attacks are constant every time i close my eyes drift off then bam awake a twitching my first sign. im very anxious atm and serverly sleep deprived as proir to this only had 1 to 2 hours a night taking a sleeping pill its as if this thing doesnt want me to sleep ever again how are you doing now do you have any tips or advice ? have you got rid of this awful thing . i have been given a weeks supply of sleeping pills told to take anxiety medicine and relax .. somehow dont think this is going to go easy i could prob cope but its so severe

  • Edited

    I am experiencing this problem for a week. Also, I suddenly wake up with gasping air while falling asleep. I am scared if this will continue all my life and cant sleep.

  • Edited

    Stay away from Chocolate if you have Hypnic jerks, Chocolate is a trigger for migraine and Hypnic jerks which are tied together. Chocolate contains phenylethylamine is a major culprit, Phenylethylamine Is also in Anti-depressants. There is even a study of escitalopram(anti-depressants) causing or inducing hypnic jerks which contain phenylethylamine. I am not sure why doctors or others haven't put that together.

    • Posted

      Yes completely agree I was eating chocolate every day since pandemic I eat more so I cut it out it really should come with health warning like on cigarette packs 🙂

    • Posted

      My mom hasn't been able to sleep without her legs jumping for 1.5 years. Eating chocolate at night would make the jumping worse. It's been hell the last two months she went from walking, to using a cane, to a walker, to wheelchair, to not being able to move and hospitalized. The neurologist(s) put her on Clonazapam and Depakote. Both terrible for her and had that physical reaction.

      Finally, she is taking 400mg of Gabapentin at night two hours before bed and it has stopped her body from jumping and she's able to sleep. Thank goodness! Wow, it's been a journey.

  • Posted

    Dear I hope you get well soon. can you please tell me do you take some sort of drugs means weeds alcohol cocane etc. have you involved in some activities in one go where all the activities were providing pleasure and release of dopamine in your brain for example taking drugs then having your favorite meal then having sex or masturbation and then enjoyed your favorite music at high volume etc.... ?

  • Posted

    I have just started to experience this after an experience with health anxiety due to the recent pandemic, I was having palpitations every night. So I had a meeting with a cardiologist that got me into a very stressful week of medical tests that came out with results that show that I am not sick at all but with just a little calcium deficiency. What boggles my mind is that it became much worse after I got the medical results, I was hoping that knowing that nothing was wrong with me would have calmed me down. Now I'm really afraid that I might not be able to have a good night sleep any more. It's been happening now every time I'm about to doze off instead of just experiencing it once a night during the stressful week. Can some of you give an update as to how are you guys doing now and how are you dealing with this problem. Thank you!

    • Posted

      It's my first time having been kept awake 24 hours by this relentless jerking as soon as I'm about to fall asleep. Before I've only had these jerks happen 3 or 4 times in a row but today I've slept zero hours. I've also experience palpitations for over 2 years now but only the last 2 weeks have all this happened to me. Do you also feel it in your chest when your body twitches? The palpitations are worse with this twitching. I'm actually losing my mind.

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