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

Posted , 40 users are following.

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, 55 replies

Report / Delete

55 Replies

Prev Next
  • Edited

    yes, it's happening to me, and I am so so glad that I found this site and I've read your story because nobody wants to help me, they thought at first that it was me detox in off of alcohol, which it's not and the jerks just don't stop, and I just want to sleep, my body is just so exhausted, there is a point where I was up for 3 nights straight and my body was giving out, so one of my friends gave me a benzo and I finally got some sleep, I even been in to 2 different emergency rooms, they did CT scans on me and nothing, but when I went into the emergency room, I went in on sleep, deprived 3 days, no sleep, they gave me a benzo automatically, felt better and fell asleep, so it just seems like benzos are the only thing that help with this, and it's just really hard to talk to your doctor to even prescribe you anything like that ..I am just praying and hoping that I would be able to get help because I can not continue to keep taking my friends benzos I just want to sleep, I just want my sleeping life back, I don't know what to do, I feel like giving up sometimes, but I have 5 kids, so it's hard to be a mother after I'm, so sleep deprived, thank God for my husband, that's been there for us, I don't know what I would do without him, and I never knew that something like this exists. I thought it was all in my head I thought I was going crazy so coming across this website and reading everybody stories, I know I'm not the only one, but is anyone getting any sleep from any other pills besides benzos, please let me know, and I'm sorry that you all are going through this, I will be praying for everybody on here, because I hate it, it's an ugly, ugly thing, God bless good night, well, I don't know if it's going to be a good night, but yeah.

    Report / Delete Reply
  • Edited

    Hi, guys! I am from Bulgaria so, please excuse my language!

    My problem appeared last month and obviously is depending on my period, because last night it happened again, and I got my period again.

    The feeling is similar like your but not exactly the same. During the day I start feeling a preasure in my head and a strong dizzines. When I go to bed at night or during the day for a nap, a super strange sensation starts. I feel my head under preasure again and it starts pounding and pulsing on the pillow. Every time when my body and my mind start relaxing just before I fall asleep, I feel something like a vibration in my head (or a pulse) that keeps me awake. This happened a couple of times in every minute and it lasts till morning. At the begining I tried to stay calm, but after about 3 a. m. I got so nervous that I started to feel this vibration/zap in the body and in the heart.

    It is very difficult to describe it well. I do not feel pain and therefore painkillers do not help me. I feel a huge tension in my head, as if someone is squeezing it on the temples or pumping it with air.

    I am scared and exhausted... I really hope that someone will have a clue what the f**k is that thing!

    Report / Delete Reply
  • Posted

    Hi everyone, i am from Brazil and have been experiencing the same symptoms: whenever I am trying to sleep I am awoken by sudden movements of my limbs. It feels like an electric shock.

    I was sleep deprived for 11 days and reached a point of total mental meltdown, couldn't stop crying and wanting to die.

    I took clonazepam (for 2 days now) and it is the only thing that helped me fall asleep. I tried passiflora and valeriana before but to no effect. I know it causes chemical dependency, so starting today I will begin to wane off the dose.

    I am a pretty anxious person, and I too thought it was some neurodegenerative desease, which made the symptoms worse. Prior to the first occurrence of the symptoms I was doing some heavy work outs and I became overly anxious because I received an interview invitation. Maybe all of that summed to my preexisting anxiety were the trigger to this disorder.

    Now, I do believe the cause could be psichogenic(at least in my case and based on the report of some of you), so I am trying a new approach: I am staying away from coffee and chocolate. I started to pray and meditate more often, my faith in Jesus Christ relieves me of all my fears and helps me to relax. I will also resume my work outs, but in a less intense regimen and before noon.

    I hope and pray for all of us. We all are living unprecedented times, so don't strain yourselves too much. Never forget that you are not alone and we will win in the end.

    Report / Delete Reply
  • Posted

    Hello,

    Firstly I'm sorry to hear about yourself and everyone who is suffering from these hypnic jerks and other symptoms with no definitive answer or cause.

    I've suffered from hypnic jerks for a long while and for many years had no idea what they were so was terrified, but after lots of trial and error, combined with research I seem to have found a solution that works for me. When I was at my worst, I was having hypnic jerks all night long, with panic attacks, and no medical tests showed anything.

    In short, the key approach for me when they pop up again in my life which happens from time to time, includes the following;

    1.Diet- low Histamine, and low Tyrosine, low Phenylalanine.

    2.Chemical Free- especially in my home, cleaning wise.

    3.Exercise – the worse my symptoms are, the milder the exercise.

    4.Probiotics (non histamine types) and Calcium.

    The most important link in my experience is an imbalance of Catecholamines vs Serotonin (i.e. high stress hormones in your body and low serotonin).

    For the sake of making things simple, I’ll just refer to Dopamine as the key stress hormone which seems to be the most important for me.

    So High Dopamine, Low Serotonin is what seems to give me Hypnic Jerks, and a whole lot of anxiety, irritability etc. I’m sure there are other hormones involved too.

    It seems a lot of people get terrible hypnic jerks when they are coming off using Serotonin boosting anti-depressants, suggesting that a sudden fall in Serotonin can trigger them.

    Also if you are suffering from serious anxiety due to outside factors then you’ll also be out of balance.

    My DNA testing showed several gene mutations that can be skewed towards the brain having high dopamine and low serotonin. This was a key finding, as until I saw these DNA results I had nothing on paper that could potentially explain the array of symptoms.

    So the first 2 items above (Diet, Chemical Free) is all about lowering Dopamine and other stress hormones. Diet is so important, as I can set off the hypnic jerks if I was too eat or drink anything that could trigger a significant dopamine release. To give you an example, I recently ate a fresh pork chop for dinner, and had a bar of chocolate. The chocolate is an obvious one, but interestingly pork chops are just as bad! Despite the pork being super fresh (the same applies to beef steak, chicken breast) they are all high in Tyrosine and Phenylalanine, which are pre-cursers to Dopamine production. It took me a while to figure this one out, but is a game changer. I’ve had reactions when all I’ve eaten is fresh steak and rice (no dessert at all, and only water) because no matter how fresh the steak is, it’s loaded with Tyrosine.

    Also for me it was critical that I removed as many sources of chemicals in my home. We realised in hindsight that my symptoms became very bad when we introduced cleaners to our house. So we replaced chemicals with steam cleaning and took other measures with body wash, deodorant etc. Even if you are not that intolerant to chemicals, they can trigger a dopamine release. Just getting outside is very important, as I have read that 90% of the chemicals we inhale each day is from being indoors due to paint on the walls and furniture constantly releasing chemicals.

    In my experience I have also made a strong connection between food with high histamine and hypnic jerks, so I stay away from that too.

    There are also plenty of other reasons why Dopamine and other stress hormones are released, so it’s also about trying to live a more stress free life if possible, with less stimulation from television, smart phone use etc. Also this may sound strange, but it can help to just try and enjoy life as much as you can, so that you get the Serotonin flowing. I know how this sounds though, as enjoying life when you are suffering is really hard, but seeing your friends and family combined with some form of exercise outdoors in the sun each day can really help.

    Best of luck, hope this may be of some help.

    Report / Delete Reply
    • Posted

      Hey Craig, Have you looked into your testosterone levels at all? I've been having hypnic jerk issues for years and I came across a thread on Reddit where a user said that going on an HRT regimen totally stopped his hypnic jerks. My knowledge is limited, but I believe testosterone also effects serotonin uptake, so there may be something there.

      I'm going to have blood work done in the next couple of weeks to see if my hormones are out of whack. I'll post again here after I get the results.

      Report / Delete Reply
  • Edited

    Hi i myself have been living with hypnic jerks for many many years , but just lately they have got so much worse to the point where i am so scared to go to bed , i stay up as late as possible they are happening all night long , I have also noticed I am shouting out as they happen , also when I finally dropped off to sleep I can be woken up by then all of a sudden . I try not to drop of to sleep on the sofa cause if i have a jerk i have ended up on the floor many times and it can be quite dangerous . I am so glad i came across this page as i was beginning to think I was the only person suffering like this ! I never like to talk to other people about it as i don't want them to think its all in my mined and that i am crazy ! All i wish for one day is to get a full nights sleep i pray for that day, not just for myself but for everyone else who are suffering like my self . I hope this post makes you feel like you are not suffering on your own .

    Report / Delete Reply
  • Posted

    It, 's 1 o' clock am now, I' am drinking my second glass of wine (after taking a tranquilizer) and praying to find someone feeling the same thing as me. Thanks God I found you! Please, excuse my language. I am from Bulgaria.

    Yes, yes and yes! I experience exactly the same thing. It' s a kind of a vibration, or a sinking sensation, just for a second every time when I feel relaxed or trying to fall asleep. And this happened all night long. All night! 15 - 20 times per minute. I am desperated and depressed. It lasts more than a week. I have a little boy to take care of, but I feel like I am in pieces...

    I have read everything about the partial epilepsy, exploading head syndrom, hypnic jerks and anxiety brain zaps, but non of these actually is the same. Non of these have prolonged all night and noon long, every day.

    Please, help!

    Report / Delete Reply
  • Posted

    hello, I had this exact problem. it happened for about 3 weeks it was really bad and affected my sleep. But i found a cure for it. Lay off ANY stress. And i mean anything that triggers any stress or anxiety from driving, Loud sounds, and even movies and entertainment. Lay off social media and stay at a home with people that you love. for supplements I Take magnesium bisglycinate 200mg 4 times daily, ashawagandha KSM 66 twice daily, NAC amino acid supplemnets twice daily, Vitamin D3 4000 iu. A Healthy diet, lots of poultry. And the most important part of all = ACUPUNCTURE FOR ANXIETY, STRESS AND INSOMNIA. Tell your acupuncturist you have these symptoms and make sure you go to a certified acupuncturist. I see a Chinese Acu therapist TWICE a week for about a month now. you should see results after 8 sessions. then gradually bring it down. Continue at least ibce a month after for the rest of the year. It completely stopped my sleep jerks which would happen so frequently it's even scary to think about. Good luck to all.

    Report / Delete Reply
  • Posted

    What you are describing does sound to be very similar to what I am experiencing and having to deal with myself at the moment. Have you had any improvements ?

    Report / Delete Reply
    • Posted

      Have you come off any meds or reduced a dose recently? hypnic jerks happen when you come off or reduced a dose of a sedative med.

      If you are not sleeping well and suffer from insomnia then hypnic jerks can happen as you're sleep deprived.

      I get these hypnic jerks due to sleep deprivation, sometimes they are strong they knock my head back or even make my body jump up on the bed.

      Report / Delete Reply
  • Posted

    Ten years ago i started suffering from hypnic jerks right after a bout of illness, specifically after taking some antibiotics my doctor gave me. it was terrifying and blind panic seemed to have made it worse. It took me a lot of research to figure out clonazepam as a treatment, which i convinced the doctor to prescribe for me. I was fearful of the drug and eventually taper myself off it, and things returned to normal.

    For a few years after the jerks didn't rear its head until two years ago i had the same experience repeated after antibiotics. i figured that the jerks could either be caused by the drug - or possibly just by the stress (raised stress hormone?) in the body as a result of the illness. Again i took clonazepam and taper myself off. it was pretty unpleasant. My doctor sent me to see a neurologist this time but no conclusions were made. He just said "if clonazepam helps then keep using it".

    Again i recovered. until a few days ago. I have been doing the Keto diet for a couple of weeks to loose some weight. The blasted sleep jerks came back totally out of the blue (This is a new one, from a DIET!). Perhaps there's some chemical/hormonal imbalance that is causing it? I read somewhere that a depletion of GABA neurotransmitters in the brain is the culprit of these jerks. Not being a scientist I have no idea of knowing if and how a Keto diet affects the brain in such specific circumstances. Now I'm wondering if I should stop the diet? No plan to get back on clonazepam as it's such hard work to get off it.

    Does anybody have any insights??

    Report / Delete Reply
  • Edited

    You've just described perfectly what I've been going through. They're every night and constantly through out the night. They're very intense and usually make me sit up, sometimes it feels like its my heart doing it, sometimes I swallow and wake up. But each time its just a wave of panic that I need to wake up and sit up. I first noticed it about 2 months ago but it wasn't so bad happened maybe 3/4 times and then I was able to fall back asleep & it was only ever happening during the last 2 weeks of my menstrual cycle, so I assumed maybe there was a hormonal component to it. But now its happening every night, it's like I can only sleep once every two days. When it's happening I know im exhausted because I physically can't keep my eyes from closing and drifting off as well as my eye sight being weird and hard to focus. Very annoying, starting to really affect my life and it makes me feel crazy.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up