How does one go about treating hypnic jerks that occur predominantly in the head at the onset of sleep and can go on for hours at a time? I have found no mention of any sleep clinics in England (unlike your Cleveland Sleep Clinic) and so am at a loss to know how to decrease or even stop them without resorting each night to sleeping tablets. Any help would be very appreciated by my tired brain!!
It's quite unusual to have hypnic jerks for ?hours at a time. TYpically they last only a few seconds as you are falling asleep though they can certainly recur during this period of time. You may want to see a neurologist for a formal examination and sleep study (I'm sure there's a place somewhere in London where they do sleep studies - Queensquare Hospital for Neurology?) to make sure everything is ok and that the head jerks at night are really just hypnic jerks and nothing else. If it does turn out to be just hypnic jerks, a medication called clonazepam (klonopin in the US) may be helpful. Good luck.
I have suffered w/hypnic or hypnagogic jerks at the onset of sleep for 5 yrs. Mine are also primarily in my head but occasionally in my body. They are usually relentless. Last year I finally started being treated by CCF. I take anti-seizure medication & a drug that is in the same family as valium. As no one wants to take medication, after suffering & hardly being able to function both mentally & physically I'm incredibly thankful there is medication. While it is not perfect, it sure does help. I was able to go back to school & now have a job. I have been told by the CCF that I am a textbook case. While most people have hypnic jerks, some don't even know it and some are startled awake & able to go back to sleep. That is normal, but there are few cases where they are severe, which I am one of them. I did try the drug Clonazepam but it didn't help me.
Your symptoms really don't sound like mine (hypnic jerks).
Just keep trying to post your question to the dr. I know a lot of people are trying to post, but I just kept on trying & trying & finally one day "it let me in". I know what it's like when you feel you're the only one that is suffering from something.
Thanks for your reply it was very helpful if a little distressing to think you have suffered with these for 5 years. The greatest thing about your reply was the realization that I'm not the only one with them and therefore am not losing the plot!I am about to remake an appointment with my Dr to try and get him to send me to see a neurologist and take it for there I guess. I have found that if I have a couple of drinks of alcohol it helps, but feel that isn't really a healthy longterm solution. Did the CCF (I'm not sure who or what the CCF is)say why you had them or what had caused them to start? I find it hard to believe that one night I slept reasonably O.K and then the next all this started, it really baffles me as to why, any ideas would be greatly appreciated.
Are these just in the neck/head? The reason I ask is that I started having these, especially when in bed and trying (often in vain) to get to sleep, but only after two months of slightly more frequent twitching of a finger, leg, etc., mostly when at rest. Before that, I'd only had these while actually asleep, but now even my lips sometimes twitch.
Please let me know if this sounds familiar to you, especially if you also experience increasing 'brain fog', conflation/reversal of words, prickling of limbs, throat lump, others. I hope to find someone here who shares my symptoms, since I feel alone and scared and can neither post a new question nor pay US$14.95 for the Premium help. (I have already been advised to go to my jurisdiction's hospital's emergency area, but they had too many patients already. :-( )
CCF is The Cleveland Clinic Foundation, which is the Forum we are in. This is where I found out what was wrong with me 4 years ago. I then knew what was wrong but no one was treating me successfully. So finally last year, since I only live about 3-1/2 to 4 hours away from CCF, I started going there to be treated & try to help anyone here that I can.
And yes, one night 5 years ago it started completely out of nowhere.
By all means put yourself in the hands of a good neurologist. Insist on a sleep study if the dr. hasn't heard of your symptoms or has never heard of hypnic jerks (because some haven't).
I started having sleep problems intermittently last year without the hypnic jerks. At Xmas I had a bad attack of anxiety and the jerks started. I was given fluoxetine (Prozac) and whilst it improved my mood, the hypnic jerks seemed to get worse. I stopped taking fluoxetine after 4 weeks (doctor warned I might regret this). I feel OK but the hypnic jerks are still with me. Temazepam helps but it's addictive and eventually stops working. Like 'clawed' I also find a few glasses of wine help me to get off to sleep together with the herbal remedy Valerian but this isn't an ideal solution. Can the jerks possibly be triggered by anxiety? If so, why do I still suffer from them when the anxiety has disappeared?
I am from the UK and will be visiting my doctor to try and find a solution. I don't think a general physician will know a lot about this problem - it's perhaps a specialist area. The info on this forum is very useful and it's reassuring to know there is medication which helps. Thanks to all.
Funny you should mention Prozac because I was on that medication years ago. After five wks. on it my sleep quality became poor & quit the medication "cold turkey". I can't remember if the jerks started right after that or not. Sometimes I wonder if it had anything to do w/this condition I now have. I have been told it does not because people who have never taken Prozac have hypnic jerks.
I know anxiety certainly makes a person have isomnia. But I have for years, tried to find if there was any kind of pattern (ie anxiety, PMS now menopause) but for me there is not. I can have a peaceful day & the jerks at night are just as severe. To me anxiety causes normal isomnia.
my husband is also suffering from the same sleeping disorder called Hypnic Jerks . he says it sarted 3 years back it was not so severe in the begnign but as years have gone the jerks have become bad ....he dose not have any sensation any pain or any falling sensation when he gets these kind of jerks in the night he gets these jerks every night as he starts to fall asleep they last for 2 - 3 hours every night and then he goes to sleep .I guess I just want to know if anyone else has the same problem. It would be comforting to know that he is not the only one . These jerks really scare me ...can any one please suggest me what to do do i need to see a neurologist
my husband is also suffering from this kind of sleeping disorder called Hypnic Jerks . he says it started 3 years back but then these jerks were not so severe as they r now ....now he jerks as if he is getting a heart attack ....he does not have any sensation of falling , pain or any thing of that sort but it starts just before he is falling into deep sleep ....he gives a jerk and then he is awake ....these jerks start right after he falls to sleep and then this continues for 2 -3 hours in the night and then sleeps well but tthe jerks come after every
5-10 minutes .....these jerks really scare me ...but after reading this post it is really comforting to know that he is not the only one ...so can some one please guide me what may have caused these jerks and is it advisable to see a neurologist before it worsens .
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