Feel like I’m dying when falling asleep

Edited , 41 users are following.

Hi everyone, I was diagnosed in 2017 with CFS after having glandular fever in 2016. I've found it difficult to get my sleep pattern in order because I cant seem to manage staying awake more than 12hours, I'm usually completely shattered after 6-8hours. Anyway, every time i struggle to get some sort of good pattern going when I'm falling asleep i feel like I'm dying and it terrifies me. So I try to stay awake a bit longer. I Just wondered if anyone else gets this?

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  • Posted

    I always feel worse for a time when I lay down to sleep. Not sure exactly what you are experiencing but I often get body spasms that seem almost internal rather than external, increased hearth rate + irregular heart beat which in turn causes irregular breathing. Also other symptoms that I wouldn't even know where to begin to describe other than to say my body just seems to hate that period where I first lay down.

    I listen to audiobooks during that time which helps take my mind off of it.

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  • Posted

    HI, Shabbychic,

    I’m my opinion I think you’re experiencing a classic sign of overdoing it & pushing yourself way past your limits. It can feel worse when you lay down as that’s the time when you notice the feelings more but it is definately worse the more you push yourself. You are experienced what we call a “crash.” Trying to push through it will only make it worse I’m afraid. Have you been referred to a cfs/me clinic? They will teach you how to pace activities & finding your base line (limitations) it’s a bitter pill to swallow having to make changes but this isn’t an illness you can fight. You have to listen to your body & work with it. Try to include breaks/rest periods within the day if you can & rest willingly. Your body will thank you for it.

    Pet

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  • Edited

    Dearie me that is a symptom that I can so relate to. It happens just as I relax and about to drop off to sleep....not every night but often enough. It is like a pulse or a shock all through me...scary enough to open your eyes almost in terror. I wonder what the cause is? I noticed another poster claims it could be a crash, but I am not sure. It can happen to me whether or not I have had a reasonably busy day or not...no pattern at all. I often used to get other similar odd scary neuro sensations during the day, sometimes still do...they are unsettling enough let alone when you are falling asleep. I have often thought about bringing it up with a doctor but then I think it is such an odd symtom/event would they have an answer. They have no answers to any of my neuro symptoms...other than they are not sinister...although they certainly feel like it.

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    • Posted

      this is very similar to what i'm experiencing and its taken me some time to find a similar description online. For a long time it only happens just as i fall asleep. I get an electric shock feeling throughout my body as well as a very severe tension headache. Extremely scary.

      I've been to see a neurologist 2 months ago and they were not sure. I'm surprised they did not recommend an MRI?

      I now dread feeling tired as I know it will happen during the first stage of sleep.

      please let me know if you have found any new information on the condition

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    • Posted

      Came across this post and comment, and I don't know if I feel better or wonder if this something much bigger. I've had what feels almost like internal trembling that feels like your heart is racing but it's not. It typically is accompanied by a shock like feeling and I shoot out up. When it does happen I'm dosing off and it can happen over and over again as I try to fall asleep. A poundinf heart rate typically ensues and a general back, neck anf head discomfort/odd feeling. It's happened at different times since 2008 for me and recently it had been bad. Completely interfering with sleep. From everything I've read, stress and dehydration can be contributing factors. I've considered going for a sleep study, but who even knows. My doctor is not concerned... trust me of he had this going on.... I'm sure he would have had a sleep study by now.

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  • Edited

    Hi Shabbychic

    I have been experiencing something similar to this, which has become more frequent lately. It's been 5 years for me now having Cfs . I get this strange almost electric shock in my head/ chest which is just as I am falling asleep or very soon after and once it happens I also tend to try to stay awake as it is a scary sensation. I have tried to explain it to gp but no one seems to have an answer. As Charlie19 said.... there is no pattern to it !

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    • Edited

      It's fatigue and stress. When the subconscious thinks you're in danger, sleep isn't a good idea and tries to give you a warning. You need rest and just to pull through. It just happens and you can't do anything about it short term, just try to wait for it to subside without getting alarmed.

      Also, doctors don't work with this kind of symptoms, they only deal with things that incapacitate you in a serious matter, there's no course of action for symptoms like this, caused by exhaustion, psychological stress, aftermath of various infections, illnesses or emotional traumas.

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  • Posted

    Hi shabbychic, could you describe how you feel as you try to fall asleep? physical symptoms or mental? i've had cfs for many years and i fall asleep all the time, usually if i sit down i'm gone. when it comes to sleeping at night i only get about 4 hrs and i never feel rested after sleep. it's a tough illness to deal with, and for me it just leaves me feeling drained and can cause anxiety and depression.

    My advice would be to try and find a doctor who is more open to the idea that cfs is a real and debilitating illness and go from there. Don't hold back with letting them know how bad you feel and that you need help.

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  • Edited

    Hi

    Yes I too get this feeling every time I lie down, feel like my inner being is trapped in my body and trying to escape. Feeling of dread comes over me, shuddery insides. Only sleep every other night

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    • Posted

      I relate to this feeling. And sometimes I feel that my consciousness is being pulled into some dark void and trying to leave my body even though I am still awake. And it feels like if I don't fight that pull, I am going to die. SO scary.

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    • Posted

      I'm on here trying to find out what's going on with me. Every time I start to drift off to sleep, I start to feel a sever and overwhelming feeling of fatigue and weakness. It's terrifying and makes me not won't to sleep. Could you explain a bit more what these episodes are like for you? I do not have CFS, so I don't know what's going on.

      -Nikki

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    • Posted

      I'm so glad I've seen this. Exactly how I feel, that void pulling you in!! I also wake with my heart pounding as if I've stopped breathing and if I didn't wake it feels as if you are going to die. Find myself waking and running out of bed trying to get away from it.

      Reading other comments it could well be a PTSD, CFS or gastritis thing, wish I knew as its debilitating.

      I had a terrible episode the weekend and still feel awful four days later.

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  • Edited

    i feel the same way. i often try to stay up as long as i could because im scared to fall asleep. i get up several times during the night because of palpitations. my cycle is near too and i normally get horrible anxiety before it comes.

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  • Edited

    hello,

    im struggling as i type this message, ive never had anything like this before, im quite scared to be honest, im so tired and so i try to fall asleep and as im on the edge of "being asleep" my body panics and wakes up, it feels horrible like im on the edge of dieing, i feel so mentally ill right now!

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  • Edited

    I have just come upon this while searching for why this is also happening to me. I'm getting it frequently and it's terrifying. It's very physical, with rapid and irregular heartbeat, a pounding head, hot flushes, shaking and, as you say, generally feeling like I'm dying. Also, on one occasion, I heard a tremendous bang, even getting up and looking out the window to see if something had happened outside. It wasn't, so obviously that was in my head too.

    I do have a complicated medical history with autoimmune diseases and am currently reducing my dose of steroids but have never experienced anything like this before. I'm getting frightened to go to sleep now.

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    • Edited

      Ive come here to search for answers as well, and to my surprise, your experience is one that I can relate to. I've been dealing with this for some years now, and it's so exhausting. Some nights I just stay up and cry rather than fall asleep. I've also experienced hearing a bang outside, and rushed to see what it is only to find that it was nothing. This brought so much worry over me. I've tried to explain to doctors the feeling that I get whenever I do try falling asleep. Both doctors told me that I'm having anxiety attacks in my sleep, but I don't know. I feel like it's so much more. Ive also experienced having like almost an electric shock going through my head, with heart palpitations and trouble breathing afterwards. The experiences are so bad at times that I've jumped out of bed and rushed out of my room to find help due to me feeling as though I'm near death. I'm hoping to find more answers soon.This has really been a struggle. I hope you find the answers you need as well. I hope we all do.

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