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?
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.
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
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.
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 !
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.
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.
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
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.
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!
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.
im lying in bed googling why this is happening to me now......this happens to me a lot mostly i wake up at around 3-4am and then cant get back to sleep until around 6 and have this happen..... sometimes its like i gasp for breath (even though my breathing is fine) and sometimes its like a click in my head or like im being pulled out of my body...... stress and anxiety is all ive found so far!!
im looking for answers too. I just nearly fall asleep then it feels like my body is shutting down and if I dont wake myself up out of it its the end sometimes I break out of it gasping for air to breathe..its been happening for a while of and on but it scares me when it happens and I dont end up sleeping. I remember mentioning it to a Dr when it 1st started and he said it was nothing to worry about..but Im not so sure..
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
finally relate and engage with other people experiencing this sudden "drowning" or falling off an infinite deep dark depth just when about to fall asleep...really scary!!
finally relate and engage with other people experiencing this sudden "drowning" or falling off an infinite deep dark depth just when about to fall asleep...really scary!!
Hello everyone! A few years ago, symptoms similar to the ones you describe here began to bother me. When I was falling asleep, I felt like I was dying or unconscious. This "sensation" automatically woke me up and resulted in my sleep disorder. I would also have trouble with heart skipping and breathing. I went to various doctors and no one gave me a specific answer except that most of my problems were related to panic attacks or neurological problems. However, I was persistent and found a solution to my problem. A blood test showed that my potassium level was lower (it was not below the limit). The cardiologist referred me to a drug that raises potassium levels in my blood. For the first couple of days I didn't feel any change, but after a couple of days all my symptoms disappeared completely. I do not want to give anyone a false hope here, but I advise you to check your blood potassium level as it can cause all sorts of neurological and heart problems. I know how frustrating sleep deprivation is and how powerless you feel in those moments, so I sincerely hope this helps at least someone. Good luck!
I have been having the same problem for quite a while. I thought it might have something to do with anxiety. Then I thought maybe heart related? I don't know but my doctor will think I'm a weirdo if I bring it up. I already have a small laundry list of problems.
I will now try potassium. thankyou
I can't believe I found this discussion... I have been looking for answers to this for years, or at least, to find someone else who knew what I was I was trying to describe. I feel much less crazy now. I have had this issue off and on for many years. Sometimes I go months with no occurrence, and then, out of nowhere, it comes back for weeks. It's back for me now. I am so tired and so miserable and so panicked. If anyone finds out anything about this condition, please post. I had a seizure once years ago, and something about this has always reminded me of that. Also, as some others have said, I experience this during the day while awake too.