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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?
8 likes, 102 replies
bob1970 shabbychic
Edited
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.
NotLivingTheDRM bob1970
Edited
ive been having similar issues. went to the doctor. HR was 112 resting and they said its anxiety due to stress. I no longer have stress or at least i dont think that i do. I've downloaded the dare app and it does help at times. nothing seems to get rid of the feeling of I feel like i might die. this scares me beyond belief. falling asleep and then having a jolt go through my body and i cant sleep. its just terrifying.
robin69352 bob1970
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I'm glad there is a thread of this. For awhile now, I've been thinking maybe I am dying... like my subconscious is telling me something. What is this weird thing happening? I did go through some scary events in the last 10 years, I now have Graves Disease from all of that. I tried drinking away the anxiety for awhile but I just felt worse.
When I sit up after entering that dark place I can only describe as FEAR, I look around and feel very grateful I am all good just at home in my bed. Then I just pray that it doesn't come about again .
judy01323 bob1970
Posted
When things are still and quiet, we notice more of the things our bodies do.
judy01323 NotLivingTheDRM
Edited
I have something similar to this. I believe it is related to exploding head syndrome. It feels like a balk of directed energy bangs through me. usually from behind. One might explain it like a spirit hitting/diving through me. It's way more powerful than the falling off the cliff jerk.
SanFranMan1982 robin69352
Posted
You and I experience the SAME EXACT THING!
I hope things will get better for us.
pet48859 shabbychic
Edited
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
charlie19 shabbychic
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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.
Simon-Eire charlie19
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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
juliet90337 charlie19
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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.
kamrynbailey25 charlie19
Posted
hey charlie, i relate to yours so much it is scary
jonathan72310 charlie19
Edited
I completely sympathise with you. Mine are getting increasingly worse and I get them under any kind of state. For some reason Sundays seem to be the worst though and not because of stress of work the following day as I enjoy my job. I had an episode last night. Ive never been able to go to the doctor with it as it happens so quickly and out of the blue that I can't get enough information of what I have felt. This may not be an accurate description but it actually for me feels like I've gone hollow inside or my organs have stopped and my brain has sent a massive surge to start everything back up again. It almost feels like when you see people being bought back to life with paddle boards on the TV. I know it's probably not serious as I have had his for years but I constantly feel that the next one could cause damage to me. If you ever find out what it is, please report back to the group as I'm sure you're all aware, googling symptoms you can't accurately describe is almost impossible.
Lala7 juliet90337
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Juliet, I'm very glad I found your post reply. What you describe is almost exactly what I experience - just as my brain is transitioning from consciousness to sleep I experience internal trembling that feels like my heart is racing (I wasn't sure if the recent earthquake in Melbourne was real or just this feeling!), and electric shock feelings. I also experience a strange, uncomfortable state of mind, and sometimes a sharp headache. After you mentioned dehydration I decided to buy a 2L water bottle to fill and drink each day. When I do that, I never experience this awful condition. If I forget to fill my bottle, it will almost certainly happen.
sindhurare16934 juliet90337
Posted
This is exactly what is happening to me. It started after I got covid last year and it freaks me out. I get these trembling feeling that you explained and my hr feels weird but then its normal. I also get a weird distinct burnt smell whenever this thing happens. From what I observed, this happened on the days I exercise. Its just so scary
elaine_9632 shabbychic
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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 !
Pathtonowhere12 elaine_9632
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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