I have a new change can i see if you all have this too?

[bensmith]

I havent had brain fog or fatigue, but i feel sleepy more so.

Covid improved my sleep but its getting soninsleepn8 hours and then have 4 hours of sleep attacks. But still feel sleep. Maybe bad pem, but inworry about damaged hypothalamus/narcolepsy/sleeping sickness.

anybody feel sleepy? Feels like im becoming less and less awake.

 

[wyva]

I havent had brain fog or fatigue, but i feel sleepy more so.

Covid improved my sleep but its getting soninsleepn8 hours and then have 4 hours of sleep attacks. But still feel sleep. Maybe bad pem, but inworry about damaged hypothalamus/narcolepsy/sleeping sickness.

anybody feel sleepy? Feels like im becoming less and less awake.

That is how it was also for me after the EBV infection and it still is, but not as bad as in the beginning. I never had insomnia, I could always sleep, but then on bad days after waking up I had to go right back to bed and sleep more. And then doing the same later in the afternoon. I had to stay in bed so much because of this sleepiness that I couldn't really function. It was hypersomnia/somnolence but not narcolepsy, meaning that I could force myself to stay awake but it was really hard (and still is), the feeling of sleepiness was absolutely overpowering. Sleep attack is a very good expression for it. I still have it but it is not as bad now (similarly to my other symptoms).

 

[bensmith]

@wyva thanks, so glad hear that. So mucb sleepyness! I think narcolepsy you can resist, depending in cataplexy(muscle colapse)

either way we share that in that yeah i can be awake but i can also just keep
On sleeping.

thanks for responding, at least its normal. “Normal” ☺️

sometimes i get so sleepy i sleep in my dreams. I also feel pretty good after a long sleep attack session which is weird. But i still want to sleep more inthink.

 

[Judee]

I felt this before but am feeling it now again too. Not sure if it is because of my grief but I wake after a full night's sleep and want to go back to bed within a short time. Yesterday, I slept for another 3-4 hours.

When I had this before it would hit in the afternoons and it was tortuous but my hours are finally switched around now so it's happening in the mornings.

I have a book by an endocrinologist named Diana Swarzbein. She said med school was so intense that her body became sleep deprived. When she got out of school and had more time to sleep, it was like her body was working overtime to try to catch up. She wanted to sleep all the time so I wonder if it is our body's way of trying to heal from the toll this disease has taken on it.

I do always recommend people rest aggressively especially in the beginning of this disease in order to have the best chance of recovery. Some people do recover in the beginning so if you can, let yourself rest, @bensmith.

 

[Aurelius]

I have the same. For me it feels like an inflammation in the brain that keeps on increasing the longer I keep me from not sleeping, until I have to give in. Now, I dont say that it is actually an inflammation of the brain, simply that this is the way it feels to me. A "nap" of 3hours can clear that feeling for me.
Interestingly I just get this in the morning until lunchtime. At night time its gone.

 

[xebex]

yes, I get sleep attacks, I usually don't actually sleep in the sleep attacks, just feel like I'm losing consciousness but never do, and if I do fall asleep I'll jerk awake. I will eventually fall asleep and wake up the next day in PEM ie flu-like feeling. Ritalin helps, but as I've told you before I can't take it regularly, I have also found that making sure I keep my mouth shut helps, like literally, I had to be fully conscious of closing my mouth ALL THE TIME - I'm over-breathing and getting too much oxygen, which makes me super sleepy like after a day at the beach, I do believe this is some kind of faulty ANS response that you can train out of to an extent.

 

[valentinelynx]

In the early days of my illness, before I figured out I had ME/CFS (just CFS in those days) I used to have sleep attacks. Not like narcolepsy where people go directly into REM sleep. I'd just fall asleep unexpectedly. I remember it happened once when I was trying to pack stuff to leave the place we were staying on a trip. On another trip (the Bahamas!) I fell asleep while sitting on a bench in the airport waiting for my partner to do something. He seemed annoyed that I didn't respond right away when he came back.

These days (27 years later) I'm sleepy from some of the meds I take, but it's not unexpected. It's difficult for me to sleep for long, and I prefer not too, because I'll wake up extremely stiff and achey.

 

[pattismith]

I feel sleepy too most of the time, comateous sleepy.
Sometimes caffeine helps a bit, sometimes not, sometimes it makes me worse.
it never helps when sleepiness is the strongest, at midday, but it sometimes helps in the morning.