I have never felt "sleepy" tired (somnolescence? aka, somnolence?), not even at the beginning of my illness.
For the first 4-5(?) years of my illness, I did not seem to have many sleep problems. I did tend to sleep a lot more hours than usual (maybe 10-12 hours instead of my usual 7-8) but it seemed to be about the same quality of sleep as long as I did not have night sweats (woke up with my t-shirt, pillowcase, and sheets drenched). Night sweats were common in the first few years. Now they are rare.
My other problem was having to get up to urinate a couple times in the night, every night, even though the amount was very small. I didn't understand why that would wake me up. That problem stopped after I started fludrocortisone. I'm no sure whether the fludrocortisone actually helped (I think it did?) or my illness just changed.
But nowadays, even though I drink 2.5 - 3 liters of water daily, I NEVER have to get up in the night to urinate. Seems backwards, but it's true.
After maybe 5-6 years of illness my sleep slowly started getting worse. I don't remember exactly when. It was gradual.
I still do not have any trouble falling asleep at night. But I regularly wake up during the night.
On a good night, I will wake up only 4-5 times. On a bad night, I'll wake up 14-15 times.
No, I can't actually remember (brain fog!) exactly how many times I wake up during the night. I know this number only because I had to keep a sleep log for a few nights before I went to see a sleep specialist. Kept a piece of paper beside my bed where I had to write down each time I woke up.
I went to a sleep specialist so I could rule out apnea and lowered blood oxygen. My at home sleep test showed no apnea and blood oxygen 98-99%. I never did a full sleep test in the lab. It seemed like this sleep specialist only knew how to treat apnea. She had never heard of POTS/OI/NMH, and knew nothing about ME/CFS, so I thought it would be a waste of money & energy to do a full sleep test.
Anyway, on a bad night I'm sleeping in short bursts that range from 15 minutes to 45 minutes. When I am able sleep for more than an hour without waking up, I consider that a good night!
I do not think this is as bad as having insomnia, e.g., not being able to sleep at all/only a few hours. If you add up all my sleep bursts I do manage to get some rest in spite of all that waking up. And in the morning I generally feel no worse, and sometimes feel better, than I did the night before. So that's good.
I would love to know why my sleep is bad. I'd love to have some actual treatment (vs. avoidance = "Does it hurt when you do this? Then don't do this!"). But at least when my sleep starts to get really bad I can increase my rest a lot, decrease any exertion, and slowly it will start to get better again.
My understanding is that the sleep drugs out there are not likely to help my kind of sleep problem. And I'm not anxious to start on any sleep drugs if I can avoid them.
She asked if I did shift work and I said no, and that I have a medical condition. At around 3 am she came back into the room and told me to take the meds because I was STILL awake. I was booted out at 5 am and they never sent my results to my doctor. Total waste of time.