My guess is that my sleep problems have something to do with my problems with OI (Orthostatic Intolerance - my particular diagnosis is NMH). On the other hand, there are many folks on this forum with either NMH or POTS. Yet I don't remember folks posting similar issues with sleep (e.g., resting makes sleep better). So, who knows, maybe these things only apply to me?
First, I always wake up during the night. I can't remember the last time I slept the whole night without waking up. It's so normal to me that it's not even annoying. I just roll over and fall back asleep. On a good night I wake up only 3-4 times. On a bad night I wake up 11-12 times and I sleep in short stretches ranging from 20-45 minutes at a time. I know those numbers because one of my bad nights was during the 3 days where I tracked my sleep patterns before an appointment with a sleep specialist.
On a bit of a tangent, she was not very helpful. She knew nothing about OI (Orthostatic Intolerance) and apparently had no desire to learn. (why do so many doctors lack any curiosity?) When I mentioned my diagnosis she asked, "What's that?" So, I handed her the Johns Hopkins handout. She just glanced at it and then handed it back without reading it. Why ask if you won't read about it?
I did do a home screening (measured oxygen saturation and apnea/hypnea) but it was inconclusive. I decided not to bother with a full sleep study since I think she would not be helpful. Once I saw that my oxygen was okay then I didn't think apnea was a problem. And if my sleep problems are due to my OI (and both my primary care and my cardiologist have made that guess based on my symptoms) then I don't think that a specialist who knows nothing about OI can help me. There are several symptom lists for OI that include sleep problems. (e.g.,
http://emedicine.medscape.com/article/902155-overview#aw2aab6b3 - scroll down to list of symptoms for Chronic Orthostatic Intolerance)
Okay, enough rambling, back to the question.
I'm not on any sleep meds because I have no trouble falling sleep. I'm out like a light, just a minute or two after my head hits the pillow. And I can fall back to sleep quickly after I wake up, too. So, it's not like the typical type of insomnia that I've read about where falling asleep is difficult.
Here's my list of what helps me, for what it's worth.
First, resting during the day always makes my sleep better. The first time I noticed this was many years ago when I had the flu on top of ME/CFS. I thought it was just the flu making me sleep better. Then I realized that I had spent the whole day lying down, doing nothing other than eating and going to the bathroom, not even taking a shower (which always has at least a small impact). Then I started to experiment and noticed that lying down most of the day improves my sleep. A few days of rest in a row and my sleep gets even better. But doing things which trigger my NMH symptoms (standing, sitting at the computer, cooking, etc.) makes my sleep worse.
It was a surprise to figure this out. It seemed so counterintuitive at first. Normal folks sleep better after at least a little exertion. I sleep better if I've done nothing. My doctors have theorized that having less autonomic stress, and fewer NMH triggers during the day, makes my sleep better at night. Of course, I can't do nothing forever! My psychological health relies on doing something even if my physical health is improved by doing a lot less. I do my best to find a balance.
Second, I take a drug called midodrine that helps reduce NMH symptoms. Just after I started the drug I noticed that my sleep improved. Since that drug has completely worn off by the time I go to bed then it can't be having a direct effect. The drug lasts for only 3-4 hours. Patients are advised against sleeping while on the drug since it might cause blood pressure to go too high. So, it must be having some sort of indirect effect. The theory is that being on this drug means fewer NMH triggers for me and that translates into better sleep.
I hope I'm explaining this well -- someone who knows more about the autonomic issues could probably do it better.
I just thought of a third thing that helps me. This is the opposite of advice that is usually given. Many people say to have a snack before bedtime, esp. if you think have have problems with blood sugar. But I do better when I eat dinner either very early or not at all. (some nights I'm too exhausted to eat!) If my last meal was at lunch time, about 1-2 PM, then I generally sleep better. Of course, most nights I'm too hungry to completely skip dinner! But often I make do with a very light snack, or just a *cup of coffee* (Are you laughing yet? Is my body completely opposite to everyone on the planet?) at about 6 PM instead of a full meal. And my sleep is better.
Once again, this may be related to orthostatic issues. I always have to rest with my feet up after meals due to splanchnic pooling (I think that's the right word for it). And I always have more energy if I have an empty stomach. Maybe digestion is also a factor with sleep?
