(01-09-2022, 05:12 PM)Gideon Wrote: Pete, what is your very rare disorder?
If we are fighting more than apnea it is important at least for awareness.
In my case, they discovered (in 2002) a complete lack of the deepest sleep phase. Back then it was called Delta (I and II), now called N3 aka NREM (non-REM) 3. The truly hard part: that's the sleep phase where our muscles rest. I can sleep all I want, but wake up not-rested.
The diagnosis taught me a new (to me) word: Idiopathic Hypersomnia. I fall asleep WAY too easily during the day if not medicated, and they don't really know why. In reality, they know it is due to lack of Delta/N3 sleep, but no idea what causes that, nor how to treat it. (Put me in a comfortable chair, with no interaction, and I can fall asleep in seconds for a few minutes, and not know it happened. Embarrassing in a meeting; dangerous if driving.)
What follows may be TMI, but I suspect of interest to this group
I got a visit from the top AMA guy on sleep as a result. He went off to do some research, because at the time they knew there was a correlation between creation of HGH (Human Growth Hormone) in men, and that sleep phase, but no knowledge of cause/effect. Their concern: I could be aging horrifically.
His response after a couple of months:
* We don't know the answer
* We have no way to find out. They'd have to stick a long needle up my brainstem to even make one direct HGH measurement, and it wouldn't answer the question. A $20k procedure that wouldn't resolve it.
* So, he just told me to go live my life.
In the meantime, things got even more interesting. My sleep doc had me do experiments on myself, to find a med combination that would keep me awake. Until that was resolved, I was not allowed to drive. My experimental tools: caffeine in any form I liked, and an interesting med, ProVigil.
For me, a double dose of Provigil in the AM, and caffeine in the afternoon, provably keeps me awake. (I had to pass the truly awful wakefulness test given to truckers and airline pilots.)
Interesting tidbit on Provigil: it promotes wakefulness with essentially no side effects. AFAIK, they still don't have clear understanding of how it works. They just know that it does.
So, to an approximation, I am a living representation of the power and limits of modern science:
* I have a sleep disorder; they don't know what causes it
* It's treated by a medication; they don't know how it works
* But all of the above is scientifically demonstrable and repeatable