Thursday night I started taking Xyrem. I am taking a very small dose, 1.5 gm two times a night. The doctors are doing this because of my psychiatric background. They are nervous about drug interactions, and (moreso) about the fact that Xyrem can make you psychotic. Then, so can stimulants and that hasn't been a problem.
Still, I appreciate greatly their caution.
The first night was extremely nervewracking, and I felt a lot of different feelings, both physical and emotional, as the Xyrem took effect. I think though that most of what I was feeling was nerves... because last night I felt just an initial blech when I drank it (it's a liquid) and then I was fine.
No, seriously, I mean, fine.
The first night I got nauseous (but didn't throw up) and had some excruciating leg pain. I was nervous to the point I realized I was psyching myself into things that I probably wasn't really feeling. Then I thought:
"Why is it taking me this long to fall asleep? It never takes this long."
I must have conked out two seconds after, because when I opened my eyes next, it was three hours later.
I haven't slept like that since I was about six years old. Seriously. No dreams, nothing. Just out and back again, as if a second had passed.
So it was time for the second dose, which went down a bit easier. By this time, I was looking forward to really sleeping for the first time in twenty eight years. I slept till about six or so.
I felt more energy all day. I didn't feel wonderful, but I didn't feel as run down and crappy as I usually do. I'll take what I can get at this point.
Last night, there was no nausea, no leg pain, and I was out fairly quickly. At midnight I took the second dose, and slept till about five. (I went to bed at eight). I still definitely feel a drag, but I don't feel the overwhelming LAY.DOWN.NOW. I normally feel.
I am really hopeful. It's not a huge dose I'm on, but I'm not having anything out of the ordinary happen side effect wise, and I do feel a bit better. When we get up to a more therapeutic level... Wow, is it possible I could have at least a few facets of my life back? That would rock.
I am also really hopeful I won't have to take the full dose that most people take. If it works well for me at half or three quarters of that dose... Hey, that'll be the icing on the cake.
I'm a 34 year old woman with multiple sleep disorders (sigh). Sleeping's been a lifelong sort of love hate thing for me. I had my first polysomnography in 2001, and I was told I was "fine." Turns out, from my history and the muscle tone that the PSG returned, I showed signs of REM Behavior Disorder.
Fast forward three years, where my neurologist, on hearing my reports of ungodly fatigue (more like someone turned up the gravity) and daily headaches, declared I needed a sleep study.
That time they found moderate obstructive apnea.
Did my CPAP titration, wear it dutifully. But I was still so tired. I mean, tired like I was smote from on high. So two weeks ago, I had a re-titration.
They discovered (this time) I needed my CPAP turned up and I have Periodic Limb Movement in Sleep Disorder. I also have an extremely abnormal sleep architecture.
What I wouldn't give to sleep through the night!
