I ended up taking my Xyrem with me on Thanksgiving (we traveled). I am glad I did. I actually managed to stay somewhat awake, feel somewhat alert and probably had the best holiday I had in a while. I decided to bring it because by a week in, it had become routine enough that I felt comfortable with it. And of course, Mr. CPAP came too.
One week in on the Xyrem I feel a little bit better. Not great, not anywhere near human, but I do feel better. Honestly, I'll take any improvement anywhere. The good news is there are almost no side effects, aside from feeling, maybe, some nights, slightly nauseous after taking it.
I am starting to get used to the taste, too. I mix it with fruit punch Crystal Light, and it seems to go down easier. As the nurse at Xyrem said, "It'll only get saltier as you go on." Now it tastes pretty normal to me though, I know what to expect, so if the saltiness goes up in increments, I'm not too worried.
I sleep better, I know this. I only wake up a couple of times per night, between the times I'm supposed to wake up. That's a definite improvement for me. Once again, that'll probably improve as we go up on the dose.
I am really hopeful I can cut back on the Focalin and won't need to go up to the full dose on the Xyrem... But that's probably pushing it to even think about at this stage in the game.
For the first time in a long time, though, I feel like I might be able to at least get some small parts of my life back.
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About sleepychick
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!
