I was on Xyrem for a year and a half, and it was like a miracle drug for a long time. Cataplexy was greatly reduced, I was able to stay awake during the day, and I slept beautifully at night. It even helped me lose weight!
It wasn't until I lost TOO much weight and had a lot of trouble gaining it back, that I wanted to stop taking it. Long story short, my doctor is running a clinical trial for a new narcolepsy+cataplexy drug, and he suggested I would be a good candidate. In order to join it, I had to be off of Xyrem for a month, then take a special sleep study. Well, after all that, I didn't qualify for the trial.
At that point, I did not want to go back on Xyrem. I realized during my month of no drugs that I felt SO much better without the Xyrem - that is, mentally and emotionally. I didn't realize that it was the Xyrem causing me to be so irritable and boring. But after stopping it, I got my passion back! My creative muse(s) returned, my sex drive came back, and I generally felt alive (aside from the EDS returning) -- and like MYSELF -- again.
So... my doctor suggested that I try Nuvigil instead of Xyrem.
I take it first thing in the morning, on an empty stomach. Often, I still get very sleepy during the day, but by bedtime, I can't fall asleep! Now I'm in this cycle where I get 5-7 hours of sleep at night, then take a nap when I get home from work, then can't fall asleep until late that night again...
Has anyone else had this experience? I'm not sure what to do about it now, but it's making me question everything. Am I napping because of the narcolepsy, or am I napping because I didn't get enough sleep last night? It seemed so much easier on Xyrem, and I'm tempted to go back to it, but I don't want to lose my passion and my ME-ness again.