I took Xywav for over 2 years, very helpful with sleep. I had trouble maintaining my weight. I’m 5’ 7” and lost over 30 lbs with xywav. Down to 110lbs. My provider discontinued prescribing it. Now I use CBD gummies and sleep beautifully with no side effects.

I've been on instant release Adderall since diagnosis in 2011 and it's worked well enough, so I've been afraid to try anything else. However, it can affect my ability to fall asleep some nights and I have no appetite until it begins to wear off, which has completely thrown my nutrition down the shitter.

For cataplexy I take Citalopram which I believe is the generic form of Celexa. It's managed what were frequent severe episodes every day quite well. My sleep doc keeps encouraging me to try Effexor to further and apparently fully control then, but I'm also afraid to switch this med. Weaning off and then on to a new med will undoubtedly mean lots of cataplexy during that process and I go from standing to the floor. If I knock my head too many more times... 🤕 I'll take the typically 10 or less episodes a month and be happy with it on my current med, thank you very much!

I also tried Xyrem years ago, and while the night sleep was greatly improved, it made me groggier in the morning, and waking up is hard enough already!

Xywav has been the only medication that has helped me.