It's kinda horrible actually. SUPER salty if you can even get it down and you have to wake up in the middle of a sleep cycle to take it AGAIN! It didn't even help me much.

A couple of years ago, my sleep doctor, my primary and my psychiatrist and I went round and round about XYREM. After a ton of research and discussion, I finally agreed to try it, much to my psychiatrist's misgivings. The process just to get the medication was long and laborious. After being approved, and having it delivered I had to work up to a full dose. The instructions state that you must STAY IN BED, well it caused me to sleep walk. I would find myself down my hallway or in the bathroom. As soon as I woke up, my body would just drop to the floor. I even fell off the toilet several times. I couldn't do anything about it. Finally, I spoke to my sleep specialist and was immediately taken off the medication. She was afraid I was going to get hurt far worse than a few bruises. For some people, XYREM is a godsend and they couldn't live without it. For others like me, not so much.

My doctor has also talked to me about this medication. Along with the possibility of taking Wakix. It makes me super nervous to even think about taking knowing it’s technically the “date rape” drug and knowing I would be almost dead to the world at night when I have 4 kids at home. Although my youngest is 8 and the oldest is 16.

I wont try it. The warnings alone scared the crap out of me.

Thanks all
I am very new to this site (first time ever reaching out to any support group!) I am still learning how all this works. Hopefully I'm using it correctly. Knowing y'all are "out there" is very comforting. I am excited to learn more about our shared rare condition and how we all manage it. Thanks again for all your support and making me feel welcome! God bless 🙂