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Prescribed Xyrem for narcolepsy/cataplexy? What're your experiences?
December 3, 2012 3:07 PM   Subscribe

What are your experiences using Xyrem for treatment of narcolepsy/cataplexy?

I am interested in hearing any experiences people have had using Xyrem (uh... GHB?!) for the treatment of narcolepsy and cataplexy. It just sounds a bit scary, you know, but I'd like to hear some firsthand responses.
posted by jeroum to Health & Fitness (2 answers total)
 
I am narcoleptic and have been on Xyrem since roughly 2005-2006.

It has, for all practical purposes, completely eliminated my cataplexy. I never got it too bad to start with so take that with a grain of salt. However, it has dramatically improved the quality of sleep I get and how I feel the next day.

Qualitatively, it feels amazing. It's like being drunk without being feeling horrible. If you play "chicken" and don't go to bed right after taking it, you may find yourself peeling your face off your keyboard, covered in cereal that you spilled from the bag, and with pornography on your screen.

Once you're familiar with how long it takes to hit you, you might try to "cheat" and go to bed maybe 15 minutes after taking it rather than immediately. This buys you a little extra time but sometimes you'll wake up 4 hours later crumpled in strange positions on whatever surface you were next to when it kicked in. Even if you try not to, you might sometimes call your mom or your sister or your friends and cry about problems at work, letting go of whatever reservations you might have when "sober."

And I wasn't kidding about that 4 hours thing. You can pretty much set your watch by it. You wake up the way terrible adolescent fiction describes waking up: with a start. You'll get used to not remembering falling asleep. It's strange to experience something but to rarely remember it actually happening. You'll learn that when it says not to eat or drink much before you take it, it means it. Firstly, because it'll change the absorption. Secondly, because if you have a lot to drink you will very plausibly piss yourself during the night. This will be particularly embarassing if you a bed with a partner. At high doses, you might end up sleepwalking frequently.

The taste is horrid. It's metallic and powerfully salty, but eventually you'll come to enjoy it. Think of it like a horrible tomato juice that makes you feel great and makes you feel better the next day. I have even grown to think of Xyrem as my friend, my ally. Before I started on it, I got by "okay." I wasn't a total mess, but I wasn't that great either. Xyrem pushed me over the edge so that I was able to go to school and work and excel at both of those things when I thought I would have to settle for mediocrity.

Don't be scared. Xyrem is a beautiful drug that feels nothing short of amazing. If you're anything like me, it can also improve your quality of life markedly.

(Current drug regimen: Adderall XR, Adderall IR (as needed), Nuvigil, and Xyrem)
posted by GammaGoblin at 3:36 PM on December 3, 2012 [4 favorites]


I just started Xyrem after 3 years without insurance. Previously I was using it for about 4 years.

I'm getting used to it again (only been 2 weeks).
It can be a challenge for me to wake up for my second dose. Sometimes I wake up in the morning with the second bottle full.

Before, I was able to wake up in the morning without being tired. Which, to me, was the first time ever in my life. It was a great feeling. Cataplexy gone. I have mild to moderate cataplexy.

Side-effects for me include "fighting" the medicine and eating everything in the house. Increase in libido. Also wanting to chain smoke (bad idea).

I wouldn't recommend taking Xyrem and then deciding to roam around. For me, it makes my body feel like rubber. Sometimes if I haven't had a big dinner- I can get dizzy.

When I first was prescribed it- I was quite nervous given the fact that you can't even get it at a pharmacy and
here's books and DVDs about taking it. I remember I chose to start it on a weekend night while my boyfriend at the time was home. I think I only tried half the recommended dose at first.
I mix mine was a little Crystal Light. It tastes salty but it's not that bad.

Memail me if you'd like more of my ramblings! I'm off to take my Xyrem.
posted by KogeLiz at 7:29 PM on December 3, 2012


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