Xyrem for Cataplexy User Reviews

• Anonymous
• January 26, 2012

"I've been taking Xyrem for about 6 years at 4.5 grams, 2 times a night. My doctor said I had the worst case of cataplexy he'd seen in his career! Xyrem, with 40 mg of Desoxyn and 150 mg of Effexor during the day, I have a life again! I still have to nap about midday, and I still won't chance a comedy club (the cataplexy still sneaks in once in a while), but I hope to someday. I found out the hard way to make sure you don't drink anything before taking because you will NOT wake up to pee until the dose wears off! A small price to pay when I consider what it was like before Xyrem."

• Sur...
• July 5, 2016

"I am 57 years old and have had some version of narcolepsy since age 30 or 35. I tried Nuvigil and then added Adderall but still had breakthrough narcolepsy and cataplexy. The cataplexy broke my foot a year ago and my wrist six months ago. This is the most amazing medication! I would go to bed at midnight and awaken at 10 or 11 in the morning. I would fall asleep for a cumulative 2 to 3 more hours during the day. I awaken between seven and 8 o'clock bright-eyed and bushy-tailed to use my parents' phrase. I am fully alert and have no further problems with sleepiness throughout the day. I am still experiencing occasional morning nausea and inappropriate diaphoresis or sweating for no reason. An ice pack at the back of my neck will break it."

• Riz...
• Taken for 2 to 5 years
• October 29, 2017

"I have narcolepsy with cataplexy and also sleep apnea. I started taking Xyrem about 3 years ago, and the difference in my ability to function is phenomenal. No more hypnagogic/hypnopompic hallucinations, drastically improved cataplexy, very few episodes of sleep paralysis. And for about 5 minutes before it knocks me out, I get a buzz of epic proportions. Sadly, Xyrem has gone up more than 800% in price. It costs over $5,000 per bottle, and I'm on 3 bottles per month. Unwanted side effects that I've experienced are, during titration (dose increased by Dr) 1. I had trouble breathing properly. 2. The first night of my highest dose (4.25) it knocked me out so hard that I wet the bed. 3. Wicked vocab. I swear a lot during a dose. IDK why!"

• blu...
• November 5, 2011

"I have had a great improvement in my mental function. I can now pay attention and follow along with what is going on around me. With a switch to Desoxyn as a daytime medication, wow, I feel like a normal person, at least for me. Get a safe to keep it in, as the ramifications of having it stolen are great. And the paperwork is long. The number of agencies involved boggled my mind."

• Ree...
• Taken for 1 to 2 years
• August 29, 2020

"Xyrem helped with the cataplexy symptoms and helped with my day-to-day. However, the first dose did not always work, and that left me in a very disorienting state. I also suffer from depression, and the Xyrem intensified this. I overdosed twice because of this. I had zero self-control when taking this medicine. The first overdose was on purpose. The second, I’m not sure, I blacked out. This medicine really helps, since being taken off, I realized how much it was helping. However, mentally, it is better for me to be off it."

• sec...
• Taken for 10 years or more
• February 3, 2025

"Used for almost 20 years now. Love it, but on occasion, I have a night where I don't think it even worked. I like it and wish I knew why it costs so dang much. We feel guilty for using it. Bet it would be awesome in slow-release form. (Feel free to use the idea. I don't need credit, I need sleep.) I do really wish I could have a sit-down with someone about it. There are so many questions we have about usage."