TREATMENT DATABASE
Xyrem (sodium oxybate), also known as the “date rape drug,” is a central nervous system depressant. Chemically, Xyrem is the equivalent of gamma hydroxobutyric acid (GHB), a naturally occurring substance found in the central nervous system. Xyrem's use for medical purposes is highly restricted. The only approved use of Xyrem is for narcolepsy, a rare condition in which people suddenly fall asleep during the day. In 2010 the makers of Xyrem, Jazz Pharmaceuticals, submitted a New Drug Approval to the FDA for fibromyalgia. Approval was denied. Xyrem is currently listed as an “orphan drug” (a drug used for rare conditions).
USES IN ME/CFS: Xyrem has sometimes been used for treating the intractable insomnia experienced by many patients. Because of its potential for illegal use, physicians and patients who wish to use Xyrem must be registered with Jazz Pharmaceuticals. Registration includes a precise set of instructions for how to take Xyrem. These include not getting up after ingestion and using the bathroom before ingestion. Side effects include nausea, dizziness, headache, vomiting, sleepiness, and bed-wetting (for those who did not use the bathroom first).
| Rating | Side Effects | Reason for Treatment | Dosage / Duration | Age | Sex M/F | # of years Ill | Additional Comments | Illness Severity | Date Added |
|---|---|---|---|---|---|---|---|---|---|
| 5 | Wet the bed. Breathing so shallow my partner couldn't tell if I was alive. | Extreme insomnia. Less than 2 1/2 hrs cumulative per night, no more than 20 minutes at a time and sometimes consecutive days with zero sleep. This lasted years | 1 year 9ml 2X day | 43 | Female | 19 | Before Xyrem I was mostly bed bound, but able to care for self, barely and getting worse. But my partner was so terrified, and dealing with narcissistic personality disorder (which I had empathy for, just not understanding of at the time) and unfortunately would choose to shake me violently to see if I was awake, video tape me to prove I was a druggie, not sick, and other things that are essentially a recipe for disaster in a very common situation of severly ill partner meets severely mentally ill partner. It just terrifies me in retrospect because years later he did try to kill me and if I still had the Xyrem around he easily could have overdosed me. It's a scary medication despite the fact that it saved me, increased my ability to be able to go back out in public and socialize, where I'd still be if I hadn't been driven back into the ground. (Hope I made some sense/didn't ramble too much). TL/DR: I'd recommend it ONLY for severe cases and with explicit understanding of the dangers. It's particularly dangerous for people with breathing and heart issues. I would be sad if it were taken off the market completely however. | Moderate/Severe | 08/28/18 |
| 5 | No side effects for me, lucky I guess. | Difficulty falling asleep, staying asleep, and waking up un-refreshed. Neurologist did 48 hr EEG and even while taking Ambien, I didn't go into slow wave sleep at all during the study. | 8 year 4.5g 2X day | 51 | Female | 39 | Before Xyrem, my immune system was whacko, I was constantly, viral reactivation and sinus and respiratory illness, on antibiotics and inhalers every 6-8 weeks for years. After Xyrem, I got so much of my life back... my immune system improved, and I got much of my energy back. I would rate my recovery to 80-85% of normal. | Moderate | 09/29/19 |