Posted by utopizen on November 8, 2003, at 17:27:09
I have "atypical narcolepsy" (initially, dx'd with idiopathic hypersomnolence) and am now on CPAP (REMStar Pro w/ heated humidifer) and Xyrem (4.5g taken twice at night 3-4 hours apart).
I have to say, this combination, in addition to a MUCH lower dose of Desoxyn (brand of d-methamphetamine) than I had to get prescribed before, has virtually ELLIMINATED my sleepiness during the day!
The Desoxyn, I just need 5-7.5mg 2x/day of for my ADD really, much lower than the 15mg 2x/day I had to take before just to barely feel awake, and even that wasn't that effective, albeit better than any other stimulant I tried (Provigil, Dexedrine, Adderall, Ritalin).
The Xyrem is fantastic, so is the CPAP. I am on 7cm of CPAP at night, with a double filter system I insisted on having. I make sure to use my full face mask, because a sleep tech told me many nose breathers will breathe through their mouths in sleep without knowing.
This is almost 2 months of the Xyrem, 9mg/night divided by two doses taken before and during bedtime. It takes 8-10 weeks to notice signifigant relief of daytime sleepiness from Xyrem. My narcolepsy for all I know could have worsened into cataplexy if I didn't try this (Im just 20, so I'm nipping this in the butt after having extreme sleepiness for a few years).
NO MORE FALLING ASLEEP THE SECOND I READ A LINE OUT OF A BOOK, no more irritability, no more "I can't go on like this." I wonder how many people are excessively tired, and such symptoms of it aren't caught as a manifestation of their sleepiness?? Maybe taking Xyrem only at night for a couple of months is worth trying for people who are tired during the day, especially if they have ADD or apnea like me.
By the way, I'm a slim kid, my GP told me last year I don't have apnea because I'm not overweight. Luckily I knew better, and saw a pulmonary specialist (thank god for PPOs- no referrals!)
Xyrem info is at xyrem.com. I can't believe how much it's changed my life, I've read stories on the web of how people went from disability to full productivity/better-than-normal almost because of it.
I feel very sympathetic to anyone with a sleeping disorder. Especially because sleep docs tend to be very reluctant to prescribe anything, they like "ruling things out" so I played that game and did 4 separate studies and follow-ups and other appts. and other specialists, totalling 16 doctors over a year before getting Xyrem.
poster:utopizen
thread:277790
URL: http://www.dr-bob.org/babble/20031105/msgs/277790.html