My Doctor is suggesting that I start Xyrem for my Narcolepsy/cataplexy. I am concerned that I will not wake up when my alarms go off. I can barely do it now, most times I don't even know I'm turning them off or sleep right through it all. I am on Ritalin 20 mg 3x day right now, and it just doesn't seem to be enough.
I've been on Xyrem for 7 months now and have no problem waking up to my alarm. I believe as long as you are sleeping more than 2 1/2 hours with each dose you'll be ok. The pharmacy that dispenses Xyrem (there is only 1 pharmacy in the US that does so) sends you a "pillow" alarm clock to wake you up to take the second dose. You put this alarm under your pillow and between the noise of the actual alarm, and the vibration it makes, you'll wake up. It's designed to wake only you up, not your partner as well. The Xyrem Success Program is quite extensive - you'll have lots of people calling you and you'll be able to ask them any questions you may have. A word of advice - **this is my opinion only***: talk over any side effects with your doctor. If you report any side effects (such as a moderate increase in blood pressure for example) to the staff at the "Xyrem Success Program" pharmacy, they will have you speak to the pharmacist on staff there many, many times and will absolutely hound you for follow-up information, as well as send reports to your doctor to be completed. If it's a severe problem, then by all means report it. But if it's something your doctor is helping you to manage, such as a 10 point increase in blood pressure for example, I would think twice before telling the "Xyrem Success Program Pharmacy". It may seem like they are just chatting with you, but they actually are taking extensive notes and documenting every little thing you say to the FDA. This is just my opinion - I would never have told them the 3 small symptoms to them had I known. I definitely would still tell my doctor, of course.
If you have and more questions I'd be glad to help you. Regards - EJ23
Hi Donna52, I also have Narcolepsy w/Cataplexy, diagnosed and started medications in 1995. Ritalin never worked for me either, just didn't keep me awake. The only drug that worked for me was Desoxyn. The Xyrem has a very short life in your system, thus the reason for the 2 doses. It will put you to sleep immediately, within 10 minutes max, which is why the instructions say to take it at bedside. It then puts you right into deep sleep. I wish you all the success, let me know how you do! ♥
- Xyrem Information for Consumers
- Xyrem Information for Healthcare Professionals (includes dosage details)
- Side Effects of Xyrem (detailed)
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