- Pick a bedtime and stick with it as much as possible. Seriously, for me this makes the difference between 5 hours' sleep and waking up groggy, or 8 hours' sleep and waking up refreshed.
- Fasting for 2 hours before your first dose is a guideline, not a rule. I found that I need more like 4 hours, or even 6 after especially rich or fatty meals.
- Chill on the fluids an hour or two before bed, drink just enough water to chase away the taste after your dose, and pee before you retire to bed. Not only is bedwetting unsexy to most people, a full bladder can wake you, or prevent you from sleeping in the first place.
- If you have trouble falling asleep after taking your dose, experiment with quiet activities while you wait. My average wait time to fall asleep post-dose is about 20 minutes, which feels long and rather boring to those of us used to falling asleep in less than 5. Worrying will just keep you up longer, so do yourself a favor and meditate, or pick up some sudoku puzzles, or something.
- If your idea of "quiet activity" happens to be a bit naughty, beware the sudden post-dose libido spike. Sometimes it works out well, but be ready to assuage your partner's possible insecurities or hurt feelings in the morning should you pass out halfway through.
- If you have trouble staying asleep on Xyrem, examine your sleeping environment. If it's too bright, too hot, too loud, or whatever, fix it! Turn off the TV, cover the windows with construction paper, get a lighter comforter, wear earplugs, or turn on a little white noise. Such things can go a long way toward a better night's sleep, even on drugs.
- If you feel nauseous or dizzy when you first get up, try to eat or drink something. Milk, peanut butter, and other high-protein edibles work best for me, but your mileage may vary.
Most importantly, IMHO:
- NEVER drink alcohol with Xyrem. That's a fast track to a coma, and possibly death. If you had liquor earlier in the day/evening, wait until you are completely sober to take your dose.
- Give it time. Your body is going to be out of whack for a while, as you find your ideal dose, set up a sleep regimen, and (hopefully!) begin to get restful sleep again. It took my body about 6 months to start functioning in a manner approaching normal.
- Keeping the above point in mind, assess your situation often. In what ways is Xyrem working for you? In what ways isn't it? Do the pros outweigh the cons? Talk about these things with your doc, and remember that YOU are the sole judge of whether or not this medication is worth taking. Life's too short for medication that doesn't work in your favor!
Other Xyrem peeps, what advice would you give someone just starting out? Is there anything I missed? Feel free to chime in!
