Hi,
@joanierav, I'm back. I got sick as a dog yesterday, probably from something I picked up from recent air travel. This is another reason I hate to fly!
Anyway, going back to my point about taking Xyrem on an empty stomach, many people have to wait only 2 hours after eating before taking Xyrem. Some people have to wait longer, though. I had to wait 4 1/2 to 5 hours after eating, but my doctor said that was really unusual.
I got so much help with Xyrem from an online support group, Talk About Sleep. The Narcolepsy forum was a great source of information and help from members.
I have mild Narcolepsy, but at the time I was on that forum, I was taking Xyrem, but did not yet have my diagnosis. The people with Narcolepsy were very nice and helpful.
Talk About Sleep completely changed their format a couple of years ago. Archives preserved all those years of information, but you had to ask to know how to access it. I haven't been back but a few times since they changed.
I've heard good things about Narcolepsy Network, also. Whether or not you have Narcolepsy, you can get good online support for Xyrem.
I found that I needed to take titrating up on Xyrem more slowly than what my doctor suggested. That's certainly not true for everyone, but Xyrem patients helped me with this. It's not going to hurt to stay at a low dose of Xyrem for awhile so your body will adjust.
What worked for me was to start at just a little over the lowest suggested dose and stay at that dose for a week. Then I'd nudge it up a little more the next week, and I continued until I found my ideal dose. Mine was 3 grams, twice a night.
Oh, yeah, take a tiny sip of water after drinking a dose because Xyrem is salty, which can erode tooth enamel. Rinsing with a little sip removes that risk.
I think Xyrem is worth trying. It's safe, partly because it's so short acting. That's why you have to take another dose 2 1/2 to 4 hours later. Also, it does put you in deep-stage sleep, which many of us, whether we have Narcolepsy or not, are deficient in.
Best of luck, Joanie!