I'm worried my metabolism is going to plummet. I, too, eat a lot when off of medications, but while on medications, I hardly eat at all. I lost forty pounds when I started medications (which were in high doses) and looked sickly. I've learned how to eat, though, even when my brain "feels full." I'm now off of Xyrem and Adderall, and am on Vyvanse and Lunesta. I've gained weight, but am no where near overweight, but now I'm gaining a bunch of pudge for no apparent reason. It might be my HIV medications, which I started up about a month ago, which have probably stopped me from wasting. One of them causes your metabolism to lower. Plus, since I'm off Xyrem, my cataplexy is worse than ever. I'm not sure what to do.

MeGobbie: Are you falling asleep when you don't want to on vyvanse/lunesta, or incredibly drowsy during the day, or are they at least managing the EDS symptoms during the day (apart from the cataplexy)? My personal guess (and again, I'm no doctor) is that if you're not suffering symptoms of EDS, the weight gain is most likely a combination of no longer having the weight loss effect from xyrem (I've heard some people can lose so much weight they actually have to stop taking it), actual rebound weight gain from stopping xyrem, and your HIV meds (I don't know which they are, so I'm taking your word for it that they're weight-inducing).

You mentioned that you were sickly when you lost 40 lbs initially on xyrem, but that you learned how to eat while still feeling full from the medications, and that after recently gaining weight, you're still not "overweight." So, I wouldn't worry about the "pudge" you just mentioned as a sign of obesity just yet. I would first see if you can try to do anything to exercise (no matter how little), continue eating well, and see if the weight gain stabilizes and you end up back at a normal weight for your body.

As for the cataplexy, you should definitely call your doctor asap and get something to treat that. I don't know what (if anything) you tried before xyrem, but there are definitely other anti-cataplectic medications out there. The only thing I would keep in mind though, is that I've heard that some anti-depressants commonly used to treat cataplexy can contribute to weight gain. So I'd ask the doctor what all the alternatives are for treating cataplexy, and highlight your desire to try one that won't induce weight gain, and see what your options are. Good luck!

Oh, and just curious, but how long were you on xyrem and why did you stop taking it? And how much stimulants were you on with xyrem versus what you're taking now without it?

Renate,
if you google you can find some lists out there. I know there are a lot of Weight Watcher lists, but they don't always take sodium intake into concideration, or if you are trying to find unprocessed food.