Thanks to you both. It is my 16 year old daughter who has POTS. Besides being on the DYNA website, I have been looking in at yours for a while. What a great group you all are!! (as are the DYNA parents.) For some reason, I couldn't post on here, but I finally bothered Michelle about it and she set me straight. (Michelle, you may not remember but we met several summers ago at the DYNA chill. I kind of lost it at one point when I realized just how sick Lindz could get..you helped a lot. ) Well, we are there, folks- pretty sick. But- to the Xyrem. Sophie, I had never seen this mentioned anywhere else, so it brought me out of "hiding." When Lindz got her POTS diagnosis at Mayo almost 2 years ago now, she really didn't seem to sleep at all. No difference with day or night. We kept getting blown off about this- but we knew that she really couldn't sleep. Mayo did pay attention on the second visit. They put an actigraph on her wrist for two weeks to measure movement- they can tell with this, they think, if she sleeps or not. (THe dr. recognized that an overnight sleep study wouldn't do it, because she probably wouldn't sleep.) When they contacted me with the results- they said this was a very unusual and extreme situation- that she wasn't getting any significant sleep at all. Well, we knew that. I asked them if they could fix it (MY gold standard at the time- now I know that helping it would have been plenty..) and they said they didn't know what "it" was. We didn't return, because she was trying to start her soph year in high school, and it wouldn't have been a quick trip. Well, she made it 2 days, and hasn't been back since.(She should be a junior.) ANYWAY- one of our ancillary dr's suggested she had a sleep disorder at the route of the POTS "outbreak"- seemed like as good a theory as any. He finally put her on Xyrem. It is a liquid- highly controlled (it's the date rape drug) and was deveolped for narcolepsy.I'm told that narcoleptics fall asleep during the day becase their sleep at night is not deep enough.I t tastes bad, causes her to twitch around, you have to play with the dose, give it every 4 hours, if the dose is too low, you won't go to sleep, upsets her stomach so badly that she has to take zofran before to keep it down, etc. etc. I guess with sleep disorders other than narcolepsy, you can go way up on the dose. (the nausea is supposed to subside after a while, but with some it never does.) When she is out, she is out. She wouldn't wake up for anything (a little scary) and if she gets out of bed and falls asleep elsewhere, I can't get her up to move her. HAving said all that, it DOES regulate her days and nights. She is basically up during the day, and sleeps at night. (It seems to be a constant, changing battle to get the dose high enough to sleep, but not so high that she feels drugged and sick to her stomach during the day. Of course, with POTS, its' hard to tell where that day time feeling is coming from.) SO, I guess she is better off on it (she reluctantly agrees. You don't have to take it every night, and when she takes a few days off, she is begging to go back on it.) BUT- i really haven't seen amy improvement in the POTS symptoms- in fact, they are getting worse. What I don't know is if they would be even worse still, at her age, if she wasn't on it. The Dr had hoped she wouln'dt need it after 6 months or so- but that hasn't proved to be the case. Two of her other POTS dr's say they have not seen sleep this bad even with other POTS patients..I don't know about that, I have spoken with a few other moms who say their girls are just as bad...And yes, Sophie, we did have to add a tranquilizer into the mix, to quiet her thrashing that happens before she actually goes out. I know this is a REALLY long introduction - but this is what I know about Xyrem, and I would appreciate it if anyone has any more info or ideas (Should we go for a week long sleep study- would they be able to offer any other helpful meds?) etc. etc. Thanks for being there. Joanie