LymeNet Flash: Anyone Take Xyrem For Sleep?

This is topic Anyone Take Xyrem For Sleep? in forum Medical Questions at LymeNet Flash.

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Posted by Starphoenix (Member # 2402) on :

It's approved for narcolepsy with cataplexy (paralyzed muscles), but many with fibro take it. It helps with sleep architecture. Like I don't get deep sleep.

I was supposed to start it Monday, but this strange stomach virus has had me postponing it.

Anyway, I wondered if anyone else here is taking it. If so, I'd like to hear of your experiences: good, bad, and ugly!

Steph

Posted by karatelady (Member # 7854) on :

Steph,

I take Xyrem. The thing you need to remember is to take it right before you get in bed and relax and "let" yourself fall asleep.

Don't try to fight the Xyrem or it will start to feel really strange and it can scare you if you don't know that.

I take 6 mls. Some people have to go up or down on the dose. If you don't sleep well on your dose, you may need to go up after checking with your doctor.

I have no problem with it -- I don't take the second dose because I sleep pretty much through the night and if I do wake up around 5:00, I go to the bathroom and then go back to sleep until 7:00.

Let me tell you what I did once -- I stayed up and piddled around for about 15 mins and the Xyrem really started getting to me and because of all my movement, I threw up. So be sure you get in bed soon after taking it.

It really is a wonderful deep sleep medication for those who are wired and don't sleep well.

Sandy

Posted by Starphoenix (Member # 2402) on :

Thanks so much, Sandy, for sharing your experience with me.

I'm glad this has been helpful for you!

I have to postpone it due to a strange stomach flu that keeps waxing and waning. Hopefully, I can start it by next weekend at the latest.

I am to take 12 mls. a night in two doses. I know I may need a dose adjustment. I appreciated your mentioning it, also. I know that if I have too many side effects, I may need to drop the dose and that if I don't fall asleep, I'll need more.

I'm sorry you had the vomiting with movement. I will be sure to drink and lie down!

I've heard horror stories about people throwing up while asleep, wetting the bed, sleepwalking. I know I shouldn't worry. I should just see how it affects ME and adjust accordingly. I hope I won't need Depends! [Eek!]

Steph

Posted by lymednva (Member # 9098) on :

My experience with Xyrem was like a nightmare. [shake]

I finally went to my doctor with a page of notes and read from it, telling him it was not helping me sleep better, that I had read that others woke up feeling refreshed, I didn't and the list went on... [bow]

I was on it for about four months and was SOOOO happy when he let me stop it and go back to what had worked for me in the past, and still does.

I had told him at every visit that I didn't think it was helping me and he told me to be patient and then he would increase the dosage. [Frown]

Then I found comments from people who had been helped by it and realized my reaction was no where near what they had experienced. When I had that info and could tell him it was NOT my experience he listened. [Big Grin]

I know it works for many, but not for all...just like everything else.

Posted by Starphoenix (Member # 2402) on :

I'm sorry it didn't work for you! I'm glad you have something that helps you.

Steph

Posted by FoggyLikeLA (Member # 8170) on :

I've been taking Xyrem for aboyut 6months now. It has really helped me with sleep. I sleep very well every night and since I've been taking it I have really been improving.

Posted by Starphoenix (Member # 2402) on :

I love the name, Foggy! [Smile]

I'm so glad Xyrem helps you! I can't wait to start taking it. I haven't had deep sleep in at least 14 years.

I may have an intestinal parasite. I have been off my TBD treatment and detox. I see my LLPA on Thursday. I'm going to ask about testing. I can't start the Xyrem until this is addressed, and I'm so frustrated about this. Oh, well. It should be soon.

Steph