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TOPIC: What do you think about the drug Xyrem?

What do you think about the drug Xyrem? 11 years 6 months ago #1

I was wondering if anyone with ME had tried Xyrem for sleep.
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Re: What do you think about the drug Xyrem? 11 years 6 months ago #2

  • Maff
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Hi Patty,

I had not looked into this drug before but after learning that it both increases growth hormone secretion and acts on the GABA(B) receptors (as benzodiazepines like Valium do) I am now very interested to find out more.

I currently use diazepam/Valium when needed as it gets me off to sleep very quickly if I am having problems sleeping. It has also never given me any side-effects and is very cheap. If Xyrem were to offer similar effectiveness for inducing sleep and were to also improve sleep quality that would be great. Raising growth hormone would seem to be very desriable for those of us with ME/CFS, Fibromyalgia and the like since we appear to be deficient and growth hormone has many positive effects on the endocrine system and body as a whole.

It sounds like Xyrem is only available off-label for sleep at the moment. Has your doctor suggested it or is it something you have been looking into yourself? Also have you tried all other options? I have found melatonin supplements to be very useful for sleep, along with the diazepam.

Thanks for bringing this up and let us know if you come across people who have been using it for sleep. Definitely something to look into a bit more!
If you are going through hell, keep going - Winston Churchill
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Re: What do you think about the drug Xyrem? 11 years 5 months ago #3

Hi,

All I know about Xyrem is what I've read online.

I came upon it looking at studies for sleep with ME/CFS patients. It helped create Deep Sleep cycles in over 60% of ME patients. But the drug is not easy to take (two doses nightly, that's right... set the alarm to take the second dose after four hours). And due to FDA absurdity, it is expensive and hard to get.

Even still, If I could get some healing sleep.~~~~~~~~~~~~

Patty
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Re: What do you think about the drug Xyrem? 11 years 1 month ago #4

As most probably know, Xyrem and GHB are the same. But that said, that doesn't mean that it's problematic. I don't think it is. I have only heard good things about Xyrem and sleep for PWCs. Narcoleptics take it as a medicine and are fine with that. I would do it if it was offered me (for insomnia).
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