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Xyrem (GHB) - Why isn't anyone curious?

Posted by utopizen on May 30, 2003, at 18:50:22

Lots (30-40 million) people have Excessive Daytime Sleepiness. That's the market Provigil hopes to aim at eventually, if they succeed in submitting a Drug Application to the FDA that gets approved for EDS without narcolepsy or any other disorder. Then they can advertise it for EDS in those without narcolepsy.

But this just masks the problem, let's face it. Xyrem (GHB) "accelerates" sleep, by deepening one's sleep quickly into stage four (delta) -- the deep, restorative sleep phase. Many report 5-6 hours makes them feel more refreshed than did 9 or 10 hours without it.

So why must one have cataplexy with narcolepsy just to get it? Are people with this condition more valid than me just because I get very tired? I get methamphetamine (Desoxyn) prescribed for my ADHD, and that's schedule II. Xyrem's Schedule III when it's properly possessed, so any rational doctor should prescribe me the stuff since I've already proven I have no abuse history and I can be trusted with Desoxyn.

I'm tired all day, except for the first two hours I wake up. It's not worth living life like this, I can't take it anymore. The Desoxyn can make me slightly more alert, but I'd have to take a higher dose if I wanted to make up for fatigue.

I've seen a neurologist, who had me get a sleep-deprived EEG. Nothing came up. She referred me to a sleep neurologist, who told me to get an all-night sleep study to rule things out. It looks good, I'm going to a Boston research hospital seeing doctors who treat the worst, odd-ball cases, so they should feel rather comfortable prescribing Xyrem. And frankly, I don't see why anyone else on this board isn't as curious.

After 6 weeks of continous dosing, cataplexy goes away or is markedly reduced. It's thought this is due to the higher quality of sleep the patient receives from Xyrem, according to the Phase III clinical trials director at Stanford's Sleep Disorders Clinic (who is responsible for the phase reviewed by the FDA before it was approved).

He also said in an interview that since narcoleptics find reduced daytime sleepiness, there's a hypothetical basis for thinking people without narcolepsy but with excessive daytime sleepiness could also find the same results.

Since 25% of children with ADHD feature sleeping disorder symptoms, and I have ADHD-inattentive-only, I think sleep may be an underlying factor.

I also have social anxiety disorder. The Klonopin doesn't make me any more tired now that I take it routinely, but I think the poor sleep quality I get in general exacerbates my anxiety.

I also have some mild acne and oily face, and this is worsened as the day progresses. If I nap or sleep at night and wake up, the oil's gone and my skin's clearer. People on GHB have reported clearer, more youthful-looking skin and less acne. Some do report acne, but this could be paradoxial.

Basically, I wonder why you guys aren't more interested in GHB for psychiatric disorders. Taken twice at nighttime, and after 6-8 weeks of routine use, I think sleep may be the culprit in some of our disorders.

And what's up with dermatologists not working with sleep neurologists on the coorelation between sleep and acne? Everyone knows it exists, but I couldn't find a thing about it on Medline!!


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