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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 16 of 16. This is the beginning of the thread.
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!!
Posted by Jack Smith on May 30, 2003, at 19:16:38
In reply to 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.
>
> 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 see your point but rational doctors are not going to prescribe the stuff because of the liability problems. No doc in their right mind would prescribe it for an off label use. Also, even though Xyrem is only Schedule III, it is more regulated than methamphetamine. You can get your desoxyn at Walgreens, correct? YOu can't get your xyrem except in special approved pharmacies. Doctors and patients have to attend some sort of seminar before it can be prescribed. At this seminar, they are not going to talk about off label uses because the drug company cannot promote them.
I agree it should be more available but it's not.
JACK
Posted by utopizen on May 30, 2003, at 22:52:51
In reply to Re: Xyrem (GHB) - Why isn't anyone curious?, posted by Jack Smith on May 30, 2003, at 19:16:38
At this seminar, they are not going to talk about off label uses because the drug company cannot promote them.
>>>>Jack,
it's a 5 minute phone call, the patient and doc must make, recorded message. Once a doc does this, he doesn't have to do it again. If I'm seeing the best sleep neurologist clinic in the world, don't you think my sleep neurologist has already been registered with the database? I'm well aware of the procedure, and there's no "seminar." it's more like an answering machine message than a seminar. Saying it was a teleconference would be hyperbole.
And once again, the traditional treatment for narcolepsy is amphetamines in higher doses than those taken for ADHD. My neurologist gave a concerned look when I said I took Desoxyn, and said there's a lot of promise with Provigil and Xyrem. And I'm pretty sure the hospital does clinical trials for off-label uses of the drug per the maker's request anyway.
Docs actually feel more experienced and elite when they prescribe off-label, especially when they go to a top-notched Harvard Med teaching hospital. They get to write case studies to journals, brag to their colleagues on how creative and trendy they are, and so fourth. It's different than going to a doc at a private practice. It's a research hospital because they're doing something NEW. That's why it's called a RESEARCH hospital. Otherwise it would be a HOSPITAL.
Posted by Snoozy on May 30, 2003, at 23:43:52
In reply to Xyrem (GHB) - Why isn't anyone curious?, posted by utopizen on May 30, 2003, at 18:50:22
Heck, I'm curious! I have to say, though, that I don't know anything at all about it.
I've been "living" with this EDS (that name just doesn't cut it!) for nearly a year, and I'm just hanging on one day at a time. I even took myself off Xanax (I was on it for nearly 10 years) to try and shake some of the sleepiness. Didn't help at all.
If you do find any answers, or anything that helps, I'd really love to hear about it.
Posted by Jack Smith on June 3, 2003, at 12:57:40
In reply to Re: Xyrem (GHB) - Why isn't anyone curious?, posted by utopizen on May 30, 2003, at 22:52:51
Dude, you miss the point. You asked why docs are not prescribing it. They aren't because of liability problems. Everything you say is right I guess but still hardly any docs are prescribing it and you seem to be having trouble getting it. I gave you an answer why. Your point that docs may not be acting rationally is unremarkable, it's a given.
Posted by pablo1 on July 10, 2004, at 14:15:05
In reply to Xyrem (GHB) - Why isn't anyone curious?, posted by utopizen on May 30, 2003, at 18:50:22
I sure am curious. Unfortunately it's pretty much unavailable. The reason of course is that it feels good. This damn country has a big problem with that. If I were able to find an illegal source (not likeley anyways) it's much more likeley I'd abuse it but if I could get it prescribed there's no way I could abuse it.
Supposed to be a genuine miracle drug & I've read a lot about it. Can be a really disgusting addiction as well but that's true for many many medications. The only concievable illegal souces these days are very dangerous in terms of chemical contaminants. Very nasty. Such a shame.
Posted by 1980Monroe on July 11, 2004, at 17:09:14
In reply to Re: Xyrem (GHB) - Why isn't anyone curious? » utopizen, posted by Jack Smith on June 3, 2003, at 12:57:40
Ok, what is the big diffrence between GHB and other sedatives like Xanax, and barbiturates, if they all have a "tranquilizing" effect.
I dont know much about GHB so dont please dont bite my head off.
Why is GHB prescribed for Narcolepsy?
Thank you
Posted by pablo1 on July 12, 2004, at 10:32:33
In reply to Re: Xyrem (GHB) - I am curious, posted by 1980Monroe on July 11, 2004, at 17:09:14
Xyrem activates positive feelings rather than being effective only by supressing your mind, it allows you to feel good and sleep well with no hangover or liver damage. It is supposed to be able to immediately erase suicidal depression and let those folks feel that life is worth living. Just to be able to see that is supposed to help you long term somewhat, especially for people who have not felt that way in years. Xyrem allows you to feel emotions and compassion for others and yourself rather than simply numbing the pain. It does numb anxiety though by suppressing dopamine and there is a bounce-back effect when the stored up dopamine returns but you are supposed to be relaxed and happy then so that just feels energizing. If you abuse it the rebound becomes an anxious withdrawl & that's why you wouldn't want to do it without a doc's supervision if you might be prone to addiction.
Xyrem forces 'normal' sleep with both dream and slow wave cycles so folks with sleeping problems are able to get satisfying sleep at night and then don't fall asleep randomly during the day. One thing that's weird though is the sleep only lasts about 5 hours at most, then you wake up on the hyper dopamine rebound so my thought is it's not wise for long term sleep therapy except in extreme cases like narcolepsy where people are unable to drive a car for fear of suddenly passing out at any moment. That's certainly medically urgent enough to warrant use of this drug.
> Ok, what is the big diffrence between GHB and other sedatives like Xanax, and barbiturates, if they all have a "tranquilizing" effect.
>
> I dont know much about GHB so dont please dont bite my head off.
>
> Why is GHB prescribed for Narcolepsy?
>
> Thank you
Posted by green willow on July 12, 2004, at 13:15:35
In reply to Re: Xyrem (GHB) - I am curious, posted by pablo1 on July 12, 2004, at 10:32:33
> Xyrem activates positive feelings rather than being effective only by supressing your mind, it allows you to feel good and sleep well with no hangover or liver damage. It is supposed to be able to immediately erase suicidal depression and let those folks feel that life is worth living. Just to be able to see that is supposed to help you long term somewhat, especially for people who have not felt that way in years. Xyrem allows you to feel emotions and compassion for others and yourself rather than simply numbing the pain. It does numb anxiety though by suppressing dopamine and there is a bounce-back effect when the stored up dopamine returns but you are supposed to be relaxed and happy then so that just feels energizing. If you abuse it the rebound becomes an anxious withdrawl & that's why you wouldn't want to do it without a doc's supervision if you might be prone to addiction.
>
> Xyrem forces 'normal' sleep with both dream and slow wave cycles so folks with sleeping problems are able to get satisfying sleep at night and then don't fall asleep randomly during the day. One thing that's weird though is the sleep only lasts about 5 hours at most, then you wake up on the hyper dopamine rebound so my thought is it's not wise for long term sleep therapy except in extreme cases like narcolepsy where people are unable to drive a car for fear of suddenly passing out at any moment. That's certainly medically urgent enough to warrant use of this drug.
>Pablo1,
I am wondering if you have ever been prescribed Xyrem? Do you have any first hand experience to know if it actually this wonderful?
Posted by pablo1 on July 12, 2004, at 14:50:31
In reply to Re: Xyrem (GHB) - I am curious » pablo1, posted by green willow on July 12, 2004, at 13:15:35
Nope. I have not tried it. Some people say it's merely like being drunk and very relaxed then sleepy, others get great psychotherapeutic benefit in releasing their inhibitions. Could be just a few people's experience though. Certainly the addicts are not cured but that's the result of very careless 24/7 abuse for months every 2 hours.
>
> Pablo1,
> I am wondering if you have ever been prescribed Xyrem? Do you have any first hand experience to know if it actually this wonderful?> > Xyrem activates positive feelings rather than being effective only by supressing your mind, it allows you to feel good and sleep well with no hangover or liver damage. It is supposed to be able to immediately erase suicidal depression and let those folks feel that life is worth living. Just to be able to see that is supposed to help you long term somewhat, especially for people who have not felt that way in years. Xyrem allows you to feel emotions and compassion for others and yourself rather than simply numbing the pain. It does numb anxiety though
Posted by 1980Monroe on July 12, 2004, at 19:56:52
In reply to Is Xyrem really this wonderful? green willow, posted by pablo1 on July 12, 2004, at 14:50:31
Is it only for narcolepsy, or that i know of, would they ever prescribe it for insomnia? or thats too risky.
Oh well, i would just like some info
Posted by green willow on July 12, 2004, at 22:24:53
In reply to doctors defintly would not prescribe it for anxiet, posted by 1980Monroe on July 12, 2004, at 19:56:52
> Is it only for narcolepsy, or that i know of, would they ever prescribe it for insomnia? or thats too risky.
>
> Oh well, i would just like some infoMy sleep doc actually did prescribe it for me for insomnia, but I am leary to try it. I had to get clearance by someone much higher up in America than I am, and my scrip is presently "inactive" somewhere in some office in the midwest, since I have not jumped for it. My sleep doc says he has not yet used it for insomnia, only narcolepsy, but since it collectifies sleep, that is where he was coming from. FDA has not approved it for insomnia.
Posted by pablo1 on July 12, 2004, at 23:57:35
In reply to Re: doctors defintly would not prescribe it for anxiet » 1980Monroe, posted by green willow on July 12, 2004, at 22:24:53
Why don't you want to try it? I'll answer my reasons if I had been in your position: because it's ridiculously expensive, you'd have to take it forever and it only lasts half the night and lastly because it might leave you with worse insomnia if you couldn't afford it any more.
I'd try it just for the chance to enjoy relaxation for a while but I'm a pot head so there's your grain of salt to go with that! Anxiety is such a damn ever-present thing for me, it'd be nice to be unburdened for a while without a hangover. I get the sense that it has a bit of relaxing effect even after it wears off at therapeutic doses. If I were you, I'd be all over that scrip! Think of all the preposterous side-effects of antidepressants and opiates that are prescribed for sleep and anxiety then imagine simply feeling good. I'd choose simply feeling good in a minute. Nothing wrong with feeling good. Why should we have to suffer the psychosis of antidepressants for a bit of relief? Why anesthesize ourselves into a stupor for a night's sleep?
Feelings of compassion and willing free flowing emotions followed by deep satisfying full sleep followed by a bit more energy. Hell yes, I'd be all over that scrip!
What possible excuses could they be thinking that it's not appropriate treatment for anxiety? A bunch of damn puritans I tell you!
http://www.biopsychiatry.com/ghb/authentic.html
(yes I realize this guy was way wrong saying there is no potential for addiction)"You may feel uncurable dysphoria with suicidal ideation, anxiety, etc, and think that no medicine or no one could help you until you try gamma-hydroxybutyrate! Afterwards you might just think how crazy you were and feel how life is beautiful and deserves to be lived and enjoyed! Gamma-hydroxybutyrate strongly stimulates the desire to be and to remain alive despite unfavourable circumstances. No conventional so-called antidepressant does that."
Give it a try and let us know how it goes. That's my advice. You lucky dog.
>
> My sleep doc actually did prescribe it for me for insomnia, but I am leary to try it. I had to get clearance by someone much higher up in America than I am, and my scrip is presently "inactive" somewhere in some office in the midwest, since I have not jumped for it. My sleep doc says he has not yet used it for insomnia, only narcolepsy, but since it collectifies sleep, that is where he was coming from. FDA has not approved it for insomnia.
Posted by greenwillow on July 13, 2004, at 16:48:48
In reply to doctors [should] prescribe it for anxiey, posted by pablo1 on July 12, 2004, at 23:57:35
Just hesitant, but a very big reason is that I have terrible stomach trouble. Also I was warned that I might get up and do anything and be unaware of it, and since I was recently in a serious accident, don't want any more injury. Also, I was told I may wet the bed - our bedding is quite nice and I don't want it ruined. In my case, my insurance has already approved payment.
> Why don't you want to try it? > Give it a try and let us know how it goes. That's my advice. You lucky dog.
>
>
>
> >
Posted by pablo1 on July 13, 2004, at 18:03:36
In reply to Re: doctors [should] prescribe it for anxiey » pablo1, posted by greenwillow on July 13, 2004, at 16:48:48
I'll bet those are extremeley rare unusual side effects: sleep walking, etc.
> Just hesitant, but a very big reason is that I have terrible stomach trouble. Also I was warned that I might get up and do anything and be unaware of it, and since I was recently in a serious accident, don't want any more injury. Also, I was told I may wet the bed - our bedding is quite nice and I don't want it ruined. In my case, my insurance has already approved payment.
>
> > Why don't you want to try it? > Give it a try and let us know how it goes. That's my advice. You lucky dog.
> >
> >
> >
> > >
>
Posted by Bob Grozier on January 21, 2013, at 2:41:23
In reply to Xyrem (GHB) - Why isn't anyone curious?, posted by utopizen on May 30, 2003, at 18:50:22
I have been on xyrem for 6 years due to a chemically induced brain injury by two urologists. I've been on disability for 11 years - when I was injured and for those first 5 years slept maybe 2 broken hours per night. I was psychotic. Now my company is changing all disabled and retirees from the good group insurance we had with medico to crappy medicare based aarp insurance who won't pay for xyrem unless you have narcolepsy. I am fighting at every stage of appeal and even hiring an expensive lawyer. My doctor uses it off label for brain damaged severe insomnia - the FDA allows docs to use medication off label. But the damned insurance is making this very almost impossible. I think if I have to go back to those 2 hour sleep nights, I will end my life. I cannot live like that anymore. I will be 54 in a few weeks and I am tired of suffering from the bad drug reaction for 11 years caused by two idiot doctors. I cannot carry the weight of the agony without sleep - the most important need in a brain injury. The meds given to me that destroyed my brain 11 years ago were Cipro (a powerful quinolone antibiotic) along with Vioxx (a powerful NSAID) . It is well documented quinolones given concomitantly with NSAIDS causes severe central nervous system injuries - PLease never even take a quinolone they are VERY dangerous. I may have to learn how to make GHB from someone who understands chemistry. I know it's simple, but I would pay someone to go through it with me once.
This is the end of the thread.
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