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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 13 of 13. This is the beginning of the thread.
Posted by Ame Sans Vie on April 11, 2003, at 19:41:39
http://www.orphan.com/ArticleDetail.cfm?ID=371
"During 2003, the Company expects to begin a proof-of-principle study to evaluate Xyrem for symptomatic treatment of Fibromyalgia Syndrome (FMS), a chronic condition that is estimated to affect as many as six million individuals in the United States. Fibromyalgia Syndrome is characterized by widespread pain in joints, muscles, tendons, and other soft tissues. Other symptoms include persistent fatigue, headaches, cognitive or memory impairment, morning stiffness and non-restorative sleep. The cause of fibromyalgia is unknown, although an imbalance in growth hormone production may play a role. Studies have demonstrated improvement in symptoms in FMS patients given growth hormone. In addition to increasing restorative sleep, Xyrem may be a growth hormone secretogogue and may therefore produce symptomatic relief. The Company does not expect results from this proof-of-principle FMS study until the second half of 2004."
Maybe I can get rid of this horrible Elavil and begin using Xyrem for more restorative sleep. Though, I have to wonder, even since I first started taking Elavil for restorative sleep, I haven't noticed any of the symptoms of FMS/CFS diminish. Except of course when I pop Flexeril and Soma all day (not complaining about that though, lol). But I digress...
Also of interest:
"Orphan Medical stated that it has begun development of a new patent-protected formulation of Xyrem. The Company is evaluating formulation alternatives that could extend the activity of a single Xyrem dose from the current two-four hour range to a six-eight hour range."
Now this makes a little more sense to me... I mean, how could a person get a totally restorative sleep if they have to set their alarm to wake up in the middle of the night for their next dose?
Posted by utopizen on April 11, 2003, at 21:07:28
In reply to Xyrem for fibromyalgia/chronic fatigue syndrome?, posted by Ame Sans Vie on April 11, 2003, at 19:41:39
Have you tried Klonopin?
Posted by Ame Sans Vie on April 11, 2003, at 22:06:47
In reply to Re: Xyrem for fibromyalgia/chronic fatigue syndrom, posted by utopizen on April 11, 2003, at 21:07:28
Yeah, I've taken Klonopin on and off for several years, but now I take Tranxene (clorazepate, another benzo) and it feels less cognitively dulling than the clonazepam. But the thing is, benzos do the *opposite* of what it is we're trying to accomplish. They suppress deep sleep, thus you wake up the next morning feeling groggy and unrested.
Posted by Larry Hoover on April 11, 2003, at 22:38:29
In reply to Re: Xyrem for fibromyalgia/chronic fatigue syndrom, posted by Ame Sans Vie on April 11, 2003, at 22:06:47
>But the thing is, benzos do the *opposite* of what it is we're trying to accomplish. They suppress deep sleep, thus you wake up the next morning feeling groggy and unrested.
I don't know about all benzos, but temazepam is used to restore normal sleep cycles. If I recall correctly, a metabolite of diazepam is oxazepam, and a metabolite of oxazepam is temazepam. For me, temazepam gave me restorative sleep for th first time in many years. I used it nightly for over two years without any loss in efficacy.
Lar
Posted by Ame Sans Vie on April 11, 2003, at 23:04:33
In reply to Re: benzos and sleep architecture » Ame Sans Vie, posted by Larry Hoover on April 11, 2003, at 22:38:29
> I don't know about all benzos, but temazepam is used to restore normal sleep cycles. If I recall correctly, a metabolite of diazepam is oxazepam, and a metabolite of oxazepam is temazepam. For me, temazepam gave me restorative sleep for th first time in many years. I used it nightly for over two years without any loss in efficacy.
>
> LarI'll have to look into that, thanks... what about Ambien or Sonata? Do you know anything about how they affect sleep architecture? Trazodone and Remeron don't help me fall asleep anymore, I've always found Benadryl and other antihistamines to be stimulating, and the Elavil I'm taking now (150mg hs) doesn't actually put me to sleep--it just improves the quality of sleep that I get.
Posted by btnd on April 13, 2003, at 14:14:58
In reply to Xyrem for fibromyalgia/chronic fatigue syndrome?, posted by Ame Sans Vie on April 11, 2003, at 19:41:39
Suddenly, the so-called date-rape drug, with no medical values - becomes a valuable treatment for fibromyalgia/chronic fatigue syndrome and is a wonderful sleep aid? Where are the stories now, about the harmness of it? Why don't they mention it (grevious bodily harm, etc.)
Now it's plain and simple why FDA banned GHB. So that another company could get rich off it (Xyrem is extremely expensive, compared to what GHB used to cost before the ban).
Posted by btnd on April 13, 2003, at 14:16:36
In reply to Q to Larry, posted by btnd on April 13, 2003, at 14:14:58
n/m
Posted by utopizen on April 13, 2003, at 23:31:10
In reply to My bad..it wasn't q to Larry- just a note on Xyrem, posted by btnd on April 13, 2003, at 14:16:36
keep in mind addiction journals and people who devout their careers to studying addiction psychopharmacology sustain their living by these drugs. If someone comes along and can claim a drug's "addictive" and "dangerous" they just won themselves hundreds of thousands of dollars in more grants for themselves to research more about the drug.
So there's a pathetic bias here no one sees but those who study addiction psychopharmacology... including toxicology issues. The FDA didn't have a problem with it, so it's odd the addiction researchers do...
note why almost every clinical study says "this raises an interesting point, but will require more research to prove it more." It's so the researcher making that conclusion can use it as a means to secure more grants for themselves.
science is not devoid of biases, let's not be so naive. These aren't priests running these studies for charity.
Posted by Franz on April 14, 2003, at 12:45:10
In reply to Re: benzos and sleep architecture, posted by Ame Sans Vie on April 11, 2003, at 23:04:33
>But the thing is, benzos do the *opposite* of what it is we're trying to accomplish. They suppress deep sleep, thus you wake up the next morning feeling groggy and unrested.
Is that true?. Many times I heard benzos alter sleep, but never could find any articles that explain it.
I take a low dose clonazepam at night and I see it has an effect, but I am not sure if it is negative. What I see is that I do not tend to oversleep, I wake up early. I also dream, so I think the sleep must have some depth.
Thanks
Posted by btnd on April 16, 2003, at 12:41:34
In reply to is that true? Re: benzos and sleep architecture » Ame Sans Vie, posted by Franz on April 14, 2003, at 12:45:10
> >But the thing is, benzos do the *opposite* of what it is we're trying to accomplish. They suppress deep sleep, thus you wake up the next morning feeling groggy and unrested.
>
> Is that true?. Many times I heard benzos alter sleep, but never could find any articles that explain it.
>
> I take a low dose clonazepam at night and I see it has an effect, but I am not sure if it is negative. What I see is that I do not tend to oversleep, I wake up early. I also dream, so I think the sleep must have some depth.
>
> Thanks
It ALL depends on the person. Everyone is different. For me clonazepam prior to sleep makes me WAKE UP feeling anti-depressed. My normal waking up used to be: feel like s**t, "god - I have to do all these things today":). With Klonopin, my life has changed in a positive way- I no longer see anything as a problem, I just try to find a solution to it - with no anxiety it is easy to do.
Posted by stjames on April 16, 2003, at 15:37:59
In reply to is that true? Re: benzos and sleep architecture » Ame Sans Vie, posted by Franz on April 14, 2003, at 12:45:10
I also dream, so I think the sleep must have some depth.
>
> Thanks
Dream stage is very light sleep, almost awake.
Posted by Viridis on April 16, 2003, at 23:02:27
In reply to Re: benzos and sleep architecture » Ame Sans Vie, posted by Larry Hoover on April 11, 2003, at 22:38:29
I take Klonopin every day (in the AM) and Xanax occasionally. The best sleep, and best mood, I experience (the next day) is after taking 1 mg of Xanax before bed. I rarely use Xanax for sleep, but when I do, I feel very rested and positive the next day. So or me, it can't be interfering with sleep architecture too much. And with Klonopin, insomnia is much less frequent than before. The worst insomnia, and worst (medicated) sleep I've experienced has been with SSRIs and Wellbutrin.
Posted by bigbush on August 16, 2003, at 4:40:34
In reply to Xyrem for fibromyalgia/chronic fatigue syndrome?, posted by Ame Sans Vie on April 11, 2003, at 19:41:39
I am so confused.
We really are victims of the drug companies and doctors.
I want to know the scientific truth, not just peoples opinions.
What can increase restorative sleep truely?
What are the side effects and pros and cons of all these different drugs?
SSRIs
Tricyclics
Benzodiazipines
We certainly are spending millions of dollars on drug companies and doctors, and patients are suffering.
And I dare anyone to dispute that!
This is the end of the thread.
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