Comments on: Narcolepsy sleeping pill Xyrem seems to improve fibromyalgia symptoms as well

By: Doug

Doug — Wed, 03 Nov 2010 09:04:26 +0000

Jazz Pharma is still in conversation mode with the FDA. The FDA’s objection in not so much the expansion of the drug availability as its delivery system does not make sense to them. You have to mix it with water and it only lasts 4 hours. So you have to get up half way through a steady sleep cycle to take another dose. To those intellectuals, it would be confusing why people would want to take such a medication.
In my case, I would be delighted to be able to go to sleep at a reasonable time even if I were only guaranteed 4 hours. I feel that I would probably sleep on once by body gets relaxed enough to get to a deeper state of sleep. Over the last 19 years I have become accustomed to changing sleep cycles and many nights without sleep even using Ambien. With Ambien, once it does not work, then your screwed for that night because you are only given limited number of pills. If you don’t take it all one night, your are guaranteed not to sleep.
Because of our physical and mental limitations, it makes it impossible for us sufferers to organize a lobby effort to get these people to listen. But if you can, write your Representatives and the FDA.

By: Mandy

Mandy — Mon, 07 Jun 2010 21:11:41 +0000

I’m never much for using drugs to treat my fibromyalgia. I was diagnosed with fibromyalgia four years ago, and I have been struggling daily just toget out of bed and go about my day. The treatments in the book “Beat Sugar Addiction Now!” by Dr. Jacob Teitelbaum (http://endfatigue.com/) have made a huge difference in my life. I am not cured, but my symptoms are much less and I have a lot less aching and less pain……….I feel that the SHINE protocol which is described in detail here has made such a huge improvement in my quality of life. I was surprised to see thatt he author had suffered with this same condition and had used the treatments he describes here to treat himself and to get himself well enough to complete medical school and live a good life. Knowing that he has been where I have been makes all the difference as far as I am concerned. Dr. T is one of the foremost experts on Fibromyalgia and CFS in the country – be sure to follow him on Twitter: http://twitter.com/DrJTeitelbaum

By: Michelle jadaa

Michelle jadaa — Thu, 27 May 2010 18:29:27 +0000

It apparently costs aprox $5oo a month the Narcolepsy doseage so im not holding my breath:(