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Re: Re: Interesting tidbits on Xyrem

Posted by PillowGirl on September 20, 2002 at 21:47:04:

In Reply to: Re: Interesting tidbits on Xyrem posted by Windexgirl on September 20, 2002 at 19:26:08:

Swedish Sleep Center is one of the centers participating in the clinical trials. My Dr there is one of the key reseachers. They asked me if I wanted to participate. I honestly feel more comfortable taking Xyrem over Provigal since it has been used in Europe for a few decades.

The study people are really good about accomodating your schedule. You have a 2 hour intake followed by a sleep study. Then they give you two weeks of meds. Then another sleep study 2 weeks later. Then a month of meds, another study. 4 more weeks of meds and then the last study.

They scheduled all of my sleep studies for Friday night and Sat. day. You also get paid $200 dollars per sleep study.

This study is to specifically determine the effectiveness on EDS (they already have data that shows it effective for this).

The primary focus of the study that got them FDA approved was Cataplexy.

I took Cylert years ago for N and then stopped (That is a whole seperate story. My parents convinced me that I had not been diagnosed w/ N at 15). I don't recall the Cylert side effects. i have never taken Provigil.

My side effects from Xyrem:
2 weeks of severe nausea in the am. Headache and body ache after taking- gone by the morning. Decreased appetite.

All of the side effects went away after a few weeks- except for the appetite loss.

Benefits:
Dramatic reduction of stress and C attacks. I don't fall asleep in the passanger seat. I have more energy and clarity. I don't feel as drowsy.

Dunno if this is a negative thing, but I seem to have become fairly apathetic about my current career. It has never been my dream job (which I now have the energy to pursue).

I have been doing alot of thinking now that my life does not revolve around summoning the stregth to get the daily tasks done. This enegy thing seems pertty novel 80)

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