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A real opinion on Xyrem

Posted by sleepydog on August 20, 2003 at 01:07:52:

It seems to me that no one wants to talk about this taboo little subject, yet many people want to know. So I am willing to tell how I feel about Xyrem based on a little experiment that I did reciently.
I will no longer have insurance starting next month so I decided to test whether this Xyrem stuff that I have been taking for months was really worth all of the trouble that it is going to be to keep (maybe).
So I didnt take it for a couple of days. The first day I thought "gee! I havnt slept so long and so well since before treatment!" It was kind of nostalgic.
The second day I was already tired of being tired (which I know you can all relate to)and that all familiar sense of hopelessness.I already missed my active Xyrem life. By the third day I had decided to stop my experiment.
Is it the answer to all that we have been looking for? Certainly not. Along with it (for me) comes trouble sleeping, occasional nausea, and possible bouts with depression and anxiety (or maybe that is just Narcolepsy!), explaining why I cant drink at parties etc. All of the things that are normal to any med. however, I do realize that without it I would not feel comfortable going into a science program at the University, I do realize that I would not consider going into a doctoral program and I do realize that I would not be able to work, or exercise or sometimes even make myself breakfast (or lunch, or dinner). So I cant tell you all whether it is worth the fight. For me it means being able to deal with the loss of a limb instead of lying limp on the ground because something upset me. For someone else it may be a misery. I also take ritalin. It apparently wasnt as effective as I thought since 95% of my EDS came back without the Xyrem (I was VERY surprised by this!). Xyrem is a scarey drug for many reasons, but taken responsibly it can change a persons life...at least mine. I dont know why no one here talks about it much. If it is because it is still rare or because no one knows how. But I do know it is part of our culture to be concerned with it. Every morning I get up and take drugs, I take them at night when I go to sleep, in the middle of the night I wake and take them, and now I may need to add one more to make up for the other two (anyone out there had good experiences with Paxil?) so I cant tell. I wish things were not the way they are, but for the hand I was dealt I think I am doing ok. Do I get to work and go to school? No way! You know that! But maybe with the good support system I have and a tenatious heart I will perservere in getting this silly doctorate that I will probably do nothing with. With any luck I will find a great new treatment for some rare disease or disorder. Maybe Narcolepsy. Maybe I'm crazy. Or maybe I just need some sleep. Thanks for the support everyone. I havnt been here in a long time but I am still very grateful for this forum.

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