Monday, August 10, 2009

Dose-Changing Blues

My doctor raised my Xyrem dose almost a month ago because we were hoping I would gain a little more energy and wakefulness. Since then I've been dealing with a lot of bouncing around between extremes with the occasional nightmares and hallucinations on one side and anxiety, nausea and awakeness on the other. I finally feel like it's settled out this past week, but in addition to being more awake I'm back to my old unpleasant side effects of nausea, lack of appetite and anxiety. I decided over the weekend when I was really anxious that I was going to call my doctor today, but then yesterday I felt a lot better and was vascillating.

This morning I woke up really nauseated and anxious and decided to just call and see what my doctor wants me to do. I figured he would raise my Remeron or lower my Xyrem, and he chose the latter. I think it's the right thing to do but I have to admit that I'm a little annoyed. I've spent the last month dealing with extra junk because of the raised dose and part of me feels like everything I went through was in vain if we're just going to change it straight back. But I know that it had to happen this way because there's no way to know how I'm going to do on a dose without trying it, and sometimes it just doesn't work out.

Another reason I'm miffed is that now I get to deal with the dose-changing extra junk again as a lower it. I could technically wait a few days, but I'm tired of being anxious so I'm just going to go ahead with it tonight. Nothing like medication-induced anxiety to get the ball rolling, so to speak.

I'm also kind of relieved, to be honest. I don't want to be on the highest Xyrem dose, particularly. I do worry about its effect on my digestive system, which was more than dysfunctional before I started dumping salt in it three times a night. Also, I can't quite shake the feeling that I was doing better energy-wise before I raised it in the first place. It's difficult to know for sure about these things when your memory is crap and your brain is a little mushy on its good days, so I could be making this up, but I do wonder. And apparently I will find out in the next couple of weeks. If I can remember to wonder about it, that is. Haha.

When I called my doctor's office today to leave a message I forgot my message halfway through reciting it to the secretary, which was hilarious. I apologized and suggested that maybe they were used to that at a neurologist's office, to which she replied that they get that a lot. At the very least this stuff does give me some pretty good stories.

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