Monday, September 04, 2006


It appears I may not have what one doc was sure I had. He thought it was atypical trigeminal neuralgia, but I always kind of hesitated when I read the description of it. I wasn't quite sure that was what it was.

The other day my most recent neurologist mentioned a phrase again he'd used before, and I asked him to write it down. When I got home I looked it up, and the definition is so much like me it's scary.

It's called Hemicrania Continua, a rare form of chronic daily headache that almost always responds to Indomethacin. The thing is, Indomethacin is what is used to diagnose and treat it, and I can't take that drug. It reacts badly in my body. I swell up and get confused and incoherent.

Still, the thought that I have something with a name, and something I look at and say, "Hey, that's me!" is a good feeling in a way. I'm sure they have other meds they can give me to help with the pain. Other people are sensitive to that drug, too, and it tears up your stomach and most people can't use it for very long anyhow. I think the max is like 5 years.

I was really surprised to see that Yahoo has a group for this disorder. That was neat. I didn't think they would. I bookmarked it and if it turns out that's what I have I'll join the group. There aren't many people with this disorder and it would be good to even have just a few I can talk to about it. It would help with the feeling of being alone.

I was up early again with pain in my head, so I decided to give in and take half a Vicodin. I only took 1 1/2 yesterday. I'm trying to limit it now to only taking them when my pain gets to a 7. I remember when I took them at a 5, but then the 5 became a constant companion, and now it seems as if a 6 is where I'll level out, so a 7 it is.

It's amazing what we can live with once we accept that whatever it happening is just how it's gonna be. Sure, I could moan and groan, but that wouldn't do anything but make me and everyone around me miserable. I might as well make the best of what I have and do what I can when I can and then when I have to rest, I'll rest.

Adaptation is a good thing, I guess.

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