Dystonia Diary

This is what it's like to have cervical dystonia - the good, the bad, and the ugly. Actually, there's nothing good about it.

Saturday, January 28, 2006


It's been about a week and a half since the Botox, and I don't notice much difference yet. My neck doesn't hurt as much, but the dystonia is still the same, I still get tension headaches, my back hurts more, my head still shakes occasionally, and I haven't had a good night's sleep about 2 months. I was hoping to at least sleep a little better by now. I was so tired at work that I thought I'd fall asleep on my feet! Maybe by 2 weeks I'll notice more of a difference. If not, it's going to be a long 4 months until my next shots.

Good news is that I got some extra pay (a "floating holiday" I never took), and I have 4 days off in a row! I can catch up on my sleep, and prune my roses - before it's too late.

Tuesday, January 24, 2006

Late update

I finally got more Botox last week! 13 shots, for a total of 59 so far (35 during May and June, then 11 more in August). Within an hour of getting the shots, I had the usual numbness, minor muscle weakness, a stuffy nose, and for the first time a really strange laryngitis, all of which cleared up in a few hours.

Now, a week later, I'm having some trouble swallowing (as expected). There's been very little improvement, but I probably won't have the maximum benefit for another week. The one noticable improvement I've had is that my constant tension headache is almost completely gone!

I'm sleeping a little better, but there's still a lot of room for improvement in that department.