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, February 25, 2006


I'm not too happy with my latest treatment. The Botox shots have provided good pain relief for my neck, but now my left shoulder hurts more each day and hunches up, my head hangs down to the left a little more, and I'm still having tension headaches all the time. That's in addition to my head being twisted to the right. And now that I have another new insurance adjuster (6 in 2 years), I don't know if he'll agree to authorise more Botox - or anything else - as needed. Guess I'll find out when my doctor asks for more.

The good news is that now that my cold is finally gone, I can finally sleep at night.

Wednesday, February 15, 2006

Latest appointment

I saw my doctor for a follow-up yesterday. It went well, as they always do. I told him about the new muscle weakness that causes my head to lean down and to the left more than before, and the increased pain in my left shoulder. He said that it's a fine line between using enough Botox for pain management, but not too much to cause muscle weakness. I told him it was a nuisance but not a major problem. He said I may need more Botox on the left side. I'll be surprised if the insurance company authorises more Botox so soon. I should be able to get by with aspirin and Ben-Gay, but as long as the muscles on the right side of my neck are weak, it'll be straining the muscles on the left side.

Ah, the joys of Botox. :-)

In spite of all the weird effects of the Botox, I'm doing a lot better than I was before. My doctor has done me a lot of good. I'm not even close to being "back to (pre-dystonia) normal", but I know I never will be. As long as I'm relatively pain-free, and functional enough to keep working, I'm happy. Relatively happy, anyway. ;-)

Monday, February 06, 2006

Something new?

Over the last few days I've noticed a new "thing". In the past, when I'm only using my right hand, my left arm is just hanging at my side - like it would be for anyone. Recently I've noticed that it tends to almost attach itself to my side, slightly bent at the elbow. I'm not doing it on purpose, and I can easily stop doing it, but it's kinda strange. It's also similar to the way my cervical dystonia started. I hope this isn't some new kind of dystonia I'm getting - the head shaking is bad enough! I'll have to ask my doctor about it next week.