I'm baaaaack!

I almost forgot about this blog. I've been busy with lots of things online & offline. Anyway...

Normally my Dr is pretty good with injecting the right muscles, but not this year. Although the pain relief has been pretty good, I've had no dystonia relief,and it's getting worse. My head is turning further to the right, pulling further back, and pulling more towards my left shoulder. My left shoulder is pulling up more, too.

My Dr said I was a "moving target" because it seems like there's different muscles involved at different times. What he's been doing is injecting Botox into whatever muscles seem tight. Since he's not a neurologist, and doesn't have the equipment to determine exactly which muscles are affected, he can only treat the ones that are tight. It hasn't been working this year, and he's going to try a different strategy next time.

The insurance company won't let me see a neurologist because they say that Botox is an experimental treatment for dystonia (even though it's standard procedure). I can't shop around for doctors because it's handled by Workers Comp & the only other Dr they found for me is a lot farther away than the one I'm seeing now. It's frustrating, but at least my current Dr knows what dystonia is, and has experience with treating it.

It would be nice if I could get more than 3 hours of sleep at once. I asked my Dr a couple of times about trying Valerian or Melatonin, but he doesn't want me to experiment yet, since I'm taking 40 mg of Baclofen & 20 mg of Zanaflex at night to help me sleep (& it's not helping enough). I may try Celestial Seasonings Sleepytime Extra (with Valerian), but cautiously. One sip between nighttime meds every night for a week to see if it plays well with them. If it does, then 2 sips at night for a week etc. until I get more sleep & can cut back on the bedtime meds. I don't think my Dr will be happy about it, but I'm sick and tired of not getting enough sleep, and being so heavily medicated at bedtime.