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.
posted by I go by many names... @ 7:23 PM
2 Comments:
I ran across your blog this morning and I'm so curious about many things. I too live in Ca. I've never heard of Dystonia being caused by repetative motion. I'm sad that your enduring the pain of botox shots not placed correctly, my primary care physician, who did not know what dystonia was had recommended that I go to a pain management doctor. I refused, my life is too valuable and CD is too complicated and awful not to see a specialist. I started my first round of botox in April and the improvement has been amazing. I don't know where you live here in CA but I get my treament by an amazing doctor at the Parkinson's Institute and Movement Disorder Clinic in Sunnyvale, CA. They are AMAZING PEOPLE there! I know you said you can't because of Workers Comp, but if you could call or figure out a way...the technology they have is amazing...I love them.
If your up for the fight...I know it's hard because I've been fighting with my insurance too...but it's worth it although so difficult at the same time. The thought of a pain management dr. giving me the shots without the appropriate equipment makes me shutter, it's like a shot in the dark..no pun intended. I wish you wellness!!! Keke
I wish I lived near Sunnyvale! Instead, I live in Monrovia (Southern California). Year after year, the Workers Comp insurance company keeps saying that Botox is experimental for dystonia, & they won't make an exception just for me. I'm seriously fed up with it, but my Dr *was* doing a pretty good job before.
I have a Botox appointment this Wednesday, so I'll post about it later that day. I'll do another post tonight, too. I'll try to find links for dystonia & repetitive motion.
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