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Old 04-07-2010, 10:33 AM
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Conductor71 Conductor71 is offline
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Join Date: Jul 2009
Location: Michigan
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10 yr Member
Conductor71 Conductor71 is offline
Senior Member
Conductor71's Avatar
 
Join Date: Jul 2009
Location: Michigan
Posts: 1,474
10 yr Member
Default Agree on the acetylcholine

I agree with Paula. My experience with dystonia seems to support the theory that it may be due to drop in dopamine and presence of more acetylcholine (dopamine normally modulates our other neurotransmitters).

My first nagging suspicion that my diagnosed ET was really PD stems from development of an action induced cramp in my right foot - toes curled under; this is widely considered a hallmark of early PD.

When I started levodopa therapy, the cramping disappeared unless I took a walk at the end of a dose. Also, tried Mirapex alone and it did not touch the dystonia.

Now, two years post diagnosis and levodopa (+requip xl) therapy, I was waking up to painful toe curling, arching, and separating. I decided to try and add a 1/2 benadryl at bedtime and now have hobble-free mornings (for the most part). Benadryl is an anticholinergic; it helps lower our acetylcholine levels.

I've discovered though that PD is very much like raising a small child, just when you think you've got it all figured out, it switches up on you. Now, it seems if I want to veg and knit or read before bed, as I near the end of my last dose of the day, I end up with not only a cramped foot but it sometimes extends into my calf. If I try to stretch my calf, I get an excruciating Charley Horse. The only relief comes from taking a full benadryl and 1/2 Sinemet if I can't take the pain.

Oddly, I find that trying to walk; normalizing the muscles, actually helps overcome the dystonia. Though I am lucky that I have never had it in my neck or back- ouch! My dystonia isn't all that painful; it's more a nuisance and worries me because I have a young child. Always afraid my foot is going to go rogue on me and i won't be able to walk to my son if he is crying- I worry that I might fall with him. Then I get really ticked off at the PD and start to rather stomp around the room (think Ministry of Silly Walks - Monty Python), cursing under my breath; this sometimes works, and other times I retreat to bed knowing that tomorrow brings another chance to have a better day.

HTH

Laura

P.S. Have heard a special muscle relaxer helps with this called Baclofen.
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