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blazerjen

Dystonia

6 posts in this topic

Do any of you have problems with dystonia? Mine started in my feet and Mirapex has really helped but now I am starting to get it in one of my hands. It has become hard to drive or write when it is "acting up." I wonder if there is another medication that might help more than the Mirapex.

 

Thanks,

Jen

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Hi Jen, I am inclined to get massive cramps in my legs that make my eyeballs almost pop out. My Doctor prescribed quinine tablets that work in preventing the cramps. My preferred method though of getting the quinine is drinking tonic water. (with a shot of gin and a twist of lemon). The tonic water sold here in Canada contains quinine, I presume yours does to. I guess I presumed as well, that you are from the States. You can also drink it with orange juice or take it straight although it is a bitter taste. For some reason, I seem to get a sense that the cramping is going to happen in the next day or two, I drink tonic and the warnings go away. Good luck Jen, John.

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I get calf cramps nearly every morning but luckily they don't last long. They are horrible for sure. Have to remember the quinine.

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@jen,please check how quinine interacts with your meds online before consumption.Just an advice from a newbie.I have distonia too just like you in the mornings,I treat it with execise on an elliptical or stationary bike for 5mins then apply cold packs.

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I started on Mirapex for my dystonia and moved on to  sinemet after about 1 year.  Dystonia is my main PD problem and always has been.  I was officially diagnoised 6 years ago and now I take Mirapex and rytary.   I also take 5mg of valium at night to stop the cramping from the dystonia and once a quarter I get botox injections in my leg to lessen the dystonia in my foot.

 

As my medications wear off my dystonia starts in the toes of my left foot.  If I don't get medicine in me quickly it moves up to my left ankle then calf, next my back cramps up and just recently my neck has joined in the fun. 

 

You still have lots of options to control your dystonia.  My next move will be DBS

 

Delta

Edited by Delta

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