Off Dyskinesia-anyone else have it? What... - Cure Parkinson's

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Off Dyskinesia-anyone else have it? What's your fix?

YOParky profile image
10 Replies

Approximate 11 years into taking sinemet my pharmacy started only carrying generic versions. Which I'd when I started experiencing dyskinesia when the Carbidopa/levadopa started to wear off. And was told snd treated by a movement specialist that I was over medicated and attempted to reduce my dosage and frequency. Which ultimately caused dystonia of my shoulder to where my shoulder was near of popinh out of place. If I would have had a straight jacket on I probably would have been able to escape.I also began to smile involuntarily as if I was the joker. Not fun at all. The movements specialist ignored the fact that this was caused by the reduced dosage and claimed I was a dopamine junkie and needed to reduce the dosage and frequency.

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YOParky
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10 Replies
park_bear profile image
park_bear

Fire that MDS and find an MD who will work with you

eschneid profile image
eschneid in reply topark_bear

Agree with PB 100%.... .

I take Amantadine 2x/day 100 mg each for dyskinesia & it helps.

Eric

YOParky profile image
YOParky in reply topark_bear

Oh I fired him.

YOParky profile image
YOParky in reply topark_bear

He's been fired. Amantadine gave me adverse side effects and insomnia grr

DEAT profile image
DEAT

Here we go again.Blame the patient.

Hopeless

shaken-not-stirred profile image
shaken-not-stirred

Yes find another doctor - some of the poor things think they are the expert - no you are the expert and he/she is there to listen and work WITH you for the best outcome. I get very cranky when I hear this rubbish from so- called movement specialists that they know more of how these drugs are affecting you. Find a good neuro - they are out there.

YOParky profile image
YOParky in reply toshaken-not-stirred

I agree! Thank you!

MarieG61 profile image
MarieG61

Darned if you and darned if you don't. Have been taking Sinemet for over 10 years and have recently started Rytary so I don't have to take Sinemet pill every hour. Two Rytary are supposed to last 4 hours. It barely lasts 3 for me so I still take a sinemet to bridge the gap. Am now experiencing Diskenesia and various tics. Getting enough sleep is a big challenge. I haven't paid attention to limiting protein but maybe I should. I would like to take less but tremors and stiffness are no fun either. Gotta pick my battles. Also have difficulty breathing and rapid heartbeats which started after Rytary. Good thing I have a supportive partner and friends. Courage my fellow parkeys! We must keep calm and carry on!

park_bear profile image
park_bear in reply toMarieG61

Taking rytary at that frequency can result in a stacking effect - increased levels as the day wears on.

Discussion of breathing difficulties here: healthunlocked.com/cure-par...

YOParky profile image
YOParky in reply toMarieG61

Yes I agree sleep is crucial in deterring dyskinesia. I also feel the same with gut health but seems to very difficult to figure out.

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