For many years, sinemet worked fine for me, but now I'm one of those people who gets dyskinesia from it. I've tried different combinations of amantadine and GoCovri (extended release). but it doesn't have much effect. So I take as little Sinemet as I can get away with. First dose at noon.
There are at least a couple drugs being developed that may help with dyskinesia, but they're still in research trials.
I was wondering if any of you have experimented and found creative ways to reduce dyskinesia?
Thanks for any ideas!
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craigwharris
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Coffee gives me so much dyskinesia that I do MJF impressions (can barely walk and limbs flail around everywhere.) When I switched to decaf coffee 90% of the dyskinesia went away within a day or so. I guess anything caffeinated (tea, cocoa) would have the same effect.
That's interesting! I do drink coffee, but don't "think" it has much effect on my dyskinesia. But I'm going to do some experiments without it. See what happens. Thanks!
I started feeling dyskinesia one year after starting Sinemet. I experience dyphasic dyskinesia which is hard to understand, basically I get it at peak concentration of levodopa and at the time where it is the lowest. I manage dyskinesia by keeping my doses of levodopa at 150 mg every 3.5 hrs. Also, if I am physically moving like walking or playing sports, I suppress dyskinesia.
This is exactly the type of dyskinesia I have which has started a year and a half after starting sinement. I approach it the same as you Hercules, and it helps.
I also I have dyphasic kind. It took me a while to figure it out. Similar to you. I minimize dose and frequency of CL. I do run/jog for exercise. I haven't noticed yet if it helps, but a good thing to check for. Thanks for the response hercules957 and BeedieBird!
Active movement helps me too. The worst is sitting at a table typing (like now...) or eating. I was even asked to leave a restaurant once by the manager after he told me I had had enough to drink. I was drinking water and it was only 6pm. I left in tears after I told him I had Parkinsons. He apologized profusely -but not immediately. "I guess I can see you are not drunk now." The worst part is you keep trying so hard to be "normal" and realize it doesn't always work. I park in the spot farthest from the door and do some arm circles too before I go into somewhere public now. Just a little chuckle: my son is 6ft 3 and a professional ice hockey player. He is a beast. He visitted the restaurant the next day and educated the 5ft 3 manager (who happened to be on his first day with me) about Parkinson's. He was very polite but I think sweat dripping down the manager's face was probably a little unusual for him.
OMG! I also experienced something similar...I sat a bar/restaurant and heard people say "she is really drunk." The dyskinesias snuck up on me...it's terrible, yet I wanted to say something to educate..I let it go. totally agree standing or active movement helps.So sorry u went thru this too.🙃
My wife is living PD almost 20 years. She is 61 years old now. She also facing the problem for taking to much Sinemet and Modopa that caused her to have a strong dyskinesia when take the same medicine ( Sinemet or Modopa ) for long time. Sometime , she take Amantadic once a day to reduce the dyskinesia, but it help only for short period of time. My experience is to ask her to change from Sinemet to Modopa overtime , if she found Sinemet come to the peak level in her brain, then she should change it to Modopa instead of Sinemet for while. Sometime she have to mix Sinemet and Modopa with the day depend on what effective she gain from this method. Sometime I asked her to reduce both to the minimum level as she can do for 3 to 4 days then she should have started from small amount of Sinemet or Modopa that she can control the condition of her on/off time as well as her dyskinesia.
It looks like there are a wide range of conditions it can be used for. How do you recommend getting some and trying it? Work with an herbal doctor or therapist?
Thanks for the responses and info. I live in an area where there are lots of alternative medicine people. I can probably talk to one of them about it. I'm guessing that it doesn't require a prescription
Thank you House2 for the link; however, the study is from 2014. Wouldn't we have heard more about this by now if it worked?
I am 11+ years from my diagnosis. I find the window for good on-time growing shorter with each med dose. Like Sandmanliz, I get dyskinetic when the rest of my body is trying to be still--sitting and typing, sitting for meals, sitting while driving or as a passenger in a car. If I can get up and move around, it often helps. But sometimes in the middle of a task, I push through despite the seasick feeling I get from dyskinesia, many times preferable to sudden off periods, which leave me struggling to perform many tasks--such as standing to cook--but I feel less conspicuous if I'm minimally off around other people rather than dyskinetic, which also leaves me clumsy and dropping things. I am on a fairly low dose of Rytary, 2 x 95 MG x 4 times a day (equivalent to 1 x 100 MG C/L), plus 1 MG Azilect (rasagiline) and 4 MG Neupro patch. My neurologist suggested Gocovri (time-release amantadine) which I will not take due to high percentage of hallucinations as a side-effect. I manage dyskinesia and off periods as best I can by monitoring how I feel and supplementing with C/L between Rytary doses as needed.
I am sorry Sandmanliz and cjCardio53 for your experiences being judged by others and treated so poorly in a public setting.
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