[Soozie]

Good morning,
I have been having alot of problems with dyskinesia for the last year. It has been steadily increasing. Recently I started having what I think is dyskinesia in the morning before my first meds. Anyone have any experience like this? I would appreciate any advice or thoughts you might have?

I am taking Generic Sinemet 100/25 every 3 hrs, Requip and Amantidine.

Thanks
Suzie

[vlhperry]

My name is Vicky and I have had Parkinson's for over 20 years (diagnosed at 29). I have dyskensias in my left toes. I have heard that BoTox can help to relieve some of the tightness in the effected muscles. The pain gets pretty intense. I was considering calling my neurologist to see if I could try it.. Tonite I am drinking wine hoping to ease the pain. Mine is worse at night. Now it is painful all the time.

Good luck. Maybe someone more experienced will have a better suggestions.

[stevem53]

I have had pd for about 8 years..I take Stalevo 200 mg three times a day, and I have dyskenisia in the evening about 8:00 when my meds wear off at the end of the day..It only lasts for about a half hour..Then I get rigid, and shuffle untill midnight, and after that I can walk, and am not too bad..When I wake up in the morning, I am rigid and shuffling around again, untill my meds kick in..No dyskenisia though

Bottm line for me..I refuse to take more than 3 Stalevos per day, because the more I take, the worse the dyskenisia gets..Id rather deal with the pd

I also take 3 Amantadines a day too..I dont even know if they are doing anything, but Im afraid not to take them

Regular 25/100 Sinemet?..Doesnt work for me anymore, and dyskenisia, dystonia, and failed doses are so unpredictable, that its not worth it..For me its worse than taking nothing at all

Advise?..I really wish I could help you, but I dont have a clue as to how to stop mine own

[Soozie]

Hi Vicky,
Thanks for your reply to my question. I appreciate hearing your experiences with PD as you have dealt with it for 20 yrs and were diagnosed so young. Having been diagnosed for just over 3 years, I know I have alot to learn. How long have you had the pain? Did it initially start with medication off times? I was having what I thought was Dystonia pain in my feet and legs but it did improve when I increased my calcium. I am just trying to understand if there is anything I can do with my meds.
Hope the wine helped with the pain.

Suzie

[Soozie]

Hi Steve,

Thanks for replying. I realize I am not alone with this problem and maybe there is no answer. My experience with this disease is just over 3 yrs so I keep looking for those answers. This forum has so many bright people ... so much knowledge. I am amazed what I have been able to learn. So I am still hopeful... I realize I can not take any more Sinemet as well but have not tried Stavelo. The constant dyskinesia is so difficult.

Suzie

[Jim091866]

Not to step on any toes here but it seems as though you all may not be familiar with the meds. Stalevo has sinemet in it. When you take it you need to lower your regular sinemet to compensate. That's why you get the inconsistencies, dyskinesia, etc; I'd guess that you prob take a stalevo then get dyskinesia, miss a sinemet dose because you're way too on then crash when the stalevo wears out which is in between the sinemet doseages, etc. The agonists were too inconsistent for me. I've got enough to just keep up not to have to worry about off times etc. I think you would do better to find out how long after taking 1 sinemet you go "on" and how long it lasts. Take as little as possible and stay away from the agonists, they are too much up and down for me. When you find what works for you don't let anyone ???? with it.

[Soozie]

Hi Jim,
Sorry to be confusing- I have a hard time getting my thoughts out clearly. I know that Stavelo is a combination of three drugs and I was never on it. I was on Comtan for a while but because I was having so much dyskinesia the MDS had me stop taking it. I am trying to figure out my on/off times and extend the time between doses so I am not dyskinetic when take the next dose. I would like to get off the Requip so I will work on that. I take a dose of Requip at night so I am wondering if that is causing the early morning dyskinesia?
I appreciate your advice and my toes are fine..just crampy.

Thanks Suzie