Dystonia?: Pd 6 yrs, been on sinement... - Parkinson's Movement

Parkinson's Movement

18,340 members18,701 posts

Dystonia?

akgirlsrock
akgirlsrock

Pd 6 yrs, been on sinement since last May, meds started working great in July 1 every 4 hrs. For 4 months, then had to take two every 4 hrs. , with slight Dsykanisia. Last few months now, Mornings I wake up with Dystonia, because not taking pills at night. Dr. Put me on extended release, worked ok, not for long. Now I just wake up once and take two sinement at early am 2 or 3, it depends sometimes I can deal with tremors and fall back to sleep. 6 am get up take two sinement , 5 mins. Later DYSTONIA IN MY RIGHT LEG now, can't walk until pills kick in, and now it's happening around 3/ 4 pm. I normally don't eat protein during the day. I ate quinoa salad for lunch and chicken soup for dinner two hours after pill. Felt Dystonia coming on again, two hours before next sinement dose. Today I'm not doing any protein, to see if that helps. I'm thinking,

B vitamins may help with Dystonia, I take Anderson sea minerals for magnesium. Looking for advise. Thank you, Maria

6 Replies
oldestnewest

Did you have dystonia before starting on Sinemet? Dystonia can be a side effect along with dyskinesia.

Only Left side affected, tremor and could only walk on toes, foot would not lay flat until I started taking sinement. Left foot would turn inward once in awhile and when pills wear off now left foot turns in all the time. Rice bran has a lot of natural thiamine. I wonder if that would work. Thank you, Maria

jujulini
jujulini in reply to akgirlsrock

not enough thiamine. read the posts on high dose thiamine & dr costantini

Have you considered taking one Sinemet every two hours? Doubling the dose after four months seems extreme. Sometimes playing with timing can be helpful.

jujulini
jujulini in reply to Juliegrace

yes juliegrace- because the half-life of sinemet is 1.5 hrs, so that would probably work much better, less or no "off" time.

akgirlsrock - i used to get dystonia of my feet every morning, and had to take a half tablet of c/l (sinemet) to relieve it. after i had been taking the high dose thiamine for a few weeks, i realized, hey....i havent had dystonia for a while.....

You may also like...