Is dystonia usual in PD?

Many of us have it. I didn't get it until this past year - 5 years after dx. Mine is in one foot and starts after I walk a bit. I don't know the percentages.

Does the dystonia appear when meds are wearing off or does dystonia appear just after you take meds or is there any pattern? How long do the foot cramps last and how do they resolve?

I get it in my right leg inbetween meds..I can always tell when my meds are kicking in or wearing off

Dystonia in pd is very common

I am trying to figure out if dystonia is med related side effect and can it be controlled by changing meds or taking more meds. I have it and it affects my right foot but then it hits my neck and neck dystonia leaves me grounded....flat on the floor with my neck in spasms. I have been told by doctor (GP not neurologist) that this dystonia is not usual in PD and that this is caused by medication and that it can be resolved by changing the medication or taking a new medication to control it, Has anyone had similar? Is it just another side effect of levodopa therapy?

would you describe your foot dystonia so i know specifically what you have?

i get very uncomfortable foot rigidity between meds, slight right foot rigidity was an early symptom 8 years ago.

The toes curl downward and lock in that position. The pain is similar to a very severe cramp. You cannot walk. It can last 30 minutes.

Toes curl downwards and lock in place. You cannot straighten the toes. You cannot walk. Your whole foot is in spasm/cramp.

raleighaodh,

Dystonia happens when I'm off. When sinemet kicks in, dsytonia goes away. I have trouble with my right foot tho even when on. I have so much trouble with my right side it's hard to say why.

Anyway, only l-dopa relieves it but I have found that taking nortriptyline relieved my morning off to a great degree [don't even have it sometimes].but i've also added stalevo recently and feel better with these two meds.

I think another transmitter is greatly in play in pd , acetycholine. When there is too much of it and when it is out of balance with dopamine, it causes muscle cramping and other movement problems. When off, I wonder if too much acetylcholine could cause the conflict of pushing and pulling that could be dystonia.

My dystonia is in my face,neck, shoulders, back, and feet. It is common in pd. Nortriptyline has anticholinergic properties, is a nerve pain killer and anti-depressant. Other anticholinergics [ which aid in the slowing up of too much acetylcholine] are Artane and Cogentin.

If anyone knows of more please add.

I agree with Paula. My experience with dystonia seems to support the theory that it may be due to drop in dopamine and presence of more acetylcholine (dopamine normally modulates our other neurotransmitters).

My first nagging suspicion that my diagnosed ET was really PD stems from development of an action induced cramp in my right foot - toes curled under; this is widely considered a hallmark of early PD.

When I started levodopa therapy, the cramping disappeared unless I took a walk at the end of a dose. Also, tried Mirapex alone and it did not touch the dystonia.

Now, two years post diagnosis and levodopa (+requip xl) therapy, I was waking up to painful toe curling, arching, and separating. I decided to try and add a 1/2 benadryl at bedtime and now have hobble-free mornings (for the most part). Benadryl is an anticholinergic; it helps lower our acetylcholine levels.

I've discovered though that PD is very much like raising a small child, just when you think you've got it all figured out, it switches up on you. Now, it seems if I want to veg and knit or read before bed, as I near the end of my last dose of the day, I end up with not only a cramped foot but it sometimes extends into my calf. If I try to stretch my calf, I get an excruciating Charley Horse. The only relief comes from taking a full benadryl and 1/2 Sinemet if I can't take the pain.

Oddly, I find that trying to walk; normalizing the muscles, actually helps overcome the dystonia. Though I am lucky that I have never had it in my neck or back- ouch! My dystonia isn't all that painful; it's more a nuisance and worries me because I have a young child. Always afraid my foot is going to go rogue on me and i won't be able to walk to my son if he is crying- I worry that I might fall with him. Then I get really ticked off at the PD and start to rather stomp around the room (think Ministry of Silly Walks - Monty Python), cursing under my breath; this sometimes works, and other times I retreat to bed knowing that tomorrow brings another chance to have a better day.

HTH

Laura

P.S. Have heard a special muscle relaxer helps with this called Baclofen.