What does dystonia feel like?

[whitdemo]

My husband has PD ( 9 years now) hes 63. He has DBS and it was very successful in treating tremor, stiffness, slowness. However he has a new symptom and we are not sure what it is...its just been a few days...He feels a tightening and cramping sensation in his thigh and calf muscle. We wondered if it was a blood clot, but it doesnt really match those symptoms exaclty. Last night it was up to a 7( 1-10 pain scale) in discomfort . There is nothing new he has been doing in terms of activity so dont think its an injury.

Can anyone describe what dystonia feels like, and does it happen in the legs?

And are there any remedies or ways to ease discomfort?

Thanks for any input

[park_bear]

Yes dystonia definitely does happen in the legs, and tightening and cramping is it. It is a Parkinson's symptom but can also result from too much levodopa. Something to discuss with the DBS programmer and see if some alteration to remedy this is possible. Some people recommend topically applied magnesium chloride solution. Has not been a serious problem for me lately so I just do stretches when cramps or tightness arise.

For people who are taking levodopa, differentiation between Parkinson's induced and levodopa-induced depends upon whether the dystonia is occurring during the nadir or the peak level of the medication cycle.

[jeeves19 in reply to park_bear]

I get this. It generally happens in my calf. Your DBS controller needs this information and so it can be adjusted.

[Juliegrace in reply to jeeves19]

What he said is what I was going to write. Talk to his programmer.

[whitdemo in reply to Juliegrace]

Thanks we will. Good to know DBS can address it, as well as some other remedies

[whitdemo in reply to park_bear]

Thanks so much. I have a magnesium topical I will try that for him too. and also he takes magnesium and electrolytes.

[Rebtar in reply to park_bear]

How to interpret di-phasic dystonia, then?I got tightness in my left leg sometimes, shortly after i dose, and when wearing off. Toes sometimes turn up, instead of curling down and cramping.

But not when dopamine is lower, between doses.

When dopamine is too high, i get speedy, a bit obsessive, but not dystonic.

I've lowered my dose just a tad, with my doc's approval, morning dose only, to resolve the speedy issue, and the leg tightness is less. So it was a symptom of overmedication...

When i'm truly low, i get foot dystonia (toes curling under, foot turns inward). Diphasic, toes turn up.

[park_bear in reply to Rebtar]

Was not aware there could be a diphasic dystonia, and would never have guessed it could be remedied by a dose reduction. You are surely a better interpreter of your symptoms than I could ever be.

[Rebtar in reply to park_bear]

💜👍

[Rebtar in reply to park_bear]

I get toe twitching too. I think it's just part of dyskinesia. I remember someone mentioning dystonic dyskinesia as a side effect. I definitely get dyskinetic when i get too much dopamine.

[aidarettte in reply to park_bear]

I started on Sinemet about a year ago for stage 2 Parkinson's. Since I have been on this medication, my tremors and shuffling gait have improved dramatically. Before starting, my body movements were virtually uncontrollable. Now I can function almost normally. Sinemet also allowed me to return to work after being unable to work for about 8 months. Granted, I cannot do the same job I was doing (nurse), but I am able to work in an administrative function. A huge weight was lifted because of Sinemet

[park_bear in reply to aidarettte]

Yes, Sinemet is a lifesaver, and my discussion of the adverse effects is not intended to claim otherwise.

[Skidad]

I sometimes get very painful cramping of my lower leg front muscles. Often it happens in the middle of the night, especially if I’ve played tennis or gone for a run that day. I have found the pain subsides if I: (1) focus on deep breathing and relaxing the muscles, and (2) massage ample amount of topical NSAID into the muscles.

[Payparky]

I developed cervical dystonia on the right side before DBS and hoped to mitigate it with the surgery but it seemed to slowly progress over the next two years. I got a new neurologist who tried a different setting in my programming based on the reports that dystonia symptoms were decreased when the DBS pulse was longer. After my first increase I didn’t even need an upper cervical adjustment when I went to the chiropractor. After the second pulse lengthening programming I felt I could breathe better immediately. I go back in 14 days. I have been able to sleep on my dystonic side for the first time in four years.

[LagLag37]

This sounds kind of crazy but one of my PD friends says when she gets cramps in her legs she eats a teaspoon or so of mustard and the cramps go away. At night she leaves one of those fast food pkgs of mustard on her night stand and if they cramp in the middle of the night she uses it. She didn't mention dystonia but it but it could be. Never know until you try it. Someone in the group said it works for them also.

[karter1 in reply to LagLag37]

I just tried this tonight as my toes have been inflamed for days. I'm one who gets curled toes with and without medication. The mustard has definitely taken the edge off and giving me hope! Thanks for the recommendation. I'm hoping this will allow me to walk and function without all day pain!

[LagLag37]

Great! I hope it continues to work for you!