Following on from Libra's thread that I did'nt want to hijack I wondered if anyone can shed some light on how to manage foot dystonia (foot pulling down and turning inward, v painful in am) and more generalised dystonia. Neuro advised adding a sinemet cr in the night (gives headaches due to clenched teeth and nightmary dreams), gp thinks I should take quinine tabs, neither have helped, takes till my third meds of the day to get some relief and feel reasonably mobile. It feels like this posture is changing the shape of my foot. Have had internal dystonias for some time, those are worsening too, ........ in the mean time I am doing a rather strange hobble/shuffle punctuated by the odd yowl!

Pd certainly has a way of demolishing all dignity....

Lindy

Thanks for starting this thread Lindy..Ive had some trouble with that too

Almost every morning - ten minutes after rising it hits my left foot for 15 minutes and then it is gone for the day.

I have had success stopping it after about two minutes using binaural brainwave entrainment at about 6 HZ. In fact I don't recall a time that it failed.

If anyone knows what I am talking about, there is a shareware generator available called (what else?) - "Brain Wave Generator" Just google it.

That's fascinating, Rick!

Many people with the LRRK2 mutation start out with foot dystonia.

Lindy, I have foot dystonia at rest and it worsens with walking. My foot turned inward, toes curled, and I had spasms in my feet and my leg. The dystonia got my knee out of whack and I had awful knee pain (I have arthritis with bone spurs).

Baclofen, 10 mg three times a day, is my life saver. Most of the disabling dystonia is gone. I still have it sometimes, but it's uncomfortable, not unbearable. And my knees are okay, as long as I take the NSAID etodolac.

Maybe ask your neuro about baclofen. It's very good for foot dystonia.

my right foot has developed hammer toe in 2 of my toes. The toes don't hurt, but it is painful to walk, because the joint below toes now points downward and hurts to put pressure on it. This has developed since my dx with parkinsons so I assume they are connected. I haven't figured out how to solve problem, so no suggestions in that direction Lindy, but just lending a sympathetic ear.

use my "good side" to pull against the dystonia, not scientific, probably not helpful, stating the bleeding obvious, but I'm with you on this one and eagerly await better replies.

Neil.

dear parkies w/ dystonia.
I believe you may need to drink some mineraled water - w/ electrolytes
- it may be helped a bit by sinemet - but in the long run - sinemet uses alot of the potassium in our bodies - so our imput minerals are running low...
when you get the horridly painful spasms - two things try to find a way to distract and a way to breathe deeply -
hold the foot - rub your foot or- hold it in place or kneel as if in prayer - holding the foot down differently.
while I am in the position I do go ahead and turn it into a bit different position - head over knees leaning on the floor - blood will go to the brain
and breathe - somewhat like the fetal position yet on the knees, if you have soft music - let it play in your home - try to get as much sunlight throughout the day - sit by a sunny window...
if possible when the dystonic episode is over -sleep
we need to sleep more between 10 pm and 2am -that is when we have the deepest -health repairing sleep called / REM sleep...
think peaceful thoughts as much as possible /
talk to friends ... some way I believe we have trained the neuropathways for
the path of different fears -once you start down the pain path the mind will take you to the path
train your minds neuropathways to take you to a peaceful place instead.

Thanks so much for all the replies, each in their own way helpful, even when not offering a solution. It is not good that we all seems to go through this, but is good to know that I'm not alone, if that makes any sense. I have been really struggling with this, and ZucchiniFllower describes somethine v similar. so I will ask my Dr about a similar medication, as I do not thinkI can sort this out on my own. Neil, thats exactly how I have been trying to deal with things, while wending my wobbly way down the high street! IT begs the question I suppose, as to why all the emphasis on PD is on tremor and so on when there are things like this that wreak havoc with mobility.

ZF, it's very interesting about the LRRK mutation as what I have is exactly the same as my grandmother, along with a couple of other inherited things that are both autoimmune issues.......

Thanks again, would still like to hear from anyone else with this problem as it seems to affect quite a few of us.

Lindy

I have not seen any of your posts for awhile. I was wondering where you went!

I don't have serious problems with dystonia, but I have some trouble with my right foot sometimes. For me it is anxiety related and if I take my anti anxiety meds it goes away. My anxiety is often related to my adrenaline levels and that comes from my PD meds.....reminds me of that old song, Your foot bones connected to you ankle bone, your ankle bones connected to your...etc.

I put my foot in a bowl of hot water (as hot as I can bear) for about 15 minutes and then my wife manipulates my foot and toes (physio showed us what to do) for about 10 minutes.

I do this especially if I am starting to experience some discomfort just before I go to bed. This works brilliantly for me and is very pleasant too!

I have also found that Amantadine eases my dystonic left foot although I know this drug is usually added for dyskinesia. I was taking 2 x 100mg of Amantadine a day but by adding a third at around 5pm my night time dystonia is far less. I know that Amantadine taken this late in the day causes insomnia with some people but it does not affect me this way. But then as we all know only too well we are all different.

Chris