foot dystonia etc
 

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

not sure how practical this is
 

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.

I too have that
 

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.

To be honest I ...
 

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 all -
 

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

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.

Foot Dystonia
 

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

My first symptom
 

Foot dystonia was my first symptom, and I put 3 stress fractures in my left foot thinking I could somehow get it to loosen up by exercise- in this case, walking a lot. So much for that piece of stupidity.

Your other ideas are much better.

However, I do still do some stretching - particularly standing on the edge of a stair step with my toes and letting my body weight push down my heals (did anyone get that?) - it helps, but not until I have some Sinemet going.

We've been very interested in this thread. Kevin's feet are now so deformed I fear at some point he will not be able to walk. We started with a new neurologist this January. She was the first one who asked him to remove his shoes and socks. When she saw his feet she could not believe it.

We have since learned that if a really good movement disorder specialist had seen his feet years ago, PD would have been dianosed much sooner. He now takes a muscle relaxer at night (Clonazepam) and also Effexor XR which is an anti depressant but because of the way it works, it helps with movement issues.

For the first time in years, he is getting some sleep. The pain has been relieved or at least become bearable and the feet are not turning in so badly. His toes are awful but he wears sandels almost exclusively and that helps. I really feel for any of you going through this!! It does not get a lot better - even with DBS.

We have since met far too many with PD who are having feet problems but for some reason it is seldom discussed!?

interesting...
 

I also take Clonazepam and generally wear Keen sandals because they are wide and stabilize my feet - so I feel they gently work against the dsytonia without creating more harm.

interesting...
 

I also take Clonazepam and generally wear Keen sandals because they are wide and stabilize my feet - so I feel they gently work against the dystonia without creating more harm.

if it is bad enough
 

that you want to try the entrainment route:
Go to http://www.bwgen.com/
Download and install the program. It runs for 30 days free of charge.
Put on a pair of headphones, start the program, and select the default (Relax) program.

It stops mine in two or three minutes. It isn't very portable, but it might be able to give some relief.

Foot Dystonia ...
 

Hi Lindy, et al...

I'm wondering how many of us with foot/ankle dystonia, diskinesia - weird, painful twisting, bending, turning, writhing, etc. have had injuries to any part of that foot,ankle, knee, hip PRE PD symptoms. I have had a popping hip since age 11, a broken big toe, nasty nail in the ball of the foot, sprained ankle - and no doubt other minor insults to the left side. None of these injuries were treated medically except removal of the nail in an Emergency room. I can't help but think that these injuries have resulted in a pre-disposition to weaknesses that manifest when the dumptruck load of l-dopa &/or agonist courses through that area.

Also, did the emergence of dystonia/diskenesia signal the beginning of the end of the 'honeymoon' period with the PD drugs? For me, the problem is the limiting factor in how much dope I can tolerate. Too much, too painful.

This thinking is part of my ongoing attempts to understand what is happening! Anybody out there have similar thoughts?

Ibby

Ibby, this is an old article but explains differences... Some dystonia is drug induced, some like mine is not.

In some patients with dystonia as initial symptom of PD, the dystonia abated or disappeared as PD progressed. Some hope there.

Dystonia in parkinson's disease: Clinical and pharmacological features
1988

Abstract
We studied the features of dystonia in 9 patients with untreated idiopathic Parkinson's disease and in 56 patients on sustained treatment with L-dopa. Dystonia was seen as an initial symptom in patients with both early- and late-onset Parkinson's disease and included action dystonia of the limbs and cranial dystonia. Although the coexistence of parkinsonism and dystonia suggests a common pathophysiology, antiparkinsonian drugs did not consistently influence dystonic spasms. L-dopa-induced dystonia was seen as an off-period, biphasic, or peak-dose phenomenon. Each type showed a distinctive pattern of localization of dystonic spasms, possibly reflecting neurochemical aspects of basal ganglia somatotopy.

Neuropharmacological studies performed in 12 patients suggest that off-period dystonia is genuinely induced by L-dopa and best relieved by antiparkinsonian agents.

Read the PDF:

http://www3.interscience.wiley.com/c...78039/PDFSTART


http://www3.interscience.wiley.com/c...TRY=1&SRETRY=0

This was my initial symptom. I would get the spasms when I was stressed, and mostly in the early hours in the morning. The pain would get so bad from the feet turning in, I would actually get sick to my stomach. After taking Sinemet, they have all but disappeared. I get them occasionally now, but not like I did in the beginning. I would like to add that my jaw clenching stopped too, and I haven't done that either since the very first dose of Sinemet.

I have, however, broken all my toe nails from my toes digging into the shoes when the spasms hit. As a result, I am slowly trimming the little nail bits back as they grow out.

Of all the symptoms of PD, I wouldn't wish this on anyone.

John

Hey, that sounds like what I have...
 

I don't know if it the same as some of you describe but my right foot is turned inward and rotated to where I walk mostly on the outer edges of it. I have right sided PD. This has progressed to where I have what is called a tailor's bunion as the old time tailors would sit on their stools and turn the foot under them. It has become very painful, my foot is deformed and it has progressed to where I now have pain in the tarsals or larger bones of my foot due to my weight being carried on the edges of my foot. I have been to a podiatrist with no recommendations because it was said that this would simply recurr as PD progressses that he was not aware of any treatment.
I wear out the sides of my shoes before the bottoms!!! I don't get spasms, it's just always turned inwards, oh well..

Hi Jim,

I'm probably lucky that I don't do that as much anymore, but my foot still wants to turn in anyway which is really painful. I think the right foot wants to go in but it can't due to surgery I had many years ago.

Let me explain... I was born with a clubbed right foot, which is on the same side of my PD. The foot was surgically corrected twice. The first being in 1962as I was the second person in the world to have the heal cord lengthening, and the youngest person at 8-months to have it done. After that, I had a metatarsal osteotomy done to straighten the foot in 1982. This involved breaking the metatarsal bones and taking pieces of bone from my shin to fill in the gaps.

All was well until the PD started with the spasms again. As a result, my second toe pushes over the big toe and the rest of the foot tries to turn in. My left foot turns in when the cramps hit.

John

Jim, that is exactly what I had! Same side, too. I was walking on the side of my foot and looked pretty terrible when I 'walked'. I was all twisted and it was really painful. Baclofen fixed it.

clubbed foot!
 

I had bilateral clubbed feet. Had to have shoes with braces like Forest Gump!! Life is like a box of chocolates...

Jim,

This maybe part of the problem. With your achilles tendons being weakened due to the clubbed feet, you have the tendency to turn your foot in so when the dystonia hits, it adds insult to injury.

I too wore the braces between the feet as well as casts until I was 5 years old.

Have you talked with an orthopedic surgeon, not so much about surgery, but about some exercises and perhaps some shoe inserts to force the foot to lie straight within the shoe? This may help you from wearing down the outside of the shoe and keep your foot straight.

Life sure is like a box of chocolates. We only hope that some are nice nutty clusters and not all soft gooey sweet creams. ;)

John

Thanks to all who have replied to this thread, and apologies for not being back sooner - I have got stuck into doing my garden, and have to deal with inevitable overwhelming fatigue, but ~I wouldn't forego it for anything, I love this time of year.

It is really interesting that so many people have this symptom. I too had dystonia as an initial symptom, and sinemet dealt with it wonderfully. It is all creeping back though, and I have internal dystonia too, which is pretty uncomfortable, along with increasing balance issues.

Ibby, I have wondered a lot about whether this is the beginning of a different stage, I have just hit five years on sinemet and keep thinking is this the start of what all the warnings are about. On the other hand, if I do try to add to the meds I am taking I wind up with side effects I would rather not have. So I share you interest in looking at this possibility!

On the plus side, I am fortunate enough to have a PD nurse specialist in my area, and I have contacted her to see what I can do to tweak meds or possibly add something like baclofen, as this particular symptom is causing me more mobility issues than anything else. Anyone else find it easier to talk to someone like this than to the neuro? Or maybe that is a whole different topic!
I see her on May 1st and will report back on anything helpful.....

Best wishes to all epsicially all with dystonic feet, may your steps be light and painfree, I wish everything for you that I would wish for myself!

Lindy :)

Hi lindylanka
 

I have dystonia through out body as primary symptom...No easy fix everyone said preety much what i will input. message it out,jet tub SOAK SOAK SOAK, sinemt controls mine for now for most part....off periods I look like a pretzel. Also Stretch and work out. I started some meditation and with control breathing sometimes the twist will release earlier this is very hard to do given the pain, but I have found no matter what part of body is acting up if I take a deep breath think about controlling that area, the twist goes away. can not prove that medically...just seems to help get me through it.


Hope this helps,

Kman

I have been on Sinemet for 11 years (if I'd only known where that would lead). I have foot dystonia as soon as I take my meds sometimes for up to an hour. Left side dominant foot turns in and my big toe laps over the one next to it. I notice my toes are curling under as well on that same foot. My legs start vibrating followed by cramping and muscle rigidity in my calf's, thighs and now my hips. It is so painful and is getting hard to take day after day. I am also starting to experience wearing off dystonia. It starts with tingling and numbness in both feet. It is difficult to walk most of the time so I don't. To tell you the truth I am scared stiff (good analogy huh!) on what my future holds. I want to exercise but over time I have become de-conditioned. I have reduced my RR Sinemet and the goal is to be on CR and slowly reduce that as well. I am considering trying Mucuna pruriens, liquid Sinemet or Madapar. I take all the supplements that are known to be helpful I have had to add Clonazepam and Baclofen. It is only a matter of degrees how helpful any of this is. I mortified that I have to take drugs and in shock that this is happening to me. I now realize that I have been in complete denial about how bad this whole deal could be. Everyone tells me that I am a fighter; well guess what that theory is based on......HOPE. I am facing REALITY. I try to believe your body believes everything you tell it which worked somewhat in the past for small periods of time. Right now I am confused, scared, alone and self isolating, living in a new town with few connections. I try to keep this in perspective and say tomorrow is a new day.

Smith, many people take very high doses of baclofen. If you raise the dose slowly (every few days about 5 mg), your body adjusts to it. (My first 5 mg almost put me to sleep.)

If you take 30 mg or higher a day and want to discontinue it, you must taper down slowly. It's dangerous to go cold turkey.

If I'm late taking baclofen, I get muscle spasms and cramps, too in my right leg, especially the thigh.

I also take artane , an anticholinergic, which helps with dystonia, which I also have in my right arm and hand.

Off painful dystonia in Parkinson's disease treated with botulinum toxin

Abstract
The off painful dystonia (OPD), usually concerning the feet, is a type of abnormal involuntary movement, induced by the chronic use of levodopa. It is mostly observed in the advanced stage of Parkinson's disease (PD), particularly in the early morning, in the evening, and late at night. Indeed, some patients have experienced OPD also during on periods when dystonic posture of the foot alternates with dyskinesia. The pain probably is due to sustained muscle contraction, which causes prolonged muscle spasm, as in primary dystonia or torticollis. Dopaminergic drugs like bromocriptine, pergolide, and especially apomorphine (s. c., infusions, or bolus), can dramatically improve the OPD. Anticholinergics baclofen and lithium are also used in the management of OPD with some benefit. On the other hand, clinical experience shows that in many cases, these therapeutic procedures are not always enough to produce the expected results. Thirty PD patients (22 men and eight women) with OPD of the foot were treated with botulinum toxin (Botox, Btx) using electromyograms to guide injections. Dystonia was evaluated using a quantitative rating scale. The selection of the muscles for Btx treatment was carried out on the basis of foot posture. We injected Btx into tibialis posterior, tibialis anterior, gastrocnemius, flexor digitorum longus, and extensores hallucis longus with a median dose 40 IU for each muscle, distributed in two sites. In all patients, the pain improved within 10 days, whereas in 21 patients, the pain disappeared completely for 4 months (range, 3-7 months); a concomitant improvement in intensity of the dystonic spasm was also observed. No side effects were reported. Seven patients with associated on foot dystonia described an improvement of foot posture on walking. In conclusion, in this uncontrolled study, the use of Btx in OPD seemed a promising tool to improve pain linked to foot dystonia; however, because of the well-known underlying dopaminergic defect in OPD, the Btx therapy should be considered only if the dopaminergic treatment established for the management of OPD has failed.

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

Dystonia and parkinsonism.
Jankovic J, Tintner R.

Parkinsonism and dystonia may coexist in a number of neurodegenerative, genetic, toxic, and metabolic disorders and as a result of structural lesions in the basal ganglia. Parkinson's disease (PD) and the 'Parkinson-plus' syndromes (PPS) account for the majority of patients with the parkinsonism-dystonia combination. Dystonia, particularly when it involves the foot, may be the presenting sign of PD or PPS and these disorders should be suspected when adults present with isolated foot dystonia.

Young age, female gender, and long disease duration are risk factors for PD-related dystonia, but dystonia in patients with PD is usually related to levodopa therapy. The mechanism of dystonia in PD is not well understood and the management is often challenging because levodopa and other dopaminergic agents may either improve or worsen dystonia. Other therapeutic strategies include oral medications (baclofen, anticholinergics and benzodiazepines), local injections of botulinum toxin, intrathecal baclofen, and surgical lesions or high frequency stimulation of the thalamus, globus pallidus, or subthalamus.

http://www.ncbi.nlm.nih.gov/pubmed/11489676