Painful dystonia
 

In the past week I have been having painful dystonia in my leg, It causes me a lot of discomfort and I can't keep still, it twists my foot and pulls my body forward. I have called my MDS but have not yet been able to talk with her or make an appointment. I have just stopped the medication Luvox (fluvoxlamine) a week ago because it was giving me side effects, I had only been taking it for a month and was having difficulty breathing and some involuntary movement. My question is for those of you who suffer from dystonia as a symptom of P.D. What have you tried that has given you some relief? I am presently taking Levodopa/Carbidopa 100mg/25mg 4 times a day, requip 3 mgs 4 times a day. Up until this past couple of weeks it seemed to take care of my Parkinson's symptoms although it was wearing off after about 3 1/2 hrs. I have tried massage and it did seem to help but only temporarily. A few hours after the massage it returned with a vengeance.

Evon,

This sounds like you're in need of a medication adjustment. The dystonia is really painful. You do have my sympathies. The only thing that helped me was the massage, and then that didn't do much for me either because once the pain subsided my foot would feel like it wanted to spasm again and with vengeance.

The increase in Sinemet has helped me more than the Mirapex I was taking at the same time, and I have since discontinued.

John

Evon / John ...
 

how does your dystonia manifest itself, how many times a day, for what duration, and when in relation to your meds.

or is it random and different from day to day.

No answers, just that I have started to suffer from Dystonia too and I am wondering if there is a typical profile for "early onset attacks".

Neil.

Hello, I have the same problem and found relief from baclofen. I take 10 mg three times a day, and it's a godsend. Hope you find relief!

Dystonia was one of my first symptoms before I was dxs 4 years ago. The meds seemed to be taking care of it until recently. The past week has been very bad with frequent episodes throughout the day which last about an hour or more. I've been taking my meds more frequently but it is getting unmanageable. I am hoping to talk with my Dr. tomorrow, its amazing how it has become so severe so quickly which is why I am wondering if it was brought on by the sudden med change. (discontinuing the Luvox)

Hi Evon
 

The genetic form of Parkin is different from Young onset PD. The primary symptom is dystonia rather than tremors. 50% of Young onset patients test positive for at least one parkin mutation. You may want to consider contacting Athenea Diagnostics to inquire about the possibility of if you have a gene mutation. Also with genetic mutations, lewey bodies are not a problem, however iron deposits in inappropriate parts of the brain are. Also, in idiopathic Parkinsonism, loss of smell for some reason is an early sign. This is not true for genetic linked PD. Also the gene form causes more damage in the part of the subthalimus that effects emotions, therefore Parkin mutations cause more depression, paranoid feelings, anxiety and panick attacks.

They are currently recruiting patients for NINDS Gene Project. You could go that route to hopefully have a free genetic test, but you will have to sign away your right to know the results of the test. I had a private one done prior to becoming a part of a genetic study so I know my results. Knowing the results gives me an edge on knowing the best decisions to live the best quality life I am able. I read several studies that said DBS stimulation was particularly helpful to those with dystonia. Another sign is an acute sensitivity to levadopa therapy for those with mutations in their Parkin gene.

If you are unsure of your diagnosis you may want to insist on an FDOPA PET Scan at Mount Zion in New York or Los Angeles University in California. Both of these university hospitals have excellant reputations for reading the results accurately. Even Movement Disorder Physicians are not very forthcoming with these options. Some Physicians still hold to the old bioethic that unless the test will change the treatment of the patient, the test is unnecisary. The peace of mind of the patient by confirming the diagnosis is considered inconsequential.

Best of luck,
Vicky

Evon, my dystonia comes on ...
 

first thing in the morning, before or just after first meds and lasts 10 mins approx.

It then goes and it is unusual for it to reappear for the day.

I am on similar meds to you, Stalevo 100 x 3 and Mirapex.

I always thought it was the dopamine agonist which fended off dystonia, rather than the l-dopa, seems like I was wrong. Will follow this thread with interest for any tips.

Take care,
Neil.

I just got around to reading this. I get dystonia everytime i'm off. Sinemet, or getting 'on' is the only relief. Each morning is a race of hoping the med kicks in before the dystonia does. If i wait too long to take meds, and go off, depending on when I ate my last meal, i can truly suffer wiith dystonia waiting to get back on.

Mine is in the shoulders,neck, and back - the side not as badly affected with PD is the worst with dystonia. It's the worst of the symptoms IMO. I have already had TMJ, a disc replacement in my neck, and have a bad back from dystonia at least in part.

paula

Like Paula my dystonia happens when I'm off, and the Sinemet is the only relief. When I do get it, it happesn in the early hours of the morning before I've had a chance to take my medication. Mine happens to reside in my feet. The feet turn in so my toes feel like they're being pulled in towards my ankles.

Before I was diagnosed with PD, my initial and very quick diagnosis was focal dystonia. I was put on Klonopin first, which didn't do much then Baclofen, which did a little better, but not nearly as well as the Sinemet.

John

Difficult topic
 

Have a look at the Dystonia Medical Research foundation
http://www.dystonia-foundation.org/p...i_have_/27.php

That will help claim which animal you have.

There are 2 main aspects of helping the painful involuntary muscle contractions:

1. Seeing the neuro re: medication adjustments - may be as simple as adjusting the time dose(s) are taken or the addition of more sinemet (splitting some doses) or adjusting the agonist dose.
Note: a sudden change in amount of physical activity can trigger a dystonic reaction i.e. you've just gone on vacation and suddenly walk more than usual - the muscles may react to the increased use.

1. B sometimes meds defy logic. When I started increasing Sinemet which is supposed to help with dystonia the doc suggest I take 2 100/25s in the morning and afternoon - bingo - right after the increase I had the same contraction and turning in of my left foot that you described. Sometimes the foot would contract even when standing. As soon as I split the sinemet doses to smaller and more frequent ones my left foot and bunched up sore calf muscle relaxed. My current spread out drug list follows:

Zantac 150mg 08:00 23:00 stomach acidity

Requip .50mg 08:00 12:00 17:00 agonist

Alertec 100mg 08:00 12:00 stimulant b/c Requip so sedating

Sinemet 100/25mg 08:00 10:00 12:00 14:00 17:00 20:00
- plus 1-2 doses PRN

Amantadine 100mg
- may increase to 2 doses = 200mg 08:00 tremor

Flonase 2 inhalations per nostril 08:00 sinus

Trazodone 50mg 23:00 sleep

Multivitamin

2. The painful contraction or cramp that wont stop
This advice is given with the proviso – ask your physiotherapist or doc and have a helper in case you get stuck

- keep an approved stretching exercise on hand to deal with the offending body part if and when it acts up
- gently stretch – if you stretch correctly you can loosen or supple up the muscle
- partner preferred – take a hot bath – partner to get you unstuck as necessary
- once out of bath gently stretch again

Absolutely not recommended but I’ve done it:
- I have hopped around on 1 good leg while the other is in a dytonic flex and managed to make a cup of tea with 1 oz rum in between leg stretches, hot bath and more stretches (happened when I had no GP and my neuro was on vacation. Picture that in your underwear in broad daylight).
Lastly, when the doc is on board he or she may leave you with one of the Anticholinergics i.e. cogentin 2mg prn or on an as needed basis. You’ll have to listen to your own body and test the waters. Guy
See - Dolph Lundgren Exercise Video - The Warm-up
End of clip – stretching leg muscles
http://www.youtube.com/watch?v=-WX-UFCX9Kc
we know what else they’re selling but the stretches are correct…