I have the exact dystonia that you describe - head, neck, lean to one side. It's the most incapacitating symptom. It seems to be drug induced because only sinamet will make it go away. If I tried to eat anything i would probably be unable to swallow.

There are positions that I use to get through it until meds kick in. The object is to try not to use the mucles that are in dystonia, which in our cases are mainly head,shoulders, neck, toe curling. So I try to take the pressure off of them.

Lay across the bed on your stomach - support your back with a pillow under your pelvis so your back is not arched and let your arms and head hang down and dangle from the bed.

Get on the floor with face down, bring knees up and sit back on your feet, curl up, put the top of your head on the floor to release neck muscles and put your arms straight back on the floor palms up.

Do the dog and cat yoga positions.

Breathe as deeply as you can. I find that I can't at first but as meds kick in one of the first signs is an involuntary deep breath.

Lie on your back, pillow under neck so that head is a little forward, and elevate your legs and feet.

NOne of these take the dystonia away. Only sinemet will do that. This is how i get through it. I move into all of these positions for relief as I pass through it.

i haven't tried meditating - too busy watching the news. lol

good luck,
paula

yoga.. http://www.hathayogalesson.com/

paula's suggestion is great. that link has animated yoga postitions. it's easy to find the easy basic ones. the graffics show you how to do them.

Your rigidity and the fact that it is worse in the morning might indicate that you have polymyalgia rheumatica or PMR, a condition which hits people over 50 and comes on starting with the shoulders and eventually including the trunk and sometimes knees. Do you have difficulty lifting your arms over your head. Overall, does it lessen a the day goes on? If it is PMR, you will be put on prednisone. After a day or two, the symptoms dramatically recede, and, in fact, reacting positively to the prednisone indicates that you do indeed have PMR. If prednisone does not help, then it is not PMR. Go to google and check oout polymyalgia (NOT FIBROMYALGIA) rheumatica to see if you fit the description.

By the way, PMR is described as self-limiting, meaning it will go away on its own without meds, but it can last anywhere from months to five years! They believe the cause is both environmental and genetic, but there is some speculation that there may be a contagion aspect also.

Ann

I am in Seattle right now picking up my daughter from UW. I have read everyone's responses and they are very good with links and books to read. Just want you to know I appreciate all your responses but can't do anything until I get home on Saturday.
Rosebud, I have been a member on Braintalk since I was dxed in October 2005. I wasn't a big poster on forums but talked alot in chatroom so you may remember me from there. I do miss chatrooms alot, seems like no one goes there anymore.
I will talk to all of you later.

Non-dryg treatment includes hot baths and massage to work those muscles back to a relaxed state. Upping the sinemet dose is the first thing to try, as it may be simple undermedication. Flexeril is a good muscle relaxant but it makes some people a bit woozy. Other things to try are Klonopin or other benzos. Lyrica may help with pain. Oxycontin or dilaudid are narcotics, which work better than NSAIDS for pain, but i need not tell you the problems one can develop with narcotics.
I know how the neck pian feels, i used to think it was "wry neck". Sometimes my shoulder muscles are hard as a rock. So much of a difference is noticed when you finally get them relaxed. Many of us can get muscle rigidity in almost any part of the body, at any time. You can get a handle on it though, if you do lal these things, something will work.

Hi - I have had a really hard time with violent dystonia that can knock me down and has put me in the emergency room...Klonopin does help, as does Benadryl - but I couldn't live on Benadryl for sure...Klonopin seems smoother and milder somehow to me...

I have found that a couple things really help - if you can do them - one is being in a pool deep enough so you can float and swim, makes it go away for me instantly....also someone dancing with me, making me dance to music by holding my arms and moving me through space with big movement helps...as does just dancing by myself, if it's not so bad that I can't do that....

A really important thing though for me has been the use of breathing and relaxing techniques. I breathe slowly and deeply, and with each exhale try to relax or just drop the weight of some muscle in my body. Gradually the body calms down, and the rhythmic dropping even of infintisimal amounts of muscular weight begins to counteract the contractions of the dystonia. That I think is the best thing, and while you're doing it, I imagine my whole body breathing in dopamine from the fartherst corners of the universe with every inhale, and then just dropping, relaxing, softening with every exhale....

hope that helps...

Hi Libra,

I have WICKED dystonia...just wanted to use that word..lol. Just finished a month long battle with it started trying neuro patch...I think we can all agree how that went..lol. increased sinemet feel much better.

Point I wanted to make is through whole process continued marital arts training..I noticed that when i have longer break periods the dystonia hurts more because the muscles are tighter than when I keep them stretched out. My last workout consisted of 45 min. rubbing muscles and just doing stretches. I believe this is helping....there are many books or check internet on how to stretch various muscle groups...which can be done right at home!!!

I will tell you that sometimes my whole body will shake trying to focus and move through the twisting...however my feeling is it can't hurt anymore.

Be Well...Hope this helps
Eric aka kman

and read everyone's responses. Thanks so much for all your suggestions. It sounds like I need to talk to my neuro about possibly increasing my sinemet. I increased my mirapex, but don't think it helped with muscles cramping. It did however help with my restless leg syndrome which also seems to be also getting worse. (Darn&%$@*) I seem to be doing some of the same things everyone else is doing that helps, such as exercising, stretching, massage. It's just nice to hear from other people who have what I have, makes you feel better.
AnnT2, interesting about plymyalgia rheumatica. A friend of mine had that, I will ask my doc about that one too.

I have had dystonia in my feet and my toes just curl up into a tight ball. I recently made the connection that it happens when I get stressed. It is an anxiety response. CS talked about some of the drugs and mentioned Kloponin or what ever... generic name of a benzo called clonazipam I do believe. I have a med called Clobazam (brand name Frisium) I'm in Canada and you must have it in the States under a different name. But it works like magic for me. I have had this med for 4-5 years now. Your problem may be anxiety related... and we all know what that does. It causes us to seize up our muscles and if we can do it long enough or hard enough we generate pain.

Something to think about.

I do not think it is anxiety related at all. Truthfully, I don't get too stressed about much anymore, except maybe work when there is a deadline looming over me. I appreciate the idea, but if it was anxiety, it would be transcient and it is pretty much a constant condition in my neck and shoulders. I will continue doing what I am doing, try some of the suggestions on different stretches, and consult with my neuro on med changes and other ideas. Hopefully I can find something that relieves it more than it's present condition.
Funny, when I used to think of parkinsons, my first thought was always the shaking, but this rigidity stuff is something else (if it is parkinsons related at all in my case). That is always a hard thing too, doing the research and going to the doctors to put a label on each symptom. Is this rigidity even dystonia at all? Good grief, I don't know.