Trial for dopamine- responsive Dystonia? - Dystonia Society

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Trial for dopamine- responsive Dystonia?

AllHis
AllHis

I've come a long way, and enjoy meeting others in the same boat. Only been on Carbidopa- levodopa about a week. It's working like a muscle relaxer for me. I need to learn more. Would this mean I carry the Parkinson's gene? Anyone know of trials?

Lucky me has several things going on. Just like most of us here. But my vascular disease has complicated things. I don't understand internal tremors. Because of my pulsatile tinnitus, my vibrations have a certain rhythm and I would swear it's my heart...

I would love to chat more on dopa- responsive Dystonia

Last fall I met a wonderful neurologist specializing in headaches. She diagnosed me cervical Dystonia. (This is following many years of physical therapy and so much agrivation with myself and doctors in general... even closed my shop & stopped sewing after 26 years.)

I tried Botox twice and I decided I would enroll in a study. There is an observational study on Dystonia in my city, the only requirement was an evaluation by the University movement specialist. I waited almost 5 months. What a joke! She simply stated I don't have Dystonia & refered me to pain management.

Not going.

I went back to my neurologist and had a great discussion. You see, I don't have any tremors. (Yet, to be honest, I still haven't figured out what these internal vibrations are. I always thought heart related because they pulsate at times or feel more like anxiety...I just don't know any more. Lots going on.)

We both decided pain management was not a good solution for me and she is discontinuing Botox for me because she'd like the guided Botox by someone more skilled. (She does not have the tool. I guess headache treatments are different, specific sites...)

Good news. She refered me to an ortho/ neurologist. More good news, I'm doing pretty well on Carbidopa- levodopa. Can't believe how much movement I've regained! I can see the other drivers on the express way!

11 Replies
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I don't have experience with the drug, but I just wanted to say that's wonderful! and you found the rare doctor that actually listens to her patients (since we're the ones living in our bodies, one would think this wouldn't be so rare). I hope you continue to improve!

Hi, I’m pretty new on here. I have dopa responsive dystonia (DRD). I’m sorry for all your going through, but am glad your trial of carbidopa is helping. I was diagnosed 10 yrs ago. When I found the right dr he started me on siniment/carbidopa it’s amazing & it still helps me. Dopa responsive dystonia (DRD) is similar to Parkinson’s disease in that both have impaired dopamine synthesis & respond to levadopa & carbidopa. I have also experienced internal tremors that others can’t see, as well as dystonic tremors, very visible. Also, may want to look into occipital neuralgia- distinct headache characterized by piercing,throbbing or electric-shock-like chronic pain in upper neck, back of head & behind ears. Also, trigeminal neurolgia- involves lower face, jaw, around nose, & above eye. Dystonia tightness our muscles which can put pressure on nerves. Eye pressure, light sensitivity etc. occipital & trigeminal nerves good to research. I also have generalized dystonia. A lot of my pain stems from my neck up back of head though it started in left leg foot. Anyway, sounds like you’re headed in the right direction with meds and may you continue to get the answers & help you need. Hope some of this makes since. Your persistent and that’s a good thing! Stay strong, here if I can help.

AllHis
AllHis in reply to Tiedye

I was wondering if dopa- responsive Dystonia "cycles"? I am stiffening up now more and more. It's getting up out of bed or up after sitting. Is this arthritis or the carodopa- levodopa being less effective?

Also, my right heal is killing me. It throws everything off when you can't walk. I've tried new orthotics, but I am so disappointed.

Tiedye
Tiedye in reply to AllHis

Hi, sorry your going through this very frustrating from my understanding DRD may also extend to involve muscles of the arms and trunk. In addition DRD is typically characterised by signs of Parkinsonism that may be relatively subtle. Signs may include slowness of movement, stiffness and resistance to movement (rigidity), balance difficulties and postural instability. I too experience the stiffness & rigidity in spurts. I do know that it’s very important to take my sinement (carodopa/levodopa) at the same time every day and not eat an hour before or after as protein and certain foods can break down the effects of the med. Also, medical marijuana has helped me greatly with spasms & rigidity, stiffness & pain. Wishing you relief and better days ahead. Also, warm water swimming not like laps or anything lol! But the warmth of the water and the buoyancy gives my body a relaxed freedom of movement. Unlike anything I do on ground. Not alone of course.

AllHis
AllHis in reply to Tiedye

Still fighting the good fight. You wouldn't want to message me, would you? I've been fighting planter fasciitis for a few months now... It won't go away, leaving me wondering if it's Dystonia. Sigh.

(When will I learn?)

If I sit too long, I literally lock in place. Can't seem to straighten up and get moving...

And then I was in Los Vegas a week ago. Had a nice dinner (with literally a sip of my husbands wine,) and could barely stand up & walk. We were walking hand in hand down the strip & the next thing I know I was pulling my husband down with me. He snapped me quickly upright/ keeping me from landing in the street and asked me what I was doing?!?

I had the worst moment of vertigo, and then it was gone...

Scary. I do believe I would have been dismissed in the LosVegas setting with everyone believing me to be drunk... Now, that's even scarier.

AllHis
AllHis in reply to Tiedye

I'm back again.

So it looks like a disk at the C4-5 in my neck has herniated onto my spinal cord.

Now, even more questions.

Did Dystonia cause this or has this disk mimicked Parkinson's ?

Here we go again! It is truly hell working with doctors. Hell, I tell you! No one has time for me. They are done hearing me... Each body part has a physician. Not to mention my neck! For my neck alone, I have seen something like 10-12 specialists! Come on! Someone's got to find the solution!

Any insight?

AlecB625
AlecB625 in reply to Tiedye

Hi, how old were you when first symptoms of dystonia started, and what type of dystonia (region) do you have? Thank you

I have been on this therapy since the early 80 and it has made a huge difference to my life. I was in a wheelchair before and now I can work with crutches.

Do share. 😊

Dear AllHis, I hope the Siniment is still helping you, as it has for me. I also have cervical spondalosis, due to the dystonia basically it causes narrowing in the hole where your nerves branch through, when the disk move it causes severe burning pain in my neck that radiates up into my head the back of the eyes, not much can do but lay down in a quiet room with little light. Basically my neurologist told me there’s know since going from dr to dr for this as I could never have surgery for this due to my dystonia, though I New he was right, I was sad & angry I yet had another problem that couldn’t be fixed. I got over it, he put me on 100mg 1x a day of neurontin which takes care of the burning pain and only bothers me once In a while. I’m very thankful, we tried physical therapy with neck pulling but for me it sent me into a dystonic storm. My dystonia sets off from message, pressure or if someone manipulated my body parts for instance a foot brace to try to straighten my left foot that’s inward, can’t wear it my muscles go crazy to fight it. We’re all different, what’s right for me, may not work for you. If, you have a neurologist which I hope you do, ask them for a referral to a back specialist if they won’t, ask them why,and what your options are to help you. Maybe physical therapist would help you, or a med. I know swimming in warm water is very helpful for me. I also, would be lost in pain and discomfort without medical marijuana it is a godsend for me! Wishing you, get the answers you need. Even if you found a dr for your disk problem, could or should you have surgery with your other conditions? What are you seeking from these doctors you’ve seen, a solution? Sometimes, the solutions are small but can help greatly, it took me awhile to realize this as at the time I think I was looking for someone to fix it. Maybe this doesn’t make since, just want to be helpful, best wishes to you & peace of mind!

AllHis
AllHis in reply to Tiedye

Very kind of you. Simple solutions have been my LIFE. I just do what works for me.

I'll be praying for you. stenoses is rough, but if you would visit Cincinnati at UC, I know a neurosurgeon who may help by widening the opening for you.

I AM FORTUNATE. the disk bulged the wrong way- onto my spine. I was told I have plenty of space, if we just get it off the spinal cord...

Dopamine controls the pain and ANY MANIPULATION of my neck pauses great pain.

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