Dopa-Responsive Dystonia: Hi everyone, I'm... - Dystonia Society

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Dopa-Responsive Dystonia

Dizzy64 profile image

Hi everyone, I'm new have suffered with Dopa-Responsive Dystonia for 5yrs after 200 blood tests and being told it's in my head while I'm spasming away for up to 24hrs on & off and also have wear and tear of the cervix of the neck, plus various disabilities.

It would be nice to chat with the community whom understand what it's like to have Dystonia and the fatigue that comes with it. As I don't know anyone else with Dystonia and most people have never heard of it.

16 Replies

Hi, I suffer with dystonia and rheumatoid, my neck hurts all the time it's awful living with this and you are right people don't know what it is. It took the doctors 3 years to diagnose it and I think that's what's caused the damage. I have Botox every 10 weeks but the pain never goes. Hope you get some help and some relief. Xx

Dizzy64 profile image
Dizzy64 in reply to sharlynn

Hello Sharlynn,

Botox is something I have never been offered, I am on Pregabalin (Lyrica) for my neck amongst other medication as I have a chronic spinal condition.

I find the Pregabalin works well and perhaps it is something you could ask for, if you haven't already xx

It does seem incredible that there are so many common symptoms with cervical Dystonia ( wear and tear pain, taking so long to diagnose, no- one including gp’s ever having heard of it, people thinking it’s in your head and not believing you etc etc....) and yet there is so little investment in researching more effective treatment, better understanding and more accurate knowledge about the condition. I wonder how many of us have ever been asked to complete a detailed questionnaire or better been ‘interviewed ‘ about the reality and impact of the condition on sufferers themselves.

Thank you Dizzy 64.....I do find it helpful to read comments such as yours.....lifting spirits at least for a few minutes.

Dizzy64 profile image
Dizzy64 in reply to Rkai

Hi Rkai you're right I've never been asked to fill anything in and can't go out on my own as I'm too vulnerable as I have other health conditions and a chronic spinal condition I never let it get me down even though it all has had a massive impact on my life. The hardest thing I find is the tiredness by 1pm I feel exhausted and have to have a sleep

Hi dizzy64, I also have dopa-responsive dystonia , torsion dystonia cervical spondylitis degenerative disk disease. So sorry I just wondered if you were ever given sinemet/levodop for the dopa responsive dystonia? When I was diagnosed my neurologist started me slowly on it and it was a huge help for me, from my understanding it’s one of the first meds they try for DRD. Hope your doing well!

Dizzy64 profile image
Dizzy64 in reply to Tiedye

Hi Tiedye, I am on Madopar for my Dystonia and Pregabalin for the wear and tear in the cervix of my neck. I was on quite a few different meds before the Madopar as it took them over a year to diagnose. The Madopar has made a huge difference as I wouldn't want to go through the spasms again.

I hope you are well Tiedye and thank you for your post.

Tiedye profile image
Tiedye in reply to Dizzy64

Thanks Dizzy64, I never heard of Madopar I looked it up I’m on sinement both are used for dopa responsive dystonia. Madopar-levodopa + benserazide. Sinement-levodopa+carbidopa . I will ask my neurologist about it as I had to cut back on dosage 3 yrs ago due to side effects. Very, interesting . Thank you! I see him next month :)

Dizzy64 profile image
Dizzy64 in reply to Tiedye

Hi Tiedye, it's worth asking, as Dopa-Responsive Dystonia is one of uncommonest forms of Dystonia.

Take care and you're welcome, if it helps

I take Sinemet Plus and it has made a huge difference to my life. It is amazing. No more tremors. It is lovely to be able to drink from a cup normally. I have suffered from Dystonia since I was 5. I am 63 now.

Do you still hang out here? I am currently trying dopamine for my cervical Dystonia. I'd love to chat a bit. I was just diagnosed with Fibromuscular Dysplasia, (FMD) so I took a detour hoping to blame FMD for all my symptoms...

I'm slowly finding what works and what doesn't. Everything is trial and error...

Hope you're doing well.

Dizzy64 profile image
Dizzy64 in reply to AllHis

Hi AllHis,

My reply is below, as I forgot to press your reply, so it looks like a new posting from me.

Hope you can see it, if not let me know

Take care,

AllHis profile image
AllHis in reply to Dizzy64

Please try again. Lol

Dizzy64 profile image
Dizzy64 in reply to AllHis

Hiya AllHis,

See if I can get it right this time, lol!

I take Madopar for my Dystonia and Pregabalin for the wear & tear of the cervix in my neck. It is trial and error as to what helps you best.

I tried several different meds before finding the most suitable. As I have multiple health conditions.

Kind regards

AllHis profile image
AllHis in reply to Dizzy64

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!

AllHis profile image
AllHis in reply to AllHis

I started a new discussion under Trial for Dopamine- Respnsive Dystonia ...

Dizzy64 profile image
Dizzy64 in reply to AllHis


That's brilliant news! Hope you continue to feel well!

All the best,

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