Cervical dystonia (Spasmodic Torticollis): Looking for support

Posted by oakbourne @oakbourne, Mar 19, 2018

I need help with my condition: Spasmodic Torticollis

Welcome to Connect, Oakbourne.
Other members have posted about spasmodic torticollis, also known as cervical dystonia, and other forms of dystonia. You may wish to read and join these discussions.

– Anyone else have cervical dystonia? https://connect.mayoclinic.org/discussion/kaia-hi-kaja-this-is-kevin-kelley-just-read-your-post-on/
– Dystonia – triggers that suppress symptoms of dystonia: https://connect.mayoclinic.org/discussion/dystonia-triggers-that-suppress-symptoms-of-dystonia/
– cervical dystonia: https://connect.mayoclinic.org/discussion/cervical-dystonia/

I’m tagging @cbuss @Kaia, @netfun2011 @kevinkelley @shenaaz @lo @paulm @ycarney @jpoffo @nissa @sweetheartsdance @tmnm @helpinghand @bjmiller, @matttheschmatt @AgentDarien with the hope they will return and share their insights, too.

Oakbourne, how long have you been dealing with the symptoms? Is surgery a possibility for you?

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I have Spasmodic Torticollis, oralmandibular problems, can't smile, and I'm a retro left looker. I was diagnosed in 1990, and had the Selective Denervation operation in 2000. I was choking on multiple foods. Dr, Arce performed the operation and I did well until a few years ago. New neuro pathways are involved. Dr. Arce informed me that I'm a complicated case. No more surgery, and NO to Deep Brain Stimulation. I take 4mg of Klonopin in the morning because of pain and stiffness and I walk 9 miles in the afternoon and have nothing to take for the walk. My young doctor does not want to give me a 2 mg Klonopin for my 9 mile walk. She wants me to take Artane, but it makes me shaky. I have never felt normal, even before I was diagnosed. Always shaky, dizzy, and completely out of sorts. I was 37 when diagnosed at the Medical College of GA. I was given way too much Botox, 300 units every 3 months and built up antibodies. I now take Myoblock by this young doctor but it's hit or miss. Dr. Arce wants to do a Genetic Study on my kin folk. Most of my kin have/had essential tremors, oralmandibular shakiness and tightness, and something had to be in their mouth – cigarettes smoking or chewing gum. I was a member of Dystonic Inc., and they were great, but Howard Thiel and his assistant had to shut down the organization. I am lost! I feel comfortable around ST'rs. Where do I go next for support? I enjoy going to ST symposiums. Can you help? Thanks, Dorothy

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Anyone else out there experiencing this condition?

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@tdonoho

Anyone else out there experiencing this condition?

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Hi @tdonoho and welcome to Connect. I moved your message to this existing discussion where you'll meet @oakbourne. I'd also like to bring @helenfrances @wolfbauer and @jlfisher56 into this discussion as they have all talked about cervical dystonia. You may also be interested in this discussion:

– Anyone dealing with Dystonia? https://connect.mayoclinic.org/discussion/anyone-dealing-with-dystonia/

@tdonoho, how long have you had cervical dystonia and how are you managing it?

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I have it too. What treatments have you used so far?

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@tdonoho

I have it too. What treatments have you used so far?

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Hello @tdonoho,

I am sorry to hear that you have this disorder. How long have you been experiencing symptoms and was this difficult to diagnose?

I look forward to hearing from you again.

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I self diagnosed 9 years ago. I experienced a broken neck at C1/2 in 1983 resulting from a car accident. A spinal fusion was quite successful in bringing me back to a functional state until one day in 2010 I awoke to the stffest neck I had ever known. The head jerking and neck muscle spasticity follwed soon thereafter. Researched my condition, went to doctors and told them that I thought I had this condition. After some diagnostic work on their part, they too confirmed my findings.
I was injected with Botox for nearly 7 years and am have built an immunity to this toxin. It helped only somwhat during each of the 90 day cycles of administration.

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@oakbourne

I have Spasmodic Torticollis, oralmandibular problems, can't smile, and I'm a retro left looker. I was diagnosed in 1990, and had the Selective Denervation operation in 2000. I was choking on multiple foods. Dr, Arce performed the operation and I did well until a few years ago. New neuro pathways are involved. Dr. Arce informed me that I'm a complicated case. No more surgery, and NO to Deep Brain Stimulation. I take 4mg of Klonopin in the morning because of pain and stiffness and I walk 9 miles in the afternoon and have nothing to take for the walk. My young doctor does not want to give me a 2 mg Klonopin for my 9 mile walk. She wants me to take Artane, but it makes me shaky. I have never felt normal, even before I was diagnosed. Always shaky, dizzy, and completely out of sorts. I was 37 when diagnosed at the Medical College of GA. I was given way too much Botox, 300 units every 3 months and built up antibodies. I now take Myoblock by this young doctor but it's hit or miss. Dr. Arce wants to do a Genetic Study on my kin folk. Most of my kin have/had essential tremors, oralmandibular shakiness and tightness, and something had to be in their mouth – cigarettes smoking or chewing gum. I was a member of Dystonic Inc., and they were great, but Howard Thiel and his assistant had to shut down the organization. I am lost! I feel comfortable around ST'rs. Where do I go next for support? I enjoy going to ST symposiums. Can you help? Thanks, Dorothy

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Hello. I too am an STr. Are you still part of this discussion?

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@tdonoho

I have it too. What treatments have you used so far?

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Physical therapy, Botox injections, dopamine, carbidopa, flexerel, and several others.

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Hi hope everyone is well, I haven't found many people on here with cervical dystonia. I was diagnosed with CD about 17 yrs ago and I was told my CD leveled off about 10 yrs ago. Now after all this time I'm experiencing very bad tremors, at times the sides of my face tighten up, I now having hand & finger spasms and I get bad tremor events that resemble seizures but their not ( been tested too many times already). These happen most evenings which are unbearably painful I'm now in constant pain and the tremors never really go away. I'm so confused and frustrated, nothing in my life has changed except maybe I'm a tad older now. Why now the increase in activity and added symptoms. Any insight will be greatly appreciated thanks

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@billdemon Welcome to Mayo Clinic Connect. You were diagnosed 17 years ago with cervical dystonia, You are suddenly experiencing a large increase in tremors and unbearable pain from the disorder. You are looking to connect with others that have had similar experiences.

You will see that I have moved your question into a discussion where members have previously discussed cervical dystonia. You will notice members like @oakbourne @tdonoho @oldkarl @sadnancy have experience with this topic and may be a good resource for you.

I also encourage you to scroll back through the comments to find previously shared suggestions. There are two other previous discussions on cervical dystonia you may want to scroll through a read. I have link these discussions below.

– Anyone else have cervical dystonia? https://connect.mayoclinic.org/discussion/kaia-hi-kaja-this-is-kevin-kelley-just-read-your-post-on/

– Anyone dealing with Dystonia? https://connect.mayoclinic.org/discussion/anyone-dealing-with-dystonia/

May I ask what your provider has said the likely cause of your increased symptoms are?

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@erikas

@billdemon Welcome to Mayo Clinic Connect. You were diagnosed 17 years ago with cervical dystonia, You are suddenly experiencing a large increase in tremors and unbearable pain from the disorder. You are looking to connect with others that have had similar experiences.

You will see that I have moved your question into a discussion where members have previously discussed cervical dystonia. You will notice members like @oakbourne @tdonoho @oldkarl @sadnancy have experience with this topic and may be a good resource for you.

I also encourage you to scroll back through the comments to find previously shared suggestions. There are two other previous discussions on cervical dystonia you may want to scroll through a read. I have link these discussions below.

– Anyone else have cervical dystonia? https://connect.mayoclinic.org/discussion/kaia-hi-kaja-this-is-kevin-kelley-just-read-your-post-on/

– Anyone dealing with Dystonia? https://connect.mayoclinic.org/discussion/anyone-dealing-with-dystonia/

May I ask what your provider has said the likely cause of your increased symptoms are?

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Not sure yet I see my neurologist next week and a new doctor in February (which specializes in movement disorders) where I live it very hard to find dystonia doctors especially ones that take my insurance the other problem is most doctors are usually booking months out. Well I figured in the mean time I could see if anyone else has similar issues, that was the thought anyway.

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