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matttheschmatt
@matttheschmatt

Posts: 7
Joined: Feb 07, 2017

Anyone dealing with Dystonia?

Posted by @matttheschmatt, Aug 8, 2017

Dealing with back, throat, toe and forearm dystonia post brain injury. Have tried many medications to no avail. Some temporary relief from Botox. Does anyone have any tips fior dealing with this condition?

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Hi @matttheschmatt,

Welcome, and thank you for posting your question on Connect. We have a few pst discussions on various forms of dystonia which might interest you:

– 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, with the hope they will return and share their insights, too.

Here is some information about dystonia care at Mayo Clinic:
http://www.mayoclinic.org/diseases-conditions/dystonia/dystonia-care-at-mayo-clinic/ovc-20163833

@matttheschmatt, have you considered trying deep brain stimulation? Besides botox, how are you currently managing the pain?

My dystonia slowly began about12-14 years ago as blepharospasm and vertical dystonia. Luckily Mayo’s Jacksonvile successfully used botox in both areas. At that time my neurologist told me the best thing I could do is to get involved with the Dystonia Medical Research Foundation headquartered in Chicago. That is where the best research is posted and a wonderful place to get involved with support groups and advocacy. I have been a congressional advocate for dystonia for 11 years now and it just seems that all of us in the advocacy seem to go better and better. We are advocating for a CURE!
The more you are engaged in the Dystonia Advocacy Network, the more you learn and get better. We do not want anyone else to suffer like we do.
Most of us donate our brains for research as well as join into clinical trials. You’ll find new friends that understand you and also have a lot of fun with them.
I love our group and what we do…THE CURE IS MUCH MORE IMPORTANT THAN MY LIFE WITH DYSTONIA, ANYTHING I CAN DO TO CONTRIBUTE TO THE CURE AND AWARENESS OF THE RARE DISEASE I WILL DO…JOIN IN.

@AgentDarien

My dystonia slowly began about12-14 years ago as blepharospasm and vertical dystonia. Luckily Mayo’s Jacksonvile successfully used botox in both areas. At that time my neurologist told me the best thing I could do is to get involved with the Dystonia Medical Research Foundation headquartered in Chicago. That is where the best research is posted and a wonderful place to get involved with support groups and advocacy. I have been a congressional advocate for dystonia for 11 years now and it just seems that all of us in the advocacy seem to go better and better. We are advocating for a CURE!
The more you are engaged in the Dystonia Advocacy Network, the more you learn and get better. We do not want anyone else to suffer like we do.
Most of us donate our brains for research as well as join into clinical trials. You’ll find new friends that understand you and also have a lot of fun with them.
I love our group and what we do…THE CURE IS MUCH MORE IMPORTANT THAN MY LIFE WITH DYSTONIA, ANYTHING I CAN DO TO CONTRIBUTE TO THE CURE AND AWARENESS OF THE RARE DISEASE I WILL DO…JOIN IN.

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@101082101082

You are making a great contribution in advocating for Dystonia, not just for yourself but for future patients! It certainly feels good, doesn’t it?

Is there anyone else in the group part of the Dystonia Advocacy Network? Would you like more information from @101082101082 as to how to get involved?

@cbuss @Kaia, @netfun2011 @kevinkelley @shenaaz @lo @paulm @ycarney @jpoffo @nissa @sweetheartsdance @tmnm @helpingh @bjmiller and @matttheschmattIs

If so, let’s hear from you!

Teresa

My 5 month old son was diagnosed a little over a month ago with Dystonia. They have done an MRI which shown a delayed mylenization. His was still as if he were a newborn. They did blood work which shown everything to be okay. Spinal fluid was good. Genetics testing was okay. But we still have no answers as to why he has Dystonia. Or what to even expect in the future… I wanted to get a second opinion with a different neurologist but because he is so little, no one will see him. Children’s mercy is the only option and that’s where we have been. Does anyone have any advice or maybe some experience similar of their own?

Hi @chey1023, welcome to Connect. You'll notice that I moved your message to an existing discussion about dystonia. I did this so that you can meet other members like @AgentDarien and @matttheschmatt.
I encourage you to also read and post to this discussion:
– Myelination process and my daughter https://connect.mayoclinic.org/discussion/myelination-process-and-my-daughter/

I can only imagine how frightening this is as a parent of such a young child. Do you know about the Dystonia Medical Research Foundation? https://www.dystonia-foundation.org/ They may have good references for specialists in pediatric dystonia.

Still searching for help for my daughter with this also. She is not a candidate for botox. Is on Artane but does not seem to be helping. Waiting for a reply to a referral we got.

@Kaia

Still searching for help for my daughter with this also. She is not a candidate for botox. Is on Artane but does not seem to be helping. Waiting for a reply to a referral we got.

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We have tried about 8 medications with none helping and only Clonezepam helping a little with anxiety and some muscle tension. We recently attended a forum led by the Dystonia Research Foundation at Northwestern Hospital in Chicago. Dr. Cynthia Comella of Rush Medical Center showed a presentation which listed many drugs and their efficacy for dystonia patients. Sadly most didn't work well. Please contact the foundation to get a copy. It is eye opening.

Hello @matttheschmatt

Thanks for providing information about the forum you attended. I am sorry to hear that you did not receive better news regarding effective medications to treat Dystonia. In case any of our other Members are interested in programs that will be presented about Dystonia, here is a website listing events in different areas across the country, https://www.dystonia-foundation.org/site/event/what-is-dystonia.

Matt, how are you doing with your dystonia symptoms currently?

I look forward to hearing from you again.

Teresa

Hello. I have the type of dystonia called cervical dystonia, which involves the neck but in many of us also affects the jaw and facial and head muscles. I tried beta-blockers and muscle relaxers and while they gave me some relief, the side effects were so bad in me that I had to come off them. I really don't want to do the botox. I'm looking into LDN, because I've heard it can help some with dystonia a lot and I also have fibromyalgia and it has great results with that too. Problem is, LDN is off-label usage and it is hard to find a prescribing doctor. I'm still in the process. I do tai chi in that helps a lot with balance and mindfulness and relaxation. Lifestyle Changes focusing on low stress and meditation and muscle relaxation are kind of the only things that help so far for me.

Have had another round of botox and its helping. What is LDN?

@indreni77

Hello. I have the type of dystonia called cervical dystonia, which involves the neck but in many of us also affects the jaw and facial and head muscles. I tried beta-blockers and muscle relaxers and while they gave me some relief, the side effects were so bad in me that I had to come off them. I really don't want to do the botox. I'm looking into LDN, because I've heard it can help some with dystonia a lot and I also have fibromyalgia and it has great results with that too. Problem is, LDN is off-label usage and it is hard to find a prescribing doctor. I'm still in the process. I do tai chi in that helps a lot with balance and mindfulness and relaxation. Lifestyle Changes focusing on low stress and meditation and muscle relaxation are kind of the only things that help so far for me.

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Hello @indreni77, Welcome to Mayo Clinic Connect. Thank you for posting! I'm sorry to hear you are in pain.

I'm glad to see you are doing some martial art and practicing mindfulness and relaxation. From experience, I know it really helps and is so good for our mind.

I'm interested to follow you and see if you do find a prescribing MD for LDN and how it effects you and if it helps. Please keep us updated!

What side effects did you have with the beta-blockers and muscle relaxers?

@matttheschmatt

Have had another round of botox and its helping. What is LDN?

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@matttheschmatt I just googled your question and I found several websites that discuss LDN, here is one article from the National Insitute of Health, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

Here is the first paragraph of the above referenced article: "Low-dose naltrexone (LDN) has been demonstrated to reduce symptom severity in conditions such as fibromyalgia, Crohn’s disease, multiple sclerosis, and complex regional pain syndrome. We review the evidence that LDN may operate as a novel anti-inflammatory agent in the central nervous system, via action on microglial cells. These effects may be unique to low dosages of naltrexone and appear to be entirely independent from naltrexone’s better-known activity on opioid receptors. As a daily oral therapy, LDN is inexpensive and well-tolerated. Despite initial promise of efficacy, the use of LDN for chronic disorders is still highly experimental. Published trials have low sample sizes, and few replications have been performed. We cover the typical usage of LDN in clinical trials, caveats to using the medication, and recommendations for future research and clinical work. LDN may represent one of the first glial cell modulators to be used for the management of chronic pain disorders."

Teresa

@indreni77

Hello. I have the type of dystonia called cervical dystonia, which involves the neck but in many of us also affects the jaw and facial and head muscles. I tried beta-blockers and muscle relaxers and while they gave me some relief, the side effects were so bad in me that I had to come off them. I really don't want to do the botox. I'm looking into LDN, because I've heard it can help some with dystonia a lot and I also have fibromyalgia and it has great results with that too. Problem is, LDN is off-label usage and it is hard to find a prescribing doctor. I'm still in the process. I do tai chi in that helps a lot with balance and mindfulness and relaxation. Lifestyle Changes focusing on low stress and meditation and muscle relaxation are kind of the only things that help so far for me.

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@indreni77

I appreciate your adding to this discussion about the use of Tai Chi, etc. for your stiffness. I have stiffness related to a neurological problem and Tai Chi and other gentle exercise programs are most helpful to me in maintaining range of motion as well as balance.

Teresa

@matttheschmatt

Have had another round of botox and its helping. What is LDN?

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I have been diagnosed with cervical dystonia but I feel it throughout my whole body. It mainly affects my right side. After 6 years of treatment my neuro said she would refer me to the Mayo Clinic. However, she said it was difficult to get accepted. Is there anything I should do while I am waiting to hear? Also, I am finding the Facebook Group of Cervical Dystonia Support Forum to be helpful and has a lot of additional information.

Hi, I was diagnosed with Spasmodic Torticollis in 1992, at the Medical College of GA. I never felt right as a child because I was always experienced shakiness, dizziness and a hard time with swallowing. I was sick and didn't understand why. Howard Thiel, president of Dystonia Inc. informed me I had all the symptoms of ST. This was when Botox was not approved by the FDA. I had to sign a waiver if things went awry. I didn't care! I was in severe pain and pulling of the neck. I am retrocollis and a left looker. Stress brings out the horrific symptoms, but the problem lies in the Basal Ganglia in the brain and we put out too much acetylicholine, a neurotransmitter. I also have oral mandibular problems which makes smiling hard. This is not a fun disease. I had to load up on Klonopin and Champagne to get married. My neck was still pulling like crazy. Klonopin helps me. Dr. Arce at Shands in Jacksonville, FL, performed Selective Denervation and it helped, but the nerves regenerated, but I am so much better now than before the operation. You do build up antibodies if the physician injects too much Botox and that's what happened to me. I now take Myoblock. This is familial. It runs in families and only one parent has to carry the DYT1 gene. I got this disease from my Mom's side. All my aunts, uncles and many cousins show signs of Dystonia such as ET, oral mandibular problems, and extreme shaking. I'm related to Ted Turner and when his father killed himself in S. C., Ted Turner's foot would not stay still. Stress brought on the symptoms. He had to put one foot on top of the other foot because he could not walk and he was embarrassed. Dr. Arce wanted to do a genetic study but most of my aunts and uncles have passed. Just because you don't show symptoms, you still carry the DYT1 gene and it's passed on to your children or grandchildren. If you have any questions, please ask. The DMRF is a good start. Give them a call. Warm Regards, Dorothy

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