Anyone dealing with Dystonia?

Posted by matttheschmatt @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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@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

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@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.

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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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This may be good news for Dystonia. I've had Spasmodic Torticollis since 1993, when I was diagnosed. I think I had it earlier because I was sensory and light sensitive. DIZZINESS, plus some minor movement disorders! Many neurologists consider this a sensory disease. I get sick, like I'm having a seizure when I see a metallic green car! I also have oral mandibular tightness because smiling is difficult. No pain, just tightness! Most of my 10 aunts and uncles showed signs of dystonia along with my 50 cousins. They were/are hyperactive, nervous, oral mandibular tightness with extreme talking, smoking and chewing gum. The mouth has to move all the time, along with essential tremors. Plus my cousins are showing essential tremors, oral mandibular problems, shakiness and cognitive problems. I have Microscopic Colitis and showing IMPROVEMENT WITH SPASMODIC TORTICOLLIS ! My neurologist is ASTONISHED! I consume no grains, no sweets, no artificial anything and the only thing I eat is non-processed meat, well-cooked vegetables and fruit. The diet is called "THE SPECIFIC CARBOHYDRATE DIET!" My EMG showed minimal electrical activity in the neck region as before the Diet, it was LOUD! Not a cure yet, but I am doing much better.DIET IS EVERYTHING! We are killing ourselves by what we eat in this country. We have the worst diet of any country.

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@matttheschmatt

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.

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Clonezepam is the only medication that helps me. Neurologists always want to give you ARTANE, but that makes me shaky and worse. I have an okay neurologist but she refuses to give me the proper amount of Clonezapam for severe pulling and pain. She is about to be fired and I'm looking for a compassionate caring neurologist. Every time I go this neurologist she learns a thing or two from me. I know more about Spasmodic Torticollis than she through my support groups and Symposiums I've attended plus living with this monster forever! I've informed her that Dystonia is a sensory disease. Yes, white light and white paper would send me through the roof and when I see a green metallic colored car, I feel like I'm experiencing a seizure. My disease originates in the Basil Ganglia and I'm overloaded with over the top neurotransmitters, (ACEYTOCOLENE) hence the hypertrophied muscles in my neck that look like ropes. I hate this disease. This disease is mostly GENETIC and only one family member has to transfer the DYT1 gene to their offspring.

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@oakbourne

Clonezepam is the only medication that helps me. Neurologists always want to give you ARTANE, but that makes me shaky and worse. I have an okay neurologist but she refuses to give me the proper amount of Clonezapam for severe pulling and pain. She is about to be fired and I'm looking for a compassionate caring neurologist. Every time I go this neurologist she learns a thing or two from me. I know more about Spasmodic Torticollis than she through my support groups and Symposiums I've attended plus living with this monster forever! I've informed her that Dystonia is a sensory disease. Yes, white light and white paper would send me through the roof and when I see a green metallic colored car, I feel like I'm experiencing a seizure. My disease originates in the Basil Ganglia and I'm overloaded with over the top neurotransmitters, (ACEYTOCOLENE) hence the hypertrophied muscles in my neck that look like ropes. I hate this disease. This disease is mostly GENETIC and only one family member has to transfer the DYT1 gene to their offspring.

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Is this cervical dystonia that you have. Was it related to neck spine Injury that triggered it.
Do you have body pain all over your body. Muscle bone skin. Etc. Do you have digestive issues. Have you had your facial muscles tighten up etc.

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@12061948

Is this cervical dystonia that you have. Was it related to neck spine Injury that triggered it.
Do you have body pain all over your body. Muscle bone skin. Etc. Do you have digestive issues. Have you had your facial muscles tighten up etc.

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@12061948 Actually not particularly. Mine is related to my form of Light Chain Amyloidosis, probably Gelsolin or something close. And yes to you other questions, except the bone, muscles and skin do not tighten up. Cutis Laxa is what I get, "Loose Skin"

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@12061948

Is this cervical dystonia that you have. Was it related to neck spine Injury that triggered it.
Do you have body pain all over your body. Muscle bone skin. Etc. Do you have digestive issues. Have you had your facial muscles tighten up etc.

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Yes, Cervical Dystonia. No, not related to spine injury. Mine is Genetic. I have not experienced pain all over my body. Yes, I have diarrhea from Microscopic Colitis, but that's a whole nother issue. My pain is the neck. We used to be called the "Pain in the Neck Ladies" in my support group. Yes, my mouth gets tight as a Tic along with pain. It sucks when you know more about this disease than your neurologist. I ask again, what are they teaching in medical school?

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@oakbourne

Yes, Cervical Dystonia. No, not related to spine injury. Mine is Genetic. I have not experienced pain all over my body. Yes, I have diarrhea from Microscopic Colitis, but that's a whole nother issue. My pain is the neck. We used to be called the "Pain in the Neck Ladies" in my support group. Yes, my mouth gets tight as a Tic along with pain. It sucks when you know more about this disease than your neurologist. I ask again, what are they teaching in medical school?

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I have never heard of Light Chain Amyloidosis. Could you inform me about this because I've never heard of it. Plus what is Gelsolin? What is Cutis Laxa? "Loose Skin." You can teach me a lot. Thanks, Dorothy

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@oakbourne First, I always welcome the questions about Amyloidosis. I have my own story on the Internet at https://bit.Ly/1w7j4j8 "Amyloid and Old Karl"
Free. It is an explanation and calendar when each of my symptoms has appeared. Then, the following abstract of Gelsolin is from Handbook of Clinical Neurology. There is a lot more at the Mayo search line under Amyloidosis, and Helsinki University Hospital, where Gelsolin apparently originated. 2013;115:659-81. doi: 10.1016/B978-0-444-52902-2.00039-4.
Hereditary gelsolin amyloidosis.
Kiuru-Enari S1, Haltia M.
Author information
Abstract
Hereditary gelsolin amyloidosis (HGA) is an autosomally dominantly inherited form of systemic amyloidosis, characterized mainly by cranial and sensory peripheral neuropathy, corneal lattice dystrophy, and cutis laxa. HGA, originally reported from Finland and now increasingly from other countries in Europe, North and South America, and Asia, may still be underdiagnosed worldwide. It is the first and so-far only known disorder caused by a gelsolin gene defect, namely a G654A or G654T mutation. Gelsolin is a principal actin-modulating protein, implicated in multiple biological processes, also in the nervous system, e.g. axonal transport, myelination, neurite outgrowth, and neuroprotection. The gelsolin gene defect causes expression of variant gelsolin, followed by systemic deposition of gelsolin amyloid (AGel) in HGA patients and even other consequences on the metabolism and function of gelsolin. In HGA, specific therapy is not yet available but correct diagnosis enables adequate symptomatic treatment which decisively improves the quality of life in these patients. A transgenic murine model of HGA expressing AGel is available, in anticipation of new treatment options targeted toward this slowly progressive but devastating amyloidosis. Present and future lessons learned from HGA may be applicable even in diagnosis and treatment of other hereditary and sporadic amyloidoses.

KEYWORDS:
Meretoja's disease; amyloid angiopathy; corneal lattice dystrophy; cutis laxa (loose skin, especially on the face); facial palsy; familial amyloid polyneuropathy IV; gelsolin; gelsolin amyloidosis; hereditary amyloidosis; peripheral neuropathy

PMID: 23931809 DOI: 10.1016/B978-0-444-52902-2.00039-4
There is a lot more. Two inexpensive and good books are Amyloidosis by Dr. Kee, and Heart Like Cement (or Cement Heart– I can never remember) I think by Clement.Ask more when you are ready.

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@oakbourne

Yes, Cervical Dystonia. No, not related to spine injury. Mine is Genetic. I have not experienced pain all over my body. Yes, I have diarrhea from Microscopic Colitis, but that's a whole nother issue. My pain is the neck. We used to be called the "Pain in the Neck Ladies" in my support group. Yes, my mouth gets tight as a Tic along with pain. It sucks when you know more about this disease than your neurologist. I ask again, what are they teaching in medical school?

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@ Oakbourne My Dystonia hit this week. I am nearly voiceless at the moment. But I knew it was coming in my Gelsolin.

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I had Selective Denervation and received relief. That was back in 2000. Dr. Arce is the GURU for this operation and it saved my life. I nearly choked on Shredded Wheat that expands in your throat once it touches milk. Without my husband, I would've choked to death and my pain has decreased.

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