Anyone dealing with Dystonia?

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 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

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

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

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.

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.

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.

@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"

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?