Got dystonia from a car accident 3.5 years ago. Never got any answers from doc, just offers for antidepressants. It crippled my whole body leaving me with little range of motion and little feeling. It took about 6 months of insane amounts of pot, pain, and effort every single day but I can move again! I would take a high dose of thc at least 3x daily and worked with the tiny bit of movement I had, using my hands or objects to manually stimulate the muscles. Took a while to learn but eventually I learned to push with my brain to where the toxic nerves are, calm down the system, take control, and push as hard as I can to just get the nerves to light up even a little. After I started to get a small amount of movement back my head that faced the floor shot up and twisted back onto my torso. This was, despite a lot of runners up the craziest sensation I’ve ever experienced. Nervous system fired up and the hot nerves started cooling off, vision and hearing improved, my brain found its way to a lot more muscle and holy cow i could walk afterwards! In the few days that have followed I’ve made a substantial recovery. Anything that wont move now, I find a way and it’s working! Can jump up and down even!

For the last year, I have experienced these symptoms on a monthly basis in many different muscle groups. In the last 2 months, the symptoms have escalated to every other day with the pain factor rising to an unbearable level ( I can only compare it to being worse than passing a gall stone) and a duration of 10 - 15 min during which I am able to do nothing but scream. I get no warning and it goes from 0-100 right now. I'm 60 and this has stopped me in my tracks. Thank you for the info.

Great Info. Thanks for sharing.

I have dystonia and i created yhis channel to spread awareness.

There are so little doctors with dystonia knowledge. For my, it was years till I found a doctor at Stanford. Botox would be the best option for me. Also, during the crisis, hot bottles, pads, and Xanax. Weed might help to reduce the level of pain as well. It is super important to control the stress, so going along a psychiatrist is very helpful long term.

My doctor is thinking the ingredient in "Maxolon anti-nausea" was what triggered my dystonia.. Have any of you with dystonia ever had the drug metoclopramide?

I think I had one of those days where I stay up to midnight just seeing why I have these random muscle spasms in my shoulders and I think I just found out what's wrong

I have been diagnosed with Cervical spinal stenosis, I am a 79 yr young, woman with a long history of health issues that were puzzling to my doctors. I am writing this with one finger. Three fingers on each hand are not able to do what I want them to. For years I had been an executive secretary and typed at up to 90 words a minute. Now not so much, lol. I also am lightheaded all the time when I stand or even try to sit up. Dystonia looks like it has some of the same symptoms, so does Multiple Sclerosis. I do have myelin stripped from the nerves in my neck according to my mri scan. They say I must have had it for decades but did not know it yet. I know when I was about 30 one doctor said he thought I had MS but then unfortunately he died and I was doing ok, like it went in remission, I thought I was healed and completely forgot about it and lived my life normally. Then just the last three or four years it is showing it’s ugly face again. I heard this was normal, what do you think? I also understand MS you don’t die from but you will die with it. Is that still the case?

I was ripped off benzodiazepines and other meds after 25 yrs. Iv developed what I believe to be dystonia.. just weeks after my feet began twisting outwards and locking. My whole body goes rigid every few minutes esp in the mornings. This happens so bad to the point my shoulders are near dislocating. Air is forced out through my mouth and I near lose consciousness as my face contorts for up to 15 seconds. Is this likely to leave me one day. I have no Dr to ask here after my forced cold turkey off meds. Thank you in advance. ( I also developed akathisia but after 39months I'm seeing some improvements with that )

I was recently diagnosed with jackhammer esophagus and a plethora of other gastrointestinal disorders/diseases could they be connected somehow to dystonia because I experience severe hand , feet and hip spasms daily

My uncle was just diagnosed, I am so sad for him.

This is very debilitating, it happens in my wrist, for up to 24 hours, and also in my ankle, making me unable to walk, also in the eyelids and shoulder/arm muscles :(

What would be your opinion on use of Neurophysiotherapy for a patient with dystonia?

Yall played my signing monsters

I don't know what I have, I get so sick if I write, draw, paint, read etc. I know this prob isn't it either but I've had to deal with this my entire life. I'm really tired of dealing with it. I wanna be able to do the things I love without feeling such nausea and sometimes headaches. Im frusterated, my mom thinks its realted to anxiety which I know it isn't.

Can multiple syrinxes cause dystonia?

Dystonia can also be cause by impairment of the vagus nerve from cervical instability...can cause MANY different symptoms/ affect different body systems. If you haven't found relief, be sure your doc tests for it. Cervical instability can occur due to injury, misalignment from arthritis, weakening of the tissue structures around the cervical vertebrae at any age.

I suffer from this condition..been to 4+ neurologists..taking all med's..helps for a bit..it never stops..am tired of fighting this horrific disease. Also; started as an adult..at same time also have spasmodic torticollis. I'm so, so tired..botox didn't help..nothing does. I'm showing signs of early onset Parkinson's disease..please someone find a cure.

ACUPUNCTURE SHOULD BE A TREATMENT OPTION - GET WITH IT PEOPLE

I start moving my shoulders and arms, plays with my breath nd much more...itlooks like a mission tht I've to complete but it never stops. Sometimes I can't breathe properly. Idk wht to do

I am patient of dystonia for the last six years that is the uncontrollable movements of muscles of lips difficulty in chewing and swallowing of food and even in speaking. I am taking medicine regularly. Two tables of Revocon and two of pessitane but no improvement. Any suggestions Thanks

I am from Assam. I have a 13 years old younger son. Who have been suffering cervical dystonia last 5 years. How could meet with you.

really so depressing . this disease is becoming common but still not cure . even 0 impact of medicine . a person’s life spoil . I am facing this issue for last 6 months . very distracting disease

Also what type of doctor diagnoses dystonia thank you

Is dystonia curable? I have dystonia because of cardiac arrest i had in 2015?

I got cervical dystonia in my 70s when I got diagnosed with C-PTSD. My neurologist feels it is because of my PTSD

Help me! I have dystonic reaction 24/7. I use to always go to the er to get iv benadryl. Now they stopped, because they think I am getting high off it. And I don't get high on it. I need help. Please someone help me. I am suffering. I am not going through withdrawals. I can't believe the doctors think that. It has ruined my life. What do I do? I actually need benadryl iv everyday. I tried oral meds and they don't work. Please someone help me!

👍👍👍👍👍

My 2 brothers have dystonia disease.. .. It started at both age 40years old .. Blinking eyes ,dragging of legs muscles cramps , difficulty of speech.. Involuntary movements of hands.. But still no cure..😢😢😢😢

My Neck And legs start to Stop After Running or Walking to fast

I need to be tested for dystonia trying get me in the hospital trying find a doctor

I have Dystonia

My sister & I have dystonia.

The Wim Hof method works for Dystonia

My child has dystonia and it was after a vaccination.

i came here because my toes are a bit crunched up and i can cramp easily, thinking i may have this... then i watched someone with it.. :|

i hate having dystonia

I used to be very agoraphobic and doctors put me on psychotropic medicines such as Lithium, Risperdol, Depakote, Sinequan, etc., for a phobia! These medicines caused me to have dystonia throughout my body. (Not long after I stopped taking the psychotropics my agoraphobia got 98% better. Go figure!)

Not a such thing as genetics comes from the food you eat 100 percent. And med side effects