I am a 65 y/o female. Since I was a young child, I would jump out of bed with extremely painful calf muscle cramps. I finally have a diagnosis: Dystonia. It has gotten progressively worse to the point where I get painful spasms in most of my muscles, including my diaphragm. My Dystonia is genetic (mother and 1 brother) but my spasms are far more often (daily) and painful than theirs. I get them almost everywhere now, except my neck, arms (although I do get them in my hands, fingers, and thumbs) and very rarely in my back muscles. Most of the spasms I get in my legs are extremely painful; I am talking crying out loud and begging for them to stop as I walk and walk and walk non-stop to help the leg and/or toes and foot spasms from taking over complete control as my spasms will eventually make their way up from my toes, feet, ankles (which turn my feet outward or inward), shins, and the worst of the worse are my thigh muscles; front quads, the back of my thighs, and the most painful of them all - my inner thigh muscles. Sometimes, my thighs will just go into full spasms in a flash. My neurologist has me on muscle relaxers Trihexyphen 8 mg and Baclofen 20 mg AM & PM, Soma 350 mg, Diazepam 10 mg every PM, and Qunol Magnesium Glycinate 420 mg AM and PM. Sometimes, I am able to catch a spasm as it is just beginning, and if I jump up to my feet I am sometimes able to walk them out of my toes, calves and shins, but much less so, my thigh muscles. Through experience, I have learned that if the spasms start in my thighs, I take 350 - 700mg of Soma and cry and walk and cry and walk for the 25 to 30 minutes for the Soma to kick in. About a month ago I woke up with both of my thighs (quads) in full spasms. I could barely get up and was unable to walk. I have never gotten spasms anywhere other than my feet and calves while sleeping. I couldn't even make my way to my Soma supply in my purse or kitchen cabinet. I had to literally punch both of thighs as hard as I could to release the spasms enough to walk to get to my Soma bottle. I took 2 (=700mg) and was able to walk until the Soma took effect. I went back to sleep. In the morning, my thighs looked like I was hit by a truck. HUGE, dark purple bruises all over the front of both of my upper thighs. I was desperate to get to my Soma. I took pics with my phone to show them to my neurologist. I was about 3/4 of my way home from my neurologist's office last week when I felt the beginnings of a thigh spasm coming on at the top of my right thigh. I took my left hand and pressed down on the muscle as hard as I could to try to keep it from progressing until I made it home and then immediately popped a Soma from my purse. Most of my thigh spasms hit me as full-blown spasms and are more painful than any labor pain I've ever had. I wish I could post a pic of my bruised thighs here. I feel sympathy for all sufferers of this disorder!

I was diagnosed with focal dystopia in my left foot in 2016. I’ve been treating it with a vibration massager and all symptoms have completely gone. I’m now walking completely normally with no cramps, contractions or anything. No doctor told me to treat it in this way. I exercise a lot and have been using vibration therapy on sore muscles. I started to apply the device on my foot for 30 seconds at a time and the whole condition seems to have gone away. To me it looks like the brain has reconnected with the foot by becoming more aware of it as a result of the vibrations. I do this twice daily for 30 seconds to 1 minute. The neurologist who diagnosed me in the first place was astonished when he saw me for a routine visit. This may not work for everyone but for me it’s worked wonders.

Walking does not worsen dystonia: it is actually the path to recovery. It may ‘appear’ to worsen the condition due to the appearance of the tremor. A tremor however is essentially the ‘bridge’ to becoming eutonic. A tremor appears post ‘fixed ‘ or spasm phase of dystonia and is the first stage towards recovery . Walking also promotes prefrontal activity and interhemispheric connections due to alternating limb activity. These are both precursors to full recovery by inhibiting tone of the hypertonic ( primitive) pathways . Have you read ‘limitless’ by Dr Farias ?

i got drug induced movement disorder i stopped taking the pills which cuased the problem and i take alpha lipoic acid and magnesium which helps alot and i just started taking valerian root for teh movement disorder my symptoms are 80 percent better

Very nice information

Thank you, Dr. Nick, for providing valuable insights into the complex nature of dystonia and its multifaceted impact on individuals. Your comprehensive explanation of the various types of dystonia, including cervical dystonia, and the diverse range of symptoms highlights the need for a holistic approach to treatment. Addressing both motor and non-motor symptoms, such as pain, fatigue, balance deficits, and psychological aspects, is crucial for improving the overall well-being of those affected by dystonia. Your emphasis on individualized care and the consideration of factors like exercise impact and neurofeedback is appreciated. Keep up the great work in spreading awareness and knowledge about dystonia! 💙 #DystoniaAwareness #NeurologicalWellness #HolisticHealth

I got this after a car crash 3 years ago and wanna share something big. Its interesting that you say stimulating the muscles is bad… I got so desperate when breathing was not just painful but difficult I began using a device designed to restore the curve in your neck alongside high dose marijuana for better muscle control to restore the curve in a straight neck (mine comes out almost 90 degrees from my body) after about 2 months I noticed I could move my head maybe 1mm. I kept working on it and recently the curve in my back actually started to flip back and untwist. Right now my pain is at a relative zero compared to how I was, and it started dropping as soon as my neck got some life in it. first dead then sandpaper muscles on my head and neck which I have zero movement in were rubbed in the direction the bone SHOULD be (this was hard to figure out lol). After a few months the muscle tone got rock hard, finally allowing a tiny bit of movement. Unfortunately my nerves caught fire around this time. For many weeks I had no sensation except fire it was not pleasant. After pushing through the awfulness for 6 months I started seeing very big changes. Started raising out of my contracted posture. Legs started to work better but new issues like balance and visual tracking came up. Pain was so low it was rarely on my mind even tho it’s still killer obviously. Things took a pause for a bit but I took advantage of every day and kept going with it. I started moving much easier and the muscles took on a healthier tone yet and even allowed some movement where I was zero. Once the muscles are moved manually I can get to them with my brain if there’s pot involved so every day Id bring more and more movement to the table. Sadly a lot of neuro symptoms worsened tho. And then one evening… I placed my finger to my neck and and instead of shaking or snap jerking (still an improvement!) the whole thoracic to my skull untwisted big! It felt as tho I’d been shot, except maybe worse. But very fast I realized my nervous system had just turned on… I started to move instead of shake, my chest started opening for air, my diaphragm remembered how to breath and I broke out in a giant sweat as I gobbled down all the air I could get. I felt my whole body reset the control system and when I could I got up to walk. It was similar in intensity to the worst nerve pain moments but everything felt good finally! And man i was moving great! Things really pickup up that was 4 days ago today my spine straightened out further and when it did my legs kicked online, not just feeling! Theres finally very little pain, movement is very good, and i can even hold my hands out in front of me without them shaking and im able to bend over and touch my toes! Its so weird rubbing my muscles back into place has anyone ever heard of someone recovering from this? Im wondering if it might be possible but too difficult for doctors to encourage. The shear pain involved would keep any rational person from overloading their nervous system the way i did. Yet months later I feel great 👍

Great information on dystonia. I have many of the symptoms, but have not had a diagnosis as of yet.

Thank you for your honest, logical, study, and step by step explanation of Dystonia. In my case, Cervical Dystonia. Your video has answered all my questions and will be having brain surgery. This afternoon, I was watching KZfaq videos on Dr. Farias, his client, stretching exercises for dystonia, the physical therapist which all of them left me with more questions but made me realize the solution for me is brain surgery. In God's plan for me, he had me watch all the other videos 1st before yours so I could come to my correct conclusion. Have a Blessed evening.

Hi Dr. Nick, I have Laryngeal Dystonia and it is difficult to figure out the root cause of it. Initially, it started at the same time when I had Subacute Thyroiditis after I gave birth in July, 2017. I went to a well-respected CIRS doctor and later to a Lyme doctor, but neither mold nor Lyme were my root cause. Have you had success treating Focal Dystonia patients with brain exercises like eye tracking and the metronome exercises? I am currently seeing a Chiro Neuro where I live, but I need to start doing the brain rewiring exercises daily. I am wondering what Chiro Neuro therapies you have seen work best for Focal Dystonia. I currently get Botox in my vocal cords every 3-4 months, but I hope to need it less and less.

My daughter problem in neck

I was diagnosed with Oromandibular dystonia in 2020. 6 meds failed and 5 botox injections. The 6th one has minimal benefit. Please help. Happy to chat offline

I have generalized Dystoina and I get IVIG treatments to stop tremors and muscle contractions. Otherwise I can't keep my balance walking, hold a fork, wear shoes, once my arm went on my head and it wouldn't come down for the whole day. It's a horrible disorder and hard to live with. I can't drive because I can't trust my own body as to when my arms, legs, neck will contract.

Hello DrNick I have writters cramp How to deal with it I feel very depressed Should I force my muscles to write or what should i do ?? please suggest

I have chronic dystonia in both feet accompanying Parkinson disease how can you suggest I managed this please?

Doctors don't mention 1) The orthopedic aspect: it might be a cause, like osteoperosis that could be a cause for spasms or it could be a result of odd and unsymetrical positions and postures. 2) There is the interpersonal aspect: you look wierd and can't do things like normal people so you could look retarded or emotionally disturbed, especially if the face is compromised, like Meige Syndrome, with an odd frown and talking with face movements that shouldn't be and people can interpret your expressions wrong and scream at you. 3) Coping with doctors. Most doctors don't know what is wrong with you. Some just misdiagnose and others could get frustrated because they don't understand what your problem is so they send you to a psychiatrist, who will tell you to take some sort of a drug, depending on what your expression looks like to them, or what they are feeling themselvse, just then. Often they diagnose something that is a result of feelings you got because your life, as it once was, will never be again. Then you take some drug that might be wrong for you and it gives you more side effects and makes yoy feel like your life is over, when all you needed was support for an acute psychological phase to cope with a new life and building new ways to think and new occupations that don't demand the same abilities. Most practioners don't have time and patients for this phase and patients need to treat themselves and manage their own cases, which not everyone is able to do. And not everyone has someone to support them, so they could go mad. Where I live, there is not a single place just for dystonia.

I have done Botox shots and klonopin for 7 years. It’s no longer working I tried baclofen and now I’ve been put on artane 1mg. Mine is focused on left side of my neck my head moves to the left involuntarily.

I am from India pls tell us best treatment

Don’t know why they do these unhelpful talks 🙄no treatment except Botox!!!!! Which is a neurotoxin…. 🤔

What is the Best Treatment for Dystonia? dude, you have no answers. Why not say, I have no idea what is the best treatment for dystonia. fraud

Dr. Do you have any focal dystonia videos?