Dear members, Although currently there is no explanation to what triggers dystonia in adults, common knowledge is that it is some kind of stress - physiological or emotional - that causes changes in CNS and imbalance of neurotransmitters.
Can you remember any stress, infection, traumas, dietary changes, surgeries, over-exercising, etc, or anything else you can think of, that happened several weeks or even months prior to the onset of the first symptoms? Thank you for sharing.
I really believe that I've fought Dystonia because of a disease process with my gall bladder. (I'm no doctor & this is only a theory...)
It took doctors 3 years to find my gall bladder functioned at only 8%, because imaging was looking for stones. Never any stones.
I knew nothing of Dystonia, but my mind processed my neck pain/ rigidity as "referred pain." When my physical internal pain was not managed correctly, I was usually told muscular, or fibromyalgia, or the like. Then physical therapy would be ordered. Then more tightening and more pain. Then a Rx. Followed by odd side effects... Everything spiraling... So today, I'm responding well with Carbidopa-levodopa, and I treating my cervical Dystonia in this manor...
May I ask you what doses of Levodopa you are using? Also, what other medication have you tried before, if any? Thank you
See my new post about the C4-5.
I'm experimenting coming off carbidopa-levadopa 1tab, 3X's a day...
I had tried a topical cream my neurologist formulated with painkillers to be applied on my neck. That didn't work because of the perfuse sweating. I ended up with a rash/reaction the pharmacist thought because of my enlarged pores were taking too much in...(?) and 2 botox treatments. Oh, and various, ODD physical therapy for my neck and jaw (TMJ.)
Thank you. Are you coming off it because of side effects?
Weird. New movement specialist believed not dystonia, so took me off carbidopa-levadopa. pain in neck & jaw did NOT return. BUT now it's my feet, hips and low back. Whenever I sleep any length of time, I'm locked in place. NO LIE. Pain is REALLY off the charts to simply straighten my legs in the morning to get out of bed. DON'T KNOW ANYTHING ANYMORE!
For me I had a severe migraine (first one in decades) a month before I started developing the symptoms of dystonia. Also at that time I had been thinking about my neck for a while, I had developed a grinding sound when I turned my head (due to bad posture I think) and had I spent quite a lot of time worrying about it.
Its quite a coincidence that I had been think about holding my head straight and then I go and develop cervical dystonia. So I believe it was the migraine or the worrying about my head posture or both that triggered the dystonia.
mine resulted from years of excessive exercise
Could you elaborate a bit please? I.e What type of exercises, etc?
i was an excessive runner/exercise nut my whole life ... i developed focal dystonia of my left leg and can barely walk now
Thank you for sharing. I read that 1 in 300 Writers and musicians develop hand dystonia by overworking muscles, which is changing brain maps in individuals with genetic predisposition to dystonia. I was never out of the gym myself...
I was also a runner. I don't think it was excessive, but I ran 3-5 miles every day for about 25 years. I suddenly starting having trouble controlling my right foot; it would slap the ground when I ran, kind of like someone who had had a stroke. It quickly became impossible to run. Then I noticed symptoms when I was just walking. My foot would twist and want to drag when I took each step. As long as I was standing still or sitting I looked normal, but when I walked it was obvious that something was wrong. I had all kinds of tests from all kinds of doctors. After two years of searching, my PCP finally referred me to an East Indian neurologist and he took one look at me walking and said I had dystonia. He told me it was incurable and there was nothing he could do. He would not even see me again. I had never heard of dystonia, and surprisingly enough, neither had my PCP. So I took to the internet. I found a movement disorder specialist at VCU in Richmond, VA, which is about 3 hours from where I lived at the time. I went to see him and was very impressed. He actually does research on dystonia and is very knowledgeable. He diagnosed me with what he called focal runner's dystonia. He said he had another patient who was a marathon runner and developed the same kind of adult on-set focal dystonia. We tried all the standard medications and nothing helped. I tried the Botox, but that did not help either. The only thing that helped was Klonopin. At first I though it was a miracle. I was walking normally for about 3 months. Then I found that I needed to increase the dosage in order to retain the benefit. There came a point where the side effects outweighed the benefits, as I began to have blackouts and lose time. I was walking around in a fog. So I had to dial back the dosage to a small amount that I could tolerate, but I was back where I started with my foot. He suggested DBS, but could not guarantee that I would be much better. I met with the neurosurgeon and she said there was a 60-70% chance that I would get a 60-70% improvement in my symptoms. I decided the odds were not good enough for that type of risk. So I live with the dystonia. Fortunately, it is not painful when I'm at rest. I can walk, albeit slowly and with a cane sometimes. Its weird, but I can climb stairs with no problem, walk backwards and even dance, but walking forward is problematic. It has affected other joints since my gait is uneven and it pulls on my back and hip muscles. I've had one hip replaced already. In spite of all this, I work out, drive, and live pretty normally. I just tell myself that it could be a lot worse.
what you describe is sort of similar to what i have ... the benzos helped me too but i stopped because i did not want to become dependent on them ... my entire left leg spasms and freezes up like a piece of wood when i try and walk ... it is difficult for me to clear my foot off the ground ... i can't walk far now and use crutches to walk short distances but even that is hard because the leg freezes up and hyper-extends ... i'm surprised they said DBS might help you ... did anyone ever mention the word "functional dystonia" with you ... ? i believe your brain hardware is fine but the software is messed up like me ... it's a brain signaling problem whenever you try and initiate movement ... i believe that's what i have
Definitely caused by taking Fluoxetine for head injury/stroke and Methadone for severe pain from head to toe injuries ,took BOTH for over 20 years.
I developed first symptoms when I was 16, in my hand, then my leg and neck, which became generalised over 3 years. I was a musician, training for a career in music when it struck me. I completed my music degree (with a lot of support), trained as a teacher and that is now my career, teaching music, even though my playing is minimal due to spasms. I’ve found ways to adapt my teaching - I had to! - and I think I’m still a good teacher.
When you say generalised, what muscles are involved in your case? Also, have you had any luck with medication at all? Thank you.
Hi Alec. Spasms mainly affect my neck, right arm/hand and right foot but I also have spasms in my torso when I get tired. It makes me pull to the right and bump into walls etc. I was tried on several meds in the 1980s, including benzhexol and tetrabenazine but the side effects were intolerable to me. I was on orphenadrine for about 6 years. I don’t take any meds now, just Botox injections.
I am glad Botox works for you! You are among lucky 70% . Do they inject abdominal muscles to relax the torso?
No, at the moment I only have Botox in my neck. They’re going to look at possibly trialing injections in my leg in the next few months. I don’t think they’ll treat anything else, my spasms are too widespread. The consultant said he’d only try to treat my hand if I was in danger of losing my job due to the Dystonia.
Yes I can respond with clear specifics....extreme stress relating to life threatening illness with person closest to me. I internalised over many months not wanting to show impact on me and add to the situation. Face muscles and neck muscles tense continually and then the bouncing head on pillow started.
Lack of recognition or diagnosis for so long added to the problem. Now with cervical Dystonia with muscles taut continually gives combination of pain and exhaustion....
Hope this is useful
I started with my mouth dystonia a few months after retiring and a neuro specialist thought it may be connected. However I have always other symptoms such as Dyspraxia since very young . The previous posts about over use of muscles is interesting because I had tension problems that started over 20 yrs before I retired and I had to give up playing a brass instrument
Many emotional stress factors along with long spells of studying and teaching. Developed severe migraines and vertigo firstly and noticed the severe neck pain and head tremors developing as migraines eased. Left with chronic neck pain and head and left arm tremors and intermittant balance problems.
My initial indicators began with a dreadful headache around the centre of my head. Pain like never before. I'd been doing a lot of overtime at work...early shifts sometimes 10 hours a day with little or no break, for 6 days a week. I reduced the overtime and had a couple of weeks off. Over the next few years the dystonia slowly took hold in my neck,hands and shoulders. Eventually had 6 months off work whilst going through scans and tests. I was told I would have to change my job plus begin botox treatment. My employer was fair though eventually I changed career to become a support worker. All these years later I can manage the dystonia though am aware of my limits (say no to overtime, have proper breaks during work hours, take regular annual leave and if I need time off on sick leave then take it, also have acupuncture every month....look after yourself).
The reason my diagnosis (as well as others) is so difficult is because of overlapping stories. I have my "internal story" & my "external story."
Follow the story of my gallbladder for example. Odd & difficult to diagnose. There were no stones, and because imaging is looking for stones, it took 2+ years of me begging to find the source of pain. Gallbladder was diseased and functioning at only 8%.
Just 3 years ago, black stool landed me in the ER. GI doc discovered severe reactive gastropathy. "a chemical burn" in the stomach lining. I was to stop all supplementing. I was told it was something I ingested, so I blamed turmeric with black pepper extract, Nexium & prednisone combination. Nexium and turmeric can not be taken together. Black pepper extract NEEDS TO BE REMOVED FROM SUPPLEMENTS! The prednisone was because of sudden hearing loss. ???
ALL AT THE SAME TIME IS MY "EXTERNAL STORY." Severe neck and jaw pain AND NO ONE WOULD IMAGE MY NECK!
NO ONE! Doctor after doctor, specialist after specialist...
A recent MRI revealed "broad-based disk bulging at C4-5 results contact with slight deformity of the ventral cord."
Well, would you believe it can mimic Parkinson's ?! I will have to let you know as the future is yet to be written. I see a neurosurgeon Wed.
I thank God that this neurosurgeon (my 2nd opinion) corrected my fiend's disk with surgery a few years ago. One disk up, but same scenario & symptoms. Even his "carpal tunnel" went away!
So now I'm thinking...Which came first? Could C4-5 interfere with bile/ sphincter as much as it is my heart, my walking, and pelvic floor tightness? (I can't even begin to tell you what happens when you hold urine!)
Blood pressure spikes is an odd one to diagnose...
Neurosurgeon simply stated no surgery needed. There is plenty of spinal fluid surrounding my spinal cord.
I was speachless.
Recently diagnosed Dystonia 
Help with Cervical Dystonia please