deacon mark

Anyone here have dystonia? I have Runner’s dystonia which is rare I understand some could have it on bike. If you don’t know what it is then you probably don’t have it. Mine effects running fast or continuous running but i can still get around. Thank goodness on bike no problems can ride to beat the band. I just wondered if anyone does?

Hondo Gravel

What is dystonia?

canklecat

My mom had it. Primarily her right hand and arm. As she got older it occasionally affected her face and mouth, with some trouble enunciating. Some neurologists called it "Parkinsonian tremors" or "essential tremors," although some definitions distinguish between these. Both terms confused mom and she was convinced she had a diagnosis of Parkinson's, which her older half-brother did develop in his 80s.

The doctors never could agree on a diagnosis for mom's conditions. She had bipolar disorder and for years took various forms of valproic acid (Depakote, among others), which is often prescribed to control seizures, bipolar disorder and to help prevent migraines or lessen the severity and frequency. A side effect is a risk of tremors.

Various neuro docs tried other meds, had her discontinue valproic acid for a couple of months, but nothing completely prevented the tremors. Some meds made her condition drastically worse, with hallucinations, memory loss and problems that took weeks to resolve. It may have been related to her mini-strokes and whatever form of dementia finally overwhelmed her. The doctors couldn't even agree on what form of dementia she had. The death certificate said Alzheimer's but her symptoms also fit frontotemporal dementia, Lewy Body and others. Without an autopsy and brain study they're just guessing.

Many folks with dystonia don't necessarily have any other serious illness and live long, otherwise normal lives.

Frankly, based on closely watching my mom's condition over a decade as her caregiver, I'd avoid most neurological meds and consult with more than one neurologist. I've never encountered a medical specialty that's more vague and inconsistent in diagnoses and treatments. That includes my own consults for chronic headaches. And most prescription meds for neurological conditions carry side effects as bad as the condition they're intended to treat. I've worked in health care for years, am a strong supporter of science based medicine, very skeptical of alternative medicine, and rarely feel skeptical about entire professional fields. But neurology has got to be one of the most frustrating and imprecise fields for any patient or family of a patient can experience.

MoAlpha

Dystonia is a general term describing abnormal, involuntary, postures, cramps, or slow movements generated by brain mechanisms. The term covers phenomena produced by a variety of disorders, including hereditory neurological diseases, cerebral palsy, and Parkinson disease. The most common form of dystonia is usually called "focal dystonia" and occurs in otherwise healthy people who use groups of muscles in very specific ways for long periods. It manifests as cramping or abnormal posture in precisely the heavily used muscle group and, interestingly, patients can use the same muscles in other ways without problems. Musicians (Leon Fleisher), typists, radio announcers (Dianne Rehm), and, yes, runners, among others can be affected. The most effective treatment is botulinum toxin injections, which, in the hands of an expert, can usually produce significant improvement lasting about three months.

canklecat

Thanks, doc. I may discuss the botulinum therapy with my doctors. I have frequent spasms in my right trap, and it constantly feels knotted up. Occasionally it's so bad it'll lead to headaches.

Pretty bad last night and today, after a couple of fairly hard workout rides back to back Sunday-Monday. I'm right handed and it hinders coordination even for mundane tasks. I have to be extra careful washing dishes or I'll smack a glass agains the sink or drop it, no matter how hard I concentrate on moving deliberately. And my typos are ridiculous now. (I had to retype these last two sentences a few times due to right hand typos.)

But it's nowhere near what my mom experienced. Her right arm would often slowly twist back and forth for hours. Sometimes it would be more erratic tremors, mostly her right hand. Sometimes it would settle a bit if she concentrated on it, but as soon as she did something else it would return. Very frustrating for her because it interfered with painting, the one hobby she really enjoyed. But she was very demanding and didn't like the imprecise and abstract effects produced by erratic brush control. Personally I thought those paintings were interesting but she didn't think so.

deacon mark

Well for me I can go from running about 9 minute mile pace smooth and even to turning a corner and almost having to keep from falling forward. It is like my legs just will not respond. On the bike it is different and I can simply pedal and go. I sometimes feel like standing of pedal is a bit of an issue in that it requires me to get a rhythm of sorts but that I think is normal. On the bike I can start uphill climb by gear up and then standing to pedal no issues. I can time things fine, but running I just get all out of wack. It is crazy because I have managed 38 minute 10k in my prime.

Well that was a long time ago.

BobbyG

I knew a guy who had focused dystonia in is facial muscles. Botox injections would help for a few days. Also just applying pressure with fingers would usually help somewhat in the very short term, like half an hour max.

MoAlpha

Yeah, the problem is not with the muscles, nerves, or anything except the brain circuit that generates the specific motor program for the activity. Everything works fine when being used for something else. Super interesting disorder.

Hondo Gravel

Thanks for explaining what it is.