Patient Comments: Dystonia - Symptoms

What were your symptoms of dystonia?

Comment from: LivingwithDystonia, 45-54 Male (Patient) Published: January 30

I was first affected with what I now know as right-sided segmental dystonia, around the year 2000. I have had a dystonic reaction to a nausea medicine once before. But this was totally different. On this night I was eating dinner, I had terrible back pain from an injury and I went upstairs to lay down. All of a sudden I started having spasms. I also balled up into a fetal position. My right eye was closed, and my head turned to the right side. My mouth started opening and closing and my right arm locked up. And eventually my mouth clamped shut. I went to the hospital by ambulance that night, and about 15 other times that summer. I have seen numerous neurologists, movement disorder specialist, and other doctors. The foremost expert said the only thing I could do was to have a deep brain stimulator implanted. They could not guarantee that this would work. So I have dystonia an average of four times per week and have had for about 13 years now. My dystonia is brought on by pain and associated stress. When it is real bad it is relieved by intravenous Benadryl and Ativan or Valium. I have built up such a tolerance to these medications that it can take hundred milligrams IV Benadryl pain medicine and Ativan to try and control it. I will speak in more detail at a later date about how my dystonia affects me.

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Comment from: faithand strength, 65-74 Female (Patient) Published: March 20

It started with a stroke in 1989, I was wheel chair bound, paralyzed part of the time for hours. Then seizures started. I had them for 8 years constantly. The dystonia came on with gradual tremors in arms and hands. I had freezing of my feet often and always in steps. My head pulled to one side always and my one foot twisted if resting. Then both feet went numb and I walked on my ankles; not humanly possible, I thought. Nine neurologists said it was mental, the 10th told me it was dystonia. He gently turned my hand around 3 times and my hand spasmed up outstretched. Years later a doctor turned a foot and the other turned the same by itself; same with my hands. I fight depression and constant pain. I take over 200 over the counter pain pills a month. My whole body spasms. My hips are giving out they are misaligned, always one at least. I have an electric wheel chair, but hate to give in! I had 13 injections into my spasmed neck. Days later I could lift it off my shoulder. I am 66 years old.

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Comment from: chopin, 55-64 Female (Patient) Published: November 21

I am 61 and was diagnosed with acute torsion dystonia in 2001. I had always walked with a slight limp due to the effects of having encephalitis as a baby. But in 1997 I started falling down. I went to several doctors and was finally sent to a neurologist. Artane was prescribed but only caused me to lose weight and my concentration. I no longer take it and walk with a walker or hanging on to someone. Physical therapy has helped me this past summer as well as riding a stationary bike. I still have to take muscle relaxers or my left leg and foot will contract without it and it's very painful.

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Comment from: Taydens Momma, 7-12 (Caregiver) Published: November 06

My son has cerebral palsy and acquired dystonia (secondary dystonia). He has been getting worse the older he gets. He can't stand, talk or sit up anymore. He is so crippled up due to the dystonia and is in a great deal of pain. It has gotten so bad my son can hardly eat anymore and has had to have a feeding tube placed. My son has tried several medications and has had over 10 surgeries and nothing seems to help. Mentally he is aware of what is going on by the way.

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Comment from: Nan, 55-64 Female (Patient) Published: October 15

I am 58 years old female, I and have had cervical dystonia for around 30 to 40 years, until around 7 years ago it became generalized. Medication and injections do help, but I am recently in a storm episode which has been a challenge. My left foot is turning inward, right is trying to do the same thing and the pain in my lower back, buttocks, legs and feet are intense. I have burning and stinging sensation and pain from my waist down and from both shoulder to my fingertips. This has been constant for over 5 years, but there is no nerve damage. My 33 year old son has started showing symptoms 2 to 3 years ago and he has progressed far faster than I did. He has gone from cervical to severe generalized in just 1 year which is causing a total disruption of his ability to work.

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Comment from: Kay, 45-54 Female (Patient) Published: August 21

We live in a woodsy area in the mid-south, so we have to really be careful, but sometimes the chiggers get us! We use Campho-Phenique, it is pricey at USD 3.95 for a little green bottle, but soak a cotton ball with it, and apply regularly. Resist the urge to scratch!

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