Dystonia

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What is dystonia?

Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal posture due to disordered tonicity of muscles. Sustained muscle contraction (dystonia) may be caused by a number of conditions.

Common symptoms reported by people with dystonia

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
Last updated:

Treatments taken by people with dystonia

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Botox)
Type
Prescription Drug
How many have tried
22
Tried for
dystonia (22) pain (1)
Treatment name(s)

(Home Physical Therapy)
Type
Physical Therapy
How many have tried
9
Tried for
dystonia (9) fatigue (1)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
6
Tried for
dystonia (6) anxious mood (2)
Treatment name(s)

(Sinemet)
Type
Prescription Drug
How many have tried
4
Tried for
dystonia (4)
Treatment name(s)

(Valium)
Type
Prescription Drug
How many have tried
4
Tried for
anxious mood (2) dystonia (2)
Treatment name(s)

(Ritalin)
Type
Prescription Drug
How many have tried
4
Tried for
fatigue (4)
Treatment name(s)

(BuTrans patch)
Type
Prescription Drug
How many have tried
3
Tried for
pain (3)
Treatment name(s)

(Celexa)
Type
Prescription Drug
How many have tried
3
Tried for
anxious mood (1) depressed mood (1)
1 more
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
3
Tried for
pain (2) dystonia (1)
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
3
Tried for
pain (3)

Data from patients with dystonia, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with dystonia

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Botox)
Perceived effectiveness
for dystonia (17 evaluations)
Side effects
swallowing difficulty (dysphagia) fatigue 9 more
Total evaluations
19
Tried for
dystonia (22) pain (1)
Treatment name(s)

(Home Physical Therapy)
Perceived effectiveness
for dystonia (5 evaluations)
Side effects
soreness
Total evaluations
8
Tried for
dystonia (9) fatigue (1)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for dystonia (1 evaluation)
Side effects
excessive daytime sleepiness (somnolence) legs shaking
Total evaluations
2
Tried for
dystonia (6) anxious mood (2)
Treatment name(s)

(Sinemet)
Perceived effectiveness
No evaluations
Side effects
dystonia
Total evaluations
2
Tried for
dystonia (4)
Treatment name(s)

(Valium)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
anxious mood (2) dystonia (2)
Treatment name(s)

(Ritalin)
Perceived effectiveness
for fatigue (4 evaluations)
Side effects
jaw pain jittery feeling 1 more
Total evaluations
4
Tried for
fatigue (4)
Treatment name(s)

(BuTrans patch)
Perceived effectiveness
for pain (6 evaluations)
Side effects
allergic reaction to patch adhesive butterfly (malar) rash
Total evaluations
6
Tried for
pain (3)
Treatment name(s)

(Celexa)
Perceived effectiveness
for depressed mood (2 evaluations)
Side effects
drowsiness fatigue
Total evaluations
4
Tried for
anxious mood (1) depressed mood (1)
1 more
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (1 evaluation)
Side effects
dizziness/walking like I'm drunk vertigo 1 more
Total evaluations
1
Tried for
pain (2) dystonia (1)
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (4 evaluations)
Side effects
insomnia
Total evaluations
4
Tried for
pain (3)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with dystonia, who reported starting treatments within the last 5 years.
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Who has dystonia on PatientsLikeMe?


Age
Age Proportion # of patients
<20 7
20s 28
30s 71
40s 85
50s 125
60s 116
70+ 41
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 52
20-29 years 30
30-39 years 41
40-49 years 47
50-59 years 35
60-69 years 14
70+ years 4

Distribution of sex

Sex
Sex Proportion # of patients
Male 122
Female 351

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 239
Not Diagnosed 29

These charts show data from dystonia patients who have completed their condition history
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