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, insomnia, fatigue, and pain) 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)
Treatment name(s)

(Home Physical Therapy)
Type
Physical Therapy
How many have tried
13
Tried for
dystonia (13) Fatigue (1)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
10
Tried for
dystonia (10) Anxious mood (2)
Treatment name(s)

(Sinemet)
Type
Prescription Drug
How many have tried
9
Tried for
dystonia (9)
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
6
Tried for
dystonia (6)
Treatment name(s)

(Valium)
Type
Prescription Drug
How many have tried
5
Tried for
dystonia (3) Anxious mood (2)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
5
Tried for
Pain (3) dystonia (2)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
4
Tried for
Pain (4)
Treatment name(s)

(Ambien)
Type
Prescription Drug
How many have tried
4
Tried for
Insomnia (4)
Treatment name(s)

(BuTrans Transdermal Patch)
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) Difficulty chewing 9 more
Total evaluations
18
Tried for
dystonia (22)
Treatment name(s)

(Home Physical Therapy)
Perceived effectiveness
for dystonia (5 evaluations)
Side effects
Soreness
Total evaluations
8
Tried for
dystonia (13) Fatigue (1)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for dystonia (2 evaluations)
Side effects
Drowsiness Excessive daytime sleepiness (somnolence) 1 more
Total evaluations
5
Tried for
dystonia (10) Anxious mood (2)
Treatment name(s)

(Sinemet)
Perceived effectiveness
for dystonia (4 evaluations)
Side effects
Confusion Dizziness 5 more
Total evaluations
7
Tried for
dystonia (9)
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for dystonia (4 evaluations)
Side effects
Excessive daytime sleepiness (somnolence) Nausea 1 more
Total evaluations
4
Tried for
dystonia (6)
Treatment name(s)

(Valium)
Perceived effectiveness
No evaluations
Side effects
Total evaluations
2
Tried for
dystonia (3) Anxious mood (2)
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 (3) dystonia (2)
Treatment name(s)

(Ultram)
Perceived effectiveness
for Pain (2 evaluations)
Side effects
Dizzy spells
Total evaluations
2
Tried for
Pain (4)
Treatment name(s)

(Ambien)
Perceived effectiveness
for Insomnia (2 evaluations)
Side effects
sleep walking (somnambulism)
Total evaluations
2
Tried for
Insomnia (4)
Treatment name(s)

(BuTrans Transdermal Patch)
Perceived effectiveness
for Pain (2 evaluations)
Side effects
Butterfly (malar) rash Constipation 1 more
Total evaluations
3
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 65
40s 76
50s 112
60s 109
70+ 34
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 51
20-29 years 28
30-39 years 41
40-49 years 44
50-59 years 35
60-69 years 13
70+ years 4

Sex

Distribution of sex

73% Female
27% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 227
Not Diagnosed 27

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