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
8
Tried for
dystonia (8)
Treatment name(s)

(Sinemet)
Type
Prescription Drug
How many have tried
4
Tried for
dystonia (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
depressed mood (2) pain (1)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
3
Tried for
dystonia (3) anxious mood (2)
Treatment name(s)

(Outpatient PT)
Type
Physical Therapy
How many have tried
3
Tried for
dystonia (3)
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
2
Tried for
dystonia (1) pain (1)
Treatment name(s)

(Flexeril)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
2
Tried for
depressed mood (2)
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
2
Tried for
dystonia (1) pain (1)

Data from patients with dystonia, who reported starting treatments within the last 5 years.
Last updated:

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 (7 evaluations)
Side effects
fatigue headaches 6 more
Total evaluations
8
Tried for
dystonia (8)
Treatment name(s)

(Sinemet)
Perceived effectiveness
for dystonia (1 evaluation)
Side effects
nausea
Total evaluations
1
Tried for
dystonia (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 (3 evaluations)
Side effects
drowsiness fatigue
Total evaluations
5
Tried for
depressed mood (2) pain (1)
Treatment name(s)

(Klonopin)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
dystonia (3) anxious mood (2)
Treatment name(s)

(Outpatient PT)
Perceived effectiveness
for dystonia (1 evaluation)
Side effects
weakness in leg(s)
Total evaluations
1
Tried for
dystonia (3)
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for dystonia (1 evaluation)
Side effects
nausea and vomiting sleepiness
Total evaluations
3
Tried for
dystonia (1) pain (1)
Treatment name(s)

(Flexeril)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (2)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
depressed mood (2)
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
No evaluations
Side effects
Total evaluations
2
Tried for
dystonia (1) pain (1)
  • 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.
Last updated:

Who has dystonia on PatientsLikeMe?

  • 0 new patients joined this month
  • 222 say dystonia is their primary condition

Age
Age Proportion # of patients
<20 6
20s 30
30s 67
40s 101
50s 129
60s 148
70+ 68
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 52
20-29 years 30
30-39 years 43
40-49 years 48
50-59 years 36
60-69 years 14
70+ years 5

Distribution of sex

Sex
Sex Proportion # of patients
Male 137
Female 413

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 253
Not Diagnosed 28

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