Dysautonomia

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By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is dysautonomia?

Dysautonomia is a broad term that describes any disease or malfunction of the autonomic nervous system. It can be local, as in reflex sympathetic dystrophy, or generalized, as in pure autonomic failure. It can be acute and reversible, as in Guillain-Barre syndrome, or chronic and progressive.

Common symptoms reported by people with dysautonomia

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.
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Treatments taken by people with dysautonomia

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

(Florinef)
Type
Prescription Drug
How many have tried
5
Tried for
dysautonomia (5)
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
5
Tried for
fatigue (4) pain (2)
Treatment name(s)

(Mestinon)
Type
Prescription Drug
How many have tried
5
Tried for
dysautonomia (5) fatigue (3)
Treatment name(s)

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

(BuSpar)
Type
Prescription Drug
How many have tried
4
Tried for
anxious mood (4) depressed mood (1)
1 more
Treatment name(s)

(Jobst Compression Stockings)
Type
Equipment
How many have tried
4
Tried for
dysautonomia (4)
Treatment name(s)

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

(Neurontin)
Type
Prescription Drug
How many have tried
4
Tried for
pain (4) anxious mood (1)
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
4
Tried for
pain (4)
Treatment name(s)

(Knee brace)
Type
Equipment
How many have tried
4
Tried for
pain (4)

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

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

(Florinef)
Perceived effectiveness
for dysautonomia (2 evaluations)
Side effects
dry mouth excessive amounts of urine (polyuria) 1 more
Total evaluations
2
Tried for
dysautonomia (5)
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
fatigue (4) pain (2)
Treatment name(s)

(Mestinon)
Perceived effectiveness
for dysautonomia (4 evaluations)
Side effects
anxious mood headaches 3 more
Total evaluations
4
Tried for
dysautonomia (5) fatigue (3)
Treatment name(s)

(Nuvigil)
Perceived effectiveness
for fatigue (3 evaluations)
Side effects
headaches increased anxiety 1 more
Total evaluations
3
Tried for
fatigue (4)
Treatment name(s)

(BuSpar)
Perceived effectiveness
for anxious mood (5 evaluations)
Side effects
headaches increased anxiety 2 more
Total evaluations
5
Tried for
anxious mood (4) depressed mood (1)
1 more
Treatment name(s)

(Jobst Compression Stockings)
Perceived effectiveness
for dysautonomia (1 evaluation)
Side effects
muscle soreness numbness
Total evaluations
1
Tried for
dysautonomia (4)
Treatment name(s)

(Flexeril)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (4) depressed mood (1)
Treatment name(s)

(Neurontin)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (4) anxious mood (1)
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (2 evaluations)
Side effects
drowsiness
Total evaluations
2
Tried for
pain (4)
Treatment name(s)

(Knee brace)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (4)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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


Age
Age Proportion # of patients
<20 13
20s 83
30s 105
40s 120
50s 86
60s 56
70+ 10
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 116
20-29 years 52
30-39 years 49
40-49 years 42
50-59 years 16
60-69 years 4
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 45
Female 430

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 303
Not Diagnosed 42

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