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, insomnia, fatigue, and pain) 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)

(Ultram)
Type
Prescription Drug
How many have tried
7
Tried for
Pain (7)
Treatment name(s)

(Tylenol)
Type
Over the Counter Drug
How many have tried
4
Tried for
Pain (4)
Treatment name(s)

(BuSpar)
Type
Prescription Drug
How many have tried
4
Tried for
Anxious mood (4) Depressed mood (1)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
4
Tried for
Pain (3) Insomnia (1)
Treatment name(s)

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

(Elavil)
Type
Prescription Drug
How many have tried
3
Tried for
Insomnia (2) Pain (1)
Treatment name(s)

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

(Lyrica)
Type
Prescription Drug
How many have tried
3
Tried for
Pain (3)
Treatment name(s)

(Mestinon)
Type
Prescription Drug
How many have tried
3
Tried for
dysautonomia (3) Fatigue (1)
Treatment name(s)

(Leg brace)
Type
Equipment
How many have tried
3
Tried for
Pain (3)

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)

(Ultram)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Nausea
Total evaluations
1
Tried for
Pain (7)
Treatment name(s)

(Tylenol)
Perceived effectiveness
for Pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
Pain (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)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Increased appetite
Total evaluations
2
Tried for
Pain (3) Insomnia (1)
Treatment name(s)

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

(Elavil)
Perceived effectiveness
for Insomnia (2 evaluations)
Side effects
Grogginess inappropriate sinus tachycardia 1 more
Total evaluations
3
Tried for
Insomnia (2) Pain (1)
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 (3)
Treatment name(s)

(Lyrica)
Perceived effectiveness
for Pain (5 evaluations)
Side effects
Blurry vision Dizziness with hypotension upon standing 1 more
Total evaluations
5
Tried for
Pain (3)
Treatment name(s)

(Mestinon)
Perceived effectiveness
for dysautonomia (2 evaluations)
Side effects
Total evaluations
2
Tried for
dysautonomia (3) Fatigue (1)
Treatment name(s)

(Leg brace)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
Pain (3)
  • 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 11
20s 70
30s 81
40s 89
50s 73
60s 36
70+ 7
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 92
20-29 years 46
30-39 years 46
40-49 years 37
50-59 years 15
60-69 years 3
70+ years 1

Sex

Distribution of sex

90% Female
10% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 250
Not Diagnosed 38

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