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)

(Ultram)
Type
Prescription Drug
How many have tried
6
Tried for
pain (6)
Treatment name(s)

(Tylenol)
Type
Over the Counter Drug
How many have tried
5
Tried for
pain (5)
Treatment name(s)

(BuSpar)
Type
Prescription Drug
How many have tried
5
Tried for
anxious mood (5) depressed mood (2)
1 more
Treatment name(s)

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

(Neurontin)
Type
Prescription Drug
How many have tried
5
Tried for
pain (5)
Treatment name(s)

(Mestinon)
Type
Prescription Drug
How many have tried
5
Tried for
dysautonomia (4) fatigue (3)
Treatment name(s)

(Leg brace)
Type
Equipment
How many have tried
5
Tried for
pain (5) fatigue (1)
Treatment name(s)

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

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

(Nuvigil)
Type
Prescription Drug
How many have tried
3
Tried for
fatigue (3) depressed mood (1)

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 (2 evaluations)
Side effects
nausea cold sweat 1 more
Total evaluations
2
Tried for
pain (6)
Treatment name(s)

(Tylenol)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (5)
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 (5) depressed mood (2)
1 more
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)

(Neurontin)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (5)
Treatment name(s)

(Mestinon)
Perceived effectiveness
for dysautonomia (3 evaluations)
Side effects
motion sickness spaced out 1 more
Total evaluations
3
Tried for
dysautonomia (4) fatigue (3)
Treatment name(s)

(Leg brace)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (5) fatigue (1)
Treatment name(s)

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

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

(Nuvigil)
Perceived effectiveness
for fatigue (1 evaluation)
Side effects
headaches increased anxiety
Total evaluations
1
Tried for
fatigue (3) depressed mood (1)
  • 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 82
30s 99
40s 107
50s 79
60s 47
70+ 8
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 109
20-29 years 50
30-39 years 46
40-49 years 40
50-59 years 15
60-69 years 3
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 43
Female 393

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 288
Not Diagnosed 40

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