Idiopathic hypersomnia

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What is idiopathic hypersomnia?

Idiopathic Hypersomnia, also known as major somnolence disorder, is a sleep disorder characterized by excessive amounts of sleepiness for which there is no identifiable cause.

Common symptoms reported by people with idiopathic hypersomnia

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 idiopathic hypersomnia

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

(Provigil)
Type
Prescription Drug
How many have tried
20
Tried for
idiopathic hypersomnia (20) Fatigue (3)
Treatment name(s)

(Ritalin)
Type
Prescription Drug
How many have tried
12
Tried for
idiopathic hypersomnia (10) Fatigue (5)
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
10
Tried for
Fatigue (6) idiopathic hypersomnia (5)
Treatment name(s)

(Nuvigil)
Type
Prescription Drug
How many have tried
8
Tried for
idiopathic hypersomnia (6) Fatigue (2)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
5
Tried for
Depressed mood (4) Pain (1)
Treatment name(s)

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

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

(Neurontin)
Type
Prescription Drug
How many have tried
3
Tried for
Pain (2) Anxious mood (1)
Treatment name(s)

(Vyvanse)
Type
Prescription Drug
How many have tried
3
Tried for
Fatigue (2) idiopathic hypersomnia (1)
Treatment name(s)

(Wellbutrin XL)
Type
Prescription Drug
How many have tried
2
Tried for
Depressed mood (2)

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

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

(Provigil)
Perceived effectiveness
for idiopathic hypersomnia (10 evaluations)
Side effects
Anxious mood Back pain 19 more
Total evaluations
13
Tried for
idiopathic hypersomnia (20) Fatigue (3)
Treatment name(s)

(Ritalin)
Perceived effectiveness
for idiopathic hypersomnia (4 evaluations)
Side effects
Loss of appetite Antsy 3 more
Total evaluations
6
Tried for
idiopathic hypersomnia (10) Fatigue (5)
Treatment name(s)

(Adderall)
Perceived effectiveness
for Fatigue (6 evaluations)
Side effects
Shakiness Anxious mood 10 more
Total evaluations
10
Tried for
Fatigue (6) idiopathic hypersomnia (5)
Treatment name(s)

(Nuvigil)
Perceived effectiveness
for idiopathic hypersomnia (7 evaluations)
Side effects
Chronic headaches tension headache 1 more
Total evaluations
12
Tried for
idiopathic hypersomnia (6) Fatigue (2)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for Depressed mood (2 evaluations)
Side effects
Total evaluations
2
Tried for
Depressed mood (4) Pain (1)
Treatment name(s)

(Vistaril)
Perceived effectiveness
for Anxious mood (1 evaluation)
Side effects
Nausea
Total evaluations
1
Tried for
Anxious mood (4)
Treatment name(s)

(Voltaren Gel)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
Pain (3)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for Pain (2 evaluations)
Side effects
hypomania
Total evaluations
4
Tried for
Pain (2) Anxious mood (1)
Treatment name(s)

(Vyvanse)
Perceived effectiveness
for idiopathic hypersomnia (1 evaluation)
Side effects
Constipation
Total evaluations
1
Tried for
Fatigue (2) idiopathic hypersomnia (1)
Treatment name(s)

(Wellbutrin XL)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
Depressed mood (2)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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


Age
Age Proportion # of patients
<20 3
20s 33
30s 88
40s 78
50s 46
60s 19
70+ 4
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 71
20-29 years 36
30-39 years 27
40-49 years 17
50-59 years 13
60-69 years 0
70+ years 0

Sex

Distribution of sex

82% Female
18% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 173
Not Diagnosed 23

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