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, fatigue, pain, and stress) 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)

(Adderall)
Type
Prescription Drug
How many have tried
21
Tried for
idiopathic hypersomnia (14) fatigue (10)
Treatment name(s)

(Provigil)
Type
Prescription Drug
How many have tried
17
Tried for
idiopathic hypersomnia (17) fatigue (1)
Treatment name(s)

(Ritalin)
Type
Prescription Drug
How many have tried
15
Tried for
idiopathic hypersomnia (14) fatigue (4)
Treatment name(s)

(Nuvigil)
Type
Prescription Drug
How many have tried
12
Tried for
idiopathic hypersomnia (10) fatigue (4)
Treatment name(s)

(Vistaril)
Type
Prescription Drug
How many have tried
9
Tried for
anxious mood (9)
Treatment name(s)

(Lexapro)
Type
Prescription Drug
How many have tried
7
Tried for
depressed mood (5) anxious mood (3)
1 more
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
6
Tried for
anxious mood (3) pain (3)
Treatment name(s)

(Abilify)
Type
Prescription Drug
How many have tried
4
Tried for
depressed mood (3) anxious mood (2)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
4
Tried for
depressed mood (3) pain (2)
2 more
Treatment name(s)

(Vyvanse)
Type
Prescription Drug
How many have tried
4
Tried for
fatigue (3) idiopathic hypersomnia (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)

(Adderall)
Perceived effectiveness
for idiopathic hypersomnia (9 evaluations)
Side effects
dry mouth shakiness 9 more
Total evaluations
16
Tried for
idiopathic hypersomnia (14) fatigue (10)
Treatment name(s)

(Provigil)
Perceived effectiveness
for idiopathic hypersomnia (11 evaluations)
Side effects
breast soreness excessive yawning 5 more
Total evaluations
11
Tried for
idiopathic hypersomnia (17) fatigue (1)
Treatment name(s)

(Ritalin)
Perceived effectiveness
for idiopathic hypersomnia (7 evaluations)
Side effects
decreased appetite anxious mood 4 more
Total evaluations
8
Tried for
idiopathic hypersomnia (14) fatigue (4)
Treatment name(s)

(Nuvigil)
Perceived effectiveness
for idiopathic hypersomnia (4 evaluations)
Side effects
decreased appetite Stevens Johnson syndrome
Total evaluations
9
Tried for
idiopathic hypersomnia (10) fatigue (4)
Treatment name(s)

(Vistaril)
Perceived effectiveness
for anxious mood (5 evaluations)
Side effects
drowsiness decreased appetite 2 more
Total evaluations
5
Tried for
anxious mood (9)
Treatment name(s)

(Lexapro)
Perceived effectiveness
for depressed mood (3 evaluations)
Side effects
decreased sex drive (libido) sexual dysfunction 2 more
Total evaluations
4
Tried for
depressed mood (5) anxious mood (3)
1 more
Treatment name(s)

(Neurontin)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
fatigue hypomania 1 more
Total evaluations
4
Tried for
anxious mood (3) pain (3)
Treatment name(s)

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

(Cymbalta)
Perceived effectiveness
for depressed mood (4 evaluations)
Side effects
dizziness and feeling faint
Total evaluations
4
Tried for
depressed mood (3) pain (2)
2 more
Treatment name(s)

(Vyvanse)
Perceived effectiveness
for fatigue (1 evaluation)
Side effects
blood pooling in limbs cold sensation in feet
Total evaluations
1
Tried for
fatigue (3) idiopathic hypersomnia (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 2
20s 54
30s 120
40s 112
50s 80
60s 28
70+ 10
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 90
20-29 years 44
30-39 years 34
40-49 years 19
50-59 years 13
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 70
Female 343

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 237
Not Diagnosed 24

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