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
19
Tried for
fatigue (11) idiopathic hypersomnia (11)
Treatment name(s)

(Provigil)
Type
Prescription Drug
How many have tried
13
Tried for
idiopathic hypersomnia (13) fatigue (1)
Treatment name(s)

(Ritalin)
Type
Prescription Drug
How many have tried
12
Tried for
idiopathic hypersomnia (11) fatigue (3)
Treatment name(s)

(Nuvigil)
Type
Prescription Drug
How many have tried
11
Tried for
idiopathic hypersomnia (10) fatigue (3)
Treatment name(s)

(Lexapro)
Type
Prescription Drug
How many have tried
5
Tried for
depressed mood (4) anxious mood (2)
Treatment name(s)

(Vistaril)
Type
Prescription Drug
How many have tried
5
Tried for
anxious mood (5)
Treatment name(s)

(Zoloft)
Type
Prescription Drug
How many have tried
4
Tried for
depressed mood (3) anxious mood (1)
Treatment name(s)

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

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

(Lidocaine Infusion)
Type
Prescription Drug
How many have tried
3
Tried for
pain (3)

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 fatigue (7 evaluations)
Side effects
shakiness anxious mood 7 more
Total evaluations
14
Tried for
fatigue (11) idiopathic hypersomnia (11)
Treatment name(s)

(Provigil)
Perceived effectiveness
for idiopathic hypersomnia (7 evaluations)
Side effects
breast soreness excessive yawning 3 more
Total evaluations
7
Tried for
idiopathic hypersomnia (13) fatigue (1)
Treatment name(s)

(Ritalin)
Perceived effectiveness
for idiopathic hypersomnia (6 evaluations)
Side effects
decreased appetite anxious mood 3 more
Total evaluations
7
Tried for
idiopathic hypersomnia (11) fatigue (3)
Treatment name(s)

(Nuvigil)
Perceived effectiveness
for idiopathic hypersomnia (4 evaluations)
Side effects
decreased appetite Stevens Johnson syndrome
Total evaluations
7
Tried for
idiopathic hypersomnia (10) fatigue (3)
Treatment name(s)

(Lexapro)
Perceived effectiveness
for depressed mood (2 evaluations)
Side effects
fatigue sleepiness 1 more
Total evaluations
2
Tried for
depressed mood (4) anxious mood (2)
Treatment name(s)

(Vistaril)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
Total evaluations
2
Tried for
anxious mood (5)
Treatment name(s)

(Zoloft)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
weight gain
Total evaluations
5
Tried for
depressed mood (3) anxious mood (1)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (5 evaluations)
Side effects
tiredness
Total evaluations
5
Tried for
anxious mood (3)
Treatment name(s)

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

(Lidocaine Infusion)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (3)
  • 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?

  • 1 new patients joined this month
  • 223 say idiopathic hypersomnia is their primary condition

Age
Age Proportion # of patients
<20 1
20s 50
30s 129
40s 115
50s 100
60s 34
70+ 13
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 90
20-29 years 44
30-39 years 36
40-49 years 20
50-59 years 14
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 75
Female 375

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 244
Not Diagnosed 26

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