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
21
Tried for
idiopathic hypersomnia (21) fatigue (2)
Treatment name(s)

(Ritalin)
Type
Prescription Drug
How many have tried
14
Tried for
idiopathic hypersomnia (12) 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
7
Tried for
idiopathic hypersomnia (5) fatigue (2)
Treatment name(s)

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

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

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

(Voltaren Gel)
Type
Prescription Drug
How many have tried
4
Tried for
pain (4)
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)

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 (12 evaluations)
Side effects
excessive yawning anxious mood 20 more
Total evaluations
15
Tried for
idiopathic hypersomnia (21) fatigue (2)
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 (12) 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 (5) 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)

(Lexapro)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
rapid weight gain sex drive (libido) decreased 1 more
Total evaluations
3
Tried for
anxious mood (3) depressed mood (3)
1 more
Treatment name(s)

(Vistaril)
Perceived effectiveness
for anxious mood (3 evaluations)
Side effects
drowsiness loss of appetite 2 more
Total evaluations
3
Tried for
anxious mood (5)
Treatment name(s)

(Voltaren Gel)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (4)
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)
  • 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 34
30s 91
40s 82
50s 53
60s 19
70+ 5
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 74
20-29 years 37
30-39 years 29
40-49 years 16
50-59 years 13
60-69 years 0
70+ years 0

Sex

Distribution of sex

83% Female
17% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 178
Not Diagnosed 23

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