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.

What is it like to have 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.
Last updated:

What do patients take to treat Idiopathic Hypersomnia and its symptoms?

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

(APO-Methylphenidate, Concerta, Daytrana) 15 more
Type
Prescription Drug
How many have tried
12
Tried for
Idiopathic Hypersomnia (11) Fatigue (3)
Treatment name(s)

(Adderall, Adderall XR, Amphetamine Salts) 2 more
Type
Prescription Drug
How many have tried
9
Tried for
Fatigue (6) Idiopathic Hypersomnia (3)
Treatment name(s)

(Alertec, Modavigil, Modiodal) 1 more
Type
Prescription Drug
How many have tried
9
Tried for
Idiopathic Hypersomnia (8) Fatigue (2)
1 more
Treatment name(s)

(Dexamphetamine, Dexedrine, Dexedrine Spansule) 3 more
Type
Prescription Drug
How many have tried
7
Tried for
Idiopathic Hypersomnia (6) Fatigue (2)
Treatment name(s)

(Nuvigil)
Type
Prescription Drug
How many have tried
5
Tried for
Idiopathic Hypersomnia (4) Fatigue (1)
Treatment name(s)

(Cymbalta, Cymgen, Yelate) 1 more
Type
Prescription Drug
How many have tried
5
Tried for
Depressed mood (5)
Treatment name(s)

(Xyrem)
Type
Prescription Drug
How many have tried
3
Tried for
Idiopathic Hypersomnia (3)
Treatment name(s)

(Conzip, Dolol, Dolzam) 23 more
Type
Prescription Drug
How many have tried
3
Tried for
Pain (3)
Treatment name(s)

(Amineurin, Amitriptyline Troche, Anapsique) 10 more
Type
Prescription Drug
How many have tried
2
Tried for
Insomnia (2) Pain (1)
Treatment name(s)

(Abilify, Abilify Discmelt, Amirozole) 1 more
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.
Last updated:
You’ve tried this treatment.

Compare treatments for Idiopathic Hypersomnia

You’ve tried
Treatment name(s)
Perceived effectiveness
Side effects
How many evaluations
Tried for
Treatment name(s)

(APO-Methylphenidate, Concerta, Daytrana) 15 more
Perceived effectiveness
for Idiopathic Hypersomnia (7 evaluations)
Side effects
Antsy Heart palpitations 3 more
How many evaluations
10
Tried for
Idiopathic Hypersomnia (11) Fatigue (3)
Treatment name(s)

(Adderall, Adderall XR, Amphetamine Salts) 2 more
Perceived effectiveness
for Fatigue (6 evaluations)
Side effects
Cold hands and feet Depression with anxiety 7 more
How many evaluations
8
Tried for
Fatigue (6) Idiopathic Hypersomnia (3)
Treatment name(s)

(Alertec, Modavigil, Modiodal) 1 more
Perceived effectiveness
for Idiopathic Hypersomnia (2 evaluations)
Side effects
Amblyopia Anxious mood 14 more
How many evaluations
5
Tried for
Idiopathic Hypersomnia (8) Fatigue (2)
1 more
Treatment name(s)

(Dexamphetamine, Dexedrine, Dexedrine Spansule) 3 more
Perceived effectiveness
for Idiopathic Hypersomnia (5 evaluations)
Side effects
Nervousness None 1 more
How many evaluations
5
Tried for
Idiopathic Hypersomnia (6) Fatigue (2)
Treatment name(s)

(Nuvigil)
Perceived effectiveness
for Idiopathic Hypersomnia (3 evaluations)
Side effects
Chronic headaches Tension Headache 1 more
How many evaluations
3
Tried for
Idiopathic Hypersomnia (4) Fatigue (1)
Treatment name(s)

(Cymbalta, Cymgen, Yelate) 1 more
Perceived effectiveness
for Depressed mood (2 evaluations)
Side effects
Morning nausea
How many evaluations
2
Tried for
Depressed mood (5)
Treatment name(s)

(Xyrem)
Perceived effectiveness
for Idiopathic Hypersomnia (3 evaluations)
Side effects
Drug induced psychosis Nausea 3 more
How many evaluations
3
Tried for
Idiopathic Hypersomnia (3)
Treatment name(s)

(Conzip, Dolol, Dolzam) 23 more
Perceived effectiveness
for Pain (1 evaluation)
Side effects
How many evaluations
1
Tried for
Pain (3)
Treatment name(s)

(Amineurin, Amitriptyline Troche, Anapsique) 10 more
Perceived effectiveness
for Insomnia (3 evaluations)
Side effects
Fatigue Mild Depression
How many evaluations
3
Tried for
Insomnia (2) Pain (1)
Treatment name(s)

(Abilify, Abilify Discmelt, Amirozole) 1 more
Perceived effectiveness
for Depressed mood (2 evaluations)
Side effects
Flu like symptoms Internal Restlessness (Akathisia)
How many evaluations
2
Tried for
Depressed mood (2)

Data from patients with Idiopathic Hypersomnia, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has Idiopathic Hypersomnia on PatientsLikeMe?


Age
Age Proportion # of patients
<20 2
20s 33
30s 50
40s 41
50s 24
60s 6
70+ 1

Gender

Distribution of females vs. males

79% Females
21% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 49
20-29 years 23
30-39 years 15
40-49 years 11
50-59 years 9
60-69 years 0
70+ years 0

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 117
Not Diagnosed 17

These charts show data from Idiopathic Hypersomnia patients who have completed their condition history
Last updated: