Idiopathic hypersomnia
We’re all in this for good.
- help each other live better and uncover the best ways to manage your health today
- help researchers shorten the path to new treatments tomorrow
How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.
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.
Last updated:
Treatments taken by people with idiopathic hypersomnia
Treatment name(s)
Type
How many have tried
Tried for
Data from patients with idiopathic hypersomnia, who reported starting treatments within the last 5 years.
Last updated:
Compare treatments taken by people with idiopathic hypersomnia
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Perceived effectiveness
for idiopathic hypersomnia (11 evaluations)
Total evaluations
19
Tried for
idiopathic hypersomnia
(14)
fatigue
(13)
Perceived effectiveness
for idiopathic hypersomnia (6 evaluations)
Total evaluations
7
Tried for
idiopathic hypersomnia
(13)
fatigue
(4)
Perceived effectiveness
for idiopathic hypersomnia (8 evaluations)
Total evaluations
8
Tried for
idiopathic hypersomnia
(14)
fatigue
(1)
Perceived effectiveness
for idiopathic hypersomnia (4 evaluations)
Side effects
decreased appetite
Stevens Johnson syndrome
Total evaluations
9
Tried for
idiopathic hypersomnia
(10)
fatigue
(4)
Perceived effectiveness
for anxious mood (4 evaluations)
Total evaluations
4
Tried for
anxious mood
(7)
Perceived effectiveness
for depressed mood (3 evaluations)
Total evaluations
3
Tried for
depressed mood
(5)
anxious mood
(3)
Perceived effectiveness
for anxious mood (3 evaluations)
Total evaluations
4
Tried for
anxious mood
(2)
pain
(2)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
weight gain
Total evaluations
5
Tried for
depressed mood
(3)
anxious mood
(1)
Perceived effectiveness
for anxious mood (5 evaluations)
Side effects
tiredness
Total evaluations
5
Tried for
anxious mood
(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.
Last updated:
Who has idiopathic hypersomnia on PatientsLikeMe?
- 469 patients have this condition
- 0 new patients joined this month
- 220 say idiopathic hypersomnia is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 1 | |
| 20s | 49 | |
| 30s | 130 | |
| 40s | 117 | |
| 50s | 101 | |
| 60s | 32 | |
| 70+ | 11 |
| 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 | Proportion | # of patients |
|---|---|---|
| Male | 75 | |
| Female | 373 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 243 | |
| Not Diagnosed | 26 |
These charts show data from idiopathic hypersomnia patients who have completed their condition history
Last updated: