Idiopathic hypersomnia

We’re all in this for good.

By sharing your stories and data, you will:
  • 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
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
19
Tried for
idiopathic hypersomnia (11) fatigue (10)
Treatment name(s)

(Provigil)
Type
Prescription Drug
How many have tried
19
Tried for
idiopathic hypersomnia (18) fatigue (2)
Treatment name(s)

(Ritalin)
Type
Prescription Drug
How many have tried
16
Tried for
idiopathic hypersomnia (15) fatigue (5)
Treatment name(s)

(Nuvigil)
Type
Prescription Drug
How many have tried
13
Tried for
idiopathic hypersomnia (11) fatigue (4)
1 more
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.
Last updated:

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 (6 evaluations)
Side effects
dry mouth shakiness 10 more
Total evaluations
14
Tried for
idiopathic hypersomnia (11) fatigue (10)
Treatment name(s)

(Provigil)
Perceived effectiveness
for idiopathic hypersomnia (11 evaluations)
Side effects
breast soreness excessive yawning 5 more
Total evaluations
12
Tried for
idiopathic hypersomnia (18) fatigue (2)
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 (15) fatigue (5)
Treatment name(s)

(Nuvigil)
Perceived effectiveness
for idiopathic hypersomnia (8 evaluations)
Side effects
chronic headaches Stevens Johnson syndrome 2 more
Total evaluations
13
Tried for
idiopathic hypersomnia (11) fatigue (4)
1 more
Treatment name(s)

(Vistaril)
Perceived effectiveness
for anxious mood (4 evaluations)
Side effects
drowsiness decreased appetite 2 more
Total evaluations
4
Tried for
anxious mood (9)
Treatment name(s)

(Lexapro)
Perceived effectiveness
for depressed mood (2 evaluations)
Side effects
decreased sex drive (libido) sexual dysfunction 1 more
Total evaluations
3
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.
Last updated:

Who has idiopathic hypersomnia on PatientsLikeMe?


Age
Age Proportion # of patients
<20 2
20s 48
30s 114
40s 100
50s 71
60s 26
70+ 6
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 88
20-29 years 42
30-39 years 34
40-49 years 18
50-59 years 13
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 61
Female 310

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 232
Not Diagnosed 22

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