Narcolepsy
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 narcolepsy?
Narcolepsy is a condition characterized by recurrent, uncontrollable brief episodes of sleep and lapses in consciousness, often associated with hypnagogic hallucinations (seeing and hearing things as one is falling asleep), cataplexy (sudden loss of muscle tone) and sleep paralysis.
Common symptoms reported by people with narcolepsy
Common symptoms
How bad it is
What people are taking for it
Common symptom
Excessive daytime sleepiness (somnolence)
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 narcolepsy
Treatment name(s)
Type
How many have tried
Tried for
Type
Prescription Drug
How many have tried
36
Tried for
narcolepsy
(28)
excessive daytime sleepiness (somnolence)
(13)
1 more
Type
Prescription Drug
How many have tried
20
Tried for
excessive daytime sleepiness (somnolence)
(12)
narcolepsy
(12)
1 more
Data from patients with narcolepsy, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with narcolepsy
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Perceived effectiveness
for narcolepsy (15 evaluations)
Total evaluations
18
Tried for
narcolepsy
(28)
excessive daytime sleepiness (somnolence)
(13)
1 more
Perceived effectiveness
for narcolepsy (20 evaluations)
Total evaluations
25
Tried for
narcolepsy
(27)
fatigue
(9)
1 more
Perceived effectiveness
for excessive daytime sleepiness (somnolence) (8 evaluations)
Total evaluations
11
Tried for
excessive daytime sleepiness (somnolence)
(12)
narcolepsy
(12)
1 more
Perceived effectiveness
for narcolepsy (10 evaluations)
Total evaluations
11
Tried for
narcolepsy
(15)
fatigue
(5)
Perceived effectiveness
for narcolepsy (7 evaluations)
Total evaluations
7
Tried for
narcolepsy
(7)
fatigue
(2)
1 more
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
Total evaluations
2
Tried for
anxious mood
(5)
narcolepsy
(1)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
anxious mood
(4)
narcolepsy
(1)
Perceived effectiveness
for narcolepsy (3 evaluations)
Side effects
migraine headaches
Total evaluations
3
Tried for
narcolepsy
(5)
Perceived effectiveness
for anxious mood (4 evaluations)
Side effects
nausea
Total evaluations
4
Tried for
anxious mood
(5)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
narcolepsy
(3)
depressed mood
(2)
- Major
- Moderate
- Slight
- None
- Can't tell
- Severe
- Moderate
- Mild
- None
Data from patients with narcolepsy, who reported starting treatments within the last 5 years.
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Who has narcolepsy on PatientsLikeMe?
- 1320 patients have this condition
- 7 new patients joined this month
- 736 say narcolepsy is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 14 | |
| 20s | 170 | |
| 30s | 324 | |
| 40s | 325 | |
| 50s | 256 | |
| 60s | 120 | |
| 70+ | 34 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 284 | |
| 20-29 years | 104 | |
| 30-39 years | 78 | |
| 40-49 years | 60 | |
| 50-59 years | 28 | |
| 60-69 years | 2 | |
| 70+ years | 0 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 198 | |
| Female | 1050 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 670 | |
| Not Diagnosed | 40 |
These charts show data from narcolepsy patients who have completed their condition history
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