Narcolepsy

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 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

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
Treatment name(s)

(Provigil)
Type
Prescription Drug
How many have tried
43
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
38
Tried for
narcolepsy (30) fatigue (11)
1 more
Treatment name(s)

(Nuvigil)
Type
Prescription Drug
How many have tried
23
Treatment name(s)

(Ritalin)
Type
Prescription Drug
How many have tried
22
Tried for
narcolepsy (20) fatigue (6)
Treatment name(s)

(Vyvanse)
Type
Prescription Drug
How many have tried
8
Tried for
narcolepsy (8) fatigue (3)
1 more
Treatment name(s)

(Dexedrine)
Type
Prescription Drug
How many have tried
6
Tried for
narcolepsy (6) fatigue (1)
Treatment name(s)

(Vistaril)
Type
Prescription Drug
How many have tried
6
Tried for
anxious mood (6)
Treatment name(s)

(Xyrem)
Type
Prescription Drug
How many have tried
6
Treatment name(s)

(Xanax)
Type
Prescription Drug
How many have tried
5
Tried for
anxious mood (4) narcolepsy (1)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
5
Tried for
anxious mood (4) narcolepsy (1)

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
Treatment name(s)

(Provigil)
Perceived effectiveness
for narcolepsy (18 evaluations)
Side effects
headaches shakiness 8 more
Total evaluations
22
Treatment name(s)

(Adderall)
Perceived effectiveness
for narcolepsy (22 evaluations)
Side effects
decreased appetite anxious mood 17 more
Total evaluations
29
Tried for
narcolepsy (30) fatigue (11)
1 more
Treatment name(s)

(Nuvigil)
Perceived effectiveness
for excessive daytime sleepiness (somnolence) (12 evaluations)
Side effects
decreased appetite irritability 3 more
Total evaluations
15
Treatment name(s)

(Ritalin)
Perceived effectiveness
for narcolepsy (14 evaluations)
Side effects
anxious mood decreased appetite 11 more
Total evaluations
15
Tried for
narcolepsy (20) fatigue (6)
Treatment name(s)

(Vyvanse)
Perceived effectiveness
for narcolepsy (7 evaluations)
Side effects
decreased appetite anger 6 more
Total evaluations
7
Tried for
narcolepsy (8) fatigue (3)
1 more
Treatment name(s)

(Dexedrine)
Perceived effectiveness
for narcolepsy (3 evaluations)
Side effects
migraine headaches nervousness
Total evaluations
4
Tried for
narcolepsy (6) fatigue (1)
Treatment name(s)

(Vistaril)
Perceived effectiveness
for anxious mood (4 evaluations)
Side effects
nausea
Total evaluations
4
Tried for
anxious mood (6)
Treatment name(s)

(Xyrem)
Perceived effectiveness
for excessive daytime sleepiness (somnolence) (9 evaluations)
Side effects
nausea night sweats 5 more
Total evaluations
11
Treatment name(s)

(Xanax)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
anxious mood (4) narcolepsy (1)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
Total evaluations
2
Tried for
anxious mood (4) narcolepsy (1)
  • 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?


Age
Age Proportion # of patients
<20 18
20s 171
30s 311
40s 321
50s 237
60s 102
70+ 29
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 283
20-29 years 106
30-39 years 78
40-49 years 58
50-59 years 26
60-69 years 2
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 187
Female 1009

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 659
Not Diagnosed 40

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