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
40
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
35
Tried for
narcolepsy (27) fatigue (10)
1 more
Treatment name(s)

(Nuvigil)
Type
Prescription Drug
How many have tried
27
Treatment name(s)

(Ritalin)
Type
Prescription Drug
How many have tried
24
Tried for
narcolepsy (22) fatigue (5)
Treatment name(s)

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

(Vyvanse)
Type
Prescription Drug
How many have tried
7
Tried for
narcolepsy (7) fatigue (3)
1 more
Treatment name(s)

(Xanax)
Type
Prescription Drug
How many have tried
6
Tried for
anxious mood (5) narcolepsy (1)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
6
Tried for
anxious mood (5) narcolepsy (1)
Treatment name(s)

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

(Effexor XR)
Type
Prescription Drug
How many have tried
6
Tried for
depressed mood (3) narcolepsy (3)

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 (19 evaluations)
Side effects
headaches shakiness 8 more
Total evaluations
22
Treatment name(s)

(Adderall)
Perceived effectiveness
for narcolepsy (20 evaluations)
Side effects
decreased appetite shakiness 17 more
Total evaluations
27
Tried for
narcolepsy (27) fatigue (10)
1 more
Treatment name(s)

(Nuvigil)
Perceived effectiveness
for excessive daytime sleepiness (somnolence) (18 evaluations)
Side effects
irritability anxious mood 9 more
Total evaluations
21
Treatment name(s)

(Ritalin)
Perceived effectiveness
for narcolepsy (12 evaluations)
Side effects
anxious mood decreased appetite 8 more
Total evaluations
13
Tried for
narcolepsy (22) fatigue (5)
Treatment name(s)

(Dexedrine)
Perceived effectiveness
for narcolepsy (5 evaluations)
Side effects
migraine headaches nervousness 1 more
Total evaluations
6
Tried for
narcolepsy (8) fatigue (1)
Treatment name(s)

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

(Xanax)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
anxious mood (5) narcolepsy (1)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
Total evaluations
2
Tried for
anxious mood (5) narcolepsy (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)

(Effexor XR)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (3) narcolepsy (3)
  • 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 16
20s 157
30s 296
40s 301
50s 218
60s 96
70+ 24
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 269
20-29 years 102
30-39 years 77
40-49 years 55
50-59 years 26
60-69 years 2
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 171
Female 942

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 628
Not Diagnosed 38

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