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 for narcolepsy

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Provigil)
Type
Prescription Drug
How many have tried
498
Tried for
narcolepsy (19)
Treatment name(s)

(Ritalin)
Type
Prescription Drug
How many have tried
315
Tried for
narcolepsy (11)
Treatment name(s)

(Dexedrine)
Type
Prescription Drug
How many have tried
215
Tried for
narcolepsy (3)

Data from patients with narcolepsy, who have ever reported treatments, ordered by their reporting frequency during 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 (12 evaluations)
Side effects
headaches achiness 5 more
Total evaluations
13
Tried for
narcolepsy (19)
Treatment name(s)

(Ritalin)
Perceived effectiveness
for narcolepsy (7 evaluations)
Side effects
anxious mood decreased appetite 8 more
Total evaluations
7
Tried for
narcolepsy (11)
Treatment name(s)

(Dexedrine)
Perceived effectiveness
for narcolepsy (1 evaluation)
Side effects
Total evaluations
1
Tried for
narcolepsy (3)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with narcolepsy, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
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Who has narcolepsy on PatientsLikeMe?

  • 3 new patients joined this month
  • 763 say narcolepsy is their primary condition

Age
Age Proportion # of patients
<20 11
20s 158
30s 327
40s 338
50s 271
60s 146
70+ 38
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 287
20-29 years 106
30-39 years 79
40-49 years 62
50-59 years 28
60-69 years 3
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 209
Female 1085

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 675
Not Diagnosed 43

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