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
45
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
33
Tried for
narcolepsy (26) fatigue (9)
1 more
Treatment name(s)

(Nuvigil)
Type
Prescription Drug
How many have tried
31
Treatment name(s)

(Ritalin)
Type
Prescription Drug
How many have tried
24
Tried for
narcolepsy (21) fatigue (6)
Treatment name(s)

(Dexedrine)
Type
Prescription Drug
How many have tried
10
Tried for
narcolepsy (10) fatigue (1)
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)

(Vyvanse)
Type
Prescription Drug
How many have tried
6
Tried for
narcolepsy (6) fatigue (2)
1 more
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
6
Tried for
pain (6)

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 (20 evaluations)
Side effects
headaches shakiness 11 more
Total evaluations
27
Treatment name(s)

(Adderall)
Perceived effectiveness
for narcolepsy (19 evaluations)
Side effects
decreased appetite shakiness 16 more
Total evaluations
24
Tried for
narcolepsy (26) fatigue (9)
1 more
Treatment name(s)

(Nuvigil)
Perceived effectiveness
for excessive daytime sleepiness (somnolence) (19 evaluations)
Side effects
irritability anxious mood 9 more
Total evaluations
22
Treatment name(s)

(Ritalin)
Perceived effectiveness
for narcolepsy (12 evaluations)
Side effects
anxious mood loss of appetite 9 more
Total evaluations
13
Tried for
narcolepsy (21) fatigue (6)
Treatment name(s)

(Dexedrine)
Perceived effectiveness
for narcolepsy (5 evaluations)
Side effects
insomnia migraine headaches 2 more
Total evaluations
6
Tried for
narcolepsy (10) fatigue (1)
Treatment name(s)

(Xanax)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
Total evaluations
2
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 (3 evaluations)
Side effects
nausea
Total evaluations
3
Tried for
anxious mood (6)
Treatment name(s)

(Vyvanse)
Perceived effectiveness
for narcolepsy (5 evaluations)
Side effects
loss of appetite cold hands and feet 2 more
Total evaluations
5
Tried for
narcolepsy (6) fatigue (2)
1 more
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (4 evaluations)
Side effects
drowsiness
Total evaluations
4
Tried for
pain (6)
  • 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 14
20s 156
30s 276
40s 281
50s 201
60s 81
70+ 19
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 261
20-29 years 100
30-39 years 75
40-49 years 54
50-59 years 25
60-69 years 2
70+ years 0

Sex

Distribution of sex

85% Female
15% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 566
Not Diagnosed 38

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