Cataplexy

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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 cataplexy?

Cataplexy is the sudden loss of muscle tone that is triggered by the experience of an intense emotion. Cataplexy is the result of an absence of a neurotransmitter in the hypothalamus known as hypocretin or orexin. It is often associated with narcolepsy but is seen in other pathological conditions.

Common symptoms reported by people with cataplexy

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 cataplexy

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

(Xyrem)
Type
Prescription Drug
How many have tried
13
Tried for
cataplexy (13)
Treatment name(s)

(Effexor XR)
Type
Prescription Drug
How many have tried
7
Tried for
cataplexy (6) depressed mood (1)
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
3
Tried for
fatigue (3)
Treatment name(s)

(Nuvigil)
Type
Prescription Drug
How many have tried
3
Tried for
fatigue (2) cataplexy (1)
Treatment name(s)

(Provigil)
Type
Prescription Drug
How many have tried
3
Tried for
cataplexy (2) fatigue (1)
Treatment name(s)

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

(Elavil)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
1
Tried for
cataplexy (1)
Treatment name(s)

(BuTrans patch)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Wellbutrin XL)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1) depressed mood (1)

Data from patients with cataplexy, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with cataplexy

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Xyrem)
Perceived effectiveness
for cataplexy (5 evaluations)
Side effects
nausea brain fog 5 more
Total evaluations
5
Tried for
cataplexy (13)
Treatment name(s)

(Effexor XR)
Perceived effectiveness
for cataplexy (6 evaluations)
Side effects
nausea and dizziness tiredness
Total evaluations
6
Tried for
cataplexy (6) depressed mood (1)
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (1 evaluation)
Side effects
tachycardia (fast heart rate)
Total evaluations
1
Tried for
fatigue (3)
Treatment name(s)

(Nuvigil)
Perceived effectiveness
for fatigue (1 evaluation)
Side effects
Total evaluations
1
Tried for
fatigue (2) cataplexy (1)
Treatment name(s)

(Provigil)
Perceived effectiveness
for cataplexy (1 evaluation)
Side effects
headaches in morning
Total evaluations
1
Tried for
cataplexy (2) fatigue (1)
Treatment name(s)

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

(Elavil)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
cataplexy (1)
Treatment name(s)

(BuTrans patch)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Wellbutrin XL)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (1) depressed mood (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with cataplexy, who reported starting treatments within the last 5 years.
Last updated:

Who has cataplexy on PatientsLikeMe?


Age
Age Proportion # of patients
<20 2
20s 21
30s 31
40s 50
50s 24
60s 11
70+ 4
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 39
20-29 years 21
30-39 years 18
40-49 years 12
50-59 years 4
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 25
Female 118

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 101
Not Diagnosed 8

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