Epilepsy

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 member Letitia explains in this video.

What is epilepsy?

A group of disorders marked by problems in the normal functioning of the brain. These problems can produce seizures, unusual body movements, a loss of consciousness or changes in consciousness, as well as mental problems or problems with the senses.

Common symptoms reported by people with epilepsy

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 epilepsy

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

(Keppra)
Type
Prescription Drug
How many have tried
123
Tried for
epilepsy (123)
Treatment name(s)

(Lamictal)
Type
Prescription Drug
How many have tried
113
Tried for
epilepsy (113)
Treatment name(s)

(Topamax)
Type
Prescription Drug
How many have tried
84
Tried for
epilepsy (82) headaches (4)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
60
Tried for
epilepsy (52) anxious mood (22)
1 more
Treatment name(s)

(Depakote)
Type
Prescription Drug
How many have tried
54
Tried for
epilepsy (54)
Treatment name(s)

(Vimpat)
Type
Prescription Drug
How many have tried
50
Tried for
epilepsy (50)
Treatment name(s)

(Tegretol)
Type
Prescription Drug
How many have tried
37
Tried for
epilepsy (37)
Treatment name(s)

(Trileptal)
Type
Prescription Drug
How many have tried
33
Tried for
epilepsy (33) Pain (1)
Treatment name(s)

(Zonegran)
Type
Prescription Drug
How many have tried
28
Tried for
epilepsy (28)
Treatment name(s)

(Dilantin)
Type
Prescription Drug
How many have tried
27
Tried for
epilepsy (27)

Data from patients with epilepsy, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with epilepsy

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

(Keppra)
Perceived effectiveness
for epilepsy (85 evaluations)
Side effects
headaches tiredness 93 more
Total evaluations
87
Tried for
epilepsy (123)
Treatment name(s)

(Lamictal)
Perceived effectiveness
for epilepsy (76 evaluations)
Side effects
headaches memory and cognition problems 55 more
Total evaluations
84
Tried for
epilepsy (113)
Treatment name(s)

(Topamax)
Perceived effectiveness
for epilepsy (42 evaluations)
Side effects
weight loss confusion 47 more
Total evaluations
52
Tried for
epilepsy (82) headaches (4)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for epilepsy (23 evaluations)
Side effects
drowsiness fatigue 10 more
Total evaluations
28
Tried for
epilepsy (52) anxious mood (22)
1 more
Treatment name(s)

(Depakote)
Perceived effectiveness
for epilepsy (28 evaluations)
Side effects
weight gain dizziness 23 more
Total evaluations
28
Tried for
epilepsy (54)
Treatment name(s)

(Vimpat)
Perceived effectiveness
for epilepsy (24 evaluations)
Side effects
dizziness double vision (diplopia) 18 more
Total evaluations
26
Tried for
epilepsy (50)
Treatment name(s)

(Tegretol)
Perceived effectiveness
for epilepsy (14 evaluations)
Side effects
ataxia (lack of coordination) change in body smell 18 more
Total evaluations
14
Tried for
epilepsy (37)
Treatment name(s)

(Trileptal)
Perceived effectiveness
for epilepsy (13 evaluations)
Side effects
depressed mood acne 16 more
Total evaluations
14
Tried for
epilepsy (33) Pain (1)
Treatment name(s)

(Zonegran)
Perceived effectiveness
for epilepsy (14 evaluations)
Side effects
headaches loss of appetite 26 more
Total evaluations
15
Tried for
epilepsy (28)
Treatment name(s)

(Dilantin)
Perceived effectiveness
for epilepsy (15 evaluations)
Side effects
drowsiness insomnia 12 more
Total evaluations
18
Tried for
epilepsy (27)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with epilepsy, who reported starting treatments within the last 5 years.
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Who has epilepsy on PatientsLikeMe?


Age
Age Proportion # of patients
<20 457
20s 1,395
30s 2,329
40s 2,534
50s 1,952
60s 864
70+ 204
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 2,766
20-29 years 790
30-39 years 447
40-49 years 250
50-59 years 76
60-69 years 23
70+ years 6

Sex

Distribution of sex

69% Female
31% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,832
Not Diagnosed 178

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