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
111
Tried for
epilepsy (111)
Treatment name(s)

(Lamictal)
Type
Prescription Drug
How many have tried
103
Tried for
epilepsy (103)
Treatment name(s)

(Topamax)
Type
Prescription Drug
How many have tried
72
Tried for
epilepsy (70) headaches (3)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
49
Tried for
epilepsy (43) anxious mood (17)
1 more
Treatment name(s)

(Depakote)
Type
Prescription Drug
How many have tried
48
Tried for
epilepsy (48)
Treatment name(s)

(Vimpat)
Type
Prescription Drug
How many have tried
43
Tried for
epilepsy (43)
Treatment name(s)

(Trileptal)
Type
Prescription Drug
How many have tried
31
Tried for
epilepsy (31) pain (1)
Treatment name(s)

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

(Neurontin)
Type
Prescription Drug
How many have tried
22
Tried for
pain (12) epilepsy (9)
1 more
Treatment name(s)

(Zonegran)
Type
Prescription Drug
How many have tried
22
Tried for
epilepsy (22)

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 (78 evaluations)
Side effects
headaches mood worsening 81 more
Total evaluations
80
Tried for
epilepsy (111)
Treatment name(s)

(Lamictal)
Perceived effectiveness
for epilepsy (76 evaluations)
Side effects
headaches memory and cognition problems 54 more
Total evaluations
85
Tried for
epilepsy (103)
Treatment name(s)

(Topamax)
Perceived effectiveness
for epilepsy (30 evaluations)
Side effects
decreased appetite fatigue 36 more
Total evaluations
40
Tried for
epilepsy (70) headaches (3)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for epilepsy (21 evaluations)
Side effects
drowsiness fatigue 10 more
Total evaluations
25
Tried for
epilepsy (43) anxious mood (17)
1 more
Treatment name(s)

(Depakote)
Perceived effectiveness
for epilepsy (26 evaluations)
Side effects
weight gain dizziness 20 more
Total evaluations
26
Tried for
epilepsy (48)
Treatment name(s)

(Vimpat)
Perceived effectiveness
for epilepsy (22 evaluations)
Side effects
dizziness double vision (diplopia) 22 more
Total evaluations
24
Tried for
epilepsy (43)
Treatment name(s)

(Trileptal)
Perceived effectiveness
for epilepsy (17 evaluations)
Side effects
depressed mood dry mouth 21 more
Total evaluations
18
Tried for
epilepsy (31) pain (1)
Treatment name(s)

(Tegretol)
Perceived effectiveness
for epilepsy (14 evaluations)
Side effects
ataxia (lack of coordination) change in body smell 17 more
Total evaluations
14
Tried for
epilepsy (28)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (4 evaluations)
Side effects
constipation dizziness 2 more
Total evaluations
11
Tried for
pain (12) epilepsy (9)
1 more
Treatment name(s)

(Zonegran)
Perceived effectiveness
for epilepsy (10 evaluations)
Side effects
decreased appetite headaches 13 more
Total evaluations
11
Tried for
epilepsy (22)
  • 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.
Last updated:

Who has epilepsy on PatientsLikeMe?


Age
Age Proportion # of patients
<20 438
20s 1,320
30s 2,326
40s 2,591
50s 2,027
60s 937
70+ 225
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 2,773
20-29 years 797
30-39 years 451
40-49 years 251
50-59 years 77
60-69 years 24
70+ years 6

Distribution of sex

Sex
Sex Proportion # of patients
Male 3,117
Female 6,809

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5,946
Not Diagnosed 178

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