Trigeminal neuralgia

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 trigeminal neuralgia?

Trigeminal neuralgia is a facial pain syndrome due to a disorder of the 5th cranial nerve. It is characterized by some combination of sharp, stabbing, intense facial pain.

Common symptoms reported by people with trigeminal neuralgia

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.
Last updated:

Treatments taken by people with trigeminal neuralgia

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

(Tegretol)
Type
Prescription Drug
How many have tried
38
Tried for
trigeminal neuralgia (38) Pain (1)
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
12
Tried for
trigeminal neuralgia (12)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
11
Tried for
Pain (7) trigeminal neuralgia (5)
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
7
Tried for
Pain (4) trigeminal neuralgia (2)
1 more
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
7
Treatment name(s)

(Trileptal)
Type
Prescription Drug
How many have tried
7
Tried for
Pain (4) trigeminal neuralgia (4)
Treatment name(s)

(Lyrica)
Type
Prescription Drug
How many have tried
6
Tried for
trigeminal neuralgia (4) Pain (2)
Treatment name(s)

(Effexor XR)
Type
Prescription Drug
How many have tried
6
Tried for
depressed mood (4) Pain (2)
1 more
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
5
Tried for
Pain (5)
Treatment name(s)

(Ativan)
Type
Prescription Drug
How many have tried
5
Tried for
anxious mood (5)

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

Compare treatments taken by people with trigeminal neuralgia

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

(Tegretol)
Perceived effectiveness
for trigeminal neuralgia (24 evaluations)
Side effects
balance problems excessive daytime sleepiness (somnolence) 27 more
Total evaluations
24
Tried for
trigeminal neuralgia (38) Pain (1)
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for trigeminal neuralgia (6 evaluations)
Side effects
anaphylaxis drowsiness 3 more
Total evaluations
12
Tried for
trigeminal neuralgia (12)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for Pain (4 evaluations)
Side effects
dizziness drowsiness 1 more
Total evaluations
5
Tried for
Pain (7) trigeminal neuralgia (5)
Treatment name(s)

(Elavil)
Perceived effectiveness
for Pain (2 evaluations)
Side effects
excessive daytime sleepiness (somnolence) balanced translocation 7 more
Total evaluations
9
Tried for
Pain (4) trigeminal neuralgia (2)
1 more
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for depressed mood (5 evaluations)
Side effects
dizziness electric shock sensation in face 4 more
Total evaluations
5
Treatment name(s)

(Trileptal)
Perceived effectiveness
for Pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
Pain (4) trigeminal neuralgia (4)
Treatment name(s)

(Lyrica)
Perceived effectiveness
for trigeminal neuralgia (1 evaluation)
Side effects
weight gain anxious mood 6 more
Total evaluations
4
Tried for
trigeminal neuralgia (4) Pain (2)
Treatment name(s)

(Effexor XR)
Perceived effectiveness
for depressed mood (2 evaluations)
Side effects
decreased appetite
Total evaluations
2
Tried for
depressed mood (4) Pain (2)
1 more
Treatment name(s)

(Norco)
Perceived effectiveness
for Pain (2 evaluations)
Side effects
cognitive confusion sleepiness
Total evaluations
2
Tried for
Pain (5)
Treatment name(s)

(Ativan)
Perceived effectiveness
for anxious mood (3 evaluations)
Side effects
drowsiness
Total evaluations
3
Tried for
anxious mood (5)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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

Who has trigeminal neuralgia on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 20
30s 93
40s 215
50s 202
60s 124
70+ 40
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 19
20-29 years 72
30-39 years 120
40-49 years 113
50-59 years 79
60-69 years 16
70+ years 3

Sex

Distribution of sex

88% Female
12% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 463
Not Diagnosed 28

These charts show data from trigeminal neuralgia patients who have completed their condition history
Last updated: