Cluster headaches

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 cluster headaches?

A primary headache disorder characterized by severe one-sided pain in and around the eyes and/or temples. They can last from 15 minutes to many hours occurring 1 to 8 times a day. They are often associated with conjunctivitis, teary eyes, nasal congestion, facial sweating, and eyelid edema.

Common symptoms reported by people with cluster headaches

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 cluster headaches

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

(Imitrex)
Type
Prescription Drug
How many have tried
30
Tried for
cluster headaches (30)
Treatment name(s)

(Topamax)
Type
Prescription Drug
How many have tried
29
Tried for
cluster headaches (29) anxious mood (1)
Treatment name(s)

(Verapamil ER)
Type
Prescription Drug
How many have tried
25
Tried for
cluster headaches (25)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
9
Tried for
pain (7) cluster headaches (2)
Treatment name(s)
Type
Prescription Drug
How many have tried
8
Tried for
cluster headaches (8)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
6
Tried for
anxious mood (5) cluster headaches (1)
Treatment name(s)

(Lithium Carbonate ER)
Type
Prescription Drug
How many have tried
6
Tried for
cluster headaches (6)
Treatment name(s)

(Effexor XR)
Type
Prescription Drug
How many have tried
6
Tried for
depressed mood (5) cluster headaches (1)
1 more
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
5
Tried for
pain (4) anxious mood (1)
Treatment name(s)

(Lexapro)
Type
Prescription Drug
How many have tried
5
Tried for
anxious mood (4) depressed mood (4)

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

Compare treatments taken by people with cluster headaches

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

(Imitrex)
Perceived effectiveness
for cluster headaches (14 evaluations)
Side effects
burning sensation chest pressure 11 more
Total evaluations
15
Tried for
cluster headaches (30)
Treatment name(s)

(Topamax)
Perceived effectiveness
for cluster headaches (19 evaluations)
Side effects
memory problems confusion 20 more
Total evaluations
20
Tried for
cluster headaches (29) anxious mood (1)
Treatment name(s)

(Verapamil ER)
Perceived effectiveness
for cluster headaches (16 evaluations)
Side effects
constipation chest tightness 3 more
Total evaluations
16
Tried for
cluster headaches (25)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (2 evaluations)
Side effects
fatigue burning sensation 2 more
Total evaluations
3
Tried for
pain (7) cluster headaches (2)
Treatment name(s)
Perceived effectiveness
for cluster headaches (6 evaluations)
Side effects
Total evaluations
6
Tried for
cluster headaches (8)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
drowsiness
Total evaluations
4
Tried for
anxious mood (5) cluster headaches (1)
Treatment name(s)

(Lithium Carbonate ER)
Perceived effectiveness
for cluster headaches (5 evaluations)
Side effects
forgetfulness restless feeling in legs 2 more
Total evaluations
5
Tried for
cluster headaches (6)
Treatment name(s)

(Effexor XR)
Perceived effectiveness
for depressed mood (6 evaluations)
Side effects
anxious mood apathy 16 more
Total evaluations
8
Tried for
depressed mood (5) cluster headaches (1)
1 more
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (2 evaluations)
Side effects
crying easily lethargy 1 more
Total evaluations
2
Tried for
pain (4) anxious mood (1)
Treatment name(s)

(Lexapro)
Perceived effectiveness
for anxious mood (3 evaluations)
Side effects
drowsiness ejaculation delayed 5 more
Total evaluations
4
Tried for
anxious mood (4) depressed mood (4)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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

Who has cluster headaches on PatientsLikeMe?


Age
Age Proportion # of patients
<20 3
20s 95
30s 260
40s 424
50s 321
60s 134
70+ 29
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 200
20-29 years 182
30-39 years 102
40-49 years 82
50-59 years 24
60-69 years 1
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 395
Female 878

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 626
Not Diagnosed 101

These charts show data from cluster headaches patients who have completed their condition history
Last updated: