Who Exactly Is Affected by Cluster Headache?

Read about one of the most painful types of headache disorders and why children often have to live in silence with this debilitating disease.

Cluster headache is a brutal, extremely painful headache disorder. It is often considered the most painful of all headaches, to the point of interfering with every aspect of a person’s daily life. Cluster headache attacks occur in groups or “clusters.” Attacks come in cycles and are described as severe pain behind the eye or at the temple. During these attacks, the pain is accompanied by one or more symptoms on the same side as the pain like drooping of the eyelid, redness or tearing of the eye, or running or stuffiness of the nostril. These attacks are shorter than migraine attacks, lasting from 15 minutes to three hours.

Though we have learned a lot about cluster headache, there is still a lot that is not understood. This is due to limited and incomplete data. To help fix this, over 1,600 people with cluster headache participated in the International Cluster Headache Questionnaire (CHQ).

CHQ was an online international survey from March 2016 to April 2018. It included questions about the demographics of cluster headache, medications and criteria from the International Classification of Headache Disorders (ICHD). The questionnaire was designed to study data among a large, non-healthcare population with cluster headache. It was also used to acknowledge the diagnoses of cluster headache in children.

Study Format and Demographics

The survey’s questions were divided into sections, including: symptoms, who is affected, experience and treatment. Some of the most alarming information to come out of the study was on the diagnosis of cluster headache in children.

Early signs of cluster headache in children were found in 27.5% of participants, but only a small percent (15.2%) of that group was diagnosed before the age of 18. Early signs in children are defined as experiencing cluster headache attacks before age 18. The research team hypothesized that there was a delay in diagnosis for patients with pediatric-onset but not for patients with onset 50 years old and older.

There were four basic demographic characteristics: age of onset, diagnostic delay, gender and family history of cluster headache. Each characteristic was studied to find trends for cluster headache in children, as well as cluster headache in patients 50 years old or older, females, and family history.

Though most participants were male, there was a significantly higher number of female participants who have chronic cluster headache, higher pain intensity, higher depression score, more nausea/vomiting, and more aggravation with movement.

Cluster Headache Study Observations and Conclusions

The study produced more data on cluster headache but it had several limitations. For one, only 5% of the participants were interviewed by a headache specialist. Many patients are diagnosed with cluster headache but may have a different headache disorder. Another limitation was the grouping of medications without considering the number of doses and how preventative medications could cause changes in headache features.

The study showed that cluster headache often begins during childhood but is not diagnosed until adulthood. Participants who experienced early signs as children had more than twice the delay in diagnosis. This means that many children suffer in silence with cluster headache for years before receiving the care they need. The data also showed that cluster headache is more common in men between the ages of 10-50. And chronic cluster headache appears to be more resistant to some first-line treatments.

This study allows further insight and understanding to cluster headache and will help provide earlier diagnosis and better treatment. If you have cluster headache, remember that you are not alone. There are many resources you can access for support and information.

To read the full study, please click here.

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Reviewed for accuracy by the American Migraine Foundation’s subject matter experts, headache specialists and medical advisers with deep knowledge and training in headache medicine. Click here to read about our editorial board members.