Interictal Burden of Cluster Headache Greatly Affects Disease Burden and Quality of Life

Man with headache
Man with headache
Survey findings suggest that cluster headache attacks can negatively affect an individual’s career, education, and social life.

Survey findings suggest that cluster headache attacks can negatively affect an individual’s career, education, and social life, and the interictal burden of cluster headache appears to contribute to the total burden of the disease and its effect on quality of life. Findings from the study were reported in Headache.

Researchers conducted a cross-sectional, internet-based study that included individuals from Europe with a self-reported diagnosis of cluster headache (n=1514). A survey based on the EUROLIGHT questionnaire was administered and completed by all patients. The online survey included questions that assessed symptoms and treatments of cluster headache and excluded questions for diagnosing migraine and tension-type headache. In addition, the survey included questions regarding interictal burden associated with cluster headache in order to assess interictal freedom from symptoms, anxiety, avoidance behavior, self-concealment, and cumulative burden.

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A total of 306 patients (26.8%) reported chronic cluster headache, represented by a confirmed validity of the diagnosis in 82.7% (n=253) of patients. Further, patients with chronic cluster headache more frequently reported interictal symptoms (odds ratio [OR], 1.81; 95% CI, 1.33-2.47; P =.007). The majority of patients (69.2%) reported being worried or anxious about their next attack, and roughly half of survey respondents (47.8%) reported avoidance behavior to prevent further headache attacks.

Patients who worried about future attacks most often reported avoiding telling others about their disease, which occurred more commonly in patients who worried about future attacks (OR, 1.743; 95% CI, 1.339-2.267; P =.002), as did individuals with more headache days during the last month (P <.001; r = 0.14). Patients who felt their disease was chronic were less likely to indicate that their friends and family understood and accepted their disease (OR, 0.537; 95% CI, 0.390-0.740; P =.007).

Patients who experienced disease onset at age <20 years more often reported that their disease had a negative effect on their education (OR, 3.933; 95% CI, 2.930-5.278; P <.001). In addition, a significant percentage of patients with chronic cluster headache reported that their career had been impaired by their disease (OR, 3.263; 95% CI, 2.344-4.543; P <.001). Individuals with chronic cluster headache also reported a greater interictal burden.

Study limitations included the self-reported nature of the survey, as well as patients’ diagnoses.

The researchers wrote that their findings “emphasize that the suffering of people with cluster headache often does not end when pain subsides,” and that cluster headache “influences and dominates the thoughts and the lives of many persons enduring it.”


Pohl H, Gantenbein AR, Sandor PS, Schoenen J, Andrée C. Interictal burden of cluster headache: Results of the EUROLIGHT cluster headache project, an internet-based, cross-sectional study of people with cluster headache [published online November 25, 2019]. Headache. doi:10.1111/head.13711