Characteristics of patients with cluster headache presenting to a tertiary headache center: A cross-sectional study

Aim Cluster headache (CH) is often underdiagnosed and improperly treated. We explored the characteristics of CH patients referred to our tertiary headache center and compared them to patients with migraine and tension-type headache (TTH). Methods This cross-sectional study was conducted at the Headache Center of the Charité – Universitätsmedizin Berlin from December 2015 to January 2023. We collected data on headache characteristics, comorbidities, prior treatments, and treatment recommendations from the doctor's letter generated after their first consultation. Patient-Reported Outcome Measures were assessed using the Headache Impact Test, the Depression, Anxiety and Stress Scale 21, and the Short Form 12. We compared characteristics of patients diagnosed with CH to those with migraine and TTH, matched for age, sex, and body mass index. Results From the overall cohort of 1468 patients (mean age 43 ± 14 years; 75% women), 56 patients (mean age 44 ± 9 years; 23% women) were diagnosed with CH. Among these 56 patients, 54% ( n = 30) were diagnosed with chronic CH. Although 84% were correctly diagnosed before referral, 34% lacked first-line acute treatment, and 55% had not received guideline-recommended preventive medication. Compared to patients with migraine, patients with CH had a shorter disease duration from onset to referral (5.5 [7.3] years vs. 20.0 [21.0] years, p < 0.001). Smoking and illicit drug use were significantly more frequent among patients with CH ( p < 0.001 and p < 0.05 for the comparison with migraine and TTH, respectively), but not the rate of manifest cardiovascular diseases. Patient-Reported Outcome Measures scores did not differ significantly. Conclusion Both acute and preventive treatment in patients with CH remains inadequate at primary and secondary care levels. The high prevalence of chronic CH suggests a high threshold for referral to specialized centers.