The location of pain in cluster headache: Data from the International Cluster Headache Questionnaire

• Published in: Headache 2024-07, Vol.64 (7), p.783-795
• Main Authors: Schor, Larry I., Pearson, Stuart M., Castro Sousa, Bruno, Ettore, Uilvim, Rohrer, Ualas, Gu, Yuxuan, Wu, Hulin, el‐Dahdah, Fares, Shapiro, Robert E., Kaas, Jon H., Burish, Mark Joseph
• Format: Article
• Language: English
• Subjects: Brain mapping; Brain stem; cluster headache; Clusters; Cortex (parietal); Criteria; Effectiveness; facial map; Headache; Headaches; Hypothalamus; Meta-analysis; Nerves; Neuroimaging; Occipital lobe; Pain; Polls & surveys; primary somatosensory cortex; Questionnaires; secondary somatosensory area; Somatosensory cortex; Surveys; Temporal lobe; Thalamus; ventral posterior nucleus of the thalamus
• ISSN: 0017-8748; 1526-4610; 1526-4610
• DOI: 10.1111/head.14766

Objective To identify the most common locations of cluster headache pain from an international, non–clinic‐based survey of participants with cluster headache, and to compare these locations to other cluster headache features as well as to somatotopic maps of peripheral, brainstem, thalamic, and cortical areas. Background Official criteria for cluster headache state pain in the orbital, supraorbital, and/or temporal areas, yet studies have noted pain extending beyond these locations, and the occipital nerve appears relevant, given the effectiveness of suboccipital corticosteroid injections and occipital nerve stimulation. Furthermore, cranial autonomic features vary between patients, and it is not clear if the trigeminovascular reflex is dermatome specific (e.g., do patients with maxillary or V2 division pain have more rhinorrhea?). Finally, functional imaging studies show early activation of the posterior hypothalamus in a cluster headache attack. However, the first somatosensory area to be sensitized is unclear; the first area can be hypothesized based on the complete map of pain locations. Methods The International Cluster Headache Questionnaire was an internet‐based cross‐sectional survey that included a clickable pain map of the face. These data were compared to several other datasets: (1) a meta‐analysis of 22 previous publications of pain location in cluster headache (consisting of 6074 patients); (2) four cephalic dermatome maps; (3) participants’ survey responses for demographics, autonomic features, and effective medications; and (4) previously published somatotopic maps of the brainstem, thalamus, primary somatosensory cortex, and higher order somatosensory cortex. Results One thousand five hundred eighty‐nine participants completed the pain map portion of the survey, and the primary locations of pain across all respondents was the orbital, periorbital, and temporal areas with a secondary location in the lower occiput; these primary and secondary locations were consistent with our meta‐analysis of 22 previous publications. Of the four cephalic dermatomes (V1, V2, V3, and a combination of C2‐3), our study found that most respondents had pain in two or more dermatomes (range 85.7% to 88.7%, or 1361–1410 of 1589 respondents, across the four dermatome maps). Dermatomes did not correlate with their respective autonomic features or with medication effectiveness. The first area to be sensitized in the canonical somatosensory pathway is either a subcorti