Restlessness in cluster headache: Rethinking a classic feature through behaviorally-anchored assessment

AimRestlessness/agitation is a formal diagnostic feature of cluster headache (CH), but whether it is identified may depend on which attack-related behaviors are specifically asked about. We aimed to compare the proportions of participants meeting different behavior-based definitions of restlessness/agitation. We also examined whether participants reporting rolling/rocking on bed or floor without an urge to move, pacing/walking, or sitting restlessness had longer delay to first CH awareness.MethodsWe conducted a cross-sectional online survey with an embedded telephone validation substudy within the Chinese Online Registry for Cluster Headache, a patient-community registry in China. Adults with self-reported definite or suspected cluster headache were recruited from two long-standing WeChat patient-support communities in late 2025. After prespecified screening, quality-control procedures, and International Classification of Headache Disorders, 3rd edition (ICHD-3)-based case ascertainment, the final analytic cohort comprised 366 participants. Recognition delay was defined as the interval from first CH symptom onset to first CH awareness. Readily recognized restlessness/agitation comprised an urge to move, pacing/walking, or sitting restlessness; hidden supine-dominant restlessness/agitation comprised rolling/rocking on bed or floor in the absence of an urge to move, pacing/walking, or sitting restlessness. Together, these categories formed the primary behaviorally-anchored restlessness/agitation definition. Extreme self-directed attack-related behaviors were additionally included in a broader exploratory category. Among participants meeting the primary definition, multivariable median regression estimated the adjusted median difference in recognition delay between hidden supine-dominant and readily recognized restlessness/agitation.ResultsThe proportion meeting the readily recognized definition was 202/366 (55.2%), compared with 279/366 (76.2%) under the primary behaviorally-anchored definition; the broader exploratory category included 305/366 participants (83.3%). Among participants meeting the primary behaviorally-anchored definition, hidden supine-dominant restlessness/agitation (n = 77) was associated with longer recognition delay than readily recognized restlessness/agitation (n = 202) before adjustment (median 9.0 vs 7.0 years; P = 0.006) and after adjustment (+3.40 years, 95% CI 1.86 to 4.94; P < 0.001). Among 56 interviewed participants eligible under the final cohort criteria, the positive predictive value for definite CH was 98.2% (55/56; 95% CI, 90.4-100.0).ConclusionIn this online patient-community registry, asking specifically about rolling/rocking on bed or floor identified additional participants who did not report readily recognized components of restlessness/agitation. This response pattern was associated with longer recognition delay. For patients who lie down during an attack, clinicians should ask: "When you lie down during an attack, can you actually remain still?" The clinical value of this question should be evaluated prospectively in clinician-assessed cohorts.