OUtcome and Clinical Characteristics of Primary Headache in Patients with Sarcoidosis: The OUCH! Study

Headache is a frequent but often underestimated complaint in patients with sarcoidosis. In clinical practice, headache is commonly interpreted as secondary to neurosarcoidosis, potentially overlooking the presence of primary headache disorders, particularly migraine. The prevalence and clinical relevance of migraine in sarcoidosis remain insufficiently characterized.

To investigate the prevalence and clinical characteristics of migraine in patients with sarcoidosis and to explore its association with pulmonary functional outcomes.

The OUtcome and Clinical characteristics of primary Headache in patients with Sarcoidosis (OUCH!) Study is a multicenter, retrospective, observational study including adult patients evaluated at pulmonology outpatient clinics and headache centers between January 2019 and January 2021. Demographic, clinical, radiological, and pulmonary function data were collected. Patients were stratified according to the presence or absence of migraine. Pulmonary function parameters were compared using non-parametric statistical tests.

Seventy-two patients with sarcoidosis were included; 21 (29.2%) were diagnosed with migraine. Migraine prevalence was higher than expected for the general population. Pulmonary involvement was the most frequent disease manifestation. Patients with migraine showed significantly lower DLCO values compared with those without migraine (median (IQR): 55 (40-70) vs. 78 (65-90); p = 0.0009). No significant differences were observed in spirometric parameters or radiological patterns between groups.

Migraine is a common comorbidity in sarcoidosis and is associated with reduced DLCO, suggesting a link with greater functional disease burden rather than structural lung damage. Migraine should be recognized as a primary headache disorder in this population, rather than automatically attributed to neurosarcoidosis. These findings support a multidisciplinary, patient-centered approach and warrant prospective studies to clarify shared inflammatory, vascular, and neuroimmune mechanisms.