Errors in Recognition and Management are Still Frequent in Patients with Cluster Headache

Abstract

Objectives: To analyze the trajectory to diagnosis and information provided in a series of cluster headache (CH) patients from five headache clinics. Methods: CH patients were asked to fill in an ad hoc questionnaire. Results: Seventy-five patients (mean age 41.5 years, 67 males) completed the questionnaire. Patients had visited during an average of 4.9 years a mean of 4.6 physicians who had obtained 2.5 neuroimaging procedures per patient before getting a diagnosis of CH. Sixty-three (84%) had received no diagnosis (21 cases; 28%), while 43 (57%) had been given an average of 2.1 alternative diagnoses. Migraine, trigeminal neuralgia and sinusitis were the most frequent mistakes. After diagnosis, 55% had subjectively received poor/very poor information on CH. Ninety-five percent had poor or incorrect information about the nature of the disease, or acute (70%) and preventive (61%) treatments. Etiology (90%), management options (36%) and potential adverse events of medications (29%) were their main information demands. Conclusions: Although CH is an invalidating and clinically clear-cut disorder suffered by around 1/1,000 people, it is still frequently unrecognized and/or mistaken for other disorders, which calls for a better knowledge and education in the diagnosis of the main primary headaches.

Living With Cluster Headache: A Qualitative Study of Patients’ Perspectives

“…In our study, patients feel that physician unawareness of CH is widespread; this is consistent with the 57% rate of misdiagnosis reported by S anchez Del Rio et al 26 Patients are also illinformed about the nature of their disease (95%), the therapeutic options available (36%) and their possible adverse effects (29%). Voiticovschi-Iosob et al 27 reports that CH patients have often seen other specialists prior to diagnosis -77% are given a wrong diagnosis on first consultation, sometimes because of coexistence with another primary headache.…”

Systematic literature review on the delays in the diagnosis and misdiagnosis of cluster headache

“…This further supports the need for timely diagnosis and initiation of evidence-based treatments, and patient education. The evidence suggests that even after the correct diagnosis is reached, some patients received poor or incorrect information about the nature of their disability [18]. Suboptimal management is not limited to the cluster headache sufferers since most headache patients are undertreated, hence the importance of headache centres and promoting education of GPs [32].…”

Cluster headache and other TACs: Pathophysiology and neurostimulation options

“…Another clinical landmark of the syndrome is circadian rhythmicity and timing of attacks seems to be related to the sleep‐wake cycle . Although CH is a validated and clinically clear‐cut disorder, it is still frequently unrecognized and/or mistaken for other disorders . In the episodic form, attacks occur daily for 1 week to 11 months followed by a period of remission of 1 month or longer.…”