Diagnostic and therapeutic trajectory of cluster headache patients in Flanders

A fraction of cluster headache (CH) patients face diagnostic delay, misdiagnosis, undertreatment and mismanagement. Specific data for Flanders are warranted. Data on CH characteristics, diagnostic process and treatment history were gathered using a self-administered questionnaire with 90 items in CH patients that presented to 4 neurology outpatient clinics. Data for 85 patients (77 men) with a mean age of 44 years (range 23-69) were analysed. 79% suffered from episodic CH and 21% from chronic CH. A mean diagnostic delay of 44 months was reported. 31% of patients had to wait more than 4 years for the CH diagnosis. 52% of patients consulted at least 3 physicians prior to CH diagnosis. Most common misdiagnoses were migraine (45%), sinusitis (23%), tooth/jaw problems (23%), tension-type headache (16%) and trigeminal neuralgia (16%). A significant percentage of patients had never received access to injectable sumatriptan (26%) or oxygen (31%). Most prescribed preventative drugs after the CH diagnosis were verapamil (82%), lithium (35%), methysergide (31%) and topiramate (22%). Despite the CH diagnosis, ineffective preventatives were still used in some, including propranolol (12%), amitriptyline (9%) and carbamazepine (12%). 31% of patients had undergone invasive therapy prior to CH diagnosis, including dental procedures (21%) and sinus surgery (10%). Despite the obvious methodological limitations of this study, the need for better medical education on CH is evident to optimize CH management in Flanders.