Diagnostic delay and suboptimal management in a referral population with hemicrania continua

To investigate a clinical population of patients with hemicrania continua (HC), looking at the diagnostic problems they have encountered and their use of healthcare resources and at issues relating to the effectiveness of treatments.

We directly interviewed 25 patients fulfilling the International Classification of Headache Disorders, 2nd edition diagnostic criteria for HC selected among 1612 subjects attending the INI Grottaferrata Headache Clinic over a 3-year period.

No patient had received a correct diagnosis before being seen at our headache clinic. In total, 85% of the patients consulted a physician within 5 months of the onset of the symptoms but mean time to diagnosis was 5 years (SD 4.9). The average number of physicians seen before the condition was properly diagnosed was 4.6 (SD 2.2). General practitioners (100%), neurologists (80%), ear, nose, and throat surgeons (44%), ophthalmologists (40%), and dentists (32%) were the physicians most commonly consulted. All the patients had previously received an incorrect diagnosis. Migraine (52%), CH (28%), sinus headache (20%), and dental pain (20%) were the most common wrong diagnoses reported. Some 36.0% of patients had undergone ineffective invasive treatments. The patients had tried, on average, 3.6 (SD 2.1) classes of drugs. Nonsteroidal anti-inflammatory drugs (NSAIDs) (92%), triptans (32%), antidepressants (32%), and antiepileptics (24%) were the most commonly used. Patients rated 73.7% of medications as ineffective, 22.5% (all NSAIDs) as partially effective, and 3.7% (rofecoxib and nimesulide) as effective.

Hemicrania continua may be misdiagnosed and mistreated even by neurologists. There is a need for greater awareness and understanding of this condition.