The misdiagnosis of cluster headache: A nonclinic, population-based, Internet survey

Objective.-We conducted the first nonclinic, Internet-based survey of clust er headache to investigate this population with regard to diagnostic proble ms encountered, effective and ineffective medications, problems obtaining m edications through third-party payers, and symptoms as they relate to Inter national Headache Society criteria. Background.-Previous cluster headache surveys have been at specialty center s. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache suffe rers who connected to a Web site responded to the questionnaire, and e-mail ed it back to our site to be analyzed. We analyzed a total of 789 responden ts, 76% men and 28% women. Results.-Eighty-seven percent of respondents qualified as having cluster he adache according to International Headache Society criteria. However, diagn osis,vas delayed an average of 6.6 years from the onset of symptoms. The av erage number of physicians seen before the correct diagnosis was made was 4 .3, and the average number of incorrect diagnoses was 3.9. Seventy-one perc ent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitript yline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respond ents were smokers. Seventy-four percent stopped smoking in an attempt to im prove their condition; however, only 3% experienced relief. Conclusions.-The most alarming finding was the delay in diagnosing cluster headache in this population-an average of 6.6 years. The selection of medic ations demonstrated to be successful in the treatment of clusters proved ef fective for the majority of this population. Manly respondents reported bei ng denied some of these effective medications by their physicians or third- party payers. Using International Headache Society criteria for cluster hea dache, 87% of the respondents should have been correctly diagnosed by the f irst physician seen.