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The Misdiagnosis of Cluster Headache
Posted July 2000

Objective: To conduct the first non-clinic based survey of cluster headache (CH) sufferers, to investigate the population of CH with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payors, and symptoms as they relate to IHS criteria for CH.

Design: An Internet survey of 72 questions designed for CH sufferers using the website www.clusterheadaches.com. 789 responses (76% male and 24% female) were collected over two months.

Background: This is the largest, non-clinic based survey of CH and the first since the publication of the IHS criteria in 1988.

Results: Eighty-three percent of survey respondents qualified as CH sufferers according to IHS criteria. However, diagnosis was delayed an average of 6.6 years from onset of symptoms. The average 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 percent of respondents had undergone unnecessary MRI's or CT scans and four percent had unnecessary sinus or deviated septum surgery. We found that inappropriate medications such as propanolol, amitriptyline, and antibiotics were prescribed and that successful medications for CH such as Imitrex and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers which correlates with previously published data. Seventy-four percent stopped smoking in an attempt to improve their condition, however, only 3% experienced relief.

Conclusion: Because of the delay in diagnosis in this population, patients are undergoing unnecessary radiologic and surgical procedures and being prescribed inappropriate medication. Using IHS criteria, these patients could have been correctly diagnosed at the onset of symptoms.