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
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.