Female cluster headache in the United States of America: what are the gender differences? Results from the United States Cluster Headache Survey.

OBJECTIVE: To present results from the United States Cluster Headache Survey regarding gender differences in cluster headache demographics, clinical characteristics, diagnostic delay, triggers, treatment response and personal burden.
BACKGROUND: Very few studies have looked at the gender differences in cluster headache presentation. The United States Cluster Headache Survey is the largest study of cluster headache sufferers ever completed in the United States and it is also the largest study of female cluster headache patients ever presented.
METHODS: The total survey consisted of 187 multiple choice questions which dealt with various issues related to cluster headache including: demographics, clinical characteristics, concomitant medical conditions, family history, triggers, smoking history, diagnosis, treatment response and personal burden. A group of questions were specifically targeted to female cluster headache patients. The survey was placed on a website from October to December 2008. For all survey responders the diagnosis of cluster headache needed to be made by a neurologist but there was no validation of the headache diagnosis by the authors.
RESULTS: 1134 individuals completed the survey (816 male, 318 female). Key Points that define the differences between female and male cluster headache include: a. Age of onset: women develop cluster headache at an earlier age than men and are more likely to develop a second peak of cluster headache onset after 50 years of age. b. Family history: woman cluster headache sufferers are more likely to have a family history of both cluster headache and migraine and have an increased familial risk of Parkinson's disease. c. Comorbid conditions: female cluster headaches sufferers are significantly more likely to experience depression and have asthma than males. d. Aura issues: aura with cluster headache is equally common in both sexes, but aura duration is shorter in women. Women are much more likely to experience sensory, language and brainstem auras. e. Pain location: cluster headache pain is typically retro-orbital in location in both sexes but women are significantly more likely to experience cluster headache pain in the jaw, cheek and ear than men. f. Associated symptoms: women with cluster headache develop more “migrainous” associated symptoms than men, especially nausea and they are also more likely to have self-injurious behavior than men. g. Triggers: women with cluster headache are much less likely to have alcohol trigger a headache, but are significantly more likely to have “migrainous” triggers for their cluster headaches than men. h. Smoking issues: women are much less likely to have a smoking history than male cluster headache sufferers, more likely to have never smoked prior to cluster headache onset. i. Cycle issues: spring and fall are the most common time to start a cluster headache cycle in both sexes. Women are statistically significantly less likely to start a cluster headache cycle in the months of October–December than men. Women have more attacks per day and higher pain intensity nighttime attacks than men. j. TREATMENT: in regard to acute treatment women statistically were less response to sumatriptan injectable and nasal spray than men, but statistically more likely to respond to inhaled lidocaine. There was equal efficacy in the sexes to inhaled oxygen but slower response in women. For preventive treatment no significant gender differences were noted, but overall women were less responsive to almost all preventives than men. k. Diagnostic delay: there remains a significant diagnostic delay for cluster headache patients in both sexes but women were more likely to be diagnosed after 10 years of symptom onset than males and significantly fewer women were diagnosed correctly at an initial physician visit than men. l. Female specific issues: cluster headache does not appear to be influenced by menses or menopause but 50% of the survey responders stated their headaches improved with pregnancy. Cluster headache does not appear to alter fertility rates in female cluster headache sufferers. m. Personal burden: cluster headache causes significantly more personal burden in women than men with more loss of employment and/or need of disability, as well as more homebound days.
CONCLUSION: Overall women and men with cluster headache have a similar presentation but there are some distinct differences that have been suggested in smaller studies of female cluster headache that we have now verified, while some of our study conclusions have not been shown previously. One major limitation to the study is a lack of validation of diagnosis. A substantial false positive cluster headache diagnosis rate, especially in females, cannot be excluded by the study methods utilized.