Self-awareness of migraine: interpreting the labels that headache sufferers apply to their headaches

Although people with migraine are aware of their headaches they are often not aware that they have migraine. This can lead to inappropriate or ineffective use of treatments, delays in seeking appropriate care, and miscommunication during clinical encounters. This article assesses self-recognition of migraine and identifies terms used by migraine sufferers to describe their migraine headaches. Individuals were selected for telephone interview by random digit dialing in several large United States cities as a part of a clinical trials recruiting initiative. Individuals (n = 30,758) aged 18 to 65 years of age were interviewed about their headaches using a validated computer-assisted telephone interview. Among the 23,564 respondents who reported headache, their headaches were classified as migraine (with or without aura) by the criteria of the International Headache Society (IHS). The relationships among the terms subjects used for their headaches and their IHS diagnosis of migraine were assessed. Of the 23,564 respondents, 4,967 individuals called their headache migraine and 3,074 individuals reported headache that met the IHS criteria for migraine. The positive predictive value for self-assessed migraine is 33.1%; the negative predictive value for a self-assessment other than migraine is 92.3%. Therefore, individuals who called their headaches migraine were about three times more likely to meet IHS criteria for migraine. Among the 3,074 individuals meeting IHS criteria for migraine, only 53.4% recognized their headaches as migraine (sensitivity 54%; specificity 83.8%). Among migraineurs, stress headaches (n = 345) and sinus headaches (n = 365) were the most common erroneous labels reported. Age influenced the erroneous terminology. Individuals less than 40 years of age were more likely to misidentify their migraine as stress headaches, whereas individuals 40 years of age and older were more likely to misidentify their migraines as sinus headaches. In a population sample, 54% of individuals with IHS migraine did not know that their headaches are migraine. Those who called their headaches migraine were much more likely to have migraine. Migraine awareness programs that rely solely on the term "migraine" may miss individuals who urgently need to be reached. Therefore, public education should target people with severe or disabling headache and aim to create awareness of the diagnostic possibilities.