Self-awareness of migraine:
Interpreting the labels that headache sufferers apply to their headaches
Authors: Lipton, RB; Stewart, WF; Liberman, JN
Source: Neurology, 2002; 58 (9 suppl 6):S21-S26
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 are, and miscommunication during clinical encounters.
Migraine is underdiagnosed and undertreated even among individuals with substantial disability. A recent population-based study in the United States suggests that more than half of migraineurs meeting the International Headache Society (IHS) criteria have never received a medical diagnosis of migraine.
The authors of this article have sought to assess self-recognition of migraine and identify terms used by migraine sufferers to help describe their migraine headaches.
Among 23,564 people surveyed who reported headache, 4,967 individuals called their headache a migraine, and 3,074 reported headache that met the (IHS) criteria for migraine. Among the 3,074 individuals meeting IHS criteria for migraine, only 53.4% recognised their headaches as migraine. Among these migraineurs, stress headaches and sinus headaches 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.
The authors ask why do nearly half the people with migraine in a large population study use a term other than migraine to characterise their headaches?
Migraine is a medical terms used by clinicians to label a particular headache disorder. Migraine sufferers are aware of their symptoms; and in this study the authors relied on their symptom reports to assign an IHS-based diagnosis. However, migraine sufferers may not be aware of the diagnostic significance of their symptoms. In addition, self-reported diagnosis may be influenced by prior clinical diagnosis.
Results from the American Migraine Study II suggest that about 17% of migraine sufferers in the United States have received and report a medical diagnosis of sinus or tension-type headache, but not migraine. Thus, some individuals who used other labels for their headaches may have been echoing the terms used by health-care providers. Some individuals in this study undoubtedly received an accurate medical diagnosis of sinus or tension-type headache, and later perhaps developed migraine.
Finally, we asked individuals what they called their most severe type of headache. It is possible that individuals may call headaches they know to be migraine by another name, although this is unlikely to be common.
One should also consider why sinus is the most common label mistakenly used for migraine, particularly by those aged 40 years or older. It seems possible that people may be confused by the location of the headache. Because the sinuses are close to the eyes, reasonable individuals may attribute headaches located in the frontal, supraorbital, or infraorbital region to the sinuses. A study presented by Cady and Schreiber confirms that the recognition of migraine in individuals self-identified as sinus headache is problematic.
Lastly, advertisements for over-the-counter products for sinus headaches may have reinforced the incorrect belief that pounding headaches in these locations are always sinus headache.
The authors state that migraine awareness programs that rely solely on the term “migraine” may miss individuals who urgently need to be reached. Public education should target people with severe or disabling headache and aim to create awareness of the diagnostic possibilities.
