Researchers Harness Social Media to Document Previously Underreported Patient Experiences of Migraine

While migraineurs have been known to report certain hallucinations around odors, noises, and tastes in the course of a migraine attack, these symptoms have not thus far been included in the International Headache Society classification. But clinical researchers at Montefiore Headache Center and Albert Einstein College of Medicine are using a popular patient forum on social media to garner more understanding of these manifestations. The team accessed The Daily Migraine to question 678 participants about their experiences with these migraine-related sensations. Olfactory hallucinations such as cigarette smoke and animal scents were observed, as well as ringing sounds and metallic tastes. Data from the study were set for presentation last week as part of the “Future of Headache Medicine” session at the Annual Meeting of the American Headache Society.

Commenting on the report, “Special sensory experiences in migraine: a social media study,” author Matthew Robbins, MD, FAHS, said, “As researchers we have only scratched the surface of the depth of patient experience and disease information we can glean from social media channels. Using social media as a research tool, we learned more about migraine symptoms and what should be included during intake evaluations.” Study author Cynthia Armand, MD, added, “Given the onerous physical and emotional impact of migraine, an online forum is a unique resource to the professional headache community to help us improve how we diagnose, care for and treat headache and facial pain syndromes.”

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Read more about the presentation of findings here.



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