A highly trafficked social media forum is yielding new findings on migraine symptoms, according to clinical researchers from the Montefiore Headache Center and Albert Einstein College of Medicine.  A new report, “Special sensory experiences in migraine: a social media study,” reveals important disease epidemiology on migraine experiences like olfactory hallucinations, which may not be uncovered during traditional doctor/patient communications. Data from this study will be presented at the 58^th Annual Meeting of the American Headache Society (AHS) being held June 9 – June 12 in San Diego. 

Migraine ranks in the top 20 of the world’s most disabling medical illnesses, yet is underreported. While hallucinations around certain odors, noises and tastes have been known to occur during a migraine, these symptoms are not included in the International Headache Society classification. To garner more insights into these manifestations, researchers at Montefiore and Einstein tapped The Daily Migraine, a consumer-facing online forum to query 678 respondents through Facebook, Instagram and Twitter three times over three weeks, revealing new insights about experiences with certain tastes, sounds or smells in association with migraine attacks. Queries around olfactory hallucinations, most notably unpleasant smells like cigarette smoke and animal scents were what those with migraine most searched online. Queries also revealed ringing as the predominant migraine-associated sound. Unpleasant tastes, specifically a metallic taste, were also commonly searched.

“As researchers we have only scratched the surface of the depth of patient experience and disease information we can glean from social media channels,” said Matthew S. Robbins, M.D., FAHS, study author and director, Inpatient Services, Montefiore Headache Center, chief of Neurology, Jack D. Weiler Hospital and associate professor of Clinical Neurology, Einstein. “Using social media as a research tool, we learned more about migraine symptoms and what should be included during intake evaluations.”

The magnitude of migraine disability on everyday life causes missed work days, missed opportunities and events spent among family and friends, and can undermine the emotional, social and financial fabric of a family. A recent report published in Mayo Clinic Proceedings, from the Chronic Migraine Epidemiology and Outcomes (CaMEO) Study, found that approximately 41% of people with migraine and 23% of spouses stated that they believed those impacted by migraine would be better parents if they did not have migraine, which consequently led to half of migraineurs missing at least one family activity in the past month.

“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,” said Cynthia Armand, M.D., study author and chief resident, Department of Neurology, Montefiore and Einstein. “For individuals affected by these neurological diseases, an online site may provide more anonymity and a community, making it a safe place to be open and honest without fear of being judged or marginalized.”

This research will be presented during the AHS "Future of Headache Medicine" session on Friday, June 10.