Researchers at Montefiore Headache Center and Albert Einstein College of Medicine turned to a highly trafficked social media forum to interact with migraine sufferers and to learn more about less common sensory experiences, such as smell and taste hallucinations — symptoms that may not be discussed during most doctor visits.
Data from the new report will be presented at the 58th Annual Meeting of the American Headache Society (AHS) in San Diego.
Migraine is one of the most painful and debilitating illnesses in the world, and yet it remains widely underreported. While hallucinations around certain odors, noises, and tastes have been known to occur during a migraine, these symptoms are still not included in the International Headache Society classification.
“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.”
To learn about these distinct migraine symptoms, researchers turned to “The Daily Migraine”, a consumer-facing online forum to query 678 respondents through Facebook, Instagram and Twitter three times over three weeks. The questions asked and terms searched by migraine sufferers revealed new insights into these painful attacks, especially regarding hallucinations of tastes, sounds, or smells.
Migraine sufferers commonly asked about olfactory hallucinations, most notably unpleasant smells such as cigarette smoke and animal scents. Queries also revealed ringing as the predominant migraine-related sound. Unpleasant tastes, specifically a metallic taste, were also commonly searched.
Suffering from migraines can be extremely debilitating and can result in many missed school and 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 found that approximately 41 percent of people with migraine and 23 percent of spouses stated that they believed those with migraine would be better parents if they did not have the illness, according to the Chronic Migraine Epidemiology and Outcomes (CaMEO) Study. About half of migraine sufferers reported missing at least one family activity in the past month.
“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.”
Source: Montefiore Health System