Researchers from Montefiore Headache Center and Albert Einstein College of Medicine presented results from a crowdsourcing study at the American Headache Society’s 58th Annual Scientific Meeting in San Diego, CA.
The researchers argued that despite being common in migraineurs, “special sensory experiences” were rarely screened for in intake questionnaires or epidemiological surveys, and largely overlooked in the scientific literature. They also hypothesized that stigma associated with such experiences may prevent reporting by patients, but that the use of social media for information gathering would be more likely to engage migraineurs.
In an effort to determine whether such events were associated with migraine attacks, researchers reached out to migraineurs through the Daily Migraine, a consumer-oriented online forum on which followers are asked daily to answer a question relating to migraine symptoms or treatments. Participants were asked to list migraine-associated symptoms elicited by sensory experiences (tastes, sounds, and smells) over a period of 3 weeks, 3 times per week.
A total of 678 responses across 3 social media platforms (Facebook, Instagram, and Twitter) were gathered. Olfactory hallucinations were the most commonly reported (n=5310), with a majority of unpleasant smells (64%), including cigarette smoke (12%), animal scents (7%), and cleaning products (6%); pleasant smells were also experienced (20%), with food aromas (17%), perfume (4%), and flora (2%).
Auditory hallucinations (n=5224) mostly consisted of ringing sounds (40%), buzzing (6%), and music (5%). Gustatory hallucinations were the least common (n=5144), with a majority of unpleasant tastes (83%), with 12% experiencing blood taste and 5% food-associated tastes.
The majority of these hallucinations were experienced concomitantly with migraine attacks, and for their whole duration.
Researchers argue that this social media study warrants the need for wider-scale epidemiological surveys as well as modified intake questionnaires including sensory hallucinations.
Armand CE, Jacobson L, Robbins MS. Abstract PF32. Special sensory experiences in migraine: A social media study. Presented at: 2016 American Headache Society Annual Meeting. June 9-12, 2016; San Diego, CA.
This article originally appeared on Clinical Pain Advisor