Crowdsourcing to Better Understand Migraine

Crowdsourcing For Migraine

The International Headache Society1 offers a comprehensive resource to help physicians reach accurate diagnoses for primary (including migraines) and secondary headaches, as well as cranial neuralgia, facial pain and other headaches. Yet, despite the seemingly exhaustive classification offered by this platform, migraine-associated olfactory, auditory or gustatory hallucinations are not included.

Researchers from Montefiore Headache Center and Albert Einstein College of Medicine presented results from a crowdsourcing study2 at the American Headache Society’s 58th Annual Scientific Meeting3 in San Diego, CA. Scientists 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 Migraine4, 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%), 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. 


1.The International Headache Society

2. 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.

3.The American Headache Society’s 58th Annual Scientific Meeting

4.The Daily Migraine