Tweeting a killer migraine in real time

Tweeting a killer migraine in real time
Migraine sufferers post their pain on Twitter
(Steve McAfee / / For The Times)

Not even the pain of a migraine headache keeps people from Twitter. (Just 67 characters.)

Over the course of a week, students collected every tweet that mentioned the word migraine. Once they cleared out the ads, the retweets and the metaphorical uses of the word, they had 14,028 tweets from people who described their migraine headaches in real time — with words such as “killer,” “the worst” (almost 15% of the tweets) and the F-word.


The Twitter users also reported the repercussions from their migraines:  missing school or work, lost sleep, mood changes.

The researchers found the information to be “a powerful source of knowledge” about the headaches, because usually sufferers are providing information after the fact in clinical situations.


“The technology evolves, and our language evolves,” Dr. Alexandre DaSilva, an assistant professor at the University of Michigan School of Dentistry and lead author of the study, said Wednesday by phone. Clinical researchers’ language — such as “throbbing” or “pulsating” — might not be as apt today, to “the generation that grew up with video games.”

In the study, published Wednesday in the Journal of Medical Internet Research, DaSilva and his colleagues and students conducted a laborious effort: In spring 2011, they collected every tweet for a week, 21,741 of them. Once they eliminated ads and others not from sufferers, they sorted the remaining 14,028 into categories based on the sort of information that was revealed.

Nearly three-quarters of the tweeters were female; two identified themselves as transgender. They used 242 descriptive words, but some were common — “horrible,” “killing,” “pounding” and “splitting” among them. The researchers also found patterns in the timing of tweets, with the peaks coming Monday morning and evening.

DaSilva said he was astonished by the trove of information.


“I was surprised, and I believe that social media is also a relief for them. To kind of share, I’m suffering here. … ‘I am leaving work early, this migraine is killing me,’” he said. “I believe it gives some kind of relief to share the pain, and that provides so much information we don’t usually get.”

“The more you connect with your patient, the better you can treat them,” he said.

Migraines affect about 12% of adults in the Western world; about 90% of sufferers say their pain is moderate to severe, and 75% say their ability to function is reduced. Nearly a third require bed rest.



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