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Tweets from migraine sufferers carry lessons for doctors

By McClatchy News Services

POSTED:
LAST UPDATED: 01:51 a.m. HST, May 06, 2014



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 re-tweets and the metaphorical uses of the word, they had 14,028 tweets from people who described their headaches in real time — with words such as "killer," "the worst" (almost 15 percent of the tweets) and the F-word.

The Twitter users also reported the repercussions from their migraines: missed 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 provide information after the fact in clinical situations.

"The technology evolves and our language evolves," said Dr. Alexandre DaSilva, an assistant professor at the University of Michigan School of Dentistry and lead author of the study.

Clinical researchers' language — such as "throbbing" or "pulsating" — might not be as apt today to "the generation that grew up with video games." Their vocabulary, he said, often reflects those games, with words such as "killer," "splitting" or "pounding."

In his study, published recently in the Journal of Medical Internet Research, DaSilva and his colleagues and students collected 21,741 tweets with the word migraine, keeping 14,028 of them and sorting them into categories based on the sort of information 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.

On a recent day the tweets included "splitting migraine :)" and "Took 6 ibuprofen in 45 minutes and I still have this damn migraine."

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 added.

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

Mary MacVean, Los Angeles Times






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