Thursday, February 14, 2008

thoughtful public discussion of migraine disease

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When NPR Talk of the Nation host Neal Conan asked guest Siri Hustvedt if she'd coined a new word by her use of the term "migraineur" during an interview on Tuesday, I was yet again reminded of the chasm that lies between those whose lives are ruled by migraine disease and people who discuss it in the news.

His question made me laugh. How could the brilliant Neal Conan be unacquainted with a word I use nearly every day? A word that defines who I am? I kid, but I like to think that moment illustrated the clear divide that generally exists between people who live this and everybody else. It's so easy to forget that most people know very little about migraines.

As has been reported by many other bloggers, the New York Times recently started a migraine blog. To say it has an impressive pedigree is an understatement. In addition to writer and migraineur Hustvedt, other contributors include Oliver Sacks, singer / songwriter Jeff Tweedy (insert fangirl squee here) and gifted writer and chronic headache sufferer Paula Kamen.

Two of the blog's contributors, Hustvedt and Kamen, appeared as guests on NPR's Talk of the Nation program Tuesday afternoon. They were joined by Joel Saper, founder and director of the Michigan Head Pain and Neurological Institute. What transpired was a thoughtful public discussion about why migraines are more than headaches and what life is like for the more than 28 million migraineurs in this country.

Instead of wasting time rehashing well-known strategies for treating or preventing migraines (Do we really need another story on elimination diets?), Conan and his guests delved into the behind closed doors experiences shared by those whose bodies and spirits are burdened by this cruel, demoralizing disease.

There was talk of the difficulty of finding that one elusive pill that might finally prevent some of our migraines despite our willingness to try anything presented as a viable option. There was talk of the ways we connect with each other through these blogs and support sites to try to make sense of our suffering and find (and give) comfort.
There was talk about the fact that migraines are a neurological condition, not just pain in the head. There was even talk of balancing hope with acceptance, one of my greatest personal challenges and something I have often discussed with others of you who struggle with it, too.

Make no mistake. There was a caller who seemed judgmental about the use of prescription drugs to treat or prevent migraines; other calls smacked of that "Try this! It worked for me!" spirit. But I thank NPR for being so careful about choosing its guests. Their knowledge and openness guided the tone and content of the segment into a great place.

I implore you to listen to the NPR segment and visit the NY Times migraine blog for what promises to be some of the best writing on the experience of living with chronic headaches since Kamen's brilliant book "All In My Head." By the way, Kamen's book is a must-read, too.

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