Digital writer, Anna Altman of The New York Times recently wrote an article bringing attention to the “confounding condition.” Here is her article….
When Susanna Styron’s daughter, Emma, was 14, she began to have migraines. Emma would retreat to a dark room and tell her mother to leave her alone. Ms. Styron didn’t know how to react, much less get her daughter the treatment she needed. “I couldn’t touch her or talk to her,” Ms. Styron recalled to Op-Talk. “I was alone, and so in the dark. It would have made such a difference to know that people out there are in the same position, to know who to ask for help.”
Ms. Styron is now the director of an in-progress documentary on migraine called “Out of My Head.” (The film is currently raising funds on Kickstarter through Nov. 23.) But before she realized the severity of her daughter’s condition – that migraine is a chronic neurological disease and a source of chronic pain for as many as 36 million people in the U.S. – she didn’t quite take it seriously. “I thought my god, it’s a headache, stop being such a drama queen,” Ms. Styron recalls. She didn’t realize at the time that it’s not “jut a really bad headache” but a “complete neurological, global, sensory event.” Ms. Styron continues: “I realized in retrospect that I had really not paid her condition the respect that it warranted. It was a huge disservice to her and everyone who gets migraines.”
Migraine is a confounding condition, and one that non-sufferers have a hard time understanding. As Joan Didion wrote about her migraines in a 1968 essay entitled “In Bed,” “For I had no brain tumor, no eyestrain, no high blood pressure, nothing wrong with me at all: I simply had migraine headaches, and migraine headaches were, as everyone who did not have knew, imaginary.” In May 2013, Sallie Tisdale wrote in great depth in Harper’s (subscription required) about her own odyssey to get a diagnosis for a persistent headache that woke her in the night and kept her from eating or being able to concentrate. The neurologists that Ms. Tisdale visited dismissed her concerns about the gnawing pain by telling her she was simply dehydrated.
Migraineurs are often mocked or derided in the public sphere. In 2011, in the midst of running for the Republican party presidential nomination, Michele Bachmann revealed that she suffers from episodic migraines that sometimes force her to seek emergency medical treatment. In response, her opponents questioned whether Ms. Bachmann would be suited to act around the clock as commander in chief. Ms. Bachmann assured doubters that she would, telling a New York Times reporter that her headaches are “easily controlled with medication.”
Seventy-five percent of migraineurs are women, a fact that has impacted its reception. “There’s the cultural history of it being a women’s disease, being a symptom of neuroses or weakness or hysteria,” said Jacki Ochs, the producer of “Out of My Head.” The word “headache” sounds like “a mild kind of quotidian condition,” says Ms. Styron, but in reality it’s anything like that.
But for those who do suffer from migraines, many questions remain unanswered. The difficulty of treating the condition can make migraineurs verbose about triggers, side effect and treatments. Some publications, including this one, have attempted to address that dearth. In 2008, The New York Times briefly ran a blog about migraines, soliciting writers like Oliver Sacks, Siri Hustvedt and Paula Kamen to contribute. There was lots of material – and plenty of readers had substantial questions – but the blog lasted only about a month.
There’s little new research on migraines, and much misunderstanding about the condition. As reported in The Atlantic, a high number of combat veterans return from Iraq and Afghanistan with traumatic brain injuries that cause migraines; these vets have just as hard a time finding relief as any other migraineur. The widespread belief that migraines are caused by certain triggers – foods like cheese, chocolate or red wine, or by stress or changes in weather – may not be true. And Botox, a treatment known as a cure for a wrinkled forehead, has been approved by the Food and Drug Administration for treatment of chronic migraines. Many doctors prescribe it, but no one is sure if it is truly effective.
Cindy McCain, the wife of Arizona Senator John McCain, said in 2009 that she had had enough. She had been engaged in a “silent struggle” against migraines for years, and it was time for her to speak out. She hoped sharing her experience might encourage others to do so and, finally convince Congress to devote funds to research. Speaking on behalf of the American Headache Society in 2009, at an event that Lauren Collins wrote about for a Talk of the Town story in The New Yorker, Ms. McCain said, “If you can give 5 million dollars to study flatulence in cows and its effects on the ozone layer, you can give me some money for migraine research.
Ms. Styron and her producer, Jacki Ochs, hope that their film will help bring attention to migraines. “There has to be a huge breaking of the silence,” said Ms. Styron. “If people keep hiding the fact that they get migraines, then we will never break through the barrier.” Patients need to understand that “having migraines is not a commentary on my character or strength. It’s a disease that you have, and so do hundreds of millions of other people too.”
The New York Times.com
November 6, 2014