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Cindy McCain: Migraine pain is 'indescribable'

June 27, 2013 at 9:59 AM ET

Video: Approximately 36 million Americans suffer from debilitating migraine headaches, but only one drug class has been designed and approved to treat them. One woman shares her story, and Cindy McCain, wife of Sen. John McCain and a migraine sufferer for 20 years, talks about bringing more awareness to the painful condition.

You feel like you got hit in the back of the head with a crowbar or had a nail jabbed through your forehead. If you have been lucky to escape migraine headaches, sufferers say, you cannot imagine how excruciatingly painful they can be.

Cindy McCain, who has suffered from migraines for more than 20 years, launched the 36 Million Migraine Campaign on TODAY Thursday, an effort by the American Migraine Foundation to raise $1 for each of the 36 million American migraine sufferers.

“To me it was like a vise or nail in my forehead,” McCain told TODAY’s Savannah Guthrie of her painful migraines. “It’s indescribable to those who have never suffered.”

The campaign seeks to increase awareness about the debilitating disorder and raise funding for new treatments, said McCain, wife of Arizona Republican Sen. John McCain.

The foundation estimates that migraine headaches are three times more common in women than in men, and that one in four American households has a migraine sufferer. The National Institutes of Health receives about $16 million a year for migraine research, “a pittance,” the foundation says, urging an annual amount of $260 million.

“Sixteen million for something that affects 12 percent of the population,” McCain lamented. “It affects our economy. It affects our daily life. It affects our school children. Everything is involved in this.”

McCain said she suffered headaches during her husband’s 2008 presidential bid, as evidenced by the sunglasses she was often photographed wearing. “That’s when it was happening, big time,” she said. “That was the sign.”

The pain of migraine is hardest on family members, McCain said, who often don’t get just how bad it feels. “They want so much for you to feel well and they don’t understand it,” she said.

The disorder still carries a stigma, with sufferers often not wanting to discuss the problem.

“People are afraid to talk about it,” McCain told Guthrie. “If they do, they’re misdiagnosed. Their coworkers think they’re faking it. Their family thinks they’re faking it. It’s terrible. It’s awful.”

Joan Sirven, a longtime migraine sufferer, tried 20 different medications before finding relief with Botox injections, approved for migraines by the Food and Drug Administration in 2010.

She described it in a taped segment on TODAY as, “Just like a veil of pain that you live with and you don’t realize you have it.”

More than 15 genetic mutations have been identified that leave people susceptible to migraine but only one class of drugs has been approved to treat migraines, according to TODAY.

McCain said medications to treat migraines were “developed for something else.”

“We’re kind of the child that gets the leftovers in migraine,” she said. “We want to focus the research on new meds for this but find a cure and we’re very close to that right now. But we certainly need federal funding.”

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