Blog becomes a powerful outlet for migraine sufferers

David Manning/ Morris News Service
Janet Geddis sits in her Athens home. She suffered her first migraine in 1993, but nearly a decade passed before she was properly diagnosed.
Monday, June 13, 2011 5:39 AM
Last updated 4:29 PM
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 ATHENS, Ga. -- When Janet Geddis started her blog, The Migraine Girl, she just wanted a place to vent some of the frustrations of the affliction - the pain, the planning to avoid certain foods, the experiments with alternative treatments and, most of all, the reality of living with a disease no one else can see.

"My family and friends cared, of course. But I could tell that it hurt them to hear how it was for me," she says now, 18 years after her first attack.

"To my complete surprise, people started reading the blog and responding to it. It ended up being a very fulfilling writing project because people were responding," she said.

Today the blog is housed on Migraine.com, and Geddis - who started out anonymously sharing her experiences - is part of a national effort to show how common migraine is and sway lawmakers to make life easier for the millions of Americans who suffer.

Earlier this month, Geddis joined other migraine sufferers in Washington, D.C., for Headache on the Hill, a trip organized by the Alliance for Headache Disorders Advocacy.

First episode

Geddis' first migraine came in 1993, when she was 13 and visiting her grandmother in Pittsburgh. Since migraine is hereditary, she points out in The Migraine Girl, her grandmother probably recognized her symptoms and did everything she could to soothe her.

Nearly a decade would pass before she was diagnosed with migraine; like with every other sufferer, doctors simply ruled out anything else that might be causing her attacks.

There's no test for migraine, and each sufferer has a different set of symptoms and frequency of attack. In addition to pain and nausea, some sufferers have blurry vision or see streaks of light; some go numb on one side of their body; some are confused or experience aphasia, the inability to recall words and speak clearly.

"It is the nature of the disorder, that it has this variability," said Robert Shapiro, a neurologist who heads up the Alliance for Headache Disorders Advocacy group. "There's no blood test; you can't see it on an MRI. That's evidence of the absence of sufficient research that we are left with this difficult-to-diagnose condition."

But, Shapiro predicts, it is very likely that scientists will find biomarkers, a chemical sign in the blood or tissue that shows a person is in a migraine state.

That advancement, like finding better treatments, depends on funding.

"At every possible level, there has been insufficient funding" for migraine research, Shapiro said.

A single large-scale clinical trial for a potential breast cancer treatment costs $10 million to $15 million, he said. But the total amount the National Institutes of Health spent on all migraine research in 2010 was less than $15 million.

Shapiro emphasizes that he doesn't advocate taking funding from breast cancer research - "No one is suggesting that research shouldn't be done," he says - but that the government should spend more to understand and treat a problem that costs the United States billions of dollars each year in treatment expenses and lost productivity.

In measuring how many healthy years a disease takes from society, migraine robbed people of more time than epilepsy, multiple sclerosis, ovarian cancer and tuberculosis combined, though those diseases have 45 times more research funding, said Shapiro.

Again, those stats aren't meant to argue for less funding for other conditions, but to point out how research can improve the quality of patients' lives, he says.

In 49 years, only one drug - Imitrex - has been approved specifically to treat migraine.

And only 290 doctors in the United States are certified in headache medicine. That's one doctor for every 200,000 Americans diagnosed with migraine or one headache doctor for each 1 million people in this country.

On the net

After years of try-and-try-again with her treatment, Geddis started The Migraine Girl a few years ago.

"I went to a couple of different doctors and was told, for the most part, that if I could sleep through a migraine, that was the answer," she said. "They weren't really listening to me and hearing that that usually didn't work or it was unacceptable to me to have to take a two-hour nap every day so I didn't feel sick."

Finally, a doctor diagnosed migraine and gave her a new drug - Imitrex.

"Within 30 minutes, I was sitting up and walking around. It was the first time I felt like this wasn't going to continue forever," she said.

The drug turned out not to be the complete panacea she hoped for, and those were the types of experiences that she shares in The Migraine Girl.

In the blog, Geddis doesn't focus on the science of migraine, but on her personal experiences. A simple story about sharing an airplane ride with a painfully perfumed person can uncork frustrations that readers have kept bottled up for years.

The stigma with migraine is complex, Shapiro says, and there's more than one reason people don't talk about it.

Since migraine is three times more common in women than in men, Shapiro expects some attitudes about the disorder involve gender.

Other people don't want to appear lazy, whiny or eccentric.

"It carries with it this huge stigma that it is a woman's problem, that it's a behavior problem, that it's a character flaw. There is an imbedded sexism associated with it. People do their best to hide it," he said.

Migraine sufferers also don't want to annoy their co-workers or frighten potential employers.

But headache disorders cost the United States $31 billion a year. Of that, $11 billion is for medication, while $20 billion is in lost productivity - and two-thirds of that is "presenteeism," people who try to work but can't perform effectively because they are in the middle of a migraine episode.

Those kinds of fears kept Geddis quiet, too.

She didn't tell her friends or family that the blog was hers until 2008, when a New York Times writer mentioned it in a story.

Then, Migraine.com made an offer to pay her to blog. And while she continues to make her living as an editor and book-seller, she's spending more and more time working with the National Headache Foundation and the Alliance for Headache Disorders Advocacy.

For a recent blog post, she got to interview Serene Branson, the Los Angeles TV reporter who became a reluctant advocate for headache research when a migraine-induced bout of aphasia made her seem like she was having a stroke on live television.

"At first, she said, she just wanted to ignore it. She avoided the Internet and tried to tune out everyone," Geddis said. "But after a while, her family and friends started to show her some of the nicer things people were saying and she saw the potential to educate people.

"Unfortunately, not many people have that kind of supportive experience in the workplace," Geddis said.

By the end of the month, Geddis will be off to a national convention in Chicago, with the National Headache Foundation again paying her way.

On the Hill

In a broad sense, the Alliance for Headache Disorders Advocacy staged Headache on the Hill earlier this month to raise awareness about the prevalence of migraine and educate lawmakers about the economic impact of that much lost productivity.

But in meeting with congressmen and senators, the group also had very specific goals.

They urged legislators (often through interviews with their aides) to call for a congressional hearing and consider increasing funding for the National Institutes of Health to take promising research through the necessary steps to allow for clinical trials.

They also asked lawmakers to support S.597, a bill that would add neurology to the list of primary care specialties.

"Right now, there is not a lot of incentive for our medical school students to consider neurology," Geddis said.

The specialty is a tough sell to med students, Shapiro agreed. Headache patients are needier, while doctors just don't have the tools they need to alleviate the pain.

As the advocates from Georgia talked to U.S. Rep. John Lewis and the aides of other representatives and senators, they heard again how migraines touch nearly every American.

"Every one of them had a personal story. Everyone has a personal story about someone they know - their girlfriend has migraines or their grandmother had 'sick headaches' and had to go to bed," Geddis said. "It's one of the most prevalent types of disease in the country."


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