15 percent of Americans have migraine disease. Why aren’t there better treatment options?

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• Amna Nawaz:

  It's often dismissed as just a headache, but a migraine attack is much more than that. Fifteen percent of Americans are affected.

  But, as Stephanie Sy reports, the stigma associated with migraine disease has meant fewer resources for desperate patients.

  The story is part of our regular series on the Leading Edge of science, technology and health.

• Jenn Tingwald:

  Eliana, do you have a four?

• Stephanie Sy:

  For Jenn Tingwald, playing Go Fish with her family could be a metaphor for the past five years, fishing for relief from the pain of chronic migraine.

• Jenn Tingwald:

  We never thought that the sickness would come before the health in our marriage. So that's been really hard.

• Stephanie Sy:

  Tingwald had her first migraine attack when she was 31.

• Jenn Tingwald:

  That's really where my journey began. And, to some degree, my head pain has not left since that day. So, like, in my left temple, I always have pain. The intensity changes, but it's always there. It's always present.

• Stephanie Sy:

  This is your nightstand.

• Jenn Tingwald:

  Yes, otherwise known as my mini-pharmacy.

• Stephanie Sy:

  The once-aspiring nurse now spends hours a day managing her pain. An ice pack has become a near permanent fixture over her left temple.

  She frequently receives a cocktail of migraine and pain medication administered through an I.V.

• Jenn Tingwald:

  At minimum, I'm here three days a month, at max, 12 to 15 days a month.

• Stephanie Sy:

  Tingwald is on the severe end of the migraine spectrum. But she's just one of 47 million Americans who have the disease, 75 percent of whom are women. The symptoms can be debilitating.

  Three generations of Shirley Kessel's family have migraine.

• Shirley Kessel:

  I have ringing in my ears 24/7. I have light sensitivity. I have sensitivity to sound and smells. And then, when the headache comes, it's just like an explosion in my head.

• Stephanie Sy:

  Angie Glaser gave up her dream job as a National Park ranger because of migraine.

• Angie Glaser:

  My brain kind of feels like it's in a bowl of water, kind of like sloshing around. But, sometimes, I'll get these waves of vertigo where I'll move my head and the whole room will just flip.

• Jenn Tingwald:

  Striking, stabbing pain, so almost like somebody has like a hot sharp ice pick, and they're just stabbing it straight through my temple.

• Stephanie Sy:

  Dr. Amaal Starling treats Jenn Tingwald at the Mayo Clinic in Arizona. For her, the search for an effective treatment is still ongoing.

  Starling says the last few years have seen more options become available, but most work on only 50 percent of patients.

• Amaal Starling:

  Stress can be a trigger. A lack of sleep can be a trigger. Different foods, different allergens, all these things can be potential triggers, but they are not the cause. The cause is it is a genetic neurologic disease.

• Stephanie Sy:

  For mother and daughter Deborah and Alayna Cyb, migraine has been a part of their lives since Alayna was in the third grade. About 10 percent of school-age children have migraine.

• Alayna Cyb:

  It's more than just a headache. That's why I didn't mention head pain.

• Deborah Cyb:

  I don't know if you noticed, but her speech, that's a symptom of migraine.

• Alayna Cyb:

  Yes.

• Deborah Cyb:

  Like, your speech is kind of — can you explain that thing that happens?

• Alayna Cyb:

  Yes. My tongue just — it feels like it's, like, too big for my mouth. And I just…

• Deborah Cyb:

  It's hard for her to…

• Alayna Cyb:

  I can't talk right.

• Stephanie Sy:

  Another example of this phenomenon was captured on camera with this local news reporter, Serene Branson.

• Serene Branson:

  Well, a very, very heavy — heavy burtation tonight. We had a very…

• Stephanie Sy:

  Starling explains what's happening in the brain to cause these symptoms.

• Amaal Starling:

  The trigeminal nerve is the nerve that innervates our entire face, as well as the covering of our brain. And that is the nerve that is becoming sensitized during a migraine attack.

  That's where you will develop that sensitivity to light and sound and motion, as well as what we call the emotional aspect of pain and the processing of pain.

• Stephanie Sy:

  So pain is not a certain area of the brain. It's sort of specific.

• Amaal Starling:

  It's a network.

• Stephanie Sy:

  It's a network throughout the brain that's affected during a migraine attack.

• Amaal Starling:

  Correct.

  And, again, it's the abnormal function of that network is what is resulting in migraine.

• Stephanie Sy:

  The Mayo Clinic here in Scottsdale, Arizona, is one of the largest migraine and headache treatment centers in the country. And people come from all over the U.S., because there simply aren't enough migraine specialists to treat the millions of people who have it.

  One reason leading to the lack of specialists comes down to a word we heard over and over from patients.

• Deborah Cyb:

  The stigma.

• Alayna Cyb:

  Yes.

• Shirley Kessel:

  The stigma, the burden that comes along is sometimes almost worse than the disease itself.

• Amaal Starling:

  Very frequently, they will say, I was told that this is just all in my head. They think that it's all in my head.

• Stephanie Sy:

  That it's psychological.

• Amaal Starling:

  Correct. And I have to tell them, well, yes, it is in your head, because your brain is in your head.

• Actor:

  Mommy, mommy, look what I drew!

• Actress:

  Jimmy please, not now! I'm too busy!

  Control yourself. Sure, you have a headache.

• Stephanie Sy:

  The stigma attached to migraine is likely rooted in sexism says, sociologist Joanna Kempner.

• Joanna Kempner:

  They're inevitably discussed as people who are neurotic, maybe a little too caught up in their housework, maybe a little too worried about what their husbands are doing.

  I'd like to say we're past the stereotypes, but they still kind of color how we think about women with migraine.

• Stephanie Sy:

  But more and more famous women have shared their migraine struggles.

  Tennis great Serena Williams says she's lost matches because of migraine. And Cindy McCain spent much of her husband's presidential campaign in excruciating pain. Having kept her symptoms hidden for years, she's now an advocate for more research.

  Advocacy around the issue culminates every year in Washington, D.C., with an event dubbed Headache on the Hill.

• Man:

  Three, two, one.

• Stephanie Sy:

  This year, some 200 activists lobbied Congress for more federal funding for research and education.

  A lack of funding is one reason why many migraine patients say there aren't more effective treatments.

• Katie MacDonald:

  You may be in bed for a day or a week or two weeks after this.

• Stephanie Sy:

  Katie MacDonald leads the effort for the Alliance For Headache Disorders Advocacy.

• Katie MacDonald:

  At the federal level, there are organizations and agencies that make decisions to not support migraine, because they don't feel like it's a big deal. And so we're trying to change that perception, reverse that, and get more attention back to migraine.

• Stephanie Sy:

  For 2020, the National Institutes of Health has allocated $27 million for migraine research, a paltry amount, say advocates, for a disease that affects 15 percent of Americans and leads to billions of dollars in lost productivity annually.

  For comparison, the NIH allocated $31 million this year to anthrax, which affects just a handful of people every year.

  Just to attend this year's advocacy day in Washington, the group faced a world of potential triggers, from the rainy weather, to the bright lights and loud, echoey halls, and even the noise of applause, which required an adaptation, waving hands, instead of clapping.

  Dr. Starling and her patient, Tingwald, met with representatives from their home state of Arizona, including the legislative director for Congressman Ruben Gallego.

• Amaal Starling:

  There are not enough headache specialists; 47 million people in the U.S. with migraine. There are 564 border-certified headache specialists.

• Nathan Schelble:

  Wow.

• Stephanie Sy:

  By lunchtime, Tingwald had to put her ice pack and sunglasses back on.

• Jenn Tingwald:

  This isn't the life I imagined for myself. This isn't what I thought I would be doing.

  But, at the end of the day, I'm doing everything that I can to treat it and to find, you know, if not a cure, the best quality of life that I can.

• Stephanie Sy:

  Tingwald and her fellow advocates aren't giving up in their push for better treatments, more research funding, and more understanding of migraine.

  For the "PBS NewsHour," I'm Stephanie Sy in Phoenix, Arizona.