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, Migraine Patient: Eliana (ph), 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, Migraine Patient: 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, Migraine Patient: 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.
DR. AMAAL STARLING, Mayo Clinic: 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, Migraine Patient: It's more than just a headache. That's why I didn't mention
head pain.
DEBORAH CYB, Migraine Patient: 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, CBS Los Angeles: 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.
DR. 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.
DR. AMAAL STARLING: It's a network.
STEPHANIE SY: It's a network throughout the brain that's affected during a migraine attack.
DR. 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.
DR. 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.
DR. 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, Rutgers University: 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 migraines.
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, Alliance For Headache Disorders Advocacy: 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.
DR. AMAAL STARLING: There are not enough headache specialists; 47 million people in the U.S.
with migraine. There are 564 border-certified headache specialists.
REP. RUBEN GALLEGO (D-AZ): 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.