If it does, you've probably also felt like this:
These are all symptoms of the debilitating, traumatic disease of migraine,
which, just to be clear:
- is not just a headache.
It's a genetic, neurologic disease.
It's shockingly common,
estimated to affect a billion people around the world.
- We need to treat migraine like a large, global public health problem.
But migraine research is critically underfunded.
And there's still a lot we don't know about why they happen
and how best to treat them.
- I feel like a cyborg.
We spoke to doctors, researchers and patients to learn more
about the confounding disease of migraine
and what it will take to truly find relief.
I'm Molly Rubin. This is Quartz.
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There are a lot of treatments for migraine.
- And that's another pulse.
Neuromodulation devices stimulate nerves to normalize brain function.
- And we just turn it on.
- It's starting to get really sharp, really tight, and really intense.
- We'll take it right off.
Some people get dozens of shots of botox
to the head every few months.
Or inject anesthetics to the nerves in their head.
- It's super uncomfortable, I don't know why I laugh.
But these treatments don't work for everyone.
- I've been on the shots, I've done the nasal spray.
- I've tried probably a hundred medicines at this point.
And it's hard to even find a doctor.
There are less than 600 certified headache specialists in the US.
- Very often what we offer is hope.
Dr. Alexander Mauskop specializes in treating migraine.
Yes, migraine, not migraines.
It's a disease people live with 24 hours a day, like asthma,
not just during attacks.
And it's particularly hard to treat because everyone experiences migraine differently,
with a range of symptoms that are maybe best described as paralyzing.
- The World Health Organization rates the disability
of migraine during an attack at the same level as
the disability of a quadriplegic.
- Of a quadriplegic person? - Yes.
The US economy alone loses $78 billion annually
in lost labor and direct medical costs,
thanks to migraine.
A reliable, affordable, effective treatment without crazy side effects would be a game changer.
And last year, there was a breakthrough:
a new class of drugs called CGRPs.
They block a protein in the brain released during an attack,
and they're the first-ever preventative drug developed specifically for migraine.
- These are totally different drugs from the ones we've had in the past.
CGRPs are life changing... for some,
but not for everyone.
- I'm on my fourth month of Ajovy
and it's been a miracle drug for me.
- For me, it's had a very limited result.
They work really well for about 20% of patients,
but migraine impacts 1 in 7 people around the world.
Those suffering need more.
That's the focus of researchers here, at an Arizona campus of Mayo Clinic,
this gleaming hospital in the middle of the desert
at the forefront of migraine research.
- So what do we know about what causes a migraine,
and what don't we know?
- So we know that there are many different genes,
over 30 genes, that are associated with migraine.
We know that that there's these correlations,
but we don't exactly know the connections in between them.
Dr. Starling is a neurologist and headache specialist.
She runs clinical trials and collaborates closely with the Mayo lab.
- Why is it that there's still so much we don't know
about migraine pathology and treatment?
- So it all comes down to stigma.
If a disease is not respected in the medical field,
then it's also not going to receive the amount of research funding that it should.
The National Institute of Health is the biggest source
of public funding for biomedical research in the world.
If you look at the funding migraine receives compared to its burden,
it's way below the average.
- Very little research is being funded for a disease that is highly disabling.
Migraine has a devastating impact.
But it's hard to get people to care about a disease they can't see,
especially when almost three-quarters of sufferers are women.
- A common theme, unfortunately, in a lot of disease processes
that affect women disproportionately is that we don't have a lot of research.
- When she told you about all this,
did she have any idea what caused the headaches?
- No, she believes she was born with them.
Until the late 20th century, migraine was thought to be a psychosomatic disease of hysterical women.
- There's an angry, frustrated woman.
- It's just, "Oh, women are weak.
They're complaining. They're just laying in bed.
They should just get to work and drink a little bit of water and get a massage."
Migraine affects people across all ages, races, socioeconomic classes.
Science has shown that it's a neurological disorder,
but that hasn't been enough to change the way we think about it.
- Because stigma is social.
The only thing that can remove social stigma is changing culture.
Joanna Kempner wrote a book on the stigma that surrounds migraine.
- What is the best way that you see to remove the stigma
and to get people to really believe that this should be funded?
- The best way for disease groups to get more funding
is for people with those diseases to mobilize.
Miles For Migraine is a non-profit group working to show the world
migraine is a real disease that needs to be taken seriously.
Through advocacy, they hope to make the disease more visible,
to bring more attention (and funding) to research.
- We want them to use their voice and their actions to advocate for this disease,
because it is misunderstood, misdiagnosed, under-diagnosed.
These patients are spending hours, on a Saturday,
to talk about the most extreme pain they've ever felt in their lives.
They're listening to lectures, trying art therapy and tai chi.
That it took until 2018 to make a drug that could potentially help a billion people,
shows how much work still needs to be done to fight the stigma of migraine.
- This is a feminist health issue.
This is about women being heard at the health clinic.
This is about women being heard by their employers, by their partners,
and women also hearing themselves.
So, if you take anything away from this video, take this:
- Migraine is more than just a headache.
- Migraine is not just a headache.
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