Migraine affects a billion people, but we still don’t know exactly why

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First things first: Migraine is not just a headache. It’s a genetic, neurological disease with an estimated billion sufferers around the world—that’s one in seven people, three-quarters of them women.

Beyond, yes, painful headache, migraine sufferers can also experience nausea; dizziness; sensitivity to light, sound, and smell; slurred speech; even paralysis on one side of their body. Some see flashing lights or zigzag lines before or near the beginning of an attack, known as aura. Symptoms can last for hours, sometimes days.

2018 was supposed to be a revolutionary year for migraine: Along with new neurostimulation treatments, the US Food and Drug Administration approved a new class of drugs, calcitonin gene-related peptide (CGRP) blockers. It’s the first medication specifically developed for migraine prevention, but only about 20% of patients see near-total relief.

Migraine is the second-largest global contributor to years lived with a disability and costs the US economy alone $78 billion annually in direct medical and lost labor costs. There’s a clear need for more effective, reliable preventative treatments, but there’s still a lot we don’t know about what causes migraine and thus, how best to treat it.

A disorder of “hysterical women”

The problem comes down to research. If you look at the public funding migraine research receives in the US and Europe, it gets a fraction of the money diseases of similar burden do.

That disparity is a direct result of the stigma of migraine: the fundamental misunderstanding that it’s not a serious or disabling disease, despite being more prevalent than diabetes, epilepsy, and asthma combined, and as disabling as quadriplegia.

Though medical evidence of migraine dates back to ancient Egypt, around the 18th century, migraine started to be thought of as a mental problem of “hysterical” women who couldn’t handle the stress of daily life and didn’t want to have sex with their husbands. Even today, many doctors still mistakenly believe migraine is caused by women’s stress.

There is also a well-documented bias in the medical community of not taking women seriously. When women report pain in the emergency room, they’re more likely to be perceived as “complaining,” receive lower doses of painkillers, and wait longer for medication.

Doctors, patients, and researchers all say that real change won’t happen without patient advocacy. For example, simply changing the language we use around migraine can make a real difference in people’s minds, i.e. referring to it as migraine, singular, to reinforce the concept that it’s a genetic and chronic disease, like asthma, and causes debilitating symptoms during attacks.

Advances in neuroimaging, gene therapy, and advanced computing have headache specialists optimistic we could be on the cusp of a real revolution in migraine science and treatment. But the biggest challenge will be making the invisible pain of sufferers visible, and getting policymakers and the public to take it seriously.

Watch the video above as Quartz News investigates the complicated disease of migraine and learns more about what it will take to truly find relief.

Quartz News is a weekly video series bringing you in-depth reporting from around the world. Each episode investigates one story, breaking down the often unseen economic and technological forces shaping our future.

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