Leslye Lynford was six years old when she had her first migraine. It was the early 1960s, so her parents took her to the optometrist, thinking she was squinting too much and might need glasses. She didn’t; her vision was perfect. Meanwhile, a sharp pain had reverberated around her head for hours. Her mother, also a migraine sufferer, told her to do what she had done for decades: pop a painkiller and sleep it off.
“Most normal children have a piggy bank. I had an Excedrin bottle collection that I kept coins in,” says the 68-year-old retired nonprofit fundraiser, who lives in San Francisco.
In the 62 years since that first episode, Lynford has tried almost every medication that helps relieve migraines under the sun — caffeine tablets, Botox, nasal sprays, even off-label seizure medications — without long term success. While she was grappling with her own debilitating condition, the number of people who reportedly suffer from migraines globally increased by 40% from 1990 to 2019. But research on migraines remains severely underfunded — even though they are the world’s second leading cause of disability, and the disease strips away more healthy years for young women than any other disease globally.
“In the ‘80s and ‘90s, migraine wasn’t really talked about at all,” says Fred Cohen, a neurologist at the Icahn School of Medicine at Mount Sinai. “Nowadays you have commercials for treatments from people like Serena Williams and [Khloe] Kardashian.”
But researchers are skeptical whether more people are actually suffering from migraines. Most neurologists think studies are simply better at capturing people with the disease who were not counted with previous methods.
Richard Lipton, a neurologist at the Albert Einstein College of Medicine, likens migraine prevalence to a giant iceberg. Diagnosed migraines act as the mass above the surface of the water while undiagnosed migraines hide beneath the waves.
“What we’ve seen over the years is that the iceberg is floating higher and higher in the water. So more of the iceberg is visible, because diagnostic rates have been going up but the actual prevalence of migraine has not been going up,” Lipton says.
Reliable data on migraines has been difficult to acquire, according to many neurologists. Migraines remain undercounted because of systemic inequalities preventing women and people of color from accessing medical services.
Lipton says medical experts have also questioned whether headaches and migraines are worthy of study. In 1992, the New York doctor published a landmark study that one researcher deemed “one of the most important studies in the last 50 years.” But three years earlier, one of Lipton’s mentors told him, “You could do something important. Why do you want to study headaches?”
Getting an accurate snapshot of migraine rates will help doctors reduce the burden of this disease that has relatively few treatments, says Tesha Monteith, a neurologist at the University of Miami.
According to the most reliable data, at least 40 million Americans suffer from migraines, roughly 12% of the population. Symptoms can include nausea, dizziness and extreme sound and light sensitivity — pain and discomfort that can majorly disrupt a person’s daily life, which is why headache disorders contribute to billions of dollars in productivity loss.
“Whether [migraine rates] are going up or down, the fact is that there’s tremendous disability,” Monteith says. “We need to do more. We need better access to care. We need better interventions. We need better education, both public health education directly to the public and also education of health care workers.”
Of those 40 million, only 60% are likely to actually seek treatment, according to a 2022 study funded in part by the pharmaceutical company Eli Lilly, which has developed several migraine medications. Lipton, one of the main authors on that study, says part of the reason that millions of people have migraines but do not seek treatment is relatively low awareness about the disorder. Despite second century documents that describe migraine symptoms, headache epidemiology is still a young field, and, as Lipton’s anecdote illustrates, migraines were not considered a worthy object of study until recently.
Monteith says that the field of medicine and society at large are often more focused on acute illnesses like heart attacks than preventative care. That paradigm can create a problem when trying to drum up support for migraine research and public health awareness.
“I love what I do, but I think as a society, [a migraine] is not thought to be heart disease or an acute heart attack, right? It’s not thought to be impending doom,” says the Florida neurologist.
Developing standardized diagnostic criteria for headache-related conditions like migraines is also a challenging task. The International Classification of Headache Disorders, a group of neurologists that counts Richard Lipton as a member, attempts to do just that, but not every study or trial adheres to their suggestions.
For example, more and more studies include probable migraines in their counts because of inconsistent criteria, says Lars Jacob Stovner, a neurologist at the Norwegian University of Science and Technology. This can explain some of the rise in the global burden of migraine, in addition to data coming from countries that have not conducted headache studies before.
Migraine rates in most Western countries are generally higher than in Asia or Africa, which many doctors ascribe to greater awareness and more marketing of disease treatments. But diagnostic rates have plateaued in recent years.
Stovner has also helped conduct a study that quantifies how much of the world’s population suffers from migraines. He also helped develop a methodology for population-based studies that uses phone sampling to calculate incidence rate rather than relying upon diagnostic rates. His latest study clocks the global migraine rate at 14% of the population, or 1.1 billion people.
To help quantify the level of disability these individuals face, the Norwegian neurologist wants to include how long a migraine lasts as a new measure when asking individuals about their migraines. His unpublished study including that measure found migraine is so common that humans (not just regular migraine sufferers) spend 1% of their time in the thrall of a migraine.
Adding a question like that is important to understanding migraine prevalence and burden, says Mt. Sinai’s Cohen. He says he would love for every study that comes out to have the exact same criteria and use comparable methodologies, but that is not how medical research works.
“A heart attack is a heart attack. But headache medicine is like psychiatry. It’s not as objective of a finding,” he says. The ICHD-3 — the manual that outlines headache disorders — has undergone three revisions, similar to the comparable diagnostic manual in psychiatry. “I’m not saying that’s a bad thing. All these changes have led to better diagnoses, have led to better understanding and treatment of the condition,” he says.
Cohen says the field has entered a “golden age” with the newest drugs on the market. He says it is the first time companies are developing medication strictly for migraines rather than stumbling onto a drug that helps alleviate symptoms. While many studies are touting the new drugs’ efficacies, much of the research is funded by the pharmaceutical companies producing the drugs. Regardless, the drugs are arriving at a crucial time: a forthcoming paper from Cohen shows that while migraine prevalence in the United States has stayed flat, severe migraines may be on the rise
The newer drugs block a neurotransmitter called calcitonin gene-related peptide, or CGRP, and have been wildly successful compared to previous options, according to Monteith, who has consulted for drug manufacturers like Teva. However, these drugs are still quite expensive — no generic equivalent exists for any of them — and there remain serious racial and income disparities in who can access adequate migraine care. But Monteith says that these new medicines bring hope to patients who have been in pain for decades.
Many conditions lack treatments, “but [with] headache disorders, you can bring back people’s quality of life. You can make people feel whole,” Monteith says. “People suffer with migraines. Most people go into medicine to … alleviate suffering. And I feel like, as a headache specialist, I’m able to do so.”
Though lifelong migraine sufferer Leslye Lynford has not succeeded with these newer drugs, others in her family have. And she’s lived long enough with the disease to learn how to manage it. She avoids chocolate and aged cheese and never leaves the house without her pillbox. When a migraine strikes — which happens two or three times per week — she finds a place to lie down and either ride it out or sleep it off.
Lynford has learned to handle these attacks, but she still worries about her family and the genetic legacy she passed down. When she was in her 20s, she met a pediatric neurologist at a party and asked him a question: If she, a third-generation migraine sufferer, had a daughter, what were her chances of passing down the disease? He said 90%, which gutted her. She did end up having a daughter — who does, indeed, have migraines.
“I feel so guilty, so guilty passing this on to Rachel,” Lynford says. “Every time she calls me and she cries about the pain she is going through, I just cry because I feel terrible that I passed it on.”
“Not that that’s anything I can control, but because I sympathize and can understand the pain she’s in. And now I’ve got a granddaughter and I worry what’s going to happen with her.”