The underestimated disease that more than a million Catalans suffer in silence

Barcelona"We use the words headache as a metaphor for minor annoyances. We say that traffic is a headache. That we use the same word to describe what happens to a person with a migraine is a great misfortune." The speaker is Tom Zeller, a renowned science journalist, a veteran of The New York Times and contributor to media outlets such as National Geographic who lives much of his life with almost indescribable pain. He suffers from cluster headaches, a condition so severe it's known as suicide headaches. For years, his struggle was a "private and personal quest," a solitary immersion in the most obscure scientific literature, searching for any clue that might explain his suffering. "At some point," he confesses, "I realized I'd been researching this book for decades. I just didn't know I was doing it."

This revelation led him to write Headache (Mariner Books, 2025). Zeller saw a huge gap between inaccessible academic texts and superficial self-help books. Her goal was to approach the subject with a fresh perspective: "To delve into the science like a journalist, with rich characters and narrative, with narrative drive, a colorful story, and contagious curiosity." Her book doesn't offer miraculous cures—"nobody has all the answers," she admits—but something perhaps more necessary: ​​validation. An attempt to transform her experience into a public tool to give voice to a pain that society has chosen to ignore.

Her story, despite belonging to one of the rarest and most extreme primary headaches, serves as a mirror for the most widespread illness of all: migraine. Behind each case lies a staggering collective figure: more than 1.1 billion people worldwide live with some type of primary headache disorder. In Catalonia, this equates to nearly one million sufferers. This is a reality often managed silently at home, but it becomes visible in highly specialized centers, such as the Headache Unit at the Hospital Clínic of Barcelona, ​​a leading center that has seen demand skyrocket. According to data recorded by the hospital itself, first-time visits increased from 955 in 2021 to 1,321 in 2022.

This 38% increase in a single year does not necessarily mean there are more patients, but rather reflects a worrying double phenomenon: on the one hand, greater awareness leading more people to seek specialized help; on the other, a possible saturation of primary care and an increase in refractory cases that, after years of suffering, urgently need care that they cannot find anywhere else.

A hereditary disease

Behind this avalanche of patients lies an undeniable biological reality. "Migraine is a hereditary disease," insists Dr. Robert Belvis, coordinator of the Headache Group of the Spanish Society of Neurology. The latest science conclusively supports this: massive genetic studies have identified dozens of DNA variants that don't directly cause the disease, but rather create a base of vulnerability. These variants confirm that the migraine-prone brain is, from birth, "wired" differently, with a predisposition to hyperexcitability: its neurons, so to speak, are more easily triggered by internal or external stimuli such as stress, hormonal changes, or lack of sleep. This difference is no longer a theory, but a visible reality. Thanks to neuroimaging techniques, scientists have been able to observe how the brain of a person with migraines goes on "alert" up to 48 hours before the pain begins. The body's control center, the hypothalamus, is abnormally activated. This area, responsible for regulating such basic functions as sleep, hunger, and hormones, becomes the epicenter of an impending storm, providing a biological explanation for the fatigue, mood swings, and food cravings that patients know so well. Migraine, therefore, is not an attack that appears out of nowhere, but the climax of an invisible and constant process.

Amid this biological reality, science has undergone a therapeutic transformation that Patricia Pozo Rosich, president of the International Headache Society, summarizes in three major stages. "There have been three revolutions in the field of migraine," she explains. The first arrived in the 1990s with triptans, the first drugs designed to stop an acute attack, which radically changed the lives of many patients who until then only had access to general analgesics. The second was the introduction of botulinum toxin as the first preventive treatment specifically approved for chronic migraine, offering an option for the most severe and refractory cases. But the third revolution, the current one, is the one that has changed everything.

A molecule called CGRP

"These new drugs are a major breakthrough because we haven't repurposed any existing medication; they were designed specifically for migraines," Pozo emphasizes. The key to this new era was identifying the protagonist of the pain: a molecule called CGRP, short for calcitonin gene-related peptide. This small protein acts as a pain messenger. During a migraine attack, the trigeminal nerve endings release it en masse, acting as a potent vasodilator and, above all, facilitating the transmission of pain signals to the brain. Science irrefutably proved its involvement: not only were its blood levels shown to spike during attacks, but its injection into patients could trigger a migraine attack. This discovery made it possible to design, for the first time, drugs that acted as "molecular snipers," with the sole objective of neutralizing this pathway: injectable monoclonal antibodies, which capture CGRP before it acts, and a new class of oral drugs, "gepants," which block it.

These treatments, according to the doctor, represent a huge qualitative leap: "They don't affect hepatic or renal metabolism, they are very well tolerated, and they are more effective than the triptans we had before." But this revolution hides a crucial paradox that the doctor herself points out: "They produce a much better response in patients with less frequent migraines." This scientific finding is not a simple clinical observation; it is a statement that highlights the system's major problem: arriving late has biological consequences.

Herein lies the great paradox. We have the tools, but they don't arrive in time. "Patients arrive late to the neurologist," warns Dr. Belvis. This statement is not a perception, but a reality documented by the most recent science. A comprehensive review of the literature from the last five years, published in 2024 in Journal of Headache and PainThe study concludes that patients' unmet needs remain enormous. It reveals that, despite the pharmacological revolution, an overwhelming majority of patients who meet the criteria for preventive treatment never receive it, and the average delay in diagnosis and access to a specialist remains unacceptably long.

This lost time has a terrible biological consequence. The constant bombardment of pain signals causes the central nervous system to "learn" to feel pain more efficiently. This phenomenon is known as "central sensitization": neurons lower their activation threshold, and the brain begins to interpret as painful stimuli that are not, such as the simple touch of hair. It is the mechanism by which the disease becomes chronic, transforming into a daily prison. Tom Zeller knows this feeling well. In his book, he describes how the brain of a patient with cluster headaches learns to live in a state of alert, as if every sound or light were a threat. "It's like learning a language that no one speaks anymore," he writes. This isolation, he says, is perhaps the most devastating aspect of chronic pain: it condemns you to suffer in a silence that the rest of the world cannot hear.

This chain of delays is built upon a deep stigma, rooted in history. Zeller links this to the medical establishment's disdain for women's health problems, which are often attributed to "hysteria." Dr. Pozo takes the issue a step further: "Migraine is the most stigmatized disease, very close to schizophrenia." This perception, she explains, is fueled by the lack of objective biomarkers, which makes it seem socially like "not a real biological disease." This invisibility comes at a high price. "Migraine is undervalued," Dr. Belvis points out. This disdain has concrete and devastating effects: historically much lower research funding than for other diseases with a similar disability impact, and a lack of healthcare resources. "Society must understand that diseases that affect quality of life and bury you alive are serious," Dr. Pozo concludes.

The solution, therefore, is no longer solely in the laboratory. There, research is now looking beyond CGRP, considered the main highway of migraine pain. Scientists have discovered that, for some patients, the pain seems to take an alternative route, a kind of secondary highway controlled by another messenger molecule: PACAP. This has opened the door to the design of new drugs, a therapeutic plan B specifically designed for those patients who do not improve with current treatments. However, faced with a systemic problem, the solution cannot be solely pharmacological.

"What we need is a national strategic plan against migraine," demands Dr. Belvis. A demand that, in Catalonia, would translate into the need to provide more resources to specialized units and ensure that protocols reach all primary care centers (CAPs) in the region. "A plan that organizes resources, trains primary care physicians for early diagnosis, and establishes a clear pathway: standardized protocols and referral to a neurologist for all patients with four or more days of debilitating migraine per month, to guarantee access to specialized units."

Science has already begun to illuminate the map of pain; now it's up to society to learn to read it. These amplified stories create urgency and put the spotlight where it should always have been: on the real suffering behind a word too small to describe such pain.