One of my most unforgettable experiences happened when I stepped into a doctor’s office feeling an impending migraine. I left, strangely enough, completely pain-free in just half an hour. It was back in the early ’90s, and I had been battling these headaches—often bringing nausea and the occasional bout of vomiting—since I was 14. Honestly, I can’t pinpoint why I decided to make that appointment that day. Yet, I vividly remember the doctor struggling to unwrap a cartridge containing a hypodermic needle filled with a brand-new medication. She mentioned she suffered from migraines too, which made us both feel a kind of curious anticipation as she placed the cartridge against my arm and pressed the button to deliver the shot, as if we were part of some exciting experiment.
It turned out to be life-changing. Within five minutes, the throbbing pain that had taken hold of my right temple just hours before disappeared. We both felt a rush of giddy surprise. I’ll never know if sumatriptan, the medication being tested, worked for her too. But, lucky me, that drug has been a reliable ally over the years. It has kept my migraines at bay, saving me from countless misery-filled hours. Whenever someone grumbles about Big Pharma or dreams of living in a simpler time, I can’t help but think about how unthinkable life would be for me without sumatriptan. I mean, it’s just terrifying to imagine what it would be like.
I’m fortunate. Author Tom Zeller Jr. discusses in his enlightening new book, The Headache, how those suffering from migraines or cluster headaches often face a frustrating reality: many recommended treatments either fail or lose their effectiveness over time. Zeller explains that conditions like migraines and cluster headaches are considered “primary headaches,” meaning the pain and related neurological symptoms are disorders on their own, not just indicators of some underlying illness. It’s surprising how little understanding exists about common migraines, particularly among those who don’t experience them. I recall working with someone who thought I was ignoring potential health issues because I didn’t view my headaches as signs of something more serious that needed to be cured.
The Headache provides insights into what we know (which isn’t a lot) about migraine and cluster headaches, along with the progress in developing treatments. One of the newest treatments involves drugs that inhibit the uptake of calcitonin gene-related peptide (CGRP), which plays a significant role in pain signaling within the nervous system. According to Zeller, researchers discovered that CGRP could trigger migraines during experiments. The new class of drugs prevents CGRP from binding to its neural receptors.
While cluster headaches are rare, migraines are prevalent, costing the U.S. economy around $1 trillion. Still, research on the roots and solutions for primary headaches is lagging for various contested reasons. I must admit, at times, the scientific explanations in The Headache made my eyes gloss over. Yet, Zeller’s revelations about conflicts among headache researchers and their collective frustration over insufficient National Institutes of Health funding were both enlightening and entertaining. At one point, a scientist likened migraine research to trying to get a massive Airbus airborne with four fully fueled engines, and Zeller humorously asked what was preventing it from taking off. “Too many female passengers,” was the blunt retort.
There’s a significant gender disparity in migraine sufferers, with women outnumbering men by three to one, while the opposite holds true for cluster headaches. Many headache specialists believe this discrepancy contributes to the lack of serious attention migraine disorders receive in the medical community. For example, Zeller notes that cluster headache sufferers often go to great lengths to conceal their condition. He recounts a story about an air traffic controller who hid his chronic cluster headaches for 30 years, understanding that being honest about his condition would lead to him losing a job he loved. He secretly maintained a stash of medications (which didn’t impair his work) and discreetly slipped out of the office during an episode to use oxygen from a tank he kept in his car.
Zeller himself grappled with the stigma surrounding his debilitating cluster headaches, which many people mistake for a mere hangover. Those experiencing cluster headaches often endure pain that ranks among the worst imaginable. While migraineurs typically retreat to quiet, dark spaces, those with cluster headaches frequently find themselves unable to stay still, pacing or pounding their heads in agony. Unlike migraines, cluster headaches might not drag on all day, but they can occur frequently, sometimes several times daily, during agonizing periods that can extend for weeks or months, punctuated by brief reprieves. Zeller shares the tragic tale of a young man whose relentless cluster headaches led him to take his own life, highlighting the grim nickname for the disorder: suicide headaches. In a particularly intense moment while working on a robust story, Zeller experienced a cluster attack, resorting to an extreme cocktail of medications, even overdosing on a CGRP blocker.
While we may experience different kinds of headaches, I see much of my own struggles reflected in Zeller’s experiences. I also find it tough to convey how debilitating a headache can be. His obsessive need to ration medication, splitting doses to make them last, resonates with me. I feel the urgency in his worry as he counts those precious blue injections, fearing their limited availability. Managing prescriptions is crucial, especially when insurance companies can be stringent with the quantity they allow each month. The mere thought of running out is paralyzing. Thankfully, I’ve moved past that, as sumatriptan has become generic and is now easily accessible online. However, the newer CGRP blockers remain astronomically priced. Unfortunately, many primary headache treatments only prove effective for about half of the individuals who try them, and even then, only about half the time.
It’s no wonder researchers are still puzzled by these conditions. There’s active debate regarding whether primary headaches stem from vascular issues, with blood vessels pressing against nerves, or if they result from central nervous system dysfunctions originating in the brain. Zeller mentions the hypothalamus’s role, connecting it to the rhythm of the body’s natural clock related to cluster headaches. Migraines themselves can vary so significantly from person to person and can even change throughout an individual’s life. Mine used to coincide with hormonal cycles but have since adjusted. Now, they mostly show up at night, especially when it rains or humidity rises above 75%. Or if my blood sugar drops. I never had migraine aura until about fifteen years ago. Now, I sometimes see shimmering crescents, a classic migraine sign, but without following headaches.
Researchers lament the stigma attached to primary headaches, often labeled “unserious” medical issues, which seems to deter talented minds from entering the field. Zeller mentions that former NIH director Story Landis conveyed that the agency has underfunded headache research, given their societal impact, and points out a lack of high-quality grant proposals as a possible reason. Landis suggested that headache researchers might have been conditioned by the pharmaceutical industry to focus more on treatments, rather than digging deeper into understanding the conditions themselves. Given that Big Pharma often funds these studies, it’s not entirely surprising.
When Zeller was asked what he had gleaned from his comprehensive research for The Headache, he admitted hesitantly that his suffering wasn’t the worst anyone could go through with cluster headaches, adding that “there are bigger problems.” Yet he paused, realizing that for millions—of various races and genders, himself included—primary headaches are an oppressive challenge. Although I don’t often endure them now, the memory of experiencing a full-blown migraine is still fresh. “It’s not just a headache,” Zeller concludes, and we can all undoubtedly agree on that.
