I knew the generic name for Advil (ibuprofen), its differences from over-the-counter compatriot Tylenol (acetaminophen), and the right dosage for minor discomfort (one capsule) or major and unrelenting pain (two or perhaps even three capsules) well before I hit puberty. The reason? I’ve had frequent migraines for practically as long as I can remember. And my dad—a doctor who’s also battled migraines since he was a kid—had taught me at a young age to pop the ibuprofen immediately upon migraine onset to ensure the medication worked effectively.
But before you pity me, you should also know that I was absolutely fine. Or at least, that’s what I would’ve told you back then. Headaches just weren’t that big of a deal; it seemed like everyone got them at some point. Sure, my headaches weren’t just headaches, as they often left me bedridden… and nauseated (okay, maybe vomiting) and sensitive to light and sound. And yes, I’d had to miss the occasional day of school or dance class, and in later years, trips to the mall and nights out, because of unshakeable pain. But if I took my trusty Advil—which I went nowhere without—I’d usually be okay within an hour or so, save for the rare instances when nothing but an ice pack and hours in a fetal position would bring relief.
Even so, I felt reassured by the fact that my dad had always treated his migraines with Advil, and as a physician, suggested nothing different for me. His comments also quelled my fears that my symptoms might be anything worrisome; if I could squash the pain with mere Advil, surely it couldn’t be a brain tumor.
But it’s also worth noting that until the class of medications known as triptans were released in the U.S. in 1993, there were no specific anti-migraine treatments—meaning my dad had just learned to cope with the medication that was available to him most of his life. Whereas, in my lifetime, a whole host of prescription migraine therapies have hit the market. And in suggesting I just do as he did, my dad was not only dismissing years of medical innovation, but also minimizing the severity of my symptoms (albeit inadvertently). “I can see how recommending an over-the-counter drug that is widely viewed as innocuous could make it seem like migraine is an insignificant thing, and how that might cause you to delay care,” he now tells me.
Indeed, as an adolescent, I internalized the narrative that my migraines just weren’t worth addressing. To see a neurologist would risk receiving an official diagnosis (of migraine, or otherwise), and my still-developing brain couldn’t conceive of anything worse than being officially “sick.” So, I avoided making an appointment, citing time or money, even as my attacks became more frequent and severe in college and beyond. I even flat-out ignored my dad’s suggestion to see a specialist after he learned that I was taking a three-pill dose of Advil on a regular basis.
Then, two things happened that changed my relationship with my migraines: First, I moved in with my partner during the pandemic lockdown, and as we spent nearly every waking hour together, he bore witness to my regular migraine attacks, pointing out that I seemed to have one nearly every other day. Then, soon after, I developed stomach pain from eating, which I would later learn from a gastroenterologist was a symptom of an ulcer likely triggered by my regular Advil habit.
It took the concern of a partner who’d become a sounding board for my nonchalant (if frequent) complaints, and the development of a separate medical condition for me to come to terms with a startling reality: I’d been dismissing my own migraines for years, an act of self-gaslighting that’s common among those in the chronic migraine community.
Why I denied and invalidated the existence of my own migraines for so long
The nebulous manifestation of chronic migraine
The physical location of migraine pain can make it easy to wonder if the pain might just be all, well, in your head—something of your own brain’s creation, and thus, something you should be able to handle just as readily. Making it even easier to dismiss is the fact that migraine is an invisible illness, meaning it has no symptoms that others can see.
Even the way neurologists make a diagnosis can make this disorder feel murky: “It’s a clinical diagnosis, meaning we will make the call based on what the patient tells us about their symptoms,” says neurologist Alina Masters-Israelov, MD, who diagnosed me with chronic migraine (a condition characterized by having 15 or more migraine days per month) when I finally sought medical care last year. “We may do imaging to rule out other causes for headaches, but there isn’t a migraine test.”
The fact that there’s no blood test or scan to show the presence of migraine conjures the adage of the tree falling in a forest: If a migraine happens, and no one—not even a doctor—has any way of observing it, did it really happen? Given that your own account is the only proof, it can feel easier to dismiss rather than acknowledge the condition in the interest of charging ahead with life.
That’s especially true when you consider all the ways in which migraine symptoms can encroach on your life, even outside of the days when you’re having an attack. Beyond the main headache phase, migraine has a prodrome (or preictal) phase, which can cause light sensitivity and sensory disturbances (aura) for up to 48 hours beforehand, as well as a postdrome (or postictal) phase, also called a “migraine hangover,” which can include achiness, tiredness, mood changes, and brain fog for up to 24 hours afterward. And even in the gaps of time between these manifestations of migraine, called the interictal phase, it’s possible to experience less-obvious symptoms associated with migraine, like anxiety, stomach discomfort, and fatigue.
“In between attacks, you may not feel fully normal,” says neurologist Ira Turner, MD, board member at the American Migraine Foundation. “For example, you may have a mild fogginess or even a dull feeling in your head for hours or days before an attack, but it’s so much better than when you’re in the midst of an attack, so there’s a tendency to downplay those symptoms.” To acknowledge them would require accepting that migraine is an even bigger burden on your life—that it’s affecting you outside of your attacks in a way that feels especially insidious.
The negative connotations and societal perceptions of migraine
Migraine itself is a genetic disorder, and the stories we associate with migraine are also passed down. “The generational patterns that happen around migraine affect our own sense of how we should or shouldn’t cope,” says clinical psychologist Sophie White, DClinPsych, whose work focuses on psychological interventions for headache conditions. “If the story you learned at a young age is, ‘I should be able to deal with migraine because my dad dealt with it for years,’ then that could lead you to ignore symptoms.”
Certainly, my dad’s intentions weren’t to invalidate my pain so much as to assuage my medical fears. “I didn’t want you to be worried about anything potentially life-threatening,” he says, noting that he didn’t suggest a neurologist consultation sooner because he was relatively sure I didn’t have a brain tumor or the like, given my lack of any other neurological symptoms. What he didn’t mean to imply was that I shouldn’t worry at all about something affecting my quality of life, he says. And yet, his unconcerned response led me to largely disregard my experience.
It doesn’t help that because migraine is such a vaguely understood condition among the general public, plenty of people have no way of knowing how to respond to someone’s declaration of having a migraine, says Dr. White. “In the face of struggle in such an uncertain situation, we often try to cling to the practical,” she says, “which is one reason why people might commonly say things like, ‘Do you just need a glass of water?’ or ‘Why don’t you just lie down for a bit?’” Though these kinds of concerns are typically expressed with an intent to help, they can have the effect of minimizing migraine symptoms and making the person having the migraine feel as if maybe they’re just overreacting.
After all, no one can really know what anybody else’s pain feels like—which makes it easy for people who get occasional headaches to compare migraine pain to their own experiences, says clinical psychologist Elizabeth Seng, PhD, whose research is focused on improving management of chronic migraine.
“You might say, ‘Gosh, I have this terrible headache,’ and a friend might say, ‘Oh, me too,’ to which you say, ‘Mine is a migraine,’ and they reply, ‘Oh, I know, me too,’” says Dr. Seng. “The problem is that the word ‘migraine’ has been co-opted by the broader culture to just mean a really bad headache.” And if everyone gets bad headaches on occasion, suddenly migraine isn’t a valid condition so much as merely a common inconvenience.
When you realize that folks who don’t get migraines may not be able to grasp what you’re going through, it’s easy to start doubting your own reality—aka self-gaslighting. “You might internalize what other people say and start to think that maybe there’s something wrong with you,” says Dr. Masters-Israelov. “The thought process is that maybe you do just need to fight through it a bit more and learn to get through the day, if that’s what others expect of you.”
Especially in the context of a society that prizes hustling, productivity, and reliability, having to manage migraine symptoms—and take a break to do so—can come at a significant reputational cost. “When you’re struggling with this disease that is unpredictable and difficult to control, there are repercussions for what we call role responsibilities, or your ability to engage as an employee, as a parent, as a partner, as a friend, as a member of society,” says Dr. Seng. “That dynamic has turned migraine into a stigmatized disease and created a stereotype that people with migraine are flaky and don’t care to follow through with their responsibilities.”
It’s only natural to want to avoid being labeled as such—particularly for a Type A overachiever like me, whose worth as a person is tied in large part to their output and professional success. In turn, it’s common for people with migraine to “fool ourselves into believing that we can still function through these attacks or even in between the attacks, when we know, deep-down, that we’re not firing on all cylinders,” says Dr. Turner. “You tell yourself you can manage because you don’t want people to think that you’re just trying to avoid work or family or social obligations.”
The role of lifestyle triggers in the pathology of migraine
Even if you accept that chronic migraine pain is real, it’s hard to avoid feeling ashamed of the potential part you may be playing in triggering it. That’s because lifestyle factors like getting consistent sleep, staying hydrated, eating on a regular schedule, and avoiding dietary triggers like alcohol and chocolate have been shown to play a significant role in the pathology of migraine. It’s “why we often stress lifestyle modifications in treatment,” says Dr. Masters-Israelov.
Even so, these lifestyle behaviors comprise just one part of the story when it comes to migraine onset. Migraine is a neurological disorder, and the brain of a person with migraine is more susceptible to all kinds of environmental changes than that of a person without migraine (more on that below). So, the idea of a patient being able to fully control their migraines or diminish their frequency by simply changing certain behaviors is false, says Dr. Seng. Strengthening that misconception is “the fact that for a lot of people, other headaches do come around fairly controllable events, like drinking alcohol and getting hungover, or skipping your usual morning coffee,” she adds. That just makes it easier for people with migraines to blame themselves.
To make matters worse, shouldering the blame for your own migraines is associated with higher levels of disability and higher depressive symptoms, according to Dr. Seng’s research. Meaning, it’s not just inaccurate to believe you cause your own migraines; it’s dangerous and unhealthy.
But because I’d heard from my dad about the role of lifestyle behaviors in managing migraine from a young age, I internalized the idea that even a true migraine diagnosis should be something I was able to control. According to Dr. White, this is common for people who have an “internal locus of control,” or who subscribe to the general ideology that if you work hard at something, you’ll get a good outcome. In this mindset, every attack became a poignant reminder of my personal failure to control my condition—and to acknowledge the reality of my pain would be to admit defeat. Anything (yes, even full-blown denial) was preferable to that.
How I’m learning to take my own migraine pain seriously
I probably wouldn’t have ever seen a neurologist of my own accord. Outside factors—my partner’s insistence, and perhaps more pressingly, the mandate from my gastroenterologist that I stop taking Advil on account of my ulcer—pushed me there.
But once I met with Dr. Masters-Israelov, my perspective changed massively. My symptoms, she said, were indicative of chronic migraine. They weren’t something I could ever be expected to fully manage or control myself. And as I’d come to learn, there were plenty of medications on the market approved specifically for this neurological disorder—which, to be clear, was what I had.
“Neurological disorder” were the words that really stuck. I hadn’t conceptualized my migraines as a disorder of any sort, much less a brain condition. But that’s exactly how migraine is understood in the medical literature, Dr. Masters-Israelov told me. “The trigeminovascular system of the brain is thought to be more sensitive in people with migraine, meaning that the neurons fire more and more often, causing the attacks,” she says.
While, yes, that part of the brain may overreact to certain lifestyle behaviors in folks with migraine, it’s also just more susceptible to plenty of other environmental shifts, as noted above. “Things like hormone changes, weather changes, the need to travel, or having a stressful day at work can play a role and aren’t controllable,” says Dr. Masters-Israelov. While I’d also learned about these potential out-of-my-control triggers from my dad, I’d largely brushed them off as cop-outs until hearing them straight from the mouth of a neurologist who specializes in migraine.
Still, I’ve battled my own internal resistance to Dr. Masters-Israelov’s management plan. When she first suggested I track my migraines to spot any patterns, I found myself regularly convincing myself out of recording them (“That was probably just a headache!”) so as not to reify their existence. When she first prescribed me a drug to treat my migraine pain as it’s happening, I regularly opted not to take it, telling myself, instead, that if I just rested my eyes for a bit, the pain would “go away.” (It almost never did.) And when she initially prescribed me a daily preventative drug, I pushed for the lowest possible dose. To take medication that came from a doctor still felt like evidence of my own personal failure to solve this condition myself.
In learning more about migraine, though, I’ve come to realize how much of a misperception that is. One key reason? Recent research points to the fact that certain things long regarded as migraine triggers may not always function as true triggers that we can control at all; instead, they may reflect early symptoms of a migraine already in progress.
Take chocolate as an example. “Patients have often told me they’ll get an uncontrollable urge to eat chocolate, and then upon doing so, they’ll get a migraine—but what we’re learning is that the craving for chocolate may be evidence that they’re already in the prodrome phase of a migraine,” says Dr. Turner, “and they’ll actually get the headache whether they eat the chocolate or not.” That’s to say, we may be placing more blame on lifestyle triggers than is really warranted, he says.
Evidence like this has helped me to understand that accepting a migraine diagnosis isn’t reflective of some personal inability to do or avoid certain behaviors, nor is it overreacting to a small inconvenience. And the way my migraine attacks have majorly decreased since seeking professional care has shown me the power of listening and responding to your own pain.
In recent months, I’ve learned to embrace Dr. Masters-Israelov’s treatment plan: Now, when I feel the earliest twinge of migraine pain, I take my prescribed dose of sumatriptan (when it’s likely to be most effective), and every time the drug clears my symptoms, I feel that much more empowered. I no longer shy away from my daily preventative dose of propranolol, and my migraines are down from 15-plus a month to about five or six.
These days, I’m also far more honest with myself (and others) when I’m dealing with a migraine and need to turn down a plan. And I’m learning to see my open declaration of my migraine symptoms as a sign of personal strength, not an admission of weakness.
Perhaps the clearest proof of my progress in that direction is my decision to write this story. With its publication, I’m marking myself—publicly and forever—as a person with chronic migraine. And I can think of no bigger way to keep myself accountable to my own truth.
Citations
Well+Good articles reference scientific, reliable, recent, robust studies to back up the information we share. You can trust us along your wellness journey.
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- Vincent, Maurice et al. “The not so hidden impact of interictal burden in migraine: A narrative review.” Frontiers in neurology vol. 13 1032103. 3 Nov. 2022, doi:10.3389/fneur.2022.1032103
- Bron, Charlene et al. “Exploring the Hereditary Nature of Migraine.” Neuropsychiatric disease and treatment vol. 17 1183-1194. 22 Apr. 2021, doi:10.2147/NDT.S282562
- Seng, Elizabeth K. PhD et al. “Lifestyle Factors and Migraine.” The Lancet, vol. October, 2022, https://doi.org/10.1016/S1474-4422(22)00211-3.
- Grinberg, Amy S, and Elizabeth K Seng. “Headache-Specific Locus of Control and Migraine-Related Quality of Life: Understanding the Role of Anxiety.” International journal of behavioral medicine vol. 24,1 (2017): 136-143. doi:10.1007/s12529-016-9587-2
- Noseda, Rodrigo, and Rami Burstein. “Migraine pathophysiology: anatomy of the trigeminovascular pathway and associated neurological symptoms, CSD, sensitization and modulation of pain.” Pain vol. 154 Suppl 1 (2013): 10.1016/j.pain.2013.07.021. doi:10.1016/j.pain.2013.07.021
- Karsan, Nazia et al. “Are some patient-perceived migraine triggers simply early manifestations of the attack?.” Journal of neurology vol. 268,5 (2021): 1885-1893. doi:10.1007/s00415-020-10344-1
