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‘I Spent Eight Long Years With Undiagnosed Migraine Disease’

May 14, 2018
From the WebMD Archives

By Janet Geddis

We only got to visit my grandparents and cousins in Pittsburgh once a year, and I was stuck in bed on the third floor—far away from the fun—with what I first thought of as a really bad headache.

I was 13 years old—for a young teen, fear of missing out (FOMO) is an acute force, and I would have pushed myself to ignore the head pain in order to join my cousins downstairs for a game of Uno if I hadn’t become so incredibly dizzy every time I tried to get out of bed.

I heard my grandmother slowly come up the stairs to the hot attic room where I lay. I don’t recall what she brought to me that day, but I remember the scent of one of her signature dishes—chicken and noodles—wafting alongside her, working in harmony with the smell of her perfume that was suddenly revolting to me after years of its being comforting and homey.

When my grandmother left the room, assuring me that I’d feel better soon, intense hunger took over my thoughts. The more I thought about the dinner everyone else would soon be enjoying downstairs, the more my head pounded. I tried to redirect my thoughts, choosing instead to fixate on one of my favorite foods at the time: a footlong hot dog from the 50s-style diner we used to go to.

Within seconds of imagining these meals, I got violently sick to my stomach.

The head pain intensified, throbbing as if my heart were in my temples instead of my chest. The voices of my many relatives downstairs, usually comforting and joyous, felt like sharpened swords that were poking at my brain. My nausea relented for a couple of minutes after the first time I vomited, but it resurfaced a few minutes later.

By the time I woke up the next day, I was wiped out and felt a keen sense of having lost track of time. Happily, I was no longer nauseated or in pain.

For years, I wrote off this intense episode as a strange, rapid-onset flu. It wasn’t until I was in my twenties that I was finally diagnosed with migraine disease and was able to reexamine some of the periods of illness in my past. Like many migraine patients, it took me years many years of being seriously ill with this chronic condition before I got a proper diagnosis and treatment.

It’s now been twenty-five years since my first obvious migraine attack, and it’s been seventeen years since my diagnosis. You read that right: I spent eight long years with undiagnosed migraine disease.

I remember telling doctors about my frequent headaches, headaches so bad that I couldn’t function through them. I told them about going home nearly every day after school and taking a two-hour nap in order to break the cycle. Back then, I didn’t realize that the sensitivity to light and sound were part and parcel of my illness. Doctor after doctor dismissed my pain (one with a literal wave of the hand!), saying that I was lucky to be so healthy and that if what I was doing was working, I should just keep doing that.

Can you imagine telling an ambitious, active, and smart teenager that it was normal to have pain nearly every day, that it was normal to need to sneak away to a quiet classroom to nap during lunch because the sounds of the cafeteria somehow made her want to vomit?

While I have grieved over the hundreds and hundreds of days (and thousands of hours) I’ve lost to migraine, I try not to wallow in the past. I am lucky that I did finally have a doctor who was familiar enough with migraine to give me a diagnosis and start me on a treatment plan.

I’m now thirty-eight years old, and I’ve done what few healthy people have been able to pull off, let alone people with and often-debilitating chronic illness. I started my own business and live every day going to my dream job: I own and operate two bustling, independent bookstores in Georgia. Success may look different to me than it does to others. If I am able to make three-quarters of my meetings, I am proud of myself. From the beginning, I’ve made sure my management team and coworkers know that I have a serious illness that can sometimes make me either completely absent for days or mentally slow if I am able to show up.

When you work with books, you’re expected to be able to talk about them with sophistication. I can, but it can be hard when I am experiencing difficulty word-finding (another sign of migraine) or am distracted by blurred vision caused by something called “scintillating scotoma.” Scintillating scotoma refers to the visual disturbance that is often part of my migraine aura, the phase that precedes my head pain. The blurriness makes its way across my field of vision when I’m trying to write an email or hold an intelligent conversation.

This illness sometimes gets me down. It gets in the way of my being able to be the reliable, thoughtful coworker I’d like to be. It has driven me to cancel plans with dear friends; a few months ago, I had to skip a much-anticipated trip to see beloved family members in Florida because I knew I couldn’t handle nine hours in the car with the nausea and pain of the migraine that set in the day we were to pack up the car and drive.

While I would love to be free of my migraines, I know that this illness is chronic and that there is no cure. It has driven me to take better care of myself: I eat and exercise better than I might if I had no serious chronic illness. I also value my healthy time and protect it as I’m able, trying to make sure I spend my pain-free days doing a mixture of things I have to do (work, paying bills, taking out the garbage) and want to do (spending time with friends, traveling, and—yes—work).

Migraine is a part of my life, but it hasn’t taken over my life. It often slows me down, but I am lucky in that it hasn’t held me back. Somehow, despite the weddings I’ve missed and the travel I’ve had to cancel and the family dinners I was too sick to attend, I have a happy, fulfilled life living with migraine.


Janet Geddis, also known as The Migraine Girl, is a business owner as well as a longtime migraine patient advocate and essayist at migraine.com . In addition to writing about her struggles with chronic migraine disease, Janet is a health consultant and professional speaker .

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