My Migraine Story

If you’re living with migraines, you know the feeling. That dreaded vice grip, the pulsing in your temples and pain in your eyes.

That’s just what I experienced when I awoke the morning of my TED talk rehearsal. After taking my migraine medication, I was able to make the four-hour trek across Southwestern Montana, on winter roads, to the Bitterroot Valley and limp my way through my trial run. My worry then was that the next day, the day of my talk, I’d experience a rebound headache from having taken the medication.  One of my impromptu lines the next morning that got the strongest response was “I’ve battled migraines since I was eight years old. And since five a.m. this morning.”  If you watch my talk, you’ll hear the gasp from the sold-out audience. It’s hard to imagine a worse fate for a migraine sufferer than awakening the day of your biggest talk (a TED talk for god sake) battling light sensitivity, nausea and with your temples locked in a squeezing vice, fighting the urge to dry-heave every time you encounter a gentleman’s cologne or lady’s perfume.

Minutes before I went on stage, I was lying on the floor in a dark room, but once it was showtime, I hit the ground running. As fate would have it, early in my talk, the left-side stage lights burnt out (my migraine was in my left eye and temple). I remember thinking, “God, these guys are good. I didn’t even tell them I had a migraine.”  Since I’d given dozens of talks with a migraine in progress, I knew it could be done but would today be different?

When I finished the talk I had rehearsed countless times and walked off stage, one of my dearest friends was waiting to give me a bear of a hug.  I realized the talk had been a success.  As the sound technician removed my microphone, I reached into my Levi’s pocket (you know, that little one on the right side) and popped the already unwrapped medication under my tongue.

While I contend with other physical challenges, nothing has impacted my life more than migraines.  Yet it’s something I’ve been reluctant to talk or write about. Depression, sure, I feel it’s my obligation to talk about mental health every time I speak to a group of young people. Ankylosing spondylitis? Well, it took some time, but I’ve written ‘My Story’ for the Spondylitis Association of America and penned thousands of words in three books about my battles as a spondy warrior. Dyslexia is another story I share with teens and school groups. Factor V, a crazy rare blood clotting disorder? There’s an entire chapter in my second book dedicated to my brush with eternity that was caused by this condition. But migraines, for the most part, have been off limits. I know the migraine stigma is a big part of my reluctance to open up.

My migraines began after a head injury (bike accident) when I was eight years old, a 2^nd grader in Coeur d’Alene, Idaho. Trying to get through school as a kid with migraines was a constant battle. I remember the principal at my middle school graduation telling my mom that I was the first student to graduate on time—who never made it through an entire week of school.

High school was much the same, but the intensity and frequency of my migraines picked up considerably after another head injury my freshman year. This concussion (with rear and frontal swelling, from a blow to both the front and back of my head) kept me out of school and off the court for over a month.

Socially, the migraines began presenting a new challenge. This is when I first remember becoming self-conscious about my ‘headaches’. Before, they caused agonizing pain, but that was it. Now they seemed socially unacceptable, especially for a young man.  Being entrenched in the machismo world of athletics made it even worse. Coaches and teammates didn’t understand my migraines, and more often than not, they didn’t believe they were real, saying things like, “Come on dude. It’s just a headache,” or “Tough it out,” or my favorite, “Guys don’t get migraines, that’s a girl thing.” To say it was challenging for my migraine-ravaged brain to process and deal with, especially as a cocky and standout basketball player in a highly competitive Seattle suburb, is an understatement.

It didn’t matter that a few years earlier, Scottie Pippen himself bonked in Game Seven of the Eastern Conference finals due to a migraine.  Scottie’s reaction:  “I was scared.  A couple days after the game my head was still sore.  It was like it wasn’t going away.  I went and got a brain scan.  I thought I was dying.”

I remember a part of me feeling hopeful. I mean, if Scottie Pippen gets migraines, it has to be ok for me too, right? But even Scottie was ridiculed.  More and more, I became afraid to open up about mine.

The thing about living with migraines is it’s a lonely, and often isolating, journey. People rarely even try to understand the debilitating nature of migraine pain. Back then, I could commiserate with the great Super Bowl winning running back Terrell Davis. In a People Magazine interview, he described the pain associated with his migraines.

“I didn’t want to live through that period.  Suicide crossed my mind. I didn’t plan it, but the only thing I could think of was just ending it.”

In college, I lived with the same fears that haunted me since my first migraine episode a decade earlier: How will I deal? How will I cope? How will I get by? And, perhaps more importantly, how will my professors handle this situation when I have to miss class, holed up in a dark room, in the fetal position, just trying to get through. Lucky for me, the head of my department at the University of Montana, was a compassionate and visionary man (mentoring and showering me with love and generosity), who himself dealt with a rare and often debilitating condition that forced him to do things differently.  And differently he did. I remember on more than one occasion, Tom allowing me to lie on the leather couch in his office, giving me the time and space for my medication to kick in between classes, hoping I could just get through the day. When other professors didn’t ‘get it’, Tom helped them to ‘get it.’ To this day I am grateful for Tom Roy.

With the support of people like Tom and my mom and a gritty resilience and determination, I graduated from two colleges with high honors, on the Dean’s List. This represents one of my proudest accomplishments because, between migraines and dyslexia, I often wondered if it was even possible.

I spent my summers in college working as a ranger naturalist in Yellowstone National Park—my dream job—and upon graduation, I moved to Yellowstone permanently, planning to ranger fulltime. Chronic migraines and 8-5’s aren’t a very good fit, I knew this; but this was a gig worth fighting for. You only get so many sick days in an 8-5 and more often than not, supervisors don’t “buy” the frequency and severity of chronic migraine, so what choice do we have, but to grind? I lucked out in that my supervisor was kind and caring.  The problem, however, with working day after day with migraines—other than the complete drain on the system and corresponding fatigue—is that you’re forced to take migraine medication to function, but like so many things in life, migraine medication has its pluses and minuses. When it works, it’s gold, but take it too often, and you risk rebound headaches and rebound headaches represent a slippery slope. It’s a fine line and precarious dance. I remember having migraines during my evening programs, speaking in front of packed campground amphitheaters, battling through the nausea, squinting through the slideshows, heading out back and throwing up the minute the show was over while everyone went back to their tents. It was brutal, but the drive home was the worst. What should have taken fifteen minutes from campground to house, became a saga of pulling over every time headlights passed due to my light sensitivity.

Migraine sufferers all have our triggers. Working as a fly-fishing guide for seven summers on the hallowed waters of the Yellowstone and Madison River, I couldn’t avoid most of my triggers (heat, bright light, shoulder/neck tension, dehydration, inconsistent calorie in-take). Those hot, sunny, summer days in August were a recipe for migraines—fourteen, seventeen, twenty-one, twenty-three (my all-time high) migraines in a month. I came to dread those hot summer days (even though summer’s my favorite season). Staring into the sunlight reflecting off the water as I kept my eyes on my client’s bugs for seven hours a day (readying to tell them to “set it”) as I rowed us down river, was the grind of all migraine grinds. I’d frequently stop for a “bathroom” break, always choosing to do so, near some hurried (translation: loud) water, so I could sneak off into the willows to dry heave the nausea away.

As a head varsity basketball coach, running a practice with a migraine is also a steep hill to climb, but you can swallow the whistle, let the kids know you’re up against it, and keep it a little low key for the session. Coaching a game, with the bright lights, band playing, whistles piercing, and sneakers screeching is another experience entirely. Brutal.

Exercise-induced migraines are no joke, so sometimes I wonder why I continue to push myself on the bike and in the water the way I do. It’s like clockwork, anytime I pull off a big endurance effort, it triggers a migraine.  And it’s never a mild one, it’s always a doozy. I suppose that’s how much I love my time in the saddle and swimming. It doesn’t matter how strong I’m feeling, nor how trained up and ready I am, when I put in big endurance efforts, migraines follow.  I’ve had to come to accept that as a consequence for doing what I love, something that makes me feel so alive.

I can’t think of a much bigger moment for anyone than the release of their first book—especially if that person fought dyslexia and reading compression issues all through grade school. The release of my first book was next level. My publisher’s publicist is a straight up pro. There are bookstores and then there’s Downtown Denver’s Tattered Cover. Tattered Cover LoDo (my all-time favorite book store), as they call it, is the bookstore by which all others are measured. Grizzlies On My Mind was released there one bluebird afternoon in May. The same day, one hour before my presentation and signing were scheduled, I was the closing keynote speaker for a rally—a protest of the Keystone XL Pipeline—on the steps of the Colorado State Capitol. What could be cooler or bigger than this? After I finished with the Sierra Club Denver Metro-sponsored rally, they’d rush me over to Tattered Cover for the release of Grizzlies On My Mind. I had dreamed of this day for years. I awoke that morning with an ER-inspired migraine. Seriously. I’d been there before, so I took my medication, let it kick in, arrived at the rally with a migraine hangover and in a druggy haze.  But preach I did, and speak I did. It was still a day for the ages.

I still write books, I still speak a lot, I coach, I manage a wildlife watching company in Yellowstone, and I wear a number of other hats; but now I’ve got a gig more important than all of the others combined: dad. I remember when I became a single father (after a rough and rugged divorce) and how this fear of being able to be a good dad with chronic migraines consumed me. You can’t call in sick on your daughter—not when being her dad is your highest calling. So when I wake up with a migraine on Sunday (our Sunday morning ritual is listening to traditional Hawaiian music while I make gluten free chocolate chip/banana pancakes), I put on the sunglasses, don the cap, turn down the volume a bit, and get to cooking. When it’s a school morning and I’ve been up all night battling a migraine, I go downstairs early, knowing that it’s going to be a process, and pick away, step by step, at breakfast, packing lunch and writing her daily lunch note, laying out her clothes—often dry heaving between tasks—but getting it all done before she comes down the stairs, so we can sit (as I rub my temples) and talk before she attacks another day at school.

Why am I sharing this story now, in the midst of a four-day migraine maze? I suppose I do so for a couple of reasons.  One is that it’s therapeutic to share (after years of bottling it up).  The other is that I hope it can uplift and inspire people dealing with migraines (or any other misunderstood malady), and perhaps provide a little perspective for people who doubt the validity of those living with this condition. When we minimize our migraine or are afraid to tell our story, how can we advocate for ourselves? How can we find our Amy Pakula (my migraine knowledgable physical therapist who actually gets it)? We all need a team if we’re living with migraines, but how can we find our team (partner, family, friends, doctors, counselors, acupuncturists, physiotherapists) if we’re afraid to tell our story, afraid to advocate for ourselves? So I’m sharing this in hopes of inspiring others to find their voice and to tell their story.

Anyone who loves the game of basketball knows and respects Dwayne Wade, but most people don’t know that he’s fought migraines since he was a boy. “There’s different levels of migraines,” Wade said. “I’m not out of the clear, so tonight could be a tough night for me. Hopefully it’s not, but it’s different levels. I could explain it all day, but just know it’s not a good thing. It affects more than just your head. It affects your body, it affects your energy, it affects your eyes. It affects your attitude, of course. So there’s a lot of different levels of migraines. It’s unfortunate.”

That’s perhaps the most misunderstood thing about migraines. It’s not just the episode and migraine itself, but the postdrome that follows the headache phase (fatigue, dizziness, nausea, body aches, difficulty concentrating), exhausting symptoms that can last for days. I call it the migraine hangover and the medication haze. Many migraineurs describe the day(s) following the migraine as a similar feeling to over-indulging in alcohol. The fatigue and melancholy that follows my migraines has always reminded me of having the flu. People complain about the flu or a cold, but pain is relative. When you’re sick, you lie low, feeling lousy and fatigued, vegging out, binging your favorite show—none of which are possible in the midst of a migraine. When battling a migraine, it’s straight up survival.

When I’m gearing up for a big ultra-endurance style event on the bike, or a long open water swim, or a bike-packing adventure, I’m thinking about all of the last-minute details that the other riders and swimmers have on their mind, “Did I train enough?” “Did I see Amy (my PT)?” “Is my equipment ready?” “Is my hydration and nutrition dialed in?” But I, and other migraine warriors, have one other thing to fret over, and it’s not a little thing at all.

Migraines rob us of our time with loved ones, they rob us of our ability to plan and execute the best laid out game-plans (and vacations). Migraines are the ultimate disruptors. Migraines force us to live in the moment, to be grateful when we’re not fighting a ‘head,’ knowing that one can strike at any time.

One in seven people worldwide suffer from migraines. That’s one billion people. And yet, people don’t ‘get’ migraines, not even our friends. It’s considered the second most debilitating disease on the planet (right after back-pain). And yet it’s one of the least studied, least funded and most misunderstood ailments I know.  Like so many migraine sufferers, I try to do everything right. I eat clean, gluten free, low sugar, nutritious meals (with lots of fresh fruits and veggies); I don’t drink alcohol and I’ve never messed with coffee; I always wear sunglasses, even in the dead of winter; I’ve never smoked or used any tobacco products;  I stay away from chocolate, aged cheese and all my other migraine triggers; I hydrate (no pop, no soda, nothing but water, La Croix and tea); I practice good sleep hygiene, going to bed and getting up around the same time each night and morning (I don’t sleep in or nap); I exercise daily, I journal, I’m fit and strong; but I still get migraines, and so do millions of others who are doing everything right.

That’s the thing about migraines, there are not always answers.

We don’t want your pity, we just want you know that our migraines are for real, they’re legitimate, and oftentimes incapacitating. We aren’t making excuses or avoiding commitment, we aren’t broken or weak, we’re just playing the cards we’re dealt (the painful and frequently unbearable cards) to the best of our ability. Next time you see someone squinting and rubbing their temples or bailing on that ever important meeting, maybe, just maybe, they are one of the forty million Americans, and one billion humans walking this earth, who endure headaches that would bring most non-migraine suffers to their knees.

Migraines aren’t who we are, but they’re a big part of our journey and life story, and they are a part of our story worth telling.  I’m still not comfortable talking about my migraines, or sharing my migraine story, but hopefully this is a start, and hopefully someone else struggling with migraines will read this and feel a little less alone, because living with migraines can be an isolating and lonely journey. But there’s a tribe of us out there, one billion strong.

Fight on migraine warriors! Fight on! And may we unite, and not be afraid to tell our story.

With nothin’ but love, mwl