Why I Stopped Looking for a Migraine Cure

There’s a woman on TV. She’s standing against an illustrated bed, refusing to lie down. I hate that commercial. Every time the commercial plays, I silently vow never to wear ill-fitting, high-water khakis. Does society imagine that all people with migraine are this poorly-dressed? Or that we spend all day in bed, hoping to wave to cartoon animations of our neighbors? Why didn’t the stylist just call it a day and dress her in sweats?

Second, isn’t it weird that our country advertises prescription meds? Think about it for a moment: our televisions peddle out prescription promises and serious medical treatment, just as they do pre-owned cars or $10.99 specials from Red Lobster. Not only is it strange, commercials like this perpetuate the misguided promise that chronic diseases have a magical answer. Take this pill and your problems will disappear, just as quickly as a plate of baby back ribs.

 

Shockingly, the United States and New Zealand are the only two countries where direct-to-consumer advertising of prescription drugs is legal. No other country allows it. And, before you begin to assume I’m anti-prescription drugs, let me assure you I’m not. In fact, I’m all for researching treatment, discussing medication with doctors and being open to safely trialling various therapies. Furthermore, I benefit from Botox for Migraine.

What I’m against is the fallacy prescription drug commercials project. Treatment for chronic illness like migraine is an incredibly bumpy and winding road. Qualifying for Botox for Migraine certainly is not as simple as its commercial promises: first, patients must prove they have unsuccessfully trialled at least three preventative medications; second, patients must show they have at least 15 attack days a month. Even if patients prove these things, insurance companies may not approve treatment, leaving patients with no option but to pay the full treatment cost every three months, if they’re willing to move forward. To add to the conundrum, Botox for Migraine typically doesn’t begin to work until after its third or fourth treatment, leaving newer patients rattled with a sense of frustration and failure.

I remember when I first was denied Botox for Migraine. I sobbed for an entire afternoon because I truly believed this would be my miracle, my escape, my cure…and insurance had the gall to deny me the opportunity to live and be normal again? In between waiting for updates from doctors, I received well-intended text messages and emails from family and friends, “Have you tried Botox for Migraine?! It’s supposed to really help! My friend Sarah gets it and she’s been cured!!” I felt like such a failure, like a kid whose face was pressed against the window to an unattainable candy-crusted life.

And there’s that word. That evil little word that sits on the tip of almost every chronic migraineur’s tongue: cure. It makes it all seem so simple and magical. Take this and – poof! – you’ll be cured. Suddenly patient accountability and triggers drift away. Take this pill and your troubles will melt away. It’s as though we’re something broken that needs to be fixed, like a lamp or a zipper.

The fact is that migraine is far more complex than that. It’s a condition and disease that exists within a spectrum of severity. Some people only get one to two horrific flares a year; whereas others are hammered on a daily basis. And what’s difficult for chronic migraine patients to understand is that searching for a cure only leads to disappointment and additional stress. “I took my pill. I got my Botox. Why am I not cured?Why am I not as functional as my episodic friend? What’s wrong with me?” Nothing is wrong with you. You’re unique.

The truth is that neurologists and headache specialists still are befuddled by the migraine mechanism. They know migraine is genetic in 90 percent of their patients. They now know that nerves are involved, and possibly serotonin levels. But the switch, the trigger is different in everyone. Every migraine patient exists as a snowflake that requires individualized, multifaceted treatment. What works for me may not work perfectly for someone else. And while I appear to be back to “normal,” I still deal with migraine symptoms throughout the day.

Regrettably, pharmaceutical companies and the medical community glide over the complexities. I recall my past neurologist once saying, “Oh yeah, you’ll be back to normal this time next year.” It sounded so easy, so simple! What she didn’t explain is that my normal is vastly different than it used to be.  She also didn’t realize how damaging that promise can be to a chronic sufferer. What if you aren’t back to normal within 12 months? Did you fail? No, not at all. The treatment failed you.

I decided to shift my perspective during my search for a reduction in pain and for better quality of life. So I asked myself: What were the things I could control? Well, I could control my sleep schedule, my diet, my daily habits, my exercise routines and screen use. I could reduce my use of triptans and NSAIDs. I could study these habits and see how they individually impacted my life, for better or worse. And I then could continue to do more of what made me feel good, happy and satisfied. During this existential life shift, I signed up for every program NYU and UCLA offered me. Cognitive behavioral therapy? Cool, yes. I’ll do it. Meditation? Awesome. Give up sugar, dairy and carbs? No problem. No ask was too big. I became a medical kitchen sink.

During this time I continued to track everything…every symptom, pain location, quiver, moment of mobility loss. At times my obsessive behavior manifested in self-destruction: did that slice of store-bought bread trigger my migraine? Or was it the added “natural flavor” in flax milk? I had to learn to calm the you-know-what down. Focus. Identify foods and habits that help; stick with them and only focus on the positive. Look for improved quality of life, not a cure. Take thrill in a level-three migraine rather than lament not having a pain-free day. I stopped asking for a day without a migraine; I stopped looking for a cure.

Let me be clear: this does not mean I gave up. I did exactly the opposite. I started to have more faith in myself and my body’s strength and resilience. I stopped waiting for the proverbial white rabbit. By focusing on how to improve my quality of life and how to celebrate the little victories, I began to notice and experience progress. I became mindful of tiny accomplishments, like cooking with the overhead kitchen light on or making it through the grocery store without having mini-convulsions. Typically I would realize it after the fact, like a mild Oh Right. That just happened. Awesome. And after time, these mini-accomplishments built upon themselves until I had the confidence to do more. I started taking day-trips to neighboring cities. I tried new things and met new people. Suddenly my focus wasn’t on current symptoms but on future plans. My life started to feel richer and more exciting. I didn’t need a cure to feel like a success.

I can tell you right now I’m not cured of migraine. My migraine cycle isn’t even in remission. Migraine is in my genes and most likely will be passed down to any children I may have. Migraine most likely will be part of my day-to-day for the rest of my life. What’s changed is I’ve shifted my focus, improved my quality of life and reduced the frequency of severe attacks. Even now as I type this I’m experiencing pain severe enough to annoy me, my peripheral vision out of the right eye has completely grayed, my left shoulder is starting to seize up and my feet are completely numb. I could freak out about my symptoms…or I could look back at what I’ve just typed and celebrate the fact that my word recall is back. My sentences make sense (or at least I hope that they do). My memory is back. I was able to ignore my symptoms long enough to type 1,435 words. And that’s worth recognizing. Yes, I’m pretty close to being satisfied with my quality of life (the missing piece is a job, bet you didn’t guess that). And for now that is a massively satisfying achievement.

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Thinkstock photo via Viktor_Gladkov.