What I Wish Neurologists Knew About Patients With Chronic Migraine


I understand I’m just a file. I’m a face and a file amidst hundreds of other patients. I’m a mere a blip on your radar. Your day is busy, full of befuddling cases and complex mysteries that delve far beyond my comprehension. I cannot dream to do what you do. If you’re a neurologist, you’ve studied the brain and the labyrinthine system of nerves that weave in and react throughout the body. If you’re a headache specialist, you spent even more time researching and understanding migraine fundamentals beyond my understanding. You’ve seen how the brain lights up and reacts to stress, over-exertion and high levels of histamines. So why do I feel that you understand so little about the experience?

What you don’t understand is this: quite often, you’re our only hope. While we’re just 30 minutes to an hour on your schedule, we patients have waited for this time slot – eagerly preparing for it, anticipating it, outlining questions and reviewing our most recent reports from Migraine Buddy. We hope (sometimes fruitlessly) we’ll have our wits enough about us during the appointment so we can remember a modicum of what was discussed. Perhaps we’ll take notes, or ask a family member to join us so important details aren’t missed.

Your lights are too bright. Why is it that the neurology offices always have fluorescent lights? If we’re truly lucky, one will flicker. Haven’t you already learned those bulbs are too grating, too triggering? Shouldn’t that be migraine lessons 101? Or perhaps this is a purposeful design conspiracy, installed so you can see just how quickly migraine kicks into gear and rears its ferocious head. Sometimes we wait up to six months to sit under these fluorescent lights. Why don’t you have a lamp instead? A nice dimly-lit lamp that emits a soothing rosy hue. Perhaps we would be better able to focus and participate if your office were more accommodating. Don’t you know? We waited six months to be here, to sit in this room, on this hard chair…the least you could do is have a proper lamp.

 

I apologize for going off topic. Often migraine does that to me. Because my experience is a physical and experiential affront. Migraine is not polite. It does not wait for the appropriate moment to enter the room. Migraine did not read The Miss Manners Book of Etiquette. Migraine is rude and brazen and crass. It’s disruptive, interrupting conversation with staccato-tinged language, tripping up our words with aphasia, seizing the moment with flashing hallucinations and tinnitus that hums constantly in the background. Do you mind? Yes, that trash can right there. I need it immediately. Because migraine does not wait for the bathroom. Migraine does not wait for the toilet or a closed door. Migraine is rude.

Oh, I promise I prepared for this appointment. I wrote out my questions and printed my reports and practiced my circle breathing while waiting 35 minutes in the waiting room. I brought my rescue kit, my peppermint oil and Zofran and Biofreeze and topical marijuana. But, you see, someone out in the lobby was wearing a fragrance. It was a saccharine vanilla affront that crept its way up my nose, disrupting the fine balance I created in order to appear normal. And, I know, I know: I’m not your only patient (I may not be the first one to puke in your office today), but you’re my only hope. Your words hang on my lips for weeks, months. I’m just an hour on your schedule, but your decisions affect my livelihood, my future, my day-to-day.

My body is your battlefield of diagnoses, miscalculations and medicine trials. I am your willing guinea pig; poke and prod me full of botulism before sending me on the way to misguided hope. I’m a supplicant to the alter of new-fangled pharmaceuticals and mild-mannered lab coat condescension.

What you don’t understand is your words hold power. Last time you promised I’d feel better, that I’d be back to normal before I know it. You make migraine sound so easy, so simple. If it’s so easy and simple, why does it cost our country billions of dollars a year? Why is my migraine so bafflingly different than my friend’s migraine? And why are you calling it a headache? This is not a headache. This is a full-body assault. When did Webster’s and its hip and sassy posturing add vomiting and blindness to its definition of “headache?” Because last I read “headache” meant a pain in the head. “Headache” is a gaping understatement for this hallucinogenic and sometimes paralyzing experience.

Your words have power. Your prescriptions have power. We hold fast to the promise of feeling like our old selves again and you effectively sell that promise with the rip of your prescription pad. Why do you make it seem so easy? Because the truth is that while chronic migraine is easy to diagnose, it is not easy to treat. Too many of us have been failed by treatments; too many of us have been shuttled from one office to the next, hoping for a more straightforward diagnosis because anything would be better than the migraine swamp. Because what so many of you forget to explain is that chronic migraine rarely goes fully dormant.

We may learn to cope with the symptoms, to ignore the constant buzzing in our ears or that fuzzy gray blur that obstructs whatever may be present to the casual eye… We may learn to better handle vicious migraine attacks, but that doesn’t mean we’re cured. It doesn’t mean we’re back to our old selves. It simply means we’ve accepted a chronic disease and have learned how to hide how disruptive it actually is. We’re not truly better, we’re just better actors.

So next time you pull out one of your charts, don’t perpetuate the migraine miracle myth. Be honest with us. We can handle it. By now you should know that migraine patients come from tough and sturdy stock. Treat us with the respect we deserve by being honest and setting real expectations. Warn us of side effects. Be open to alternative treatment like elimination diet and cognitive behavioral therapy. In fact, encourage it. Research and advocate for these therapies. Listen to us. Consider a treatment plan beyond Topamax. Why do all of you immediately jump to prescribe Topamax? Out of the hundreds of off-label treatments for migraine, why is it always Topamax? And finally, remember we’re human, just like you. We have feelings and fears and the consuming desire to return to a slice of who we once were. We want to succeed, even if that means simply improving our quality of life. And we desperately want you to be a part of that journey.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Minerva Studio.

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