What Not to Say to a Migraineur

What Not to Say to a Migraineur

According to the Migraine Research Foundation, more than one billion people worldwide suffer from migraine. It is the sixth most disabling illness in the world, and sends someone in the U.S. to the emergency room every 10 seconds.

And yet…

Every migraineur, at one time or another, has had the validity of their pain questioned by someone who doesn’t suffer from the affliction. To an extent, this is understandable — migraine is an invisible illness, one that shows no outward signs of trauma. But the pain is real, and unsolicited advice, dismissive questions, and snide comments only exacerbate what is already an incredibly frustrating malady.

“Migraine is 50 percent more prevalent than depression, twice as prevalent as osteoarthritis, three times as prevalent as diabetes, fifteen times as prevalent as rheumatoid arthritis. It affects three times more women than men, more whites than blacks, more blacks than Asian-Americans, more working class than upper class.” 
—  Andrew Levy, "A Brain Wider Than the Sky"

“It’s Just a Headache.”

Is it, now?

Migraine is a condition most commonly thought of by non-sufferers as a “bad headache.” But in reality, it’s a neurological disease, only one manifestation of which is head pain.

 
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My migraines usually start off hours before the actual pain kicks in. The symptoms are often so subtle I don’t make the connection that what I’m feeling is the warning (or prodrome) phase: fatigue, ravenous hunger, extreme thirst. I might feel just ever so dizzy, as if my brain is tilting to one side, and I may get an annoying tingling sensation across the top of my back. I might yawn frequently, my attention span may be limited, and I could see little flashes of light popping before my eyes.

(I use words like “may,” “might,” and “could” because these symptoms are possible, but don’t necessarily happen every time. Sometimes, the pain simply erupts without warning, as if a bomb is going off inside my skull. Like a deadly snowflake, each migraine is unique in its own special way.)

If I’m lucky enough to connect the dots, I can take medication early on, thereby aborting the pain before it really takes hold. Often though, I’m too late.

 
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For me, it usually begins as deep throb behind one eye that soon radiates down along my temple and into my jaw. The cheek under my aching eye stiffens, as if I’ve been punched in the face. The back of my neck gets rock hard, and it feels as though an invisible hand is scrunching and pulling the muscles taut.

“Everything is infected with brightness, throbbing with it, and she prays for dark the way a wanderer lost in the desert prays for water. The world is every bit as barren of darkness as a desert is of water. There is no dark in the shuttered room, no dark behind her eyelids. There are only greater and lesser degrees of radiance.” 
— Michael Cunningham, "The Hours"

That’s just me, though. Other migraineurs may suffer from auditory auras, nausea, vomiting, speech impairment, hot flashes, chills, nasal discharge, confusion… Symptoms vary from person to person and can change over time.

But never is migraine ever “just a headache.”

“Just Take a Couple Pills and You’ll Be Fine.”

I actually do take acetaminophen when I first get a hint of the pain, always in the hopes that it will offer some relief. But it rarely does the trick. To fully break the ache, I have to use one of my two migraine prescriptions, both of which work well but leave me feeling as though I’ve been hit by a truck. A typical treatment for me involves some combination of food/water/sleep/ice/quiet/dark/prescription meds.

“Drink Some Water, Take a Nap, Get Some Sun.”

Yes, I will do that. In fact, I probably already have. Odds are I’ve tried anything you could suggest to get rid of this, and every other, migraine. Water can help, but it’s never once actually stopped the pain. A nap is good, unless I’m, you know, working or driving or watching my kid or doing any number of things that make it impossible to lie down. Getting some sun would be awful, since bright light and heat are migraine triggers for me.

All migraineurs have triggers and each person’s differs. It’s another reason that a blanket statement such as, “Do [insert suggestion here] and you’ll feel better” doesn’t work. For one person, just a sip of caffeine could set off a days-long, blinding migraine, while another person may get instant relief from drinking a cup of black coffee when the pain starts.

“Have You Been to See a Doctor?”

OMG I’ve seen so many doctors. I’ve been to neurologists and primary care physicians and acupuncturists and ear, nose, and throat specialists. I’ve had MRIs and CT scans and an EEG. I’ve taken all sorts of meds — from daily, preventative pills to take ’em when you need ’em abortive treatments — and have followed the advice of many a medical professional. Still, at the end of the day, migraine keeps coming.

The best thing a neurologist ever said to me was:

“I can’t cure your migraines. I don’t even know what’s causing your migraines. All I can do is try to keep you comfortable when they come around.”

It was so refreshing to hear a medical professional admit they couldn’t cure me. This changed my understanding of migraine, redefining it as a neurological condition rather than a headache I should be able to control with a pill. Her words made me feel less guilty for not being able to stop the symptoms that curbed my life so often, sometimes for days at a time.

“How Can You Possibly Still Have that Headache?”

Right?? That’s what I’m sayin’. Seriously, these things feel like they last forever.

The headache phase of migraine typically lasts 4 to 72 hours. That doesn’t include:

  • Prodome (few hours to days)

  • Aura (5 to 60 minutes)

  • Postdrome (24 to 48 hours)

Taken together, that’s up to 120+ hours of fun!

My current meds work super quick so I can usually get rid of the pain within an hour. I’m left feeling sluggish and stoned, and sometimes the meds cause ulcers, but hey — at least the head pain is gone. But when the meds don’t work…whoa.

In summer of 2016 I had a nine-day migraine.

NINE. DAYS.

I tried every drug and treatment option I could get my hands on. Nothing helped. After the first week, I went to the ER in tears, and was put on hospital-grade NSAID and morphine.

The morphine was heavenly. It felt as though my entire body was floating on a cloud. Except for one teeny, tiny area just behind my left eye. Under the buoyant, perfect numbness was a pressure pushing up against the back of my eyeball.

 
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“…a throb hits you on the left side of the head so hard that your head bobs to the right. You look for the referee counting you down to ten. There’s no way that came from inside your head, you think. God just punched you in the side of the face.”

--Andrew Levy, "A Brain Wider than the Sky"

 

I realized: the migraine was still there. It was waiting, ever so patiently, for the morphine to wear off. And sure enough, a few hours later, I was back in my own bed, curled into a ball, sobbing from the pain. It was another two days before my neurologist could find a concoction of pills that would finally end my suffering. (At least, until the next migraine began.)

“Just Play through the Pain.”

I have, actually.

And I’m guessing every migraine sufferer out there has, too. But sometimes, you just can’t. That nine-day nightmare? I went to work through most of it. I even went out to dinner with some girlfriends, thinking if I ignored the pain and lived my life I’d somehow win. Instead I spent the evening half listening to the conversation as I pressed my fingers against my temple and tried to loosen the stiffness in my neck.

It wasn’t until I burst into tears in front of my boss during a meeting that I realized maybe I should leave a bit early and stop trying to play through the pain. The following day is when I took that trip to the ER.

“You Don’t Look Sick.”

That’s good, but I feel like shit. What does “looking sick” mean, anyway? How is one supposed to look? Am I not considered ill unless I have matted hair, a vomit-stained shirt, and an ice pack on my head?

I actually think it’s pretty obvious when someone is in migraine’s tight grasp. They’re pale and have this glassy-eyed look about them. They’re usually not focusing on anything but are instead staring off, as if they’re using all their energy to will the pain away. They’re not present or engaged in any meaningful way.

But I suppose it’s easy to miss the physical signs. Or maybe, in their defense, they’re just playing through the pain.

“I Used to Get Migraines but I [Insert Treatment Advice Here] and Now I’m Fine.”

That’s amazing. Seriously. I would love to be able to say I’m fine, too. But that’s not how it works for most of us.

I actually have made headway with migraine over the years. As a kid, I got migraine headaches often. I had no clue what a trigger was, let alone what mine could be, so the pain came without warning, causing vomiting, listlessness, and many tears. I didn’t begin to take prescription medication until I was 12, so for the eight or so years prior I simply chewed some Children’s Tylenol and went to bed with a wet cloth until the pain subsided.

Now, I manage my sleep, food intake, and water consumption. I don’t drink much alcohol. I avoid the heat and try to keep stress to a minimum. Sometimes I succeed, sometimes not so much. But having an understanding of how my body reacts to outside stimuli has helped me to decrease the frequency of migraine, while some top-notch prescriptions have reduced the overall length of each one.

That said, migraine is in my genes. My grandmother suffered from migraine well into her elder years. My mother gets migraine headaches. My aunt, my cousins, so many in my family suffer from them that at one point you could easily go to a holiday gathering and overhear someone ask, “I forgot my pills. Anyone have an Imitrex I can use?” So, although you used to get migraines but are better now, odds are what helped you isn’t going to work for someone else.

If you’re one of the (very) lucky individuals who hasn’t had to deal with this debilitating condition, please keep in mind that your comments and questions may be more hurtful than helpful. If you’re with someone who happens to be dealing with migraine, ask if there’s anything you can do to help and then leave it at that. Odds are the migraineur will be in too much pain to really respond, but they’ll appreciate your thoughtful offer.

 

A version of this post first appeared in Uncalendared

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