Hello from the Inside
Life with chronic migraine
That’s when the migraine hits this morning. I'm chatting with my partner, both of us ready to start our respective work for the day, and suddenly here it is.
The knife through my temple shooting down to the opposite jaw. Just a flash of pain, but intense enough that I involuntarily flinch and clutch the side of my head.
My partner, mistaking the gesture for annoyance, makes to leave the room. I motion for him to stay and garble my way through an explanation, eventually reaching the word.
Transient aphasia is my most maddening migraine symptom, hands down. I’ll search for the right word, and even when I find it in my mind it won’t always come out of my mouth.
Auditory processing malfunction, head to aphasia’s tail, means that words have as much trouble getting into my head as they do getting out. I can parse out the meaning of the sounds people emit, with some serious concentration and (a lot of) time. But it’s so much effort; sometimes I just let a child or friend garble on, using body language and tonal cues to offer appropriate responses.
“Is this important? Do I need to remember it later?” My family has grown used to my blank stare as I struggle to follow their speech.
Migraines, more than just simple headaches, are actually a neurological phenomena that can affect the whole body. “Manage the symptoms,” is the standard of care, after any serious causes have been ruled out.
My list of symptoms is both extensive and typical. In addition to the aphasia and auditory issues, it includes pain (head, eyes, jaw, neck, shoulders, for a start), blurred vision, light and noise sensitivity, nausea, vertigo, lightheadedness, fatigue, chills, derealization, clumsiness, slurred speech, a floating sensation, reduced peripheral vision, increased response times and short-term memory loss.
I had my first migraine, to my knowledge, seven years ago. I was not yet 30. I had just weaned my last baby, just changed my fibromyalgia medication to something more effective, just gone back to school, just gotten my first ever job.
Was it the stress? The hormones? The meds? Or was there just a ticking time bomb in my head that choose that moment to go off?
I thought I was having a stroke the first time the right side of my body went slow and clumsy. I tripped on my own foot. I developed a bad case of butterfingers. I wondered if I had a muscular disease. I wondered if I had MS.
The MRI was “unremarkable,” a good thing in the case of a head scan.
I called them bad headaches. My mother had migraines. She vomited for hours. She couldn’t stand any light at all. She was unable to leave her room, her bed.
I had bad headaches.
In April of 2014 I wrote:
“This is the third time this week that I've had a debilitating headache. This had better not be my new normal - I literally can't function through this level of pain. I can't even see straight.”
Then came the morning when I couldn’t open my eyes because the pain was so bad. I couldn’t move without waves of nausea pushing me down.
I asked my then-spouse to call into work for me. I was in so much pain I couldn’t pick up the phone, couldn’t lift my head, couldn’t see to dial.
Curled in the dark room after everyone else had left for the day, I had to face it: I had migraines. I had been having migraines. And if my family’s medical history was any indication, I would be having migraines for decades.
The migraines increased in frequency, finally hitting so often they crashed into each other, frayed nerves spraying like sea foam on impact.
Chronic migraine. For some people it means regular migraines, triggered by stress or the hormonal cycle. For others, it means a tiger lying in wait, claws at the ready, wound up to pounce at the slightest provocation — red wine, fluorescent lights, aged cheese.
For me, it means migraines every day, back to back, overlapping. Some follow my cycle. Others are triggered by stimuli. Most just drop in out of the clear blue unannounced and uninvited.
Migraine medications come in three varieties. There are the “take this when you have a migraine” meds, such as Excedrin® Migraine. There are “take this before you have a migraine” options, which require at least a bit of a head start – and an aura. And there are “take this every day” prescriptions, most of which come with dire warnings and promise only to reduce migraine days and/or intensity.
Migraine auras: the trip nobody asked for. I have them (not everyone does); a sensation of floating out of my body, with dizziness and a hint of tunnel vision. That’s my notice that within two hours the familiar knife will pierce my temple and my brain will begin to melt.
The problem, which you may have noticed, is that the Venn diagram of my aura and my migraine symptoms is a perfect circle within a circle.
Which means I can rarely tell whether a migraine is coming or going or settling in for a long winter’s nap.
My initial diagnosis, therefore, was migraine without aura.
(I know, I promised “life with” and instead I’m giving you a blow by blow. I promise you, “life with” chronic migraine is blow after blow after blow.)
My doctor put me on the Pill. It was like magic; I went from indistinguishable migraines to clearly defined incidents. One to three a week, with severe ones landing twice a month.
And now, I realized I had auras.
Hormonal birth control is contraindicated in migraine with aura, because of an increased risk of stroke. Ah, the irony. We were back to treatment square one.
Today, I manage my migraines with a cocktail of daily medications, regular Botox injections, caffeine, NSAIDs and medical cannabis. I still have migraines almost every day, and often twice a day, but they are more muted.
What does this mean for my daily life?
Sometimes it feels like I am a prisoner in my own body. I live my life bounded by an invisible electric fence.
Thanks to the wonders of modern medicine and magical plants, I can usually function. I do get a warning, or noticeable aura, for about half of my migraines.
But at any given moment, I am either dealing with, preparing for, or recovering from a migraine.
I avoid triggers where I can. Flashing lights are a no-no. Driving at night is a minefield of headlights and streetlights and reflections everywhere.
But some things are unavoidable; a sudden flash of bright light, right in my eye, triggers an instant migraine. A sudden loud noise can do the same. Pollen, smoke, a fibro flare, stress, fatigue, lack of sleep, hunger, a change in altitude...and often I don't even know if anything triggered an episode at all.
My mother had migraines. So did my mother's sister. And my father's sister suffers from them as well. Anecdotally, they fade away sometime in your 50s.
My 50s are a long way off still, especially when viewed through the tunneled, blurry vision of a migraine. I try not to look that far into the future, try not to think about the pain and discomfort between here and there. It does no good.
But here's the thing. I suffer from daily migraines; I struggle to find words, I sway my way through crippling nausea and vertigo. I lay down in dark rooms, and I work in rooms that are dimly lit, and some beautiful days I don't go outside in the sunshine because I don't want the pain, and some days I go out anyway and pay the price.
I force myself to eat despite the waves of nausea, or I miss meals because putting food in my mouth feels utterly overwhelming.
Sometimes I wish I could wrench my eyes out of my head, the pain and pressure is so great. If I
A vise grips my head. One side of my face feels like it is melting off the bones. I struggle to read, text blurring into oblivion.
We like to think that pain is avoidable, that it has a limit, that we can end it or fix it. But the reality is that sometimes, pain is a shade that follows us, intimate and unwanted.
Every day, every moment, is a tradeoff between function and feeling well.
I had a doctor tell me my migraines must not be that bad because I could hold down a job.
But I was lucky at my job. I worked in a dark office with the door closed and moved at my own pace, choosing projects as they fit my state of mind. And I went home and curled up in a corner and barely got my children fed and bedded before I collapsed for the night, dreading the moment I would have to get up and do it again.
And I quit my job because it was all too much. But that's not sustainable either.
This essay has turned into an introspective stream of consciousness. It offers no solutions, no inspiration. Just the bare reality of living with daily pain and disorientation, and going on living anyway, because what else are you going to do?