My days start off groggy. The dull pulsing ache is usually relatively mild. The fuzzy head, sluggish feeling lasts for hours. Over the years, my husband and kids have learned to keep lights off and curtains closed until I open them myself, very, very slowly. They’re still working on muting sounds and quieting their morning voices. I have learned that a slow entry into the world is one way that I can help slow the advent of almost certain chronic migraine pain.
I have struggled with migraines for as long as I can remember– my mom said she began to notice the tell-tale signs and symptoms before I was old enough to adequately explain what was happening. As a kid, I vividly remember the stabbing, pulsating, throbbing agony that felt like I was most certainly dying. Even a dim light felt like a magnifying glass was amplifying the fires of sunlight directly into my brain. The very slightest sound would assault my ears with a fresh wave of throbbing pain. Even tiny movements would send me frantically grasping for the nearby barf bucket, hoping I’d catch it in time.
I remember all of the failed medications. The hope of relief, only to throw it up seconds after taking it. The suppositories to circumvent nausea. The doctors telling my mom it couldn’t possibly be a migraine, I was “too young”. Some family members refused to believe I was in real pain. Suggesting it was “all in my head” (the irony is rich with that one). I was told on more than one occasion that I was being dramatic, making it all up, trying to avoid chores and homework. It’s psychosomatic…
Throughout my life, the pattern, triggers, symptoms, frequency, and intensity of migraines have ebbed and flowed. I’ve gone spans of years where I’d get a serious migraine attack only once in a blue moon. It would come on fast and furious and be gone in a matter of hours. Those migraines, the “sneakers”, as I’ve termed them, give little warning. They are acute and very intense. They leave me completely incapacitated. I often pray for death. The pain is otherworldly.
In the last 10 years or so, migraines have become almost a daily presence. They start off a low din of throbbing. Over the course of the day, usually around lunchtime, the pain ebbs. I have energy, I can play, chat, work with my husband and kids. I feel good, normal (whatever that is). Nearing late afternoon, the throbbing returns. It intensifies, exacerbating the tension in my neck and shoulders, as night time descends. It becomes more and more difficult to maintain my composure and treat my family with patience and love.
Over the weeks, the intensity of daily, chronic pain amplifies. Eventually, an acute migraine will manifest. I can never tell when it will happen or how bad it will be. But it is most certainly coming. I carry rescue meds with me at all times. I wear sunglasses often, even around the house if it’s a bright day. When an attack descends, my husband leads the kids in the migraine drill. They circle the house closing our blackout shutters and curtains (we specifically planned for double window coverage with migraines in mind). The kids turn off all lights and mute any sounds they can. They speak in hushed tones. They get out the ice packs and tuck me into bed. They double check I’ve had my meds.
I’m tearing up as I contemplate just how heavy a migraine is. Not just for me, but for the massive effect it has on our entire family. On ALL of my relationships. I am the friend that cancels plans last minute, regularly. I feel undependable, weak, embarrassed.
I hate that the weight of my Chronic Neurological Migraine Disorder (official diagnosis) often falls on my family. My husband’s work is often interrupted to care for my kids while I wait out the pain when it gets too intense for me to finish out the day. He picks up the slack that my disability has left behind. When a migraine has me ensconced in my heavily shrouded room my whole heart wants to leap up to help relieve the burden of stress I know he’s feeling. But I know I can be of no help. Being so incapacitated that I can barely put a sentence together or walk straight, let alone attempt to convince my curious toddler that using the dog’s leash to repel off the top of the fridge is not a super cool idea (an actual conversation I had this week). Spoiler alert, he did it anyway.
There are times when a particular migraine cycle has stretched on for days, weeks, and months on end. Pain meds stop working and I know the only thing that will stop the cycle is a rescue shot. This takes me to urgent care. The last time I went in, a very thorough and well-meaning doctor was one thousand percent convinced that I was having a stroke (spoiler alert number 2, I was not stroking out).
Through stuttering, stilted sentences, and my twitching, drooping left eye I tried, and failed, to explain to him that my symptoms were completely normal for me. I failed his stroke screening tests. I felt humiliated. He vehemently insisted I be taken directly to the ER. I refused. We had a duel at high noon. Kidding, there was no duel, but it felt like we were heading in that direction.
Ultimately he had no power to force care that I refused. I stood my ground and, eventually, he administered the rescue meds. Twenty to thirty minutes later, my stutter disappeared, my eye relaxed and went back to normal and I could walk again. I wanted to march back into his exam room in spiteful triumph, but instead, I crawled back in bed to wait out the inevitable migraine hangover.
I don’t know why I have migraines. Countless tests, MRI, homeopathy, acupuncture, elimination diets, allergy testing, etc. have given me no answers. I am currently riding out a long migraine cycle. I have up days and down. Some days I can clearly see the many blessings and beauties my life is full of. Other days, I struggle with frustration, anger, and sadness at the limitations migraines put on me and my family.
I look forward to a day when I don’t live in fear of an attack. A day when I am able to exercise without knowing, full well, that I am triggering an attack. One day, I hope to be able to mother my beautiful kids without the restriction of chronic migraine pain.
Megan Farrelly Hughes