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What It's Like Living at the Mercy of Migraine

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I lift my head gingerly off the pillow this morning, and every morning, to know what kind of day I will live. When I awake with a full-blown attack, it’s often too late to “rescue” the force of the event I will face. If I lift my head and find it heavy to hold up, with that all too familiar deep pain in the right side of my neck, along the occipital nerve, my fate for the earlier future is still up in the air.

Sometimes I can stop it—that is if I can function well enough to break the glass vile, open the packages of syringe and filter needle, fill the syringe with medication, change back the end of the syringe from the filter to the needle, and give myself an injection in my thigh. If I can think clearly enough to remember the anti-nausea medicine, I may be spared an additional agony.

If the pain moves to a throbbing, pounding pain behind my right eye, I haven’t caught it in time, and the nausea and vomiting are much more agonizing, trying to survive, having my head and arms lying on the toilet seat as I try to vomit away the nausea. Migraine has now taken ownership of my body and my psyche.

Another distinct possibility is that what I’ll carry with me this day and likely at least several more is extreme tightness in the right side of my neck, with pain so great in this one tiny spot deep in the muscles along the occipital nerve, I long for someone or something to bear down there with as much pressure as possible. The trigger points at the base of my skull feel like swollen knots, very tender to the touch. This day will be, with luck, “just” a functional day, one where I can carry on with only the skeleton of living.

These are the “functional” days, when I also carry the other, sometimes “invisible” parts of living with migraine: cognitive, memory and psychological effects… The awful truth is that many of my symptoms, when in a “functional” stage, I can hide from all but close friends and family, but the hiding is such a struggle and further supports the opinion of so many that “It’s just a headache.” Much of migraine is invisible to most and lonely for the migraineur.

What’s not invisible is the ecstasy of waking up and knowing right away that the migraine cycle has broken; I lift my head on these days feeling like a real force has moved out of my brain and body; suddenly, I’m me again. Do some people wake up this way most days?

I never have more gratitude and mindfulness than I do when I experience this “lift.” I pay attention to all the beauty of the day, and I have energy because now I can live rather than exist—at least for this moment.

Excerpted from “I Know Upon Awakening” by Kathy O’Shea in So Much More than a Headache: Understanding Migraine through Literature. Edited by Kathy O’Shea. Copyright © 2020 by The Kent State University Press. Used with permission.

Getty image by Natalypaint

Originally published: March 15, 2021
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