Overcome by Migraine Grief (and an Unexpected Glimpse of Strength)

After the first 10 minutes of screaming my broken heart out, the sound of my scream morphed into that of a lion growling. Ten minutes of roaring left me breathless and on the verge of fainting. Before collapsing in a sobbing heap on floor, I ran three shopping bags through the paper shredder. (Yes, that last activity is a little weird. The bags represented things that, in the moment, I felt were permanently lost to migraine— the King Arthur Flour bag reminded me of the baking I couldn’t do, L.A. Burdick represented a city I had to move away from due to migraine, and REI taunted me with the time I don’t get to spend outdoors.)

Screaming in frustration

This is how my grief played out when I realized that my new migraine treatment was triggering migraine attacks. Those 45 minutes of screaming and growling were so brutalizing that I needed 12 hours of sleep to recover. Even then, I woke up hoarse with a sore throat and my stomach muscles aching from pushing out the screams.

I have never grieved this way before. I’ve screamed in frustration, but never for more than a few minutes. My grief usually manifests as sadness and fear, not anger. But this time I was raging with anger and my husband wasn’t home to hear me, so I let it out.

Mostly I just made noise, but sometimes I yelled “no” and “I can’t.” These are things I almost never say in relation to migraine. Saying “no” doesn’t keep the illness at bay, it just reminds me how powerless I am. No matter how many times I say no, it can’t stop what’s already in motion. I avoid saying “I can’t” even more stridently because the fact is I have no choice but to live with migraine and the grief it sometimes brings. I can do this because the alternative is death, which I will never choose.

Raw grief of living with migraine

This is a lot of raw grief to share. My aim is not to receive pity, but to put into words what the grief of migraine can be like. I want people who have migraine to know that it’s normal to have fits of grief that feel like they will end with your heart in shreds on the floor. And that those fits pass and you resume living as well as possible, often with a little more breathing room after the catharsis of wailing out your heartache.

I also want people who love those of us with migraine to know how heart-wrenching this illness can be at times. Living with migraine is tough and can take all a person’s reserves. No one can stay strong all the time and no one should. Also, on the off chance that someone completely unconnected to migraine reads this article, I want them to get a glimpse of the grief that can accompany this illness that’s so often dismissed as just a headache.

Realizing my own strength and resilence

I’m sharing for another reason, too. While my fit of grief was horrible, it brought a strange kind of beauty, too. It made me feel like I can survive whatever life brings at me. It showed me that I know how to comfort myself, even if that’s by doing something as strange as shredding paper bags from places I may never go again. Most importantly, these horrible 45 minutes were the transition from feeling utterly stuck to coming up with ideas to tweak my treatment and keep moving forward.

The night I describe happened two years ago. That “new” treatment was the gammaCore, which I’m still using successfully. It still requires frequent tweaking and I still have moments, and hours, of grief. I keep this night in mind—a specific image of me crumpled on floor in the entryway to the kitchen—to remind me that no matter how bad it gets, I have picked myself up from the depths of despair time after time. And I can always do it again.

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