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

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • glassmind
    5 months ago

    A very powerful and moving story. Thank you for sharing.

  • christina
    7 months ago

    Why are you still using a device that you feel was causing your migraines?

  • Lisa A
    7 months ago

    I hear you. I can sure relate as well. Life with chronic migraine is so DARN frustrating! I have what I call “migraine meltdowns” and believe me, they aren’t pretty. Surely not my finest moments. With each step forward it does give us encouragement and then we feel less like a victim. Let’s keep picking ourselves back up like you say

  • wrensegg
    7 months ago

    Thank you for writing this article and shedding light on such an unseen, but huge part of our condition. I feel it’s one of the biggest aspects we struggle with. A starting point to living with it is just acknowledging it and validating the feeling which is why it is so great to read an article about it. For me, I was able to make a positive shift when I really allowed myself to feel the deep grief of always missing out, being so limited etc instead of always trying to be strong and positive. And then I was able to really look after myself like I would if it was someone else who was sick, I gave myself a break! And really concentrated on self care. It’s okay to put yourself first for a bit! I’m a mum of 2 with a very busy partner so this was really hard for me but so worth it. I would encourage anyone to do the same- love and nurture yourself, let yourself feel grief, despair, low self esteem, loneliness, etc etc and then work through it by giving yourself a break and validate those feelings!!

  • Nikita212
    7 months ago

    I can relate to the guilt issue completely. I’m thinking it comes from still wanting to be the same person I was before migraines.

    I’ll never please that person. I just took a couple of language and grammar tests and, with my writing background, thought I’d ace them.

    I received “proficient.” I didn’t go through these timed tests quickly enough. I have gotten older, but not that old. I am on a pretty heavy duty preventative medication though, which could slow me down.

    In any case, there was the old me popping up and getting disappointed. Next comes the guilt. The best thing I can do is accept where I am for now. We’re talking about in this moment. I can handle that.

  • Nikita212
    7 months ago

    I can relate to the guilt issue completely. I’m thinking it comes from still wanting to be the same person I was before migraines.

    I’ll never please that person. I just took a couple of language and grammar tests and, with my writing background, thought I’d ace them.

    I received “proficient.” I didn’t go through these timed tests quickly enough. I have gotten older, but not that old. I am on a pretty heavy duty preventative medication though, which could slow me down.

    In any case, there was the old me popping up and getting disappointed. Next comes the guilt. The best the I can do is accept where I am for now. We’re talking about in this moment. I can handle that.

  • John1381
    7 months ago

    I feel for you and all posters. I have had several bouts where I have howled like an animal and screamed at myself, particularly for all the things I have had to leave behind and then I feel I can’t take it anymore; it seems to be something primal after all the coping and frustration surfaces despite all my techniques to manage this awful, awful, disease. My sincerest best wishes.

    John.

  • talajasmine
    7 months ago

    Reading this has literally made me cry because I too have found myself somewhere on the floor not being able to move to the point of having to be hospitalized, but I now have a tattoo that that I can look at everyday so I can show myself just how strong of a person having migraines has made me.

  • Joanna Bodner moderator
    7 months ago

    Hi @talajasmine! Migraine warriors are some of the strongest!! I really wanted to share this article with you as one of our contributor’s shares how she (as she describes) makes the invisible visible through her tattoos. Check it out here if you’d like! Know we are always here for you!

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