Carrie G and Hemiplegic Migraine

Carrie G and Hemiplegic Migraine is a story written and told by Carrie G and edited by Miles for Migraine team.  Miles for Migraine’s Advocacy Stories highlights the many different ways that health advocacy shows up as individuals advocate for themselves and others. This project is not limited to migraine and other headache disorders, nor is it limited to individuals that personally experience a health condition.

Carrie G and Hemiplegic Migraine

It was probably just a med reaction. I sat on the floor unable to move. Unable to do much for the two-year-old kiddo next to me or the five-year-old playing in the waiting room. We were all waiting. 

I’d already had migraine for years. This wasn’t one. Or was it? I was stumped. My primary doc was too. The waiting continued in a neurologist’s office, and it would be years before the diagnosis of “hemiplegic migraine” would finally cross my path. 

As someone with “regular” garden-variety migraine, ocular migraine, and hemiplegic migraine—which mimics strokes, each day can be challenging. Throw in sensory issues like ear ringing that won’t stop, migraine episodes that don’t surface until I’m driving, inner ear issues that cause vertigo, and you still only get part of the picture. 

Those of you with migraine understand. There were days where the migraine was acute, and there were weeks when the migraine lingers. It’s just there. Hanging out with me. Some days I can be more functional, but other days the bed says “stay.” 

Carrie’s Care Team

There were countless times the kids waited with me. We’d be somewhere, a migraine would strike, and we’d be stuck. I’d have to wait to drive until I knew it was safe. Since I have multiple food reactions, it’s been difficult to narrow down which foods are triggering, too. Such a long road! 

I’ve been blessed to have a good team of physicians and therapists to work with. We have a good health care community. I’ve been super lucky to have a church that was broadcasting on YouTube before COVID-19 which made being part of a community still possible even when I felt too ill to travel. 

Migraine disease is often genetic, and both kiddos now have their own journeys with migraine. I am their advocate. My dad had migraine, then my sister, then my brother before me. My dad and sister didn’t experience migraine as long as my brother and I did. Time will tell how long it lasts for my children who are now a teenager and a young adult. 

Carrie G Advocacy

Advocacy can be difficult when we’re still learning how to explain what is happening to us. Journaling and documenting what’s going on in our bodies feel like so much work at the moment, but finding triggers and patterns can help us find the best way forward for our health and our families. Having support matters, too. It takes time to build that. I now have a small, vibrant group around me that sees my worth and builds me up on hard days. It’s been critical for my mental health to have others to lean on. 

I sometimes think back on that day at the doctor’s office. It hadn’t been the first day like that. It wasn’t the last. I hope no one ever feels that lost or unheard and I know others do. I hope this small story can remind them that they’re not alone. 

Tell your Advocacy Story

Do you have an advocacy story to tell like Carrie G and Hemiplegic Migraine story? What is one of the most memorable advocacy experiences in your headache disease journey/daily life? Try to recall a time when you practiced advocacy. Perhaps you shared your story, posted on social media, or attended an advocacy event such as Headache on the Hill or a Miles for Migraine event.

Looking back on that experience, what did you notice? Did you experience a negative moment such as shame, stigma, or a positive moment such as joy, hope, or relief? If there was conflict, did you resolve it or was it a conflict that still affects you today? If the outcome was positive, how did that make you feel? Did the outcome cause you to advocate again for yourself? How has your most memorable story shaped you today? There is no right or wrong way to share your story.

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Are you inspired by these advocacy stories and want to donate to  Miles for Migraine? All or part of your donation may be tax-deductible as a charitable contribution. Please consult with your tax advisor. Funds raised help with our operational costs so that we can continue to produce races and youth camp events. Money raised through donations and race registrations goes directly to medical organizations researching migraine.