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What It Was Like Living With Undiagnosed Migraine for 8 Years

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The sliver of light that made it into the classroom pierced my brain. How could such little sunlight cause so much distress?

Every voice surrounding me thundered and echoed into my head. Why are you all screaming?

Why did I feel sick? Did I eat something bad?

I could feel my blood pressure thump. The pounding that resonated from the right side of my brain, what is happening? Why does it hurt so much?

How could I make this awful pain go away?

It’s been about a decade since that day and I still haven’t found the answer to that question.

For eight years, I thought I had bad headaches. I told myself I had a low pain tolerance and that’s why they impacted me so much.

For eight years, I checkmarked the “headaches” box on all my healthcare paperwork.

For eight years, every healthcare provider I came across never asked me about the headaches.

For eight years, I pushed through the pain. I downed extra strength NSAIDs, hid away in dark rooms, and attempted to sleep the pain away when it was too much. It was too much most of the time.

In June 2021, I was diagnosed with chronic migraine. Months prior, my handful of migraine attacks a month rapidly increased. When it hit June, I began getting daily migraine attacks and I haven’t stopped since.

Researchers determined that three simple questions could’ve given me a diagnosis, also known as the ID Migraine ™:

1. Has your headache limited your activities for a day or more in the last three months?

2. Are you nauseated or sick to your stomach when you have a headache?

3. Does light bother you when you have a headache?

It was determined that if patients answered yes to two out of the three questions, 93 percent could be diagnosed by a headache expert as someone who had migraine.

Healthcare providers were not the only ones who didn’t question the headaches. My family didn’t either.

The institutions we have in place failed my dad and ultimately, failed me. My dad says he gets sinus headaches. Yes, even today. Sinus headaches are not migraine attacks but migraine is often misdiagnosed as sinus headache. To have a sinus headache, you would need a sinus infection thus my dad would need to constantly have a sinus infection in order to always have sinus headaches.

I’ve told him multiple times that he has migraine too, but as a stubborn Chinese immigrant he doesn’t trust “American doctors because all they do is rip you off.” I couldn’t necessarily refute his point, when he’s not wrong about healthcare in the U.S. being expensive and out-of-pocket costs unaffordable.

My diagnosis changed my trajectory. While I would give anything to stop the constant onslaught of pain, I gained a community and a purpose from my diagnosis. The disability community embraced me with open arms and through them, I found a purpose.

My name is Kelsey and I’m a queer disabled first generation Taiwanese Chinese patient advocate who will fight for inclusivity, accessiblility, and justice. And this is just the beginning.

To find out more about my work, you can find me on Instagram and Twitter under @kelseysmigraine.

Image via contributor

Originally published: November 2, 2022
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