30+ Years of Migraine

Hello. I wanna start by saying that this invisible disability is not one I wish upon anyone. And if you are reading this for the first time and have never had a migraine, yet have judged someone for a migraine, you will think twice after reading my story.

My first encounter with migraine

I was 15 years old when my brother first had his migraine that I observed. I watched him kick the windows out of my mom's car in pain on the way to the hospital. I said to myself, "there is no way a headache could be that bad". Jinx... one month later, I ate those words. I began with early puberty and family doctors saying it's related to that. My head would pound over my left eye, I couldn't see, I was nauseated, vomiting, and unable to drive. But still I had to manage to get to school with the bright sun coming through the glass panes in the hallways going to class. Midol didn't touch the pain. This happened even when my cycle wasn't starting and I was sick often at the drop of the hat.

Finding a neurologist

This went on for years. Then, in my 20s, I learned about neurologists and found one. He thought maybe it was seasonal effective disorder. He gave me meds, CTs, and MRIs. I was depressed still and sick still, experiencing the same left eye pain, and the cycle would start all over again. I went through many doctors and specialists through my 20s and 30s and tested out the wahoo, including SphenoCath, which worked for about 10 minutes on me, botox for a month, some head device implanted for a year that lasted. My body just kept getting migraines, increasing to 15 or more a month as I was now a travel surgical tech and x-ray tech. I was also missing a lot of work and getting laid off from contract jobs because of my migraines.

Never-ending testing

In my early 40s I met a neurologist physiologist and he said that he wanted to try some tests. I said, "OMG here we go again," as I bring in literally a moving box of paperwork and CTs, x-rays, and more to him. He said, "let's try some Triptans and some beta blockers on you, and other meds". I told him I never took any narcotics previously that doctors have tried to prescribe because addiction ran in our family, and I personally would be an addict by now. He laughed and said, "these are not narcotics, but thank you for advising me". He also educated me on disability. He said to me that I have rights, that I didn't realize under ADA with migraines and my other diagnosis. He began to prepare me for a new journey if my meds did not work as planned.

Managing multiple new diagnoses

As we took our new shot at medication, we also began therapy. I began to learn about genetics and then I had tests and got sick again. In 2013, I was diagnosed with perirectal cancer and colon cancer stage 1. I had a rectopexy and more surgeries to follow. Immediately after, my gallbladder failed. As my migraines still continued, my doctors referred me to specialist in other states. I went to Florida after being diagnosed with cervical cancer, a malignant tumor in 2020, and in 2023, breast cancer. I had a double breast mastectomy in 2024.

Life with migraine and comorbidities

My migraines are still chronic and I am still trying to find the right fit in a neurologist. I think I want to have the surgery of the clipping of the nerve. Since reading on the American Migraine Foundation, all the new procedures and new medication, like Ubrevly, that is so good. It stops migraines in 30 minutes for me no side effects. At 52 years old now, I have tried pretty much every medication out there.

I want you to know everyone is different and react differently to meds. Educate yourself on current meds and procedures. Not all doctors are updated, and you don't have to settle with any specialist. Shop for one that FITS YOUR NEEDS! It takes time. I am still working on my migraine survival and I believe that I will have one day reached 90% relief. With the help of communication and teamwork, we can each learn from each other and educate others.