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What It's Like to Live With Migraine for Over 50 Years

I’m about to turn 64. The first I remember about migraine was when I was 9 years old and my mom took me to a specialist to see why I had so many headaches. After some tests, they diagnosed me with migraine. Mom said it was my dad’s fault. My childhood was abusive and I don’t remember most of it.

The older I became, the more intense and frequent the migraine became, at times sending me to the emergency room for a shot.

I had a neurologist who was trying different cocktails of meds to help me. One of the meds caused my teeth to dry out and break and eventually I had to get dentures, but no help for my head.

When I was 40, I had a migraine that turned into a mini-stroke. It started on a Friday with ringing in my ears and over the next two days, it progressed to a pounding head, confusion, poor balance, and blurry vision. I went to the ER and they gave me a shot but said they couldn’t do any more. I didn’t get better and I couldn’t move without vomiting. My husband called an ambulance. I was so out of it from the head pain, I didn’t even flinch when they did a spinal tap. The doctor said he had to release me due to my insurance not being accepted there. I was sent home and spent a week sleeping. From that day on, my migraine occurred daily and I would go on to have several more mini-strokes, each being identical to the first one. My husband took me yet to another hospital and demanded I be admitted, and they did. I would spend the week sleeping, more tests, spinal tap, and IVs to keep me hydrated.

I was desperate for help and was sent to Diamond Headache Center in Chicago. I spent a year traveling there and after no results, they sent me on to Mayo Clinic in Minnesota. At Mayo, I spent a week going through tests. They diagnosed all the side effects I experienced from the strokes but had no answers for the migraine. Mayo said they were complicated, basilar artery related, and rare.

My career of teaching and working with children with disabilities came to an end because of the migraine and I was unable to get insurance due to my health issues. I was forced to apply for disability just so I could get Medicare insurance at my age and that process took two years before I got approved.

Years later, a self-administered shot became available for migraine. I’m allowed two shots a week. That’s not a lot of shots when you have daily migraine. I had to learn how to decide which migraine was “shot” worthy. These days there seem to be more meds available for preventative migraine, but Medicare decides what I should and shouldn’t have.

So I continue with the shots and have learned to live with the migraine. I try not to let the migraine control and interfere with my life, although they alter it at times. The mornings are my best part of the day, so I take advantage of the mornings to get things done. I exercise, play Pickleball, visit with friends, take care of our five acres, and play with my grandchildren. Life doesn’t have to end because you have migraine.

Getty image by Anna Frank.