How a Lifetime of Chronic Migraines Has Informed My Life

Caregiver, patient expert

“You’ve got classic migraine brainwaves,” the neurologist said. This was long ago and the only tools doctors had to make certain that my symptoms were indeed migraines and not a brain tumor was to have an electroencephalogram (EEG). He then patted me on the knee, smiled and said, “Don’t worry, Honey. You’ll grow out of them in 20 years.” Ah, those were the days.

My migraine story actually started years before. I was 15 and bookish, with no athletic ability or interest, but physical education (we called it gym class then) was required and it included a trampoline segment. During one torturous session, I was gingerly bouncing on top of the tramp getting warmed up. Kids were spotting on the sides. The teacher was leaning against the tramp with her back to me when I tried what should be a simple front fall. Crack! Huh? My neck had snapped back, loud enough for the teacher to turn around. Stunned, I managed to get up on my knees. My neck was numb, but I could move. She told me to climb down and “walk it off.” So, I did.

A few days after that, I began vomiting. My vision blurred. My speech slurred. Then, a vice gripped the back of my head. Over the course of a day, the vice loosened only to have pain consume my entire head. First throbbing, then pounding. Over the course of a day or two, this monster transformed into an icepick jammed in my right temple. And there it stayed for three more days. My parents took me to a doctor, of course, but he said it was too late to stabilize my neck and nothing could be done. Not only did I have whiplash, but muscles were torn in my back. These “headaches” would become chronic, each episode lasting four days total.

After four days, I’d have a few days of semi-peace, but it was not long before the cycle would repeat. The only medication available was aspirin, so I’d take that knowing that the pills didn’t help much but desperation drove me. My ears would ring after days of aspirin treatment, but I had to go to school, and later work, so I did what I could.

There was no known migraine history in my family, but eventually someone seemed to remember that my great grandmother had what was then called sick headaches. Likely they were migraines, so perhaps, injury aside, I may have gotten them anyway. It doesn’t matter because they were a part of who I was and who I am. Heating pads, ice packs, staying near a toilet during some of the worst episodes — my life with migraines began to seem normal. Doesn’t everyone live like this?

Life on my terms the best I knew how

As time went by, I spent two years working in a military library in Germany. I spent later years in other jobs stateside and eventually worked at a university library. I married, had two sons, and became a caregiver for multiple elders. During some of that time I was able to freelance from home as I cared for my kids and a total of seven elders. The hardest time was caring for five elders in three different places while I shuttled my kids to and from school, as well as running my youngest son, who had many health issues, to his myriad medical appointments.

Eventually, drugs known as triptans were developed. By then I was a single mother and still caring for three remaining elders who were now living in a nearby nursing home, as well as my son who had/has continuing health challenges. I visited my elders daily, but my paying job was in a newspaper library. The triptan I was taking helped me through those years. I developed Raynaud’s disease, which affects the small blood vessels in the hands and feet, likely triggered by the drug, but I don’t know that I’d have made a different decision about taking the drugs had I realized that I would live my life with one more issue. Though expensive at the time, they were a blessing for the most part.

Eventually, I became a fulltime writer. With the freedom to wear an icepack around my neck as I write (yes, I’m wearing one now), and heating pad breaks, I could work without constantly relying on migraine drugs. I could still tend to my loved ones who needed me – far fewer by this time — by using pain-management techniques such as yoga, which I’d (loosely) practiced for decades, as well as essential oils like peppermint and lavender, which I rub on my forehead, temples, and neck. I do use some pain medications, as well.

Over the course of years the nature of my migraines did change. I never grew out of them but they are not as severe as when I was a young woman. Now, nausea is rare. With all of my comfy, at-home remedies, and as much stress management as I can accomplish, I’ve made peace with my very own variety of chronic migraines and my own variety of life. Migraines will likely be an issue for life. However, life continues and is good.

As anyone who has experienced even one migraine knows that these events aren’t “headaches.” Migraines are full-body occurrences that can be utterly debilitating. As bad as mine were, I know many people have them worse. However, I can only tell my story and I will end this story with gratitude. When a doctor asks me to rate my pain, whether from an injury or some other reason, I think (and sometimes say): “Compared to what?” Yes, I have pain, but compared to migraines at their worst, I’m fine, Doc. Thanks for asking.