Throughout my career as a registered nurse working as a hospital staff nurse and in my husband’s internal medicine practice, I wore many hats. The hat I enjoyed wearing most was that of patient advocate. I loved helping empower patients to take charge of their health. Little did I realize that my work as a nurse, health educator and patient advocate would later prepare me to advocate for myself and others when I faced my own health crisis with migraine headaches.
I was 32 years old when I had my first migraine attack. I was a wife and the mother to a 6-year-old son. Fortunately, the migraines lessened in frequency for a few years but returned when I was completing my PhD in educational psychology and educational technology at Michigan State University.
The attacks became a regular occurrence. During one attack, I was taking an exam. Between the searing head pain, nausea and brain fog from the migraine, I barely passed the test. I successfully used Botox for three years until it suddenly stopped working in 2006. I was always either having a migraine, going into a migraine or coming out of one. I was miserable.
By November 2006, I was completely disabled. After a month of agony, I saw my internist. I suspected I had migraine disease because my mother had migraines after menopause and my grandmother experienced debilitating migraines all her adult life. My internist referred me to a headache specialist right away.
I was too ill to work on my dissertation. My dream of earning a PhD was replaced by a need to educate myself about migraines, find better ways to manage my pain and empower myself. My first stop was the National Headache Foundation website, where I found great online resources. For example, I found a diary I could use to track migraine days and the medications I was using so I did not overuse the drugs. The diary also helped me identify my migraine triggers.
Over the years, I was prescribed about 60 different medications that ranged from preventive drugs I took every day to abortive-type medications like Imitrex and rescue therapies when those failed. Most of them had intolerable side effects and did not alleviate my migraines.
Finally, in 2010, I told my headache specialist to refer me to another specialist or hospitalize me. I was ultimately hospitalized for two weeks. During my time in the hospital, I tried many different treatments. We discovered that some of my pain was cervicogenic, which means it was generated by my neck. They started cervical and occipital nerve blocks, and that made a huge difference.
During this time, I decided to attend a medical conference for headache specialists. Not only did I learn about the latest therapies like CGRP inhibitors and neuromodulation devices, but I also met fellow advocates, including Mary Franklin, executive director of the National Headache Foundation.
In 2011, I became chair of the now-defunct American Headache and Migraine Association. I am currently on the boards of the Coalition for Headache and Migraine Patients, the Alliance for Headache Disorders Advocacy and the National Headache Foundation. I’ve been to Washington, D.C., three times through Headache on the Hill to talk to legislators.
In early 2018, Mary Franklin invited me to chair a new group called the Patient Leadership Council. The council has 14 dedicated and diverse patient advocates with many kinds of headache disorders. We advise the foundation on better ways to advance a patient-centered agenda.
Some of the ideas generated at our first meeting are already coming to fruition, like supporting college students struggling with migraines. It’s exciting to be a part of such a dynamic organization and a dedicated group of people. After my long journey with migraines, I feel like this is where I am meant to be: empowering others to take charge of their health care and be partners with their physicians.
Connect with Jill
Want to learn more about migraines? Read “Tension Headache or Migraine: How to Tell the Difference” and “Chronic Migraines: Why Attitude Makes a Difference,” then try your hand at at the quiz “What Triggers Migraines?”