I Have Lived with Chronic Migraine for 38 Years
My name is Jaime and I am 40 years old. I have lived with migraine for 38 of those years. Between 2-8 years old, I had undiagnosed abdominal migraine. This meant frequent nausea and vomiting, lightheadedness, dizziness, upset stomach and stomach pain were always present. And bright lights, strong odors and motion would set these symptoms off.
For years, my parents assumed I had severe motion sickness. But then in third grade, I had my first migraine attack. The memory of it is fuzzy, but I can never forget the pain.
Migraine runs on my mother's side in my family so she knew that I wasn't just experiencing a typical headache. She recognized the need to be in a dark, quiet room, the nausea, and vomiting from her own childhood. After several attacks, I went to the pediatrician who diagnosed me with migraine. To rule out anything else, I was referred to a neurologist who confirmed that it was migraine and he put me on propranolol as a preventive.
Although I stayed on the medication for five years, the number of my migraine attacks remained the same. As I got older, my doctors kept reassuring me that I would outgrow the migraines when I turned 18. So I believed there was a finish line with migraine! But that would not be the case for me. In fact, the frequency and severity gradually increased throughout my twenties. By 27 I had chronic migraines and had exhausted many treatment options. Not just that, my kids were all young (4-, 6-, and 8-years-old) and I had no idea how to be a full-time mother with a full-time disease.
All I wanted to do was experience less pain so that I could be the mother and wife I so desperately wanted to be. So I tried everything that was available for me to try. Acupuncture, chiropractic adjustments, pain management classes, breathing exercises, meditation, guided imagery, massage therapy, acupressure, nerve blocks, herbs, vitamins, supplements, juicing, diet modifications and undergoing surgery for a peripheral nerve stimulation device. Nothing truly helped in the long run.
I felt so extremely alone in my pain, too, since no one in my family or circle of friends had chronic migraine. One day, I decided to start a blog in hopes of finding others like myself. I was desperate for a sense of community where I did not have to explain what I was experiencing all of the time or correct misinformed people's perceptions about migraine. Blogging became a way for me to share what I was going through in an honest and transparent way while educating those who didn't understand migraine.
Even though I remain chronic and intractable this very day, I decided to remain hopeful and find the positive things in my life that were important to me. Focusing on what I can do instead of what I can't has made coping with chronic migraine a little easier. By learning to speak kindly to myself and removing my identity from my disease, I have been able to move through the pain in a more efficient way.
When my outlook changed, I started standing up for myself at doctor's appointments, in the emergency room and anywhere else that warranted my voice to be heard. I wanted others to know that they are not their migraine and that they still had worth and value, so I wrote more and more about it on my blog.
Little did I know that my online journaling would catapult me into the world of patient advocacy. It is very fulfilling work where my pain has found a purpose. I love the headache and migraine community and helping to elevate their voices is an amazing role to play. I continue to struggle daily with pain and battle the insecurities that having a chronic pain disease brings. But I will continue to show up for myself and for those who don't have the strength to do it for themselves. I will use my platform in any way I can to empower others and support them through their own pain journeys.
Jaime Sanders is the author of the popular blog and is a Migraine Patient Advocacy Coordinator with Global Healthy Living Foundation. She also partners with the American Migraine Foundation and Shades for Migraine, and is a stakeholder with the Coalition for Headache and Migraine Patients and the Headache and Migraine Policy Forum. Through her advocacy work and blog, Jaime's mission is to make a very invisible disease visible to the rest of the world and validate the real pain of millions. You may reach her on , , , and .