When I look in the mirror, I see resilience and strength. Because you need to be strong yet flexible when you live with migraine. Flexible because an attack can come on suddenly and change the course of your day. Strong because you endure pain on a level that is unimaginable. Migraine can steal so much from you, but people who live with it always find a way to bounce back.
That’s how I feel about my family. You see, migraine didn’t start with me. It runs on my mother’s side and there are several of us who live with it. We don’t all share the same experience of migraine. Some are only episodic, with a few attacks a year. One of my cousins has migraine with aura, and I am the only one who developed chronic migraine. All of us have managed to find a way to live our lives in a way that makes us happy, but it wasn’t an easy journey for me.
Let’s go back to the beginning.
All in the family
My grandfather was the first person in our family to be affected by migraine. He would get terrible migraine attacks. I remember my mother telling me about how he would sit, holding his head and moaning while stomping his foot on the floor during an attack. According to her, he never had any true relief except from sleeping it off. In spite of this, he still managed to work and take care of his family without ever complaining.
My mother started having migraine attacks when she was just a young girl. She says she would have severe nausea and need to be in a dark and quiet room whenever an attack came on. This continued throughout her childhood and interfered with her passion for dancing. Many times, she says she would ride the train home from ballet in tears because the pain was so severe. But she still managed to go to the New York School for the Performing Arts and even danced with a young Alvin Ailey.
Migraine showed up in my life when I was a toddler. The first warning signs were somewhat benign: Every car ride would make me extremely nauseous, causing me to vomit. Bright lights and strong odors would make me sick to my stomach. I just remember feeling sick a lot. My parents chalked it up to motion sickness. Then the headaches started when I was about five or six. I seemed to always get one after playing or being on the swings. At eight years old I had my first migraine attack.
Since my mother knew what migraine was, she was convinced that was the culprit behind all of my symptoms. My parents took me to see my pediatrician and then to a neurologist who ran a battery of tests to rule out any other possible causes for the headaches. Both confirmed what my parents already knew: I had migraine.
Learning to live with migraine
It would be an understatement to say that it was extremely difficult being a kid with migraine. No one at school understood what it was, and my multiple absences seemed unnecessary for something that my teachers thought was “just a headache”.
On days when I wasn’t experiencing head pain, there was a never-ending ache that just gnawed away in the pit of my stomach. I had to learn about food triggers and quickly realized that I couldn’t eat the same foods as my friends. Recess was tricky because I wanted to play just as hard as everyone else, but if I did I could risk triggering a migraine attack.
I felt extremely isolated and very different from anyone else. No one really seemed to understand me or my pain, except for my family. I had to rely on myself to make things better. There were many nights that I dealt with the pain alone because my parents were both at work. So, I toughened up. Like my grandfather and mother before me, I had to learn to deal with it, and I did.
I still managed to excel in school and my extracurriculars, especially ballet. I played the cello and piano and wrote short stories and poems. I powered through the bad days as best I could. That is what I had to do because nothing was going to fix my problem. I thought it best to just grin and bear it and hope for a better, less painful tomorrow. My doctors told me I would outgrow them by the time I turned 18, so I could manage to deal with it until then.
My doctors were wrong.
By the time I got to college, I was still having migraine attacks. The older I got, the more frequent and severe the migraine attacks became. I had made it through a childhood and adolescence convinced that my pain had a shelf life, and was crushed that it was still a reality for me as I entered into adulthood.
During my last pregnancy I experienced my first intractable migraine. I had a migraine every day of my first trimester, and was convinced that I had a brain tumor — this just wasn’t normal. After an MRI came back negative, my neurologist concluded that it was just a migraine. I was devastated. Did I really want it to be a brain tumor? Of course not. But at least that would have been something concrete, something which could possibly be fixed. Migraine can’t be fixed.
Thankfully, in my second trimester the migraine went away. But I was still having more migraine attacks than ever before. Everything had changed about my migraine. None of the over-the-counter remedies I relied upon worked, so I needed something else. I graduated to a series of prescribed medications and quickly learned that my body could not tolerate them.
All the while, each migraine attack came on quicker and stronger and lasted for days. I found myself feeling more hopeless than ever before.
Around that time, I also decided to start my own blog. I felt isolated, not just because of the pain, but also because no one really understood migraine and what I was going through. Writing has always been a way for me to express myself, but it had been years since I had written anything. I wanted to share my experiences and find a community of people like myself, while helping to educate those who don’t live with migraine.
The blog started to give my pain a purpose.
Being in pain every single day put me in a deep and dark depression. I was beyond hopeless and felt extremely helpless. No one could make it better. I tried everything, and I mean everything — prescriptions, alternative treatments, devices, diet changes — you name it, I tried it. None of it helped, or at least not for long. I remember my pain management specialist telling me he had nothing left to offer me, and afterward I just sat in my car and sobbed. I wanted to soldier on like my mother and grandfather had done, but I couldn’t go on like this.
An unexpected turning point
At that point, I was completely devastated. So, I resigned to the fact that I was going to remain in pain every day of my life. I sank deeper into the depths of depression. Then I attempted suicide.
When I woke up in the ICU, I knew that I had to do something drastically different. I had to change my outlook and approach to living with chronic migraine.
I realized that I needed to heal not just my body, but my mind and spirit as well. So, I ventured on a new path and started working with a new doctor on more holistic ways to manage my migraine, and I began to see my disease in a completely new light.
I listened to my body more and I was more compassionate to myself. I learned how to advocate for myself at doctor’s appointments — my team needed to be on board with how I wanted to approach my healthcare and I made that very clear. Thankfully, I have great doctors who listened and who were completely supportive.
Finding the light
Throughout this process, I continued to write about my journey and the tools that have helped me cope with migraine and depression, and I noticed that people were responding positively. We are never our disease, illness, or condition. It took me years to understand that, but once I did I had to make sure everyone else knew it, too.
Somehow, my little blog caught the attention of some folks who wanted me to share my story at the largest women’s conference in the world. I was shocked, humbled, and extremely nervous. The experience was amazing and it opened the door for many more opportunities to raise awareness and advocate for those living with migraine and headache disorders.
Patient advocacy is my calling. I love helping others become empowered through their pain and experiences. I love helping others know that they have a voice that needs to be heard.
It has been a challenging road, and I have dwelled in many dark pits along the way. Hope was always in my sights, even when I didn’t realize it. No matter how dim the light was at the end of the tunnel, I held on to the possibility of something better, no matter what.
I am still living with chronic migraine, but thanks to my headache specialist I have fewer severe migraine attacks. Most days out of the week I am in pain, but it is more manageable now. I focus on my work and if I need to take a day to rest, I do it without feeling guilty. I no longer apologize for my disease. I have it but it doesn’t have me. My worth, value, and potential are not tied to my illness and I want everyone else living with migraine to know that, too.
MIG-US-NP-00085 AUGUST 2018