It’s a Bird, It’s a Plane, It’s a Super-Responder: A Story of Life After Aimovig
I sat staring at my phone, anxiously hitting the refresh button. The FDA was slated to announce their approval of Amgen’s new migraine prevention drug sometime today and the sun was beginning to set. As darkness began to fall, my heart began to beat faster. I had been waiting to try this medication for years and it felt as though I couldn’t possibly wait another minute. I hit the refresh button once more and all of the air I had been holding in my lungs suddenly whooshed out. I was speechless for just a moment and then shrieked. Aimovig had received FDA approval. Perhaps this was the first day of the rest of my life.
“Why would I need to see a neurologist?”
I had my first migraine attack in 2004. I still recall the panic-stricken look on my mother’s face in the Emergency Room and the sighs of relief that my parents breathed when they learned that I didn’t have brain tumor or an aneurysm. The doctor on call treated my symptoms and tried to reassure us as best he could. He suggested that I see a neurologist for further treatment. At the time, I didn’t think much about it. This was a fluke. Why would I need to see a neurologist?
“There is *NEVER* not anything else that can be done.”
In the days and weeks and months that followed, it became clear that I did need to see a neurologist. I began having migraine attacks frequently and was in the Emergency Room as many as three times a week because we were unable to control the vomiting that accompanied my migraine attacks. Even with the care of a neurologist, I was consistently told that there was nothing else that could be done for me. I went to countless different health care practitioners who all gave me the same spiel. I was lucky to have a primary care physician who refused to give up on me and, in June 2015, I traveled to Boston to meet with a certified headache specialist. I relayed all of the things doctors had told me previously and ended with “I know that there is nothing else that can be done for me but I need to increase my quality of life, even just a little bit.” I remember him staring at me for a moment before saying “There is *NEVER* not anything else that can be done.” He proceeded to explain a variety of different options, including some treatments that were not yet available. I was hopeful for the first time in a long time.
“…but there was still a spark of hope that refused to go out.”
Over the years, more and more buzz surrounded the anti-CGRP medications. I found myself getting excited and hopeful that maybe this would be the treatment that finally helped me. But then I’d remind myself of all of the treatments that had failed me, treatments that had either stopped working or that had never worked in the first place. At this point, I had learned to remain cautiously optimistic…but there was still a spark of hope that refused to go out.
The first six months of 2018 were the sickest and most painful months of my life. I was in constant pain, vomiting almost every day, and I had almost no symptom-free time. I eagerly awaited the FDA approval of Aimovig. My headache specialist gently reminded me that these new medications that were slated to be available soon were designed to prevent migraine attacks, not treat attacks that were already in progress. Again, he told me to remain cautiously optimistic. I tried to heed his advice.
“I took a sip of water and all of sudden it hit me: I wasn’t in pain!”
On May 17, 2018, Aimovig received FDA approval. Almost exactly one month later, I found myself in my primary care physician’s office learning how to administer my first dose. I knew that this injection might not help right away. I had prepared myself for that. But hopefully it would help prevent future attacks. It was June 19 and I was hopeful. I woke up on June 20 with a peculiar sensation. I sat up slowly and moved my head around gently. I took a sip of water and all of sudden it hit me: I wasn’t in pain! I wasn’t nauseated! I was actually hungry! Plus, I’d slept through the night. I hadn’t been completely pain and symptom-free in ages. Was this a coincidence? Luck? Could the medication have worked that fast? I tried to take my therapist’s advice to enjoy the pain-free time instead of analyzing it but I couldn’t help but wonder if this was a sign. Was the Aimovig actually going to help me?
I was free of all pain and symptoms for almost 2 weeks before I had my first migraine attack since taking the medication. I couldn’t remember the last time I’d gone that long without an attack. I began to average 8/30 migraine days per month, down from my previously 30/30 migraine days per month. By October 2018, I was down to 2-4 migraine days per month. This shocked me, my family and my healthcare team. None of us had expected this kind of response. I was a Super Responder and it felt like I had my life back. I was so incredibly grateful.
“I wasn’t worthy of this treatment. I didn’t deserve it.”
However, I had some other feelings that I wasn’t expecting. I had been diagnosed with depression the year after I was diagnosed with chronic migraine disease. I had always thought that my depression would lessen when my migraine attacks lessened. I quickly found out that that is not how depression works. I couldn’t put my finger on why I was depressed and I felt so ashamed and guilty. I had wished and hoped and prayed for this medication to help and it did and now I was wasting my migraine-free time being depressed? How ungrateful of me! I wasn’t worthy of this treatment. I didn’t deserve it. It should’ve helped someone else. I thought of my friends who were parents or who did such amazing things in the midst of their pain. I kept asking myself “Why me?”
I was also incredibly overwhelmed. I had all of this time on my hands and I had no idea what to do with it. My life had pretty much been on hold since the migraine attacks began at age 19, so I was (in my opinion) incredibly behind in life. I began to panic. I have to get a job. I have to get my own place. Am I going to go back to school? I didn’t know how to do any of that! How was I ever going to do any of it? It didn’t help that people were constantly asking me about it. They meant well. They were excited that the medication was helping me. But I was terrified. Terrified that I wouldn’t be able to do any of these things that I was supposed to do and terrified that I wouldn’t have enough time to do them all before the medication failed me, as I was sure it would. All of the other medications had failed me, so why would this one be any different? I was in a near constant state of anxiety, waiting for the other shoe to drop. But each time someone said to me “How awesome it must feel that the medication is working!” I smiled and nodded. I couldn’t let people know what was really going through my head.
“What was I going to do now?”
I was also fearful that my migraine friends would abandon me, the way my other friends had abandoned me when my migraine attacks began. I was worried that the community would no longer value my input, my perspective, or my presence and I couldn’t bear the thought of losing my chosen family. But I wasn’t in constant pain anymore, or even weekly pain. Would anyone even take me seriously? I’d built this life for myself as a writer and an advocate, as a way to make my pain mean something. What was I going to do now? It was just one more question to add to the pile.
Luckily, I see an excellent therapist on a weekly basis and he helped me begin to work through all of these anxieties and fears. He also helped me address the anger and frustration that I still harbored for all of those years that were stolen by migraine disease. Along with my parents, my primary care physician, and my neurologist, my therapist helped me understand that this was a huge life transition that was going to take some getting used to. I couldn’t expect to be comfortable with it overnight. I had to essentially re-learn how to live my life entirely and I had to learn how to pace myself so that I wouldn’t overdo it and get overwhelmed. I had to learn that healing is not linear and it is not a destination. I will be healing for the rest of my life, just like everyone else.
” I had never allowed myself to dream that I would ever have this quality of life but I certainly am grateful for it now that it’s here.”
It has been almost a year now since my first dose of Aimovig and I cannot believe all that has changed in that time. I’ve been able to travel more and participate more fully in my advocacy work. I have been able to accept some writing/speaking engagements. I have been offered some part-time work and I am considering going back to school. I’ve started singing in a local choir and participating in a chronic illness support group in my town. I’ve lost almost 50 lbs and I’m learning how to create healthier eating habits with the help of a nutritionist. I still have migraine attacks. Aimovig, like everything else, is a treatment, not a cure. I had never allowed myself to dream that I would ever have this quality of life but I certainly am grateful for it now that it’s here.
MEET THE AUTHOR
Michelle L. Tracy is a preschool teacher turned Patient Advocate whose mission is to empathize, educate, and empower the millions of people living with migraine disease.
Diagnosed with chronic migraine disease at 19, Michelle began writing as a way to process her pain and give it meaning. She slowly realized that her thoughts and experiences had the potential to help others even as she lay in a dark room, unable to lift her head.
She created Adventures of a Migraine Warrior (also known as The Migraine Warrior) and its companion Facebook page where she has produced a valuable resource full of personal stories, cutting-edge research, advocacy opportunities, and more.
Her experiences have led her to partner with many organizations in the migraine community and to both write and speak about her life as an advocate and migraine warrior, often with a focus on mental health and stigma. You can connect with her on Facebook, Instagram, Twitter, and her blog.
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