I have Chronic Migraine, But It Doesn't Have Me
My migraine story began during my freshman year of college. After a night out with friends to see the Trans-Siberian orchestra perform, I felt the debilitating pain of a migraine for the first time. Over the next several years I experienced a few more migraine flares, unsure at the time of what exactly was happening. During my third year at at school, I began experiencing attacks that lasted for multiple days. It was scary, it was confusing and I felt completely victim to the unrelenting pain that seemed to come and go on it's own schedule. As the migraines increased in frequency and intensity, I tried to avoid them through lifestyle modifications. I didn't stay out late, I moved into a quieter house, I avoided drinking alcohol, I skipped concerts and loud events. When each migraine ended, I'd return to engaging with my friends and life again, always hoping the next one wouldn't be as bad.
The next year, my migraines began the gradual shift from episodic to chronic (a diagnostic term I would not have understood at the time). Migraine pain became more easily triggered. I started to avoid even more things - going to restaurants, movie theaters, too much time in the sun, aerobic exercise and other activities I enjoyed but reliably triggered attacks. Strenuous days and big social events became marked by several hours before or after in bed with icepacks and prayers for my triptan medication to kick in. I remember the loneliness and pain of spending the evening after my college graduation by myself in my dark bedroom with a raging migraine, while all of my friends were out celebrating the major milestone we had just reached. That night was just one of many I spent this way, as the severity of my pain increased and regularly brought me to tears, leaving me curled up and pushing my palms into my eyes until the stabbing sensations subsided.
The following Fall, my shift toward chronic migraine turned full blown. After graduating from college I moved back home to my parents' to take care of my migraines so that I could get a full time job and start my "adult life". What has unfolded from that time, Summer of 2014, to present day, has been a journey I never could have imagined. Desperately trying to mirror what everyone else my age was doing, I applied for jobs hoping that routine might help solve my problem. Instead, my health continued to deteriorate and my life felt like it was slipping through my fingers as low and no pain days became fewer and fewer. After months of trying to keep it all together and working hard to perform well, I ultimately had to accept the difficult recommendation from my doctor to take medical leave from my first full time position.
My migraine treatment has included eleven different daily preventative medications, 31 botox shots in my face and neck every 3 months, targeted occipital nerve blocks, outpatient infusion therapy, a home trans-magnetic stimulator, sphenopalatine ganglion nerve blocks, short course steroid tapers, LED light therapy, physical therapy and more. Alternative treatments have included acupuncture, acupressure, mindfulness based stress reduction, pain management classes, cognitive behavioral therapy, massage & body work, elimination diets, essential oils, supplements, and health coaching. Despite all of these interventions, I've still ended up in the emergency room and urgent care after days of unrelenting pain hoping for a few hours of relief. I still struggle with symptoms every day and unpredictable flares that are difficult to treat. As I searched for answers from the experts, it became scary to realize how much is unknown about migraine, especially treatment resistant chronic migraine.
About a year ago, in spite of everything, I decided that I was going to be okay. I started to search for answers inside myself to the fears and questions that were devouring me as I fell deeper and deeper into struggling with my health. But the internal choice that I will be okay is a decision that has changed my life. It has helped me find peace, perseverance, gratitude and acceptance. It has improved my communication, relationships, and experience of pain. Though my migraine attacks remain challenging to treat, I am building an inner space grounded in loving kindness and acceptance that I can retreat to. And I believe wholeheartedly that I will recover, that every day I am working toward better management of my symptoms. I will work again. I will be able to run again. I know I will find balance and keep working toward wellness.
This page is my journey since that day, since deciding that I will do my best every day and nothing more, since accepting and loving myself wholly and completely as I am in this moment, since choosing to love my life more than I hate my pain. I invite you to join me on this journey and look forward to connecting with all of you.