Honestly, I don’t quite remember my life prior to my TBI. I can barely recall it. I can hardly imagine a time when I lived without problems and limitations. When I asked my mom, she explained that I used to live limitlessly, never thinking twice about trying something new, whether it be surfing, trying exotic food, and going on rollercoasters and ropes courses of terrifying heights. I loved to dance, sing, play the piano, draw, and play tennis without a care in the world. I was witty — my family used to call me a firecracker, because I was the queen of the one-liner. I have longed to return to this life, throughout my concussion and even now. This “normal,” my “normal,” seems so far away, a distant reality I can’t even define. I only know it was better. I had a carefree spirit because my actions had no real consequences.
On January 2, 2018, I sustained a traumatic brain injury after slipping down the stairs in my home. At first, I insisted I had not hit my head, until everything around me looked like the Thermal filter from the Photo Booth app. I suddenly got a pounding headache and became overwhelmingly nauseous and dizzy.
Over the next few months, I experienced some of the immediate side effects of a concussion. I had light sensitivity, which was rectified with sunglasses. I was always seen with bulky light green headphones which looked like they could be found in a shooting range because of my sensitivity to sound. For the first month, I was unable to go in the car, as it made me overwhelmingly nauseous. I was basically under house arrest. The worst symptom of all was the headaches, which stopped me from doing much of anything, whether it be holding a conversation or enjoying time with my family. I occupied my time listening to audiobooks, playing with “magic sand,” watching TV, cooking, playing card games and a board game version of the escape room with my friends.
By May, I could partially go to school, and was able to begin to take a few assessments with extra time and breaks. I was able to make up my work, take breaks during my test and return to them once the headache subsided. Throughout the summer, I still experienced headaches that my doctors believed to be a result of post-concussion syndrome (PCS) that was exacerbated when I focused for long periods of time and exerted myself. The headaches responded to Aleve, but I was taking two doses every day for months.
In mid-October, I began to experience more severe and persistent headaches, balance problems, difficulty concentrating, double vision, and weakness/loss of function on the left side of my body. I missed a number of days of school and often left in the middle of the day when the sharp headaches made it impossible to sit through classes. After a number of doctors’ visits, extensive diagnostic tests, and multiple exams, I was eventually diagnosed with migraine with aura. For the next few months, my doctors prohibited me from taking any assessments. I was forced to take constant breaks and go to physical therapy three times a week. I spent my entire summer finishing the work that had been delayed during my migraines and I didn’t complete my last assessment until August.
During a migraine (with aura), I get a throbbing headache on the back of the left side of my head, and a tremor in my hand. Soon afterward, I will develop a tingling sensation and/or shooting pain that runs up my left arm or leg. At its worst, I also begin to lose sensation on the left side of my face and have difficulty holding anything in my left hand or walking. During these attacks, it is nearly impossible to convey my thoughts clearly and I experience double vision, dizziness, nausea, and imbalance. When the migraine reaches this point, it takes days to recover and symptoms make it impossible to return to school. I continue to have chronic migraines that are brought on by some combination of lengthy reading, long periods of concentration, lack of hydration, sleep patterns, and pressure changes.
I currently use a medical device, eNeura sTMS, a medical device that had just been approved for adolescents experiencing migraine with aura. The machine works by using central neuromodulation, a way of changing the electrical patterns in the brain, to stop migraines. It produces a single, powerful electromagnetic pulse to calm the electric storm that doctors believe cause migraines or, as I came to think of it: this force was calming the storm in my mind. With daily use, sTMS aims to prevent the neurons from becoming hyperactive in the first place and leads to fewer attacks. The first time I used the machine, it immediately stopped the tingling in my arm that was an aspect of the “aura” of a coming migraine. Over the last few months, I have been able to not just survive but thrive.
I would like to say I have returned to normal, but honestly, I am not even sure I know what “normal” means anymore. Whenever I have a migraine attack, it truly derails my life. It becomes difficult to keep up with my school work, participate in class, or even to hang out with my friends. As a result, each day my main focus is to avoid having a migraine at all costs. This means drinking at least eight glasses of water, sticking to a consistent sleep schedule, not concentrating for too long, eating well, exercising and pacing myself. More than this, I have to work to keep my remaining symptoms at bay and avoid situations that could exacerbate my symptoms. For instance, I do yoga and physical therapy to improve my balance, to avoid another fall.
Whenever I go out with my family and friends, I make sure to bring noise-canceling headphones, in case a place gets loud. I am unable to have sleepovers with my friends and am forced to leave early, in order to stick to my sleep schedule. Prior to my concussion, I loved to go to the beach with my family. However, now I can only go for a short period of time because the waves make me dizzy and make me feel nauseous for hours afterward. Even when talking to my closest friends, when I am in the midst of a migraine attack, I will have difficulty following and contributing to the conversation. Despite my best efforts, I still have my good and bad days.
Sometimes it feels like nothing is getting better, like I am running and giving it my all and just not moving forward. When that happens, I try to realize how far I have come, to think back to the days of sitting in a dark room, wearing sunglasses to school, missing school, and being unable to balance. I fittingly call this my new normal. Even though this illness has truly changed every aspect of my life, and I wish I could go back to the way my life was before my concussion, I know I have become a stronger and better person through it.