When describing me, my mom has often said that I carry the weight of the world on my shoulders. Perhaps a more fitting description is that I carry the weight of the world in my head. This past summer, I came to the scary realization that I couldn’t remember what it was like to not wake up with a migraine. After five years of different doctors, treatments, and horrific migraine episodes, I finally went to see a neurologist with a headache specialty this summer, and I was diagnosed with chronic migraines. According to the Migraine Research Foundation, more than four million adults in the United States suffer from chronic migraines, meaning the individual endures 15 or more migraines a month. After years of struggling with this disease, I feel that I am finally in a place where I can properly express the physical and emotional toll chronic migraines can take on someone’s life. Whether you experience migraines yourself, know someone who does, or are unaware of someone you know suffering from this, I hope my story can help start a conversation about this rarely discussed topic.
I endured my first major migraine episode when I was in eighth grade. Everyday, I went to school with this feeling of my left eye being closed, even though it wasn’t, and little feeling of the left side of my face. I had no idea what was wrong with me, so I went to an ophthalmologist who then referred me to a pediatric neurologist. I discovered that for about two months, I had been having migraines with aura every single day. American Migraine Foundation describes a migraine with aura, also known as a complicated migraine, as having a range of symptoms including vision disturbances, sensory changes such as feeling tingling or numbness in different parts of the body, or speech problems.
In ninth grade, I experienced my second episode. The neurologist had previously warned me that playing tennis for my high school team would not be beneficial to my health; of course, I did not listen. I would come home from every tennis practice with a throbbing headache from playing in the heat and sitting in hours of traffic. I would fall asleep at 8 p.m. and then wake up at 3:30 a.m. to do my homework and study. Being on this terrible sleep schedule helped me finish my schoolwork, but it did not benefit my grades and further hurt my health. My sleep schedule was so erratic that I would wake up with a migraine and go to bed with one. I decided to not play tennis during my sophomore year of high school: migraines took away the sport I loved.
Throughout the rest of high school, I lived my life in fear of getting a migraine. Before every test or loud social gathering, I would take Advil. I often missed social events because I knew they would induce migraines. There were so many times when I missed school because I was in bed with a migraine from all the academic and social stresses of high school. According to the Migraine Research Foundation, more than 90 percent of sufferers are unable to work or function normally during their migraine. When you have a migraine, you can’t watch TV or read. All you can do is lay in bed in a dark room and hope the pounding will stop if the medication actually starts working.
When you spend a lot of your teen years with your head constantly pounding and laying in the dark, you can feel really lonely and sad. I think the reason why I’ve struggled for so long to talk about my illness is because so many of my peers have shut me down when I’ve opened up. Teens want to run around on an unscheduled routine, go to loud social functions, and live adventurous lives. I’m lucky to have friends now who are really understanding, and I am more capable of voicing my boundaries. When I was younger, though, I wanted to fit in and not all the people I surrounded myself with understood me. Anytime I opened up about having a migraine, certain people made jokes about how I constantly had a headache, and others would be inconsiderate if I wasn’t feeling well. I’ve lost friendships because people didn’t understand my struggles, instead thinking that I was a boring, straight laced person. I felt so alone and misunderstood by my peers, so I attempted to appear as if I wasn’t struggling with my health by not talking about it. If you know me personally, you’ve most likely had a conversation with me while my head was throbbing or I couldn’t feel a part of my face. These episodes just happen so often that I have learned over the years how to function while feeling terrible. I tried so hard when I was younger to make sure my illness did not inconvenience others that I forgot to take care of myself.
The first year of college took a huge toll on my health. From the stress of being in a new school environment and city, finding new friends, as well as adjusting to dorm life, I constantly walked around with tension in my head. Having my boundaries and morals consistently put to the test caused me so much anxiety, and of course provoked a lot of migraines. I also developed terrible eating and sleeping habits because I was in a phase of my life where I wanted to just keep up with my peers. I was popping Advil constantly, and often, the Advil didn’t even work. By the summer, I was not properly functioning. I had a migraine with aura every day, my head was constantly throbbing, and I was extremely lethargic. One weekend, I spent 72 hours in bed in the dark because no medicine I took got rid of the migraine. I couldn’t stand without feeling dizzy. I remember crying myself to sleep that night as my head throbbed, thinking I would never get better. I just thought I would always be this way, and that there was no hope for a cure.
For many years, I was told that I was just a person who got migraines. Receiving the chronic migraines diagnosis this summer validated the pain I had been feeling all these years. According to the Migraine Research Foundation, there are less than 500 certified headache specialists in the U.S., but 39 million migraine sufferers as of 2018. Unfortunately, only 4 percent of migraine sufferers see a headache specialist. Going to a headache clinic this summer transformed my life. Walking into the waiting room and seeing people who were suffering from similar conditions made me realize that I am not alone. After having bloodwork and an MRI done, trying different medications this summer, and evaluating different treatment plans, I established a routine of going to acupuncture once a week, taking special vitamin supplements for migraines three times a day, and mandating that I get seven to eight hours of sleep. Implementing this routine into my life has helped tremendously. I am still in early stages of treatment, but I’ve seen a huge decrease in migraine episodes thus far. I know I will never be cured, but I feel that I finally have some control over my health. Gaining confidence through taking ownership of this chronic illness has given me the capability to advocate for myself and create boundaries, which I was never capable of before. I want to say a massive thank you to my friends and family for being supportive and for pushing me to look for treatment methods that could work even when I had given up hope. To everyone who reads this piece, I thank you for reading my story. I hope that the conversation on migraines continues, and I urge everyone to take care of their health. No test, person, or event is worth sacrificing your health. Sometimes, you don’t realize how much pain you’re in until you start to feel better and realize that a life exists without constant pain.
Learn more from the Migraine Research Foundation.