It is going on my two year anniversary of having migraines. Almost two years of my life being completely different than anything it ever has been. I’ve hesitated about writing this for a while now, not wanting it to look like an attention-seeking pity party or like I’m saying my life is the worst in the world. It isn’t. In fact, I live a very privileged life and always have. However I remember reading Perks of Being a Wallflower for the first time and having a few lines stick with me. I reference them often when I try and suffocate my pain because I feel like it’s not valid.
“I think that if I ever have kids, and they are upset, I won’t tell them that people are starving in China or anything like that because it wouldn’t change the fact that they were upset. And even if somebody else has it much worse, that doesn’t really change the fact that you have what you have.”
Although being aware that others might have it much worse is helpful and humbling, it doesn’t take the pain away. So, here is a SparkNotes synopsis of the ongoing chapter in my life with migraines.
Please don’t think that you know the answer. Don’t read this and try and tell me that because you looked up an article on Wikipedia or WebMD, you’re an expert in my condition. I’ve heard countless adults tell me that it’s all because I’m on my phone too much or am just a little stressed out. Maybe I’m not eating the right diet or exercising the right way. Perhaps I’m not taking the right slew of vitamins or not praying enough. Because believe me when I tell you: I’ve tried it all.
I got my first migraine in the spring of my eighth grade year, right before my first panic attack. I remember sitting in my history class, holding my temples between my index fingers and pressing as hard as I could into my skin. My head felt like a war zone. There were armies on both hemispheres of my brain, shooting bullets at the ground beneath them and puncturing the pink beneath the soldiers’ feet. Their boots were heavy as well and I could feel the grooves in the heels digging in. They were shouting at each other, screaming in pain when shot. I felt the sun rays burn like my nerve endings were on fire underneath the surface tissue.
I was in so much pain that I wanted to gauge my own eyes out with my fingernails. I know that sounds dramatic, but I felt like my head was under so much pressure that I was going to implode. Even the implosion would’ve been much less painful than the migraine.
After taking some Excedrin and going on with my day, I had my panic attack and that was that. A few weeks of attacks and headaches later, I learned that before I would have a big panic attack, my head would hurt. It was like my body’s signal of telling me “hey you’re about to feel like you’re gonna die just wanted to give you a heads up!”. But the summer before high school was relatively calm, and I managed to get my attacks under control.
Yes, my migraines are definitely linked to my anxiety issues. No, that is not the whole story.
Then my freshman year began. I don’t know how to describe how awful my freshman year was, quite honestly. Imagine any sterotypical high school movie with mean girls, awful rumors, and problematic boys, And then imagine being diagnosed with mood disorders and a chronic pain disorder that could potentially last your whole life. Imagine losing all your friends and having to make decisions about medications that could possibly make you infertile. Imagine being fourteen. So yes, my life fell apart freshman year and in a way, I lost it entirely.
They began getting bad during volleyball season. My coach was an arrogant, borderline abusive man with an ego so high in the air it was the king of cloud nine. I hated playing what I thought was going to be a life-long sport partly because of this man constantly telling me how I wasn’t good enough in his manipulative, twisted words. He was the worst role model I could’ve ever had, and with my brain a complete mess already, he sure didn’t help. During practice, my vision was fuzzy and I could barely see the balls as they were coming at me, trying to set them up properly in the air for my teammates. The squeaks of shoes on the gym floors felt like daggers to my ears, the lights like third degree burns on my eyes. The long days of school and fluorescents were closely followed by practices that seemed to last a lifetime. I cried every night after practice on the way home, viciously trying to focus on the streetlights that were swimming around in front of me in a haze of tears and auras. I used to pinch my skin and repeat “Remember this. Remember this. Remember how you feel right now,” as a way of trying to engrain my vow to never play volleyball again. I was so confident that it was because of this man and that sport that my migraines existed. I thought that when the season ended, so did my pain.
But it didn’t. It had just begun,
I was up to three doses of Excedrin a day, more than any normal human should take, let alone a small fourteen year old female who already had issues with anxiety. I would do anything to take the pain away and turned to caffeine as my main medicine, drinking Coke-a-Cola every day along with the three doses, which already had adult measurements of caffeine in them. It was a vicious cycle of numbing the pain until the next wave came. You can imagine the shock of hearing that I had to stop taking Excedrin from my first neurologist. I had to go completely cold turkey, taking no kind of caffeine or over-the-counter acetaminophen. I cried when I heard that, too. He was taking away my only relief. I went on five different migraine medications freshman year, some of which stopped my heart from working, others that caused severe chest pain, another that made me lose feeling in my limbs… I could go on.
Those few weeks were absolute and utter hell. I could barely breathe in class because I was in so much pain. It felt like Satan had beat me with a spiked club, only I never passed out from the pain. I was awake and was forced to operate as if I felt fine. School was miserable because my vision was constantly messed up, I was sensitive to sounds and smells, and my nausea was at it’s peak. Over the course of the fall, I had lost twenty-two pounds and had dropped three jean sizes. You could see my ribs faintly and I had a thigh gap, something I don’t think I’ve ever had. I was a walking bag of aching bones.
My teachers were wonderfully sympathetic and helped me the whole year, although those are the only people I will credit. The administration did nothing, and later on they would be a greater hassle than a help. They cared about my test scores and the accolades I was bringing in, and if anything was going to interfere with that, then they didn’t care about my well-being. My biology teacher always re-arranged her schedule to help me and understood my condition because her daughter had migraines, too. My history teacher was flexible with quizzes and reading assignments. I’ll never forget the day I came back from getting blood work done, and him noticing the band-aide. He left a single piece of coconut candy on the corner of my desk during class, telling me that I needed to keep my blood sugar stable to help my head. That’s how much my teachers cared. Last but certainly not least, my English teacher helped me beyond belief. He was a mentor and a friend, always making English a fun time of my day, sometimes the only enjoyable part. He encouraged my writing skills, helping me edit my essays and stories on the side, and always listened to me when I needed it. He was one of the only things that kept me going.
The next ray of hope was the summer. If I got rid of all the stress, I could have a nice, pain-free summer. Once again, I was wrong. I hope you are beginning to see a pattern with people promising me relief, and nothing happening.
And that leads us to sophomore year. Sophomore year was by far much more painful than freshman year, which is shocking considering how much I went through. It was less painful in the social atmosphere as a lot of the people who had caused me distress had left the school due to some reason or another. I had hope. Sophomore year is supposed to be horribly rough, but I could do it. My reputation had already been ruined from the last year, and I had nothing left to lose.
It started off just as bad as I had anticipated. I hated all of my classes except for English, which I was lucky enough to get the same teacher as freshman year. Other than that, my life reverted back to its old days of dysfunction and pain. The migraines started right up again, this time worse. I ended up routinely going to the neurologist and getting prescribed pills on pills of medication that began to drive me insane. But of course, these were not the only medications, as I also was dealing with antidepressants from my psychiatrist. Let’s just say I was really good at swallowing pills.
Then came October. The next medication was Topemax, one whose name makes everyone in my family shake. This medication was supposed to help. It had the most positive relief promises. I remember being numb to prescriptions when he’d say them out loud, making it feel like I’d throw anything down the hatch if it had even a small chance of helping. You could’ve given me arsenic tabs, promising relief, and I’d take them. Topemax sounded like it could help. I was again, hopeful.
The best way to describe my experience with Topemax is homecoming night. There was a boy interest in the weeks prior to the prescription, and I thought I liked him a lot. He asked me to go, and I excitedly agreed. The days before the dance, though, I began to feel less and less attracted to him. Everything he said annoyed me and it’s like a switch in my brain just turned off. No more feelings. Towards him, towards anyone. I was numb but so heavily depressed at the same time. I couldn’t figure it out.
My dress was beautiful. God, I love that dress. When I woke up homecoming day, I felt it. I felt the hum of pain in my head waiting for the recital. Like all the instruments were tuning themselves, waiting for the conductor. But no, I’d be fine. It’d be fine. I got ready and showed up to the dance, feeling queasy and like my whole body was against me. I stepped onto the gym floor and immediately was assaulted by glaring, colored lights and upbeat dance music. Just like that, the symphony started. I ran to my bag and took a Xanax because I began panicking. I couldn’t see much, my ears felt like they were bleeding, and I thought I was going to throw up. I hung out with my English teacher and tried to make myself feel less miserable, but I couldn’t even dance with my date. I had no energy or stability. I just had to leave.
My parents picked me up early from the dance, and I walked out with my high heels in my hand, sobbing. Why couldn’t I be normal? Why couldn’t I, for just one night, look pretty and dance with a boy? Why couldn’t I just live without pain for three hours?
I looked at the moon and asked the questions, but she didn’t reply.
I kept apologizing to my parents but they were quiet. I came to the conclusion that everyone hated me. After all, I had abandoned my date and friend and had made my parents leave their dinner together. I was so overwhelmed with the pain and anxiety, I felt like my whole body was a weight. In plain terms, I wanted to die.
I wasn’t suicidal, at least I don’t think. I wasn’t wanting to actually hurt myself, but I wanted to make the pain go away. And if that meant dying, then so be it. I wanted everything to just stop.
When I started failing tests at school, we knew something was up. I remember sitting and looking at a math test, examining a bunch of numbers that I had no idea what to do with. For years, I had been ahead of my grade by two years in math. I loved it because I didn’t have to think while doing it. Plug in numbers and go. But I looked at them and I just didn’t know. I would cry at least three times a day in classes, looking at my pre-calculus teacher and just thinking, “I want to die”. I felt so stupid. I couldn’t see, shower, hear, eat, or think. What was the point of trying?
My mom called my psychiatrist in the car one day, and I don’t think she knew that I was listening. She said I was hitting every signal of a suicidal teen, down to the bullet point. After a consultation with another doctor, he told me that in the psychology department, they refer to Topemax as “Dopemax”. It slows your brain function down, to say the least. We got off it quickly, and my mom knew I was feeling better because I began singing in the grocery store again. I had gone silent for months. She clutched my waist and nuzzled her face into my neck, and it hit me how low I had gotten. I didn’t even enjoy music anymore. That should’ve been the first signal that something was seriously wrong. At this point, my migraines were daily. No break at all. I went a day without a migraine one time, and it was like God was finally listening to my prayers.
I came off of Topemax, hoping that would help the pain. Once again, it didn’t. I began to stop hoping.
You don’t really recover after going brain dead for five weeks. It is impossible to catch up on school, especially at one as rigorous and inconsiderate as mine. I was forced to instill a 504 plan just to drink Gatorade and go to the bathroom when I wanted at first, until I eventually fought my way into getting an adapted schedule. Getting that plan was a hassle, and the administration made it so. When I say the administration of my school didn’t help me whatsoever, I mean it. They shot down every proposal of possible help to me, but never offered any solutions. It was up to my mom, and after a few weeks of the back and forth, she was an inch away from bringing in a lawyer. She still won’t tell me some of the things they said or refused to do, and she grinds her every time I mention it.
That brings me to now. A typical migraine for me lasts anywhere from three hours to three days, filled with intense auras and double vision, sensitivity of all senses, an inability to articulate thoughts well, dizziness, severe nausea and vomiting, complete with passing out occasionally. My migraines are a mix of genetics, mood disorders, trauma, hormones, and much more. It is not a one root situation. I am a heavy oak with many roots. My relief is more frequent, but fleeting. I have alternative medications and a set number of vitamins and supplements. I am used to the pain now, knowing my limits and what I need when I need it.
In these past few weeks, I’ve gotten my driver’s license and a job at my favorite coffee shop, things I never thought I’d be able to do. I am leaving my school that has done me more harm than good. I am getting out of a situation I have been stuck in for years, and for once, I think this time my hope will pay off. I have a future. It’s so bright I think I’m getting a headache.
Aleve, Maxalt, Zofran, peppermint oil, ice pack, Coke-a-Cola. I’ve got the routine down pat.