Understand the debilitating reality of chronic migraines

I was eight when I first discovered fire in my brain.

In the gentle summer lull, I woke to a vise-like pain in my head that slowly blossomed into a pounding metronome right behind my eyes. I yelled for my mother, who immediately provided Advil and water, but neither did anything to ease the pain. I rolled my body into a ball, clamped my head between two pillows, and sobbed. Most of the eight hours passed, after which my tired second grade self succumbed to exhaustion and fell asleep.

My parents were never the type to go to the doctor for no real reason; anything but leprosy or spontaneous inflammation was just a chance to “cure” it. So when my mother booked me a doctor’s appointment the next morning, it was a surprise for all of us. It was my first indication that we were on uncharted territory; Something serious and mysterious crept over the edge of the horizon. We walked into the quaint Vermont clinic like zombies, tired from last night’s episode. Nonetheless, we knew what I was experiencing was serious and we were determined to find out what was wrong and how to fix it.

It would take multiple doctor’s appointments, an MRI, and an EEG (the placing of electrodes on the scalp to detect electrical activity in the brain) to clarify the problem at hand. In the spirit of medical ambiguity, there was good news and bad news. Apparently I was suffering from migraines. That was probably the good news. It also appears that no discernible cure was in sight. There were medications, treatments, and prevention methods available, but I would probably have this headache for the rest of my life.

The fire in my brain burned gently and steadily. Most days it was tame, even docile. Then, without warning: an inferno. There was no point or reason, it ate when it saw fit and dissolved as unexpectedly as it blazed. I quickly learned that the science behind migraines is guesswork at best. They can be the result of a faulty vascular system. Or maybe a chemical imbalance. No, maybe it is due to an underlying central nervous disorder. The hypotheses are numerous and varied, and all culminate in a truth that is as frustrating as it is elusive.

Nobody knows for sure.

As I got older, the headaches worsened, often caused by the hormonal changes that accompanied puberty. They went from mere headaches to full-fledged neurological catastrophes. I developed migraines with aura; In addition to the divisive headache, there was visual and tactile disorientation. It stared into the center of a lightbulb for 10 seconds. With every blink, a lot of glaring, glowing spots reappeared and clouded my field of vision. But unlike the fleeting blows of a lightbulb, these vicious flashes would not let up. It expanded, devoured my line of sight and sent my depth perception upside down. They stopped for hours and bored into my eyes, skull and brain.

With the visual aura came its equally destructive sister, the tactile aura. She stroked your fingertips with a gentle tingling sensation that gradually puckered over half of your entire body. Half of your face, chest, hands and feet, completely numb. You try to drink a glass of water, to read, to enter a lighted room, all in vain. You try to push it through, hold it out, only to throw up in the middle school nurse’s office, one hand around the box of a pill that didn’t work, the other limp with numbness. One side of your head is on fire, the other does not feel anything.

Despite the mystery surrounding chronic migraines, every doctor you visit will encourage you to identify your triggers. They are numerous and ubiquitous. Everything from preservatives to changes in air pressure can occur once. I was put on a number of elimination diets, completely changed my sleep schedule, and avoided caffeine. I did everything in my power and the migraines came anyway.

In contrast to many others, I was lucky enough to have migraines mostly sporadically and rarely. In my adult life, I only have severe migraines every two to three months. As a child, I was less fortunate. In addition to my migraines, I have dealt with anxiety all my life, which I have since identified as one of my primary neurological triggers. I now have the autonomy to receive the treatment I need to mitigate the negative effects of mental and physical illness. I have the tools I need to adapt to living with migraines. But they had their price. In my senior year in high school, my anxiety was at an all-time high. For the past semester, I woke up with migraines almost every day. I couldn’t read, study, or walk around without help. I felt sick all the time and the pain was excruciating. My grade point average dropped and my absences put me at risk of not graduating.

It was one of the lowest points in my life and I was in too much pain to acknowledge it. I miraculously found a clinic that specializes in the treatment of migraines. I tried every drug they could give me, desperately looking for something that could treat, if not prevent, the spread of the fire. I took a cocktail of pills every morning, some of which made my extremities tingle at times during the day. I felt sick with others. I went in before every major event and got eight injections in the head, two on each side of my forehead and temples, four at the base of my skull. When that failed, I started taking three hour infusions of magnesium. From the International Baccalaureate exams to the prom, everything was booked for both treatments. They helped until they didn’t and left me in constant limbo. I could wake up with a burning brain or a brain in peace, but I could never predict which one. It was a kind of existence, but none left to be desired.

The first time I was given a drop of magnesium, they started giving me anti-nausea medication. As soon as it reached my bloodstream, I fell into a full-blown panic attack. I tried to get up from the hospital chair and take out the needle; the loss of control, mixed with the side effects of the medication, put me in a state of horror. According to my mother, I begged her for 10 minutes to get me out. My doctor, alarmed by the effects, quickly prescribed a sedative to reduce the psychological effects of the anti-nausea drug. At that point, I was actually able to get the medication that was supposed to relieve the headache.

When the school stress subsided, I felt better and the cluster headache subsided significantly. I started taking anti-anxiety medication, which helped tremendously. I took a year off to curb the stress and did my best to get to college under control with my headache.

Despite the capricious nature of the best plans, the past few years have been relatively manageable for my migraines. They’re just as debilitating, but not as common as they were before. They come without warning, incapacitate me for most of the day, and leave little more than a dull ache in their place. I live knowing that fire is inevitable and uncontrollable. All I can do is hold a bucket of water and try not to stir up the flames.

It bothers me more than it should when people mix headaches with migraines. It bothers me when someone tells me to pop an advil or have some water. Yes, I have tried acupuncture, essential oils, and meditation. No, they didn’t work. Yes, I tried Tylenol for migraines. No, I can’t just pull it off. I’ve learned the hard way to be gentler on myself because my health demands it. I’ve learned that I can’t control everything, but what I can, I’ll do. I’ve found fire in my brain and it’s not going anywhere. I have found fire in my brain and it is my responsibility to keep it from consuming me from within.

Statement columnist Darby Williams can be reached at [email protected]