Living with migraines little-understood by community
One vivid memory from my summer involves pulling my blanket over my head, begging God to let me finally fall asleep. Instead of the blankness of sleep, my mind was occupied with wanting to smash the clock display on the DVD player because its light was enough to cause sharp pain even through my eyelids.
I am a student living with migraines. Statistically, there are probably 450 other students and 30 faculty members at Calvin College who live knowing that their plans can change without their permission.
I didn’t think that my migraines were going to control my life until a particular one this summer lasted 30 hours. Two weeks later, when I had reached the 12-hour mark for a migraine, I gave up on “toughing them out” and went to after-hours care. The physician gave me two shots and a prescription, and then advised me to see my normal doctor when I got another migraine. I followed his advice two days later.
My doctors often asked me to rate my pain on a scale of 0 to 10. On this scale, 1-2 meant that my pain was distracting, 3-5 that my pain made it difficult for me to do normal activities, 6-7 that I could not leave my home, 8-9 that I could not leave my bed, and 10 was reserved for “I cannot imagine a worse pain.”
I wish I didn’t know what a 9 felt like. It’s an overwhelming force that can even shut down my ability to think. There’s nothing else but the pain. There is no awareness of other people in the room, no knowledge of where I am, not even the ability to think that maybe medication might help. At some moments, the pain even keeps me from thinking clearly enough to cry out to God.
As bad as the pain is, the anxiety is worse. When I feel a migraine begin, I panic. I know that getting anxious will only make a migraine more likely (since stress is a trigger), but I can’t help myself. I’m aware that I’m in this vicious self-magnifying cycle and that awareness makes me even more scared.
Visiting my doctor helped with my anxiety because I learned a lot about my disability and the misconceptions that surround it.
For example, migraines are not really bad headaches. Some migraines are preceded by auras, or distortions in vision. When a migraine occurs, the neurons in the brain get hyperactive, which cause the blood vessels in the brain to swell, which then causes extreme pain. This pain often starts at the base of the skull and then grows along the curve of the head. Those experiencing a migraine become extremely sensitive to lights, sounds or smells.
I learned that taking Tylenol or Ibuprofen, like you might do for a headache, is often worse than going without. When the drugs wear out, a “rebound” migraine occurs. Medicines containing “triptans” are prescribed for use instead. If migraines occur frequently (two or more a month), a daily preventive is often prescribed. Since there is no known cause of migraines, medications can’t be made for the actual condition; instead treatments focus on symptoms. An analogous situation would be to take medication to treat diarrhea instead of to kill the tapeworm in your gut.
I learned that many things can trigger a migraine, and an important part of my treatment was trying to figure out to which triggers I was susceptible. Common triggers include stress, lack of sleep, strong emotions, specific foods, menstruation, flickering lights, strong perfumes, weather changes or any combination of the above. When I first read through this list, I immediately realized how much my lifestyle would have to change for college, especially as an engineering major.
As I was authentic about what I was going through with my community, both at my church in Colorado and here at Calvin College, the initial responses were not very helpful. “Have you tried figuring out your triggers?” “You should stop eating wheat.” “Are you okay right now? Do you need some Advil?” “I’ve heard caffeine can really help.” “My class needs to be your priority.” And my personal favorite: “You probably have a brain tumor.”
Instead of advice on my condition, I wanted someone to acknowledge that my situation stunk. I needed to talk with someone about being nervous to go back to the stress-filled world of college. I needed someone to talk with about feeling like a burden to my family and a flake at work. I needed someone to offer to hang out with me to distract me from my anxiety. I needed someone to pray with me.
This summer, as migraines caused an upheaval to my routine, my family was a huge blessing. When I got a migraine coming home on the bus, my dad drove along the route until he found me and picked me up so that I could finally cry without strangers watching. When I disappeared into the basement to hide from sunlight yet again, my mom brought me water and a blueberry muffin. When I came upstairs hours later only to retreat again, she held me while I released my bitterness.
Recently, I’ve become aware that God is working in me through this disability. Through Psalm 13, I found extreme comfort and also gained a better understanding of what it means to lament with Him. In the moments after the worst of my pain this summer, I felt God gather me into his arms and I knew that he loved me. I will carry these experiences with me for the rest of my life.
I also have found God working in me by increasing my ability to be compassionate about the pain of others. He has given me a voice with which to reach out to others who suffer and with which to share my story. I hope my story will educate those who do not understand migraines and also will glorify God for all His good gifts, even those that are hard to carry.