A Painful Lesson
Moments lost because of migraine
This weekend has me reflecting a personal ‘lost corner’ of my life.
I have a day-stealing, time-sucking condition, otherwise known as migraine. I lost two days of my life this weekend, days that will never come back, due to a debilitating headache that makes it difficult to function. Not to mention, it delayed my next Lost Corners post (it’ll be a good one when I finally finish it).
It’s hard for me to even write this. I don’t like to give my headaches any power. I tend to lose more time that way. After all, it’s already taken so much. I’ve lived with migraine for thirteen years. When it began, for many years, I’d only get two a month. Now, I get four to eight. Some months have been much worse. I once documented headaches on sixteen days in a single month.
But here I sit, thinking about my invisible pain that is so poorly misunderstood that neurologists don’t even venture to guess what’s causing it. Headaches are so incredibly complex that they manifest differently in everyone. It’s estimated that over 1 billion people worldwide suffer from migraine. There are thousands of triggers. Genetics. Too much or too little of caffeine, sleep, exercise. It could be any one of the foods on an endless list, as my doctor once handed to me, from sauerkraut to bananas to pizza to avocados. Loud noise, bright lights, overstimulated eyes. Any strong smell. Hormones. Muscle pain. Change in temperature. The wind or the sun.
Sometimes people ask if I’ve “figured out” my triggers. Of course I know a few, the major, reoccurring ones for me, which include stress, lack of sleep, and dehydration. But there have been countless days where none of those factors are at play and a throbbing sensation begins to develop anyway, unprovoked. It is impossible to pinpoint, and I refuse to give this disorder any more time than it already takes. I have come to terms with not understanding. This simple explanation has been enough for me: my brain has oversensitive nerves that react to a variety of circumstances by triggering pain signals. I’m simply susceptible.
As terrible as mine are, I’m aware that for some people, migraines are so much worse. I’m lucky to be able to write about it.
The headaches began on a Tuesday in my twenties. I was living in New York, working full-time and going to graduate school part-time, when they started. Every other Tuesday - my only day off from my demanding schedule - I’d wake up with a headache. Clockwork. I was in the most stressful time period of my life and assumed they would eventually stop. They didn’t. Cancelling plans, suffering through days at work became a kind of routine. Before I knew it, I had been dealing with episodic headaches for a decade without medication. At the point I finally went to see a neurologist, I had an extremely unpredictable schedule in the news industry.
The neurologist told me I should get on a preventative medication, one that prevents headaches from occurring in the first place. When you’re first diagnosed, insurance requires you to try one of three medicines to start. All three options are prescribed off-label for migraines, meaning that they are meant to treat something else primarily but also alleviate headaches in some people. The first option was a beta blocker, used for lowering blood pressure. The second was an antidepressant. The third was an anti-seizure medication that caused weight gain and slurred speech. I didn’t like any of the options. I am sure no one does, since they’re simply terrible options when you’re just trying to treat a headache. I resisted the prescription, and I’ll never forget what the doctor said. “I’m not trying to scare you,” she began, and told me that my brain’s nerves could become hyperactive and get trapped in a headache cycle that could not be stopped, resulting in chronic migraine. She used the word “disability” and said “it could get to the point where you won’t be able to work.”
She did scare me. I filled the beta blocker prescription but I never took it. I never went back to that doctor, either. I made a plan to try to treat my headaches naturally to start. If it didn’t work, I could always go back to medicine.
There’s a list of things that the American Migraine Foundation recognizes as treatment options for headaches and I’ve done a lot of them, and more. Acupuncture was probably the most successful for me. It reduced the intensity of my headaches, but not the frequency. I also tried physical therapy for neck tension. Monthly massages. Chinese herbs. I did ninety (scary) minutes of floating in a sensory deprivation tank. I found a therapist for the first time. I’ve done LED light therapy in a sauna (green light supposedly helps migraine sufferers). I worked yoga and meditation into my routine.
I learned a few things but am by no means cured. I believe, speaking for myself, migraines are my trauma response, developed during an extremely stressful time of life, as a way to protect me by forcing me to slow down and take a break and figure out ways to regulate. I often felt throughout my life that my body was rejecting my lifestyle. Somewhere deep inside me craved routine, even though my adult life, due to my career choice (which I love), has never really had that.
Routine is so key to headaches. Studies say that headaches are linked to circadian rhythm. A lot of people develop headaches at the same time of day, or like me at first, the same day of the week. They also reported more or worse migraines between April and October.
The thing I identified with the most in my search for answers came from Dr. Adam Lowenstein, a migraine surgeon who has a podcast called Headache360. In one of his episodes, he said a simple statement that migraines are overall “triggered by change.” It’s a simple way to put the thousands of triggers, all of which have that overarching theme in common: change. The body sometimes doesn’t like change. Neither do people. It resonated with me and what I felt like my body has been trying to tell me all these years.
This weekend, I could barely move. Migraine attacks don’t strike me like that often these days and it took me by surprise. I didn’t look out a window for over 48 hours. I tried not to waste time thinking about why it was triggered and focused on what it was trying to tell me. To pay attention to myself. To take a break. Slow down.
I didn’t feel better until this morning. We took a drive to church on a perfect, cloudless, sunny day. Nothing will make you appreciate the days you get until you know what it’s like to lose them.
It’s getting late as I write this and I worry that I’ve already interrupted my sleep routine. I don’t know if I’ll wake up with a headache. I never do.
But I can’t help but think how my headaches relate to what I’m trying to do here with Lost Corners. This newsletter is an effort to get people to slow down and pay attention to what we’re losing.
Maybe, as painful as they are, my headaches are part of my story.