It’s the Ninth Anniversary of My Daily Headaches

I can’t take it anymore

A few days ago, I lay in my recliner chair after struggling to walk a lap on my driveway, my eyes squeezed shut in pain. It was like a beetle with a thousand legs had attached itself to my face, sticking its feet in so deep that they zapped into my nerve endings.

Try removing a beetle with a thousand legs.

I can’t take it anymore, I thought as I lay there with my pain-beetle. Every freaking day for nine years, I’ve been in agony from these headaches. I’m over it.

But it doesn’t matter that I’m over it, because the headaches have a hold of me, and my doctors and I can’t do a thing about it.

Around 2008, I started getting severe headaches after exercise. At first, the exercise had to be strenuous — a rowing team time trial, a half marathon, an eleven-mile trail race on a brutally hilly course.

Over the years, the amount of exercise I could tolerate before getting a bad headache gradually decreased. First, I could handle running ten miles. Then seven. Then five. Then three.

On May 31, 2014, I ran on the road in front of my house, keeping to the gravel verge to reduce the pounding. I only made it one-third of a mile before a machine gun began shooting bullets at my head.

The pain was in my face, my forehead, behind my ears, at the base of my skull — an all-over assault. My distress was so great, I hobbled up my driveway and laid in bed the rest of that day and all of the next.

After that, it was like a switch was flipped in my body.

The headaches shifted from only after exercise to all day, all the time, for no discernible reason, reaching the same intensity as they had after my most strenuous rowing time trials and running races from years before.

Just walking from my recliner to the bathroom would trigger a horrible headache. At twenty-eight years old, I went from being an athlete to totally housebound.

“Read this.” The headache specialist plopped a three-ring binder down on my lap as I sat down in her tiny office. “It explains everything.”

Opening the binder, I read, Migraines: An Introduction. As I flipped through the pages, I saw diagrams of the brain, lists of symptoms, and suggested treatments.

Did she automatically show this binder to all of her patients?

“It looks like by over-exercising, you flipped your migraines over from episodic to chronic,” she said matter-of-factly. “You get them all the time now and there’s nothing you can do about it. It’s a lifelong condition.”

Talk about a bedside manner. I left that office crying, blaming myself for having brought on this pain.

As I found out much later, I probably do not have migraines.

My current diagnosis is “new persistent daily headaches,” which is a rare condition in which the headaches suddenly start one day as if a switch has been flipped, like mine did. Their presence is not the patient’s fault.

They also have no cure.

So little money goes into headache research that those of us with the rarer disorders don’t have a lot of options. My neurologist has told me that some people with new persistent daily headaches grow out of them as they age, and others have them all their lives.

All I can do is hope I’m one of the “lucky” ones.

I’ve suffered through hundreds of appointments in search of diagnoses and pain relief that never comes. Neurologists. Physical therapists. Cardiologists. Pulmonologists. General practitioners.

Just yesterday, I went to the ophthalmologist. By the time I had traveled the hour and a half up from my rural town and walked in his door, my headache was so bad I could hardly see straight.

“Your optic nerves are still swollen,” he said. “I’m shocked that they didn’t give you steroid medication for that when you went to the neuro-ophthalmologist two years ago. This condition can cause severe headaches.”

Great.

“If your headaches don’t vastly improve with your new glasses,” he continued, “go back to that doctor and see if he’ll prescribe you that medication.”

As I know from long experience, my headaches aren’t going to “vastly improve” with anything. So it looks like I’m going back to another doctor for another appointment that will be so painful I’ll hardly be able to see.

Since they’re treatable, it would be nice if the swollen optic nerves were the cause of it all, but I’ve had so many doctors tell me that they’ve found a simple solution.

I’ve gotten my hopes up so many times, only to have them crushed when the doctors’ explanations for my pain turned out to be false.

For the last few years, I’ve found a way to stay positive on the anniversaries of me getting daily headaches.

It all started with a giant box of garlic breadsticks from Simple Simon’s, our local pizza restaurant, that my mom brought home for me one May 31.

I stuffed myself to the point of nausea, then, out of guilt, went out for a walk. The evening air was pleasant and the valley verdant as it spread out before me. I made it farther than I thought I could, strolling down the driveway and a short distance down the road.

Every year after, I’ve had my mom get the breadsticks and stick a candle in the middle so my parents could sing “Happy Headache Day” to me. I celebrated surviving and persevering another year.

This year I don’t feel like celebrating. My headache anniversary is hitting me like a punch in the gut. Nine years — almost a decade! — are gone.

I’m falling into a black hole. This morning as my mom drove me to the hospital to get some labs drawn for the millionth time, I had to clutch my stomach the whole way because the date is hitting me so hard.

On top of everything, tomorrow is the twentieth anniversary of my graduating high school.

Even if my class was having a reunion — we aren’t — I wouldn’t go. How humiliating for me, the brilliant student with such a bright future awaiting her, to have lived this empty decade, my talent wasted.

And who knows how long the emptiness will last? Another nine years? The rest of my life? It’s frightening.

I’m sick of fighting, but I have to because I know that tomorrow I’ll wake up with a headache, and the next day, and the next, and the next.

Thank you for reading. Here is another story I wrote for The Narrative Arc:

— Erie Astin