6. Learning to Live With a Never-Ending Concussion Headache

There is so much I've wanted to articulate about the constant ever-shifting pain I feel in my head that starting this blog was inevitable.  I’ve wanted to write about my recovery for a while now, but the right words have always been hard to find.  

It’s not easy to adequately describe the invisible injury that has impacted my life for the last two years, to give justice to something that, until a couple of weeks ago, I struggled with privately. I want to find the right words to effectively articulate the pain surrounding the confines of my brain, pain that has taken on so many different forms and sensations, varying in intensity, location, and depth. 

The One Constant

In all of my concussion’s complexity and variation, there has been one constant since November 2013, an unwanted companion that has never once left my side: my headaches.

Hazy headaches. Pulsating headaches. Exercise-induced headaches. Stop-you-in-your-tracks headaches.  Headaches that feel like barbed wires are tightly and unforgivingly wrapped around my brain.  Headaches that create the sensation of a dagger going straight through the top of my head.  Headaches that cause a never-ending ringing inside my ears that wake me up in the middle of the night.

When I first got hurt, I tried very hard to figure out what the big triggers were for these headaches.  It is typical for certain types of stimuli to produce symptoms in individuals with concussions, including (but not limited to) staring at a computer screen, being in a loud environment or thinking too hard. These three factors alone at Yale were pretty impossible to avoid, even in the depths of Bass Library.

I devoted a lot of time figuring out what bothered me the most, and then I spent even more time trying to avoid those activities as much as any senior in college could.  At that point, I was still holding onto hope for a quick recovery, and why wouldn't I be? The doctors I saw gave me no reason to believe the injury would last any longer than a couple of weeks, so I never considered taking time off from school until it was too late in my last semester.  Instead, I found ways to manage my symptoms enough to survive, all the while patiently holding onto hope.

But for some reason I couldn’t seem to figure out the exact triggers because just about everything seemed to make my symptoms worse.  At some point, though, a trend did became clear: I felt my best when I woke up in the morning and my worst when I went to bed at night, with the intensity of pain depending on how much I had pushed myself during the day.  

Bad days turned into even worse tomorrows; I’d feel the effects of a long Thursday dinner well into Saturday breakfast.  This trend inevitably repeated itself with my headaches a notch higher on the pain scale with each passing day that I pushed through my discomfort. 

Think of it like this:

Me sporting a groutfit and shades with my dog, wilson, during the cognitive rest phase of my recovery. 

Imagine you’ve just experienced a concussion. You’ve tried taking it easy for 3-4 weeks, and finally wake up one day feeling relatively normal. You’re suddenly eager to greet the day, feeling like maybe things are returning back to the way they used to be, so you sit up in bed and evaluate how you feel.  

Then almost instantly, you start to feel some odd sensations lurking around in your head.  But you hold onto hope and convince yourself it isn’t so bad that you’d call it a full on headache - clearly you’ve made some recovery after several weeks of cognitive rest, right?

It feels as if someone has taken their fist and begun lightly pushing against your forehead.  It is really more a discomfort than it is pain and you decide it isn’t enough to keep you in bed.  You feel like if your headache stayed in this exact spot you could conquer the day, not nearly like you used to, but enough to get by. 

So you get up and start your day.

Except pretty soon you’re hit with the unsettling realization that your headache isn’t staying in that “uncomfortable yet tolerable” place.  It's not long before your headache has grown, as it always would, and the constriction – the immense inward pressure – is getting tighter, more powerful, and covering more areas of your head.  And instead of conquering the day now all you can think about is your next chance to lie in bed. 

You struggle through the remainder of the day.  When you finally make it to bed, you try to find hope that things will be different the next day.  But then the cycle starts all over again when you wake up to discover the same pressure penetrating your skull, only it feels deeper that morning than it did the day before. The headache you felt maybe an hour into your day yesterday is now there before you brush your teeth.

A good night’s rest – ten, eleven, even twelve hours of sleep – just wasn’t enough to erase the effects of pushing through your discomfort yesterday. 

So now this day is even harder to get through than the prior one.  And suddenly you know you’re in uncharted territory, realizing that instead of getting better you might be regressing.  You feel an even greater urge to find pockets within the day to rest – to escape to your room and put your head under the covers, attempting to temporarily forget that this new struggle is now becoming a part of your everyday reality. 

Yet, you’re still hopeful that maybe things will be different each next day.  But as days go by, your feigned optimism slowly begins to deteriorate, and you soon forget what life is like without an intensifying, unstoppable headache with constant and unpredictable fury. 

The New Normal

This routine soon became my new normal. 

And because of this I wasn’t as present as I once was.  Friends and family thought I was being distant.  Half of my attention remained on my schoolwork, my conversations with friends or my team’s games, and the other half was now always monitoring my symptoms.  Hoping that the headache will calm down but knowing that it wouldn't, and fervently hunting for an opportune moment to yet again return to the quiet, dark solace of my room.

At Yale's last home game of the season, the seniors' jerseys are displayed at Ingalls rink.  I wasn't healthy enough to play, but I got to put on my gear and jersey one last time.

Before I knew it, my life became one big juggling act.  Trying to get through the day and fulfill the responsibilities of a second semester senior with a thesis to write and a job to secure, all while making sure I got enough rest so as not to rule out the possibility of recovering and returning to the last few months of my collegiate hockey career. 

My life was now about deciphering which class or social outing was worth attending, weighing the pros and cons of pushing through the widespread discomfort going on in my head. 

What could I do when every inch of my body and soul was aching for activity, for movement, for the every day rumble and bumble that is life, while my brain was yearning, no, begging, to lay in a quiet, dark room and never get up? 

I felt so desperately eager to take part in all the activities I enjoyed, but staying in bed usually won out.  Because my head always hurt now and everything I did made my head hurt worse.

And to my greatest disappointment, the one activity, above all others, that made things hurt the most was the activity I cherished above all else: exercise. 

I could spend a lot of time writing about what this has meant for me.  Being someone who didn’t like to go more than a day without working out before I got hurt, I haven’t easily welcomed almost two years of inactivity. 

I went from being an athlete who picked up sports at the young age of four and who relished any opportunity to push her body to its limits, to someone I hardly recognized – a person overwhelmed with anxiety about an increased heart rate for fear of intensifying her ever present headache.  

And while the muscles in my arms and legs ached for movement, for the adrenaline of activity they once so frequently enjoyed, I laid in bed and watched my once toned and muscular body slowly dwindle away. 

Trapped

If I were to sum everything up into one word, it would be “trapped.”  Miserably trapped within my own body, where everything that once gave me so much joy now only gives me pain. 

People look at me and see a normal person because they can’t see the invisible injury that has chipped away at me day after day, month after month. They can’t feel the powerful chains tightly gripping my brain, can’t see the fuzziness by which I now view the world or hear the blaring noise coming from my ears.   

It is this invisibility, the “well at least you look great” phrases of encouragement, the absence of any detectible trauma to the naked eye that drove me to the familiar keys of my computer.  Writing has become a cathartic release of sorts.  Working with words as I lay in bed with the lights off, my laptops screen brightness dimmed has made me feel a little less alone.  A little less helpless.  A little less lost. 

I'll explain what I finally discovered was the big generator of these headaches next week, but in the meantime I hope this post offers a better understanding of what those of us with an invisible injury endure.