My headache is a living thing.

It moves, squeezes, builds, dances, and lurks. It follows its own routine. It’s predictable and unpredictable. I wake up with it every morning and go to sleep with it every night. It defines my everyday, but I try not to let it define my whole life.

I’ve had a headache everyday for two and a half years. At first, we didn’t know it was a headache. It was a collection of symptoms I had never experienced before. An enormous weight pressing on the top of my head? Squeezing at my temples? Muscle spasm on one side of my face? Not to mention the ringing in my ears and uncontrollable blinking. We guessed it had to be something neurological.

Like most people, I thought of a headache as one thing: a dull ache in the center of your forehead that you get when you’re sick or dehydrated. I didn’t think the symptoms I was experiencing were headache, even when my doctors suggested it might be the case. But when we had ruled everything else out with an MRI, neurological testing, and many visits to specialists, I was left with this: you have a headache.

Technically, it’s this: new daily persistent headache with chronic migraine and post-concussive features, which is a fancy way of saying I have a headache all day everyday that started after a viral infection (in this case COVID) and has some features of migraine and some features of concussion. My headache doctor says these are incredibly hard to treat, which I can vouch for: in two years, I’ve tried seven headache meds and my headache hasn’t gotten appreciably better.

A headache can be a lot of things: pain, pressure, squeezing, spasm. It can also do a lot of things: make your eyes twitch, your ears ring, your jaw ache, your vision blur, and your stomach queasy. It’s difficult if not impossible to separate my headache symptoms from my long COVID symptoms, and since COVID caused the headache in the first place, it’s a fruitless exercise.

My headache and associated symptoms are the reason I can’t yet return to work. To manage the pain, I have to rest every two hours, as that is the only intervention that reliably works. Long COVID patients are known to have symptoms similar to a concussion, which is why I get “brain tired” after socializing and can’t do much screen time. It’s the aspect of my health that’s the most uncertain. If it’s like a brain injury, how long will it take to heal? Will it ever?

As of yet, there’s no treatment for long COVID, just for the symptoms, and so far, we have yet to move the needle on my headache. What has been helpful is getting a comprehensive diagnosis. Having a constellation of random symptoms is scary; having a named condition that explains most or all of these symptoms is a relief, even if it doesn’t make them better. I can’t tell you what it meant to get this after two years, a validation of everything I’d been through and a road map for the future.

Managing my headache is a sometimes grueling task, but it’s mine and I’ve learned how to deal with it. I don’t think headache is more difficult than any other kind of chronic pain, but there is a uniqueness to it being in your head, where you see and hear and think and liaise with the outer world. Sometimes my headache feels like a barrier between me and the rest of the world, which stops me from interacting how I’d like. But it helps that the people around me understand it and support me through it.

The next time someone says they have a headache or migraine, know that it could mean a variety of sensations, intensities, and symptoms, all of which could affect their functioning significantly. I didn’t know what headache could mean until I experienced it. And if you’re dealing with these symptoms, don’t give up. Keep trying and keep going to doctors. Somewhere out there is a name and hopefully treatments that can help you. I’ll link to CT’s headache clinic in the comments.