I’ve been putting off writing this post for a long time.
Mainly because I couldn’t stand the idea of writing about it while I was still going through it. I’ve been coming out of it lately, slowly, with setbacks and plateaus and flare-ups periodically. But it does (knock on wood; knock on allll the wood) seem to be going, thank whatever gods there are. So I figured it was time.
This past August, I got a headache. It lasted for four months. Then it became debilitating and mysterious neck pain, which I’m still recovering from.
I remember exactly when I got it. The weeks leading up to it, I’d started feeling inexplicably tired at weird times, and sometimes vaguely dizzy and lightheaded. I didn’t think much of it; I’d been going through a lot of personal and work-related stress, and I thought I was just run-down.
But things had started looking up, too. I’d started seeing someone new, for instance. On one beautiful early-August day, I was sitting with him in the backyard of my local coffee shop. He bought me a mimosa. I took a sip. And suddenly: headache.
I call it that, but it doesn’t really describe what it felt like. It felt like a punch in the face. Sudden deep, aching pain behind my nose and eyes, throbbing and demanding all my attention.
The pain lasted all day. I was concerned, but I’ve always been able to sleep things off. In the days and weeks that followed, I realized that there was no sleeping this off.
I had no health insurance. I signed up for Pager, an app that lets you schedule a housecall for a relatively low price. The doctor I called gave me a quick exam and said he thought it sounded like a sinus infection (even though I wasn’t stuffed up). He prescribed me some antibiotics. I took them for the allotted week, and they didn’t make a dent in the pain.
I called the doctor again. He sounded concerned, and told me he could get me in to see one of the top neurologists in the city, a friend of his, for free. On the day of my appointment, the neurologist gave me what I’ve come to think of as a drunk driving test—holding up my hands, testing their strength. He shone a light in my eyes, pressed hard into my face at various trigger points.
“Does this hurt?” he asked, digging into the side of my jaw with a finger. “Does this?”
It all hurt. Not because it was especially tender in those spots, but because he was pressing hard.
He palpitated my shoulders. “You’re really tight here,” he said. “I think you have TMJ.”
I was skeptical of that. If I had TMJ, why would it suddenly come on so strongly now? Also, I’d never had a dentist tell me I was grinding my teeth. Still, he was the doctor and I figured he must be right, somehow. He prescribed me Aleve—one 24-hour pill three times a day—and suggested I get a mouth guard to sleep in.
Then he charged me $100.
This would be just one in a series of misdiagnoses—along with puzzled looks and noncommittal shrugs—that I’d get from doctors in the next few months. But I was still at the beginning of this journey, and I trusted him. So I took the Aleve. It helped a little bit, sometimes. But nothing really helped in any permanent way.
In the coming weeks I tried a lot of different things, with increased amounts of panic. Aleve, aspirin, ibuprofen. Tea tree oil and oil of oregano and herbal stress remedies and meditation. Medications for allergies and infections. The TMJ diagnosis didn’t feel right, and neither did an infection or a sudden allergy, really, but I didn’t have much else to go on.
In the weeks of August and September, I noticed some things. The headache moved around; sometimes it was in the front of my face like a sinus infection; other times it circled the top of my head like a tight band, or sat right on top of it like a heavy rock. It would also sometimes move to the back of my neck.
I could talk about nothing else. My friends all offered suggestions. Vitamin deficiencies. Weird infections that were resistant to the usual antibiotics. I tried changing my diet; I tried drinking lots of Pedialyte and Gatorade for the electrolytes (I’d been training for a marathon, and I was fighting to keep up with my training schedule despite the headaches). Some remedies seemed to help for a few days.
But it never went away entirely–and it always got bad again. To the extent that I started describing it not as headaches, plural, but as a single headache. It was always there. Some days it was faint, but I could still feel it. Other days it was so bad I could barely get off my couch.
I spent a lot of time on Google. Nothing online seemed to line up with my symptoms. Still, I tried every home remedy someone else enthusiastically endorsed. This rarely helped, and once it went very, very badly.
I’d started using a Neti pot, on the theory that this was some kind of weird sinus infection (although I wasn’t having any other infection symptoms aside from pain). If you’re not sure what a Neti pot is—it’s basically a little pot with a narrow spout that you use to pour salt water into your sinuses to irrigate them. Some people swear by them. I found it to be marginally helpful, sometimes for a half hour or so, if the pain was in the front of my face. It’s also unpleasant and gross. Seriously, do not let anyone see you use a Neti pot if you want them to stay attracted to you.
On some discussion board, I read about a woman who put a few drops of tea tree oil in her Neti pot—and it cleared up her pain. She’d had horrible facial pain for weeks, and after trying this once, she’d woken up pain-free. I thought, I want to wake up pain-free. In that moment, I’d never wanted anything else so hard.
So I went out and bought some tea tree oil. I put a few drops in my Neti pot that night. Then I poured the water into my nose.
I’d also taken some 24-hour Claritin that day, on the off chance that this was an allergic reaction (the guy I was seeing insisted that it was). The tea tree oil did not get along with the Claritin. Suddenly I was feeling jittery and anxious—my heart was racing; I couldn’t sit still; my breath was coming in gasps. The headache multiplied. I called the guy I was seeing and he ran home from a night out with his friends to hang out with me. That whole night, he kept me company through my panic.
It took me two days to recover from that—by which I mean, recover to the point where the headache was at its normal terrible intensity, instead of its terrible-times-four intensity.
Through all this, I was still training for the marathon. Sometimes running made me feel better; sometimes it made me feel worse. But I’d been training for months and I was not giving up. I gave up other things, though. Coffee and alcohol made it worse, so I stopped drinking both. I severely curtailed my social life. I stopped working on creative projects. It was basically all I could do to keep my day job afloat.
The marathon—my first one—was the Loch Ness Marathon in Scotland. My plan had been to spend a week with friends in London, then go to Scotland with them (we were running the marathon together). From there, I was planning to fly to Spain for four weeks. I was going to go to Seville, the Andalusian hills, Madrid, and Barcelona, meeting friends along the way and spending my birthday in Barcelona.
When I first got the headache, I thought for sure it would resolve by the trip. But as the days passed and I kept waking up with it, that seemed more and more unlikely.
Headaches seem like a minor problem. Almost everyone has had a headache at some point. Before this, they were usually a result of my bad choices: not getting enough sleep, drinking too much (alcohol), not drinking enough (water). I knew, intellectually, but didn’t really understand that headaches can be completely debilitating. And even in the life-wrecking level of severity, many people—including health care professionals—don’t treat them seriously.
There’s a special kind of horror in having some kind of health concern that should go away—that always went away before—that you keep waking up with. I remember my mood getting blacker and blacker every time I woke up in pain and thought, great. This is still happening.
I kept waking up with that thought as the weeks passed and my Spain trip got closer. I was trying not to panic—the headaches could be a result of stress, maybe. But I reached a point where I had to make a decision: do I cancel the trip and try to fix the headaches, or do I go to Spain and hope they go on their own?
I chose to go to Spain. More about that in the next post.