The Headache That Wouldn’t Go Away: Part IV

So at this point in the crappy journey, it was mid-November and I was in continuous pain. I was dizzy a lot, with pressure behind my ears and intense, throbbing pain deep in my neck, just under my skull. The pain would move from right to left and sometimes to the center, and the disturbing weakness would fade in and out from day to day. I found that if I leaned against something or had my head supported, the pain would recede to a bearable point; I bought a neck brace on Amazon and wore it all the time.

Another fun thing was that the panic attacks were still happening. They’d started on the way back from Spain because of the meds I’d been taking, and I’d stopped taking those—but the attacks continued. I never got one quite that intense again, but every so often I’d be sitting on my sofa or trying to sleep or work, and suddenly my heart would start racing and my breath coming fast and I’d feel dizzy and disoriented and like I might lose consciousness. I learned to close my eyes and breathe slowly. I learned to count to ten. Lying on my couch with a heating pad on my stomach seemed to help. But they came back several times a week.

I didn’t want to go back to the chiropractor—I was reading some scary things online about the possible links between chiropractic adjustments to the neck and stroke. I didn’t want to keep trying alternative therapies or taking over-the-counter remedies on my own. That had gotten me adverse reactions to seemingly-benign medications and a painful neck injury. I needed certainty.

The good thing was that I’d just gotten health insurance for the first time in ten years. But I was learning firsthand that having health insurance does not necessarily mean having access to care. I started by calling around to try to find a primary care doctor. A lot of the doctors I tried wouldn’t take my new insurance (even though they were on a list of doctors who did) or weren’t taking new patients. Those who did offered me appointments months from now. As much pain as I was in, this was a completely unacceptable wait.

Finally I found a primary care doctor. I went in and explained the situation. She made some “wow, that’s weird” noises and said my headache and neck problem didn’t sound like anything she’d ever heard of, but she’d refer me to a neurologist. I tried calling from the waiting room to make an appointment as soon as possible. Nobody picked up the phone. But the address on the referral sheet was nearby, so I decided to go over and make the appointment in person.

The receptionist at the neurologist’s office took one look at my referral sheet and shook her head. “He doesn’t take headache patients, and he’s not taking new patients now anyway,” she told me. “I could get you an appointment with our other neurologist in February, though.”

That night, I stopped by the CVS near my apartment to pick up a few things. Standing in line, I turned my head slightly to the left and suddenly felt extremely dizzy. I had to get out of line and lean on a display shelf to keep from falling over. After a minute the dizziness subsided, but when I tried turning my head the same way it immediately came back. My mind flashed back to all the frightening stroke information I’d been reading on the Internet and I thought, this is it. If the healthcare system didn’t see any particular urgency in my situation, I would go to the one place that would have to see me immediately.

There’s a hospital about ten blocks from where I live, and I walked to the emergency room. After a few hours—at around midnight—I got a CAT scan. Finally. I was dying for answers. But the doctor told me the CAT scan looked completely normal. “You probably just have a crick in your neck,” he told me, and gave me some Motrin.

“I think I need an MRI,” I told my primary care doctor on the phone a few days later. Even if whatever was going on in my neck didn’t show up in a CAT scan, I figured it had to be big enough that an MRI couldn’t miss it.

“Your insurance probably won’t approve that,” she told me. “I can put in an order for it, but don’t get your hopes up. It’ll take a few weeks for them to send an answer.”

That night was a particularly bad one for pain, and the next day was worse. I was in too much pain to work, or sleep, or exercise. I couldn’t fathom waiting weeks for an MRI or months for an appointment with a neurologist. If I go to the emergency room and ask for a neurologist, will I get to see one? I wondered. I called my local hospital’s emergency room to ask, and—surprisingly—someone picked up. “Probably. We send consulting neurologists down when we need to,” the person on the other end said after I explained my situation. “If you think it’s serious, you should probably come in.”

So I went to the emergency room for the second time that week. This time, after an interminable wait, I explained my situation to a doctor and said I was there to see a neurologist. “Oh, we can’t do that here,” he said. “Neurologists never come down here. That definitely won’t happen.”

He gave me the neurology “drunk driving” test, where he asked me to hold my hands up to test their strength. “You seem fine,” he said. “You probably just slept wrong on your neck.”

That was the point when I started to cry.

At this point I’d been through a lot. But I hadn’t had an actual breakdown—not counting the medication-induced panic attacks—until that point. Most of the time, even those panic attacks felt more physical than emotional. What reduced me to tears wasn’t the pain or the worry. It was the healthcare system. In between noisy sobs, I tried to explain to this man that I had lived in my body for more than three decades, long enough to know what a crick in my neck felt like, and wouldn’t waste my own time or someone else’s going to the emergency room twice in one week over something like that.

At that point—probably just to get me out of the room—he told me about the hospital’s neurology clinic. “They’re holding one tomorrow, but it’s probably booked up,” he said. “The next one is in three weeks. But you can talk to the receptionist about getting an appointment.”

The receptionist told me she couldn’t fit me in the next day; I’d have to wait three weeks. I tried to push for a quicker appointment, maybe with a neurologist outside of the clinic. I was still a mess from my crying jag in the examination room, and I tried to explain about the pain and the headaches and the neck problems and the panic attacks. “Oh, honey,” the receptionist said. “You’re probably just having panic attacks because you have a history of them.”

She was trying to sound sympathetic. But I took in her tone of voice; the way she was looking at me; and it clicked. This woman thought I had a history of panic attacks. I realized how I must look to her, and to most of the healthcare professionals I was seeing—like a neurotic, anxious person who went to the emergency room over nothing.

The moment I admitted I had panic attacks—and the moment tests like the CAT scan started coming back clean—I confirmed that impression and my account of my issues immediately became suspect. Notwithstanding that whatever anxiety I was having was due to the pain I was in and everyone telling me I was in fact fine.

At any rate, I did somehow manage to get an appointment for the next day. That day, I was ushered into another examination room—this time with two internists. They asked me to go through the problem in detail, and asked lots of questions. One of them shone a light into my eyes. “Your pupils are two different sizes,” he said, “which could be a sign of stroke. It might not be anything serious, but we should do some tests, just in case.”

That should have been terrifying, but all I felt was relieved that someone was actually seeing an outward symptom that something was wrong. Finally, I was in a room with two people who actually seemed interested and engaged in getting to the bottom of it. They started talking over what tests they should send me in for, and then one suggested they call a neurologist in to check me over just in case.

The neurologist came in a few minutes later. Without asking me any questions about my issue, he shone a light in my eyes and pronounced me fine. “Her pupils probably just seemed different sizes because of the light,” he said to the internists. “Just give her a prescription for painkillers.”

I tried to explain that I didn’t want painkillers—I’d had enough adverse reactions that I was now kind of medication-shy. What I wanted was to figure out what was wrong and fix it. “Write down that she refused the painkillers, then,” he said to the internists—not to me—and headed out the door.

“But what about the tests?” I asked when he left.

The internists shrugged. “He said you’re fine, so you’re probably fine,” one of them said. “You sure you don’t want that prescription?”

At that point, it was just a few days until I was planning to go out of town to visit my family for Thanksgiving. I was desperate not to be in too much pain while I was up there. I gave up on Western healthcare for the time being and booked several very expensive appointments with a massage therapist, an osteopath, and a craniosacral therapist. Traditional medicine couldn’t even see my problem—so maybe I needed a nontraditional solution after all.

The osteopath told me my “tailbone was jammed” and charged me $325 for a manipulation. The craniosacral therapist told me she wanted to help me have a “new relationship with my pain.” (I thought to myself that what I really wanted was a new relationship with not having any pain.) But I did feel slightly better after both of these appointments, and the massage therapist was pretty fantastic. I think those treatments together did have a cumulative effect; in the days leading up to leaving, I realized that even though the neck pain was still bad, I hadn’t had a headache in several days.

Even better, I got a notice in the mail from my insurance company the day before leaving: they’d approved my request for an MRI.

More about that in the next post.

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