When last I left off, I’d had two MRI’s of my head and neck—MRI’s it took a lot to get, what with the cancelled insurance and the order for the wrong body part—and everything came out normal. I was still going to physical therapy; that seemed to help, a little bit. I also got acupuncture a few times. That helped periodically; the first time I had it done, I was pain-free for a few glorious hours. It always came back, though.

Finally I ordered a new mattress, new pillows, and a new desk chair. I’ve had a lot of people ask me what I ordered, so here’s the list:

Pillow

Pillow

Pillow (this is the one I use the most; I even travel with it)

Pillow (this is the cervical pillow I used when things were really bad, with mixed results)

Mattress

Desk chair (I got the head rest and shelled out for the extra back support).

So yeah. I spent a lot of money. But you know what? It was totally worth it. Because I finally started feeling better.

I had a string of really good neck days, then some setbacks that weren’t as bad as the setbacks before; then more really good neck days. After a while I stopped thinking about “good” and “bad” neck days. I just had…days. Which was all I ever wanted—a return to normal.

It took me until about the end of February to really feel “normal,” but I’m not completely back to how I was pre-headache in August. In March, I visited some friends out of town and forgot my water pillow; my neck definitely felt it. I still do an hour of yoga on days when I wake up feeling stiff and out-of-sorts in the neck, which happens sometimes. I’ve also been having stomach issues, which I think might be related to the insane amount of NSAIDs I was taking at one point; those really mess with your stomach. And, most worrying of all, I still don’t know what happened to me.

I do have some theories. One thing that’s occurred to me is how much I was running—a lot—and how little I was doing other things, like yoga and pilates, to strengthen the rest of my body (like, zero). I was also working really hard at the time, sitting in my (totally not ergonomic) desk chair from morning til ridiculously late at night. I was pushing myself really hard.

My cousin who is an Eastern medicine practitioner gave me a diagnosis that involved stagnated blood, possibly due to expending too much energy and eating too little or not eating the right things (hopefully I didn’t get that summary wrong, Cousin Tobey!). That sounds pretty right on, especially since I did notice that changing my diet (i.e. just eating more in general, and healthier things) did make me feel better.

And here’s the part where I attempt to diagnose myself. Of course, I’m not a medical professional so anything I say should be taken with plenty of salt. I welcome any medical professionals who want to tell me I’m wrong and offer a different theory—please do!

All that said, here goes. I suspect that poor posture for long periods of time, plus poor posture while running and a lack of strength in other areas of my body, caused a pinched or irritated nerve in the top vertebrae in my neck, around C1 or C2.

I’ve done some reading up on pinched nerves; from what I’ve read, pinched nerves in the lower cervical vertebrae are fairly common. Those show up as weakness and tingling in the hands (I did have tingling in my hands sometimes, but not very strongly or often).

That’s why I got the “drunk driving” neurology test a lot, when doctors would ask me to hold up my hands and test their strength. If I’d had a pinched nerve in the lower cervical vertebrae, that would have showed up as weakness in the hands.

But I wasn’t having those symptoms primarily. I was having neck, head, and facial pain. (Apparently “facial pain” is the word doctors expect to hear when you have a headache in the face). And from what I read, that’s associated with nerve issues in the upper cervical spine—the C1 and C2, where the chiropractor adjusted me.

Here’s an article that lists a lot of the symptoms I had (vertigo, tinnitus, dizziness, facial pain, and headaches) that occur with nerve irritation because of problems with the ligaments in the upper cervical spine. And here’s a page at a spinal clinic that mentions headaches that happen with nerve root irritation at the C1 and C2 cervical vertebrae.

There’s also this thing called “Suicide Disease” that sounds, frighteningly, somewhat like what I had. Also caused by a nerve irritation issue.

But apparently pinching or irritation to the nerves at the higher neck vertebrae is pretty rare, because not one doctor mentioned it as a possibility. They only tested to see if my lower cervical vertebrae had nerve issues. When they found they didn’t, most people were not interested in investigating further.

One thing this experience left me with was a distinct lack of faith in the medical profession, and the medical system as a whole. I want to preface this by saying that I have friends who are doctors, nurses, and other healthcare practitioners, and of course I know there are plenty of people out there who do a really great job. I just wasn’t encountering many of those people in this crappy journey.

I went to a lot of doctor’s appointments while I was going through this. I saw a spine surgeon, several neurologists, a few general care practitioners, the chiropractor, a craniosacral therapist, a pain management specialist, and others.

Frequently, what I encountered was a distinct lack of curiosity about what was going on with me. Many people tested me for one thing—the neurology drunk driving test, the CAT scan I got initially—and when they didn’t see evidence of the first, really obvious issue they were looking for, they didn’t seem to be interested in investigating further. I was pronounced “fine,” and sometimes given a painkiller prescription. Sometimes I didn’t even get that; a lot of people just suggested Motrin or Aleve.

I rarely got a chance to explain why I was reluctant to take meds—the scary reactions my body had randomly had to things I thought were innocuous. Few people took the time to explain to me the side effects of various medications. I was left with the impression that the people prescribing me these meds had zero idea what was going on in my body, didn’t care about the weird and atypical ways it might react (because it had done that before), and it was basically up to me to go through an adverse reaction before the possibility would get addressed.

A friend of mine once told me that medical schools train students to look for the horse. That is, if some ailment “looks like a horse, sounds like a horse, and walks like a horse,” it’s a horse. Go for the most obvious diagnosis. Don’t go looking for zebras—that wastes everyone’s time.

The thing was, I was a zebra.

There were also the wrong and careless diagnoses—like the TMJ and sinusitis diagnoses I got when I first got the headache. I wasn’t stuffed up at all and there were a lot of symptoms of sinusitis I didn’t have—and with the TMJ, I told the doctor I’d never had a dentist mention I ground my teeth. Both doctors didn’t take the trouble to look further than the first, most obvious (wrong) diagnosis.

Getting people to even believe there was anything wrong with me was an uphill battle. My issue had few symptoms that people could actually see. That said, there were bright spots. There was the acupuncturist who took away my pain for a few hours at a time and suggested cervical radiculopathy (a pinched nerve in the neck). There was my physical therapist, who noticed weird weaknesses in my neck and spine and gave me exercises that helped. And my pain management specialist, who took a lot of time to talk to me and discuss the side effects of various medication options (and who was hilarious).

There was the second chiropractor I saw, who ran a pain clinic a few blocks from my house. I never wound up having him treat me (because now I’m terrified of chiropractors). But he did listen to me, remember my problems and talk me out of some of the treatments his clinic offered that wouldn’t have been appropriate (I would wander in there periodically at my wit’s end from the pain, because they were so close).

As for the first chiropractor—I think if a nerve irritation was causing the headaches, the adjustment he made to the cervical spine probably shifted things around in my neck and changed the pressure on that nerve. It hurt my neck, but it also cured the headaches—eventually. If a few months of neck pain is the price I had to pay to get rid of an ongoing headache, it was worth it.

I’m sure there are good and bad chiropractors, like with any job. I’m not intending to smear the entire profession. But personally, I wouldn’t go back to a chiropractor. And I’ve since read some scary things about the dangers of having a chiropractor adjust your neck. This research is controversial, but my feeling is, eff controversy. This is my life, and a stroke would ruin it irrevocably. I’m not taking the chance.

The absolute worst part of this, however, was dealing with the healthcare system as a whole. I thought that getting health insurance meant I’d get to see a doctor, and I was catastrophically wrong. With all the missteps in my care, the length of time it took to get appointments, and the difficulties with my health insurance, I definitely had the thought multiple times that the health care system actively wanted me not to get well. It wasn’t here for me, and if I wanted anything from it, I had to be very persistent.

I now have the worry that, if I have a health problem again, unless it’s extremely obvious what it is, I won’t be believed–and will have to fight hard to get the care I need. Even with insurance.

I’m also left with a profound respect for the people I know who get migraines and other chronic pain issues, particularly headaches. I was very, very lucky. I just dipped my toe into chronic pain, and for about seven months, it completely upended my life. I’m well aware that a lot of people live there all the time. Some of these people are my friends and family members (maybe you, reading this right now); people who have friends and families and jobs and lives that they live every day. It impresses me so much how people with chronic pain can function on a daily basis, and can continue to have hope.

While I was in Vermont for Thanksgiving, I lined up a series of appointments for the week after. This time I was lucky; I managed to get an MRI appointment for the day after my return. I also booked an appointment with a pain management specialist and a spine doctor a friend recommended.

In Vermont, I had good days and bad days, but the headache didn’t come back. I went five days without a headache, then seven, then realized it had been ten days—and I could have cried with relief. When I woke up in the mornings, my head was fine. And I was realizing how different I’d felt on my most mild headache days—the days when I could feel it, but not enough to really notice it all the time—compared to how really fine felt. This time, I felt really fine.

The neck wasn’t fine, though. I still had the throbbing bone-deep ache under my skull, along with dizziness and periodic panic attacks. I was also becoming very picky about how I slept. At my parents’ house, on my childhood bed, I arranged my pillows to give my head a little nest so it could stay completely immobile during the night. I had to sleep on my back; waking up on my side or (God forbid) my stomach would mean a terrible neck day. I was also taking pain meds and about 1,000 milligrams of Naproxen per day. If I tried to wean off the Naproxen, the neck pain would get a lot worse.

The day I got back, I went to the pharmacy near my house to refill a prescription. I gave the pharmacist my benefit card and she typed it into her system and frowned.

“This says you’re not active,” she said. I explained that that couldn’t possibly be the case. She shook her head. “It says you don’t qualify for this plan,” she said.

Didn’t qualify? That was impossible. I’d done the taxes. I’d given the website my info. I had the damn card.

I called the insurance company in a panic. My MRI appointment was tomorrow; I was this close to getting real answers. If I couldn’t go tomorrow, who knew how long I’d have to wait?

But the insurance company was closed. My appointment was first thing in the morning; I woke up early to get on the phone, hoping to straighten everything out in time.

Needless to say, that’s not how it worked out. I spent an entire day on the phone, getting passed from one department to another and waiting on hold for unbearably long periods of time before someone figured out what had happened: my account had been deactivated by mistake. They could fix the mistake, but it would take some time. The person on the other end didn’t know how much time; it could be tomorrow, or it could be next week, or it could be in two weeks. In the meantime, I wouldn’t have coverage.

This was a disaster. I had to cancel all the appointments I’d set up, including the MRI. Also, about a month later, I got a $200 bill from my phone company for going over my plan while straightening the insurance issue out.

My neck was particularly bad over the next few days. In the midst of all this, I finally broke up with the guy I’d been seeing—mainly because I just was not in a position to deal with anyone’s needs except my own.

When I finally got the coverage back—about ten days after it had gone rogue—I immediately got on the phone to schedule an MRI. Luckily, I managed to get one the next day. When I went to the hospital, I handed my approval sheet to the receptionist. She took a look at it and asked me about my health issue.

“Neck pain,” I told her.

“But this is for your head,” she said.

She explained that the approval was only for an MRI for my head—if I wanted an MRI for my neck, I would have to get another approval. Which could take another few weeks.

That was my second hospital breakdown.

The receptionist was nice enough to call a doctor out to talk to me in the waiting room. He asked me about the health issue, then went off to confer with some other doctors. After a while—during which I spent noisily sniffling into a wad of tissues, trying to get ahold of myself—he came back and told me they might as well do the MRI to my head, because I’d had headache issues before and the head MRI included some of the top vertebrae. Except it had taken so long to figure that out that I had to reschedule my appointment. They fit me in the next week.

When I finally got the MRI results, the test showed nothing wrong.

I went back to my primary care doctor and explained the situation. I needed an MRI for my neck. Clearly I’d gotten the test on the wrong body part. “I don’t think they’ll approve it, but we can try,” she said.

In the meantime, I asked for a referral to physical therapy. I managed to get an appointment in a fairly timely fashion. “Yeah, you definitely have a problem,” the physical therapist said after walking me through an exam. “You have a really weak neck and limited range of motion all through your spine.”

He told me he couldn’t diagnose the problem, but he could give me some exercises to strengthen the muscles around my neck and spine—apparently the issue went all the way down, which made sense, because my back had also started hurting lately. I did the exercises religiously; a few of them seemed like adapted yoga moves.

“Bring me the MRI results when you get them,” the physical therapist told me.

Luckily, I was able to set up the appointment for the second MRI just before Christmas. I went almost 45 minutes early; if there were any problems this time, I wanted plenty of time to sort it out. But there weren’t. The appointment went smoothly, and there were no issues with my insurance or my paperwork, for once.

Except when I got the results back, they were the same: nothing wrong.

“That’s great news,” my primary care doctor said. “It means you don’t have something serious.”

I got what she was saying, but having chronic pain that wasn’t showing up on tests was its own kind of hell. One where doctors don’t believe you. One where you have to keep pushing for care. One where a “history of panic attacks” becomes a strike against you, and where people eventually start thinking you’re an addict if you’re on the heavier pain pills (I never went the opioid route, although my pain management doctor offered them). Still, I resolved to go up to Vermont again for Christmas and have as good a time as possible given the neck situation, and save the worrying for later.

In Vermont, again, I had good days and bad days. More good than bad, but I still didn’t feel strong enough to go skiing, which is something I tried to do with my family at least once a year. I still slept on my elaborate pillow construction. I’d bought a cervical pillow at some point, and that helped a little, except when it didn’t. I did my physical therapy exercises every day.

When I got back to New York, I lined up more physical therapy appointments. My physical therapist made some offhand comment about how I didn’t have to do the whole range of exercises if I went to a yoga or Pilates class, and that made me laugh—doing a whole class sounded totally undoable. But slowly, I started getting stronger. By February, I was doing an hour of yoga every day. And I was finally, finally starting to feel better.

But I still had setbacks. I still had plateaus. If I woke up with pain in my neck in the morning, nothing I did during the day would make it go; I had to wait til the next day and cross my fingers.

Finally, one day I had a particularly bad neck day after about five good days—five days when I thought things were finally turning around. I was feeling extremely frustrated. What on earth was wrong—and why wasn’t it getting better?

I remembered something my dad told me about his own back pain, years earlier. He told me he used to have terrible back pain until he and my mom bought a new mattress. After that, the pain had completely stopped.

I thought, what the hell. My current mattress was a thin memory foam pad from Ikea under a $200 spring mattress; I’d bought them both about seven years ago, when I’d first moved to New York. My pillows were old and pretty bad, too. And my computer chair—which I spent a lot of time in every day—was one I’d gotten second-hand in high school from one of my mom’s work friends.

Yeah, maybe it was time for an upgrade.

I dropped a lot of money on a new mattress, three new pillows, and a fancy new desk chair. They all came within the next two weeks. And after that, I finally started getting better for real.

More about that—and what I think actually happened to me—in the next post. Which I swear will be the last one.