Tag Archives: headache

Why Purple Hair is Necessary

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Photo on 2-27-17 at 5.27 PM

Purple hair and red lipstick. BAM.

Last week I dyed my hair purple.

This would be a big change for a lot of people, but it was especially big for me.

I’ve been a commercial model and actress in New York for seven years. And I’ve been pretty successful at it. You won’t recognize me on the street, but I’ve landed modeling jobs worth many thousands of dollars. I’ve worked with a number of household-name brands. My friends periodically text me pictures of my ads that they see on Facebook and in other places.

Dyeing my hair purple basically torpedoed that. In fact, my agent emailed me fairly late the night before my hair appointment to tell me a big fashion brand wanted me to model their shoes. (Shoe modeling is a pretty huge market for petite models, which is one of my categories). I turned the job down so I could dye my hair.

It was an agonizing decision, but walking to the hair salon, I felt happy and weightless and full of light. I haven’t felt that way in a long time.

I called my mom after the appointment, raving about my hair. My mom was happy and supportive—but she also said she didn’t see why all this was necessary. I get why people would ask that. Purple hair is expensive, it’s a lot of work to maintain, it’s completely impractical—and my mom is an extremely practical person. My decision might seem incomprehensible, even self-destructive, to a lot of people.

This post is an attempt to explain.

I’ve been building up my professional acting career since I graduated from college—about sixteen years ago. First I moved to Philadelphia, and I occasionally booked work, but things didn’t really take off until I moved to New York. For about three years, work was very slow—if it happened at all. Then I got new headshots and got better about branding and suddenly I was getting a lot of auditions. And every so often I booked.

I loved the work. The down side was that I wasn’t doing plays and fun Indie movies like I originally envisioned. I was doing commercials. Not as creatively fulfilling, but still a lot of fun—and these paid. Instead of letting my artistic drive lead my acting career, I followed the money. In a lot of ways, I’m my mom’s daughter—practical to the core.

The audition process could be grueling, though. In a busy month I might go to six or more auditions in a week, sometimes three or more a day—spending all day running around the city. I would book maybe once every few months. And the auditions would often come in short-notice, making my life and schedule unpredictable.

I also had to maintain a certain look. I paid thousands of dollars for professional headshots, modeling shots for a portfolio, and a video reel. My hair had to look exactly the same in all of these, and match precisely what was on my head. If I wanted to change my hair, I had to change all my marketing materials—a huge investment, plus a rethink in terms of what acting and modeling jobs I was most competitive for, and an overhaul of my entire branding strategy.

So I had the same hair—a marketable brown, feathery and chin-length—for seven or eight years. It represented a compromise: I could style it bland enough to appeal to mainstream brands, but also edgy enough to feel like me when I wasn’t auditioning.

I kept this up for a number of years. And then last August I came down with a single, persistent, debilitating headache—and neck pain—that lasted for about eight months. I kept the grueling audition schedule up as long as I could, but eventually I had to scale back a lot. And coming out of it, hermiting in the midst of New York’s punishing winter months, I completely fell in love with a book I’m writing.

Coming out of the headache, I knew two things for sure: first, I wanted to write this book. And second, I never wanted to go to another audition as long as I lived.

An audition is an exercise in trying to gain another’s approval. You go in hoping you’ll be the chosen one. The one picked, out of all the other talented people, as the most worthy. I was deeply, deeply sick and tired of trying so hard to get picked. I was done.

This feeling didn’t occur to me right away. It grew, over the months I spent recovering from the headache and falling deeper into my story. I’ve always been a writer as much as an actress. I always knew I’d give up acting to focus on writing someday—and that I’d know when I was ready. I was starting to know, and my hair became a representation of that. I was tired of keeping it a certain way for other people. I wanted my hair to be for me.

I don’t think it’s a coincidence that the hairstyle I was most attracted to was as far from commercially marketable as I could get. Long purple unicorn hair. Hair that looks nothing like the people I usually played in ads: up-and-coming businesswomen and crunchy yoga enthusiasts and suburban moms, or at least a big corporate brand’s idea of those.

I let the idea sit in my head for a long time, to see if I’d stop wanting it. But I didn’t. I pinned pictures of people with gorgeous ombre purple hair. Rich violets and lavenders. Silvery highlights. I wanted all of it, and I didn’t care how much it cost. I got obsessed.

The day I dyed my hair purple, I felt like I always did on the last day of school or the day I quit a job. Like I’ve been carrying a weight around my ankle for a really long time, and suddenly the line’s been cut and I’m free. It feels right. It feels like a declaration to the world.

My hair is not for a market or an agent or a panel of directors and producers whose approval I’m auditioning for. It is for me. I’m a writer—a romance and fantasy novelist and a poet and a copywriter—and I am both deeply practical and wildly impractical, often in the same sentence. I am a human exercise in contradictions with bright purple hair, and I am exactly where and who I want to be. There is nothing about this I regret.

My Relationship With Running

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Finishline

Me after running my first marathon.

My relationship with running used to revolve around my relationships with men.

When I was in my early 20s, I had a boyfriend who wanted me to run with him. I was not a runner. I had sports I loved—skiing and horseback riding, hiking and swimming—but I wasn’t into team sports or anything really physically grueling. Or maybe the sports I loved were physically grueling, but I didn’t see them that way because I loved them. But running just felt like pure misery, and I had no interest in making myself miserable.

He didn’t just want me to run with him–he wanted me to be the one pushing him. I thought he wanted to be dating someone much more athletic than I was at the time–maybe someone who was the top scorer in field hockey and the fastest freestyler on the swim team and ruled at gym volleyball. None of those things were me. I don’t hate people who were good at team sports, of course, but at the time I hated the person I thought he wanted me to be, because I felt so much pressure to be that.   And when we went running I hated every step.

Later, I had a different boyfriend. We’d been dating a while when he suggested going on a run together. At the time I’d been going to the gym for about a year, taking yoga and pilates and spin and martial arts, trying to settle on a sport that would sustain me. I wanted to be more active. I wanted to keep my jean size. I told him I’d run with him, but not to pressure me—I’d probably be slow, and I didn’t like to be pushed. I said he should just go ahead of me and we’d meet up at the end.

It was beautiful, that run. We were on a beach, and the sky and the sea were just endless. I turned on my music and started running and breathing in time with the ocean waves and just lost myself. By the time I looked up—miles later—I’d left him far behind.

I left that boyfriend behind for real a few years later, but I kept running. In the several years since I started, I’ve run two half-marathons, one marathon, and countless 5K’s. Running is my moving meditation. It’s the place where I feel most powerful and most at peace.  I love the toned, sculpted legs it gives me and the way I feel like I’m on springs just walking down the street. I love how my endurance makes other sports almost effortless—like rock climbing or horseback riding. I never get tired.

Last year, though, I got a headache. It lasted for four months continuously, and later became debilitating neck pain. It’s too much to get into here, but you can find the start of that series here. It was hell. I don’t know exactly what caused it still, but as I recover, it becomes more and more clear to me that running has something to do with it. These days, when my neck hurts, it’s usually because I went running the day before.

I know what I have to do. Stop running. Not forever—but for longer than I want to. I need to let my neck heal, do a lot of yoga, and build up my strength. I’m almost all the way better but still delicate, and yoga is what brought me through that particular health crisis. I know it’s what my body needs.

But letting go of running is so hard. While I was visiting my parents in Gettysburg, I had the most beautiful run. I went down a country road, discovered an old pre-Civil War graveyard, and daydreamed about novels I have in the works. I went past fields full of cows and old stone farmhouses and roads lined with daylilies. I wanted to go for hours.

I don’t want to break up with running. Stopping for a length of time brings up all my fears. That my endurance will die, and I won’t want to pick it back up again. That I’ll gain weight (yeah, I know it should all be about health, but for me it isn’t). I’ve let go of so many things in the past few months, mainly to heal my neck and devote myself to my novels. This was the one thing I wanted to hang onto.

But the stakes to this are high. The headache absolutely ruined my life. I would do anything to keep that from happening to me again. Now my body is asking me to give up running, and I hate it. But I have to do it.

This week, all I’ve done is yoga. So far so good on the neck. I miss running right down to my bones. But last night I took a two-hour walk to the Williamsburg Bridge and back. I listened to my running music and daydreamed about my plot. I didn’t get the high I get when I run—but for now, it will do.

The Headache That Wouldn’t Go Away: Part VI

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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.

The Headache That Wouldn’t Go Away: Part V

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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.

The Headache That Wouldn’t Go Away: Part IV

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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.

The Headache That Wouldn’t Go Away: Part III

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So after getting back to New York, I resolved to get to the bottom of my headache problem. The big challenge with that was that I didn’t have health insurance. I didn’t even have a regular doctor. While I did some research and tried to find a no-insurance-friendly doctor or clinic that could get me in without a long wait, I looked into alternative treatments.

I had a friend who’d known someone with another intractable problem that a chiropractor had fixed. I read some accounts of chiropractic treatment working for headaches, and figured it was worth a try. I found the person my friend recommended and booked an appointment.

The first treatment went well. According to the chiropractor, my pelvis was misaligned, and that was causing a bunch of cascading issues all the way up my spine, culminating in a neck misalignment that was at the root of my headache. He gave me some adjustments—cracking of various bones, including in my neck—and sent me home. I felt a little better over the next few days, and after the second treatment, I felt great—I had an almost-headache-free stretch of about four days, the longest I’d gone without a bad headache day since this started.

I really should have left well enough alone.

The third time I went, he made an adjustment to what I think was the second cervical vertebra. I felt fine afterwards, went home, and started feeling progressively worse. By that night, I had a screaming headache—the worst I’d had since the Great Claritin Debacle or the All-Night Panic Attack, and maybe worse.

But the headache wasn’t as bad as my neck pain. A bone-deep, intense pain had started just below my skull; I felt dizzy and disoriented; and when I turned my head (which I couldn’t do easily), I felt a disturbing weakness on the right-hand side—like my head might flop over if I turned it too much. My ears hurt too; I felt a sense of fullness behind my ears like you get when you need to pop them. I tried a couple of times and it was too painful. All I could do was lie on my couch and try to keep it together.

That morning, I woke up sleeping on my left side. My left ear was in a lot of pain behind the eardrum—like there was excess fluid in my head and it had all collected on my left side in the night because of gravity. There was even some weird fluid in my ear that had leaked onto the pillow.

Eventually, the pain in my left ear subsided—actually, it more or less just evened out. But that wasn’t the end of the weird ear stuff. One morning a couple of days later, I was in the shower when I felt a sudden head rush. A sort of reddish-purple mist came over my eyes and I couldn’t see, and I started feeling like I was going to faint.

This has happened to me before, usually when I stand too fast after lying down for a while, or if I haven’t eaten in too long and have low blood sugar. It usually goes away in less than a minute. This time, it didn’t. I leaned against the shower wall, waiting for it to subside. Finally I decided I really might pass out, and I didn’t want to be in the shower if that happened.

I made my way (carefully) out of the bathroom, naked and with the shower still running, to try to get to the couch. Before I reached it, I heard a sudden rushing sound in my ears, like running water, but loud. I was now basically blind and deaf. I got to the couch and just sat there, trying to control my breathing so I didn’t have a panic attack as well.

In about ten minutes my vision came back and the rushing sound went away, but for weeks afterward I had a residual ringing in my ears. At this point, I had absolutely had it. I needed a crack team of professionals to descend on me. I needed a Dr. House-style genius dillhole to make wisecracks while figuring me out like a Rubix cube. I needed health insurance.

Luckily, the open enrollment period for insurance had just gotten started. I spent the weekend with a screaming headache, debilitating neck pain, and Chinese food from GrubHub, doing my last three months of taxes so I could have an accurate picture of my income to give to the New York State of Health website.

I was optimistic as I signed up for health insurance for the first time in ten years. I’d found where the headache was hiding. It had been in my neck the whole time. Now that I knew where it was, it should be easy to figure out how to kill it.

I was spectacularly wrong about that. More about just how wrong in the next post.

The Headache That Wouldn’t Go Away: Part II

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Before going on my big trip, I went to Vermont to visit my parents and drop off a few things. I was hoping that maybe changing my surroundings would help. But being in Vermont didn’t seem to make much difference. I tried running the five-mile loop by my parents’ house and could barely finish, the headache was so bad.

My parents were understandably worried about me running a marathon in this state, but I was determined not to let the headache force me to drop out. I’m not a hugely competitive person by nature, but I found I had this totally unexpected, fierce desire not to let the headache get its way. 

In London, I had a full schedule of fun things planned—a concert, sightseeing, dinners out, all the things you do with a visiting friend who feels totally normal. My London friends introduced me to the 500-milligram over-the-counter meds you can get in Europe—that’s prescription-strength in the United States.

I also went to an acupuncturist while in London. The acupuncturist spent about an hour questioning me about my headache. Then he gave me acupuncture, a cupping session, and put hot stones on my spine—which was extremely relaxing.

It was toward the end, as I was lying on my stomach and forming a very favorable opinion about acupuncture—I was having a light headache day anyway—when without warning, the acupuncturist grabbed my head in both hands and twisted it, cracking my neck. He did in both directions. It was fast and violent, but didn’t hurt.

He told me that my headache had something to do with a digestive problem—something else I was a bit skeptical about, but was willing to entertain—and gave me a package of herbs to put in tea. I drank the herbs religiously until they were gone, but they didn’t seem to make a difference.

The Aleve did, though. I found that if I took a lot of Aleve during the day—I’m talking about 1,500-2,000 milligrams per day—I would probably have a light headache the next day. I also found that sometimes putting an ice cube in the corner of my left eye, where the throbbing was often particularly intense, could distract me from the pain. That was a trick I used while doing something like reading or watching a movie, or while falling asleep.

In Scotland, I had a series of light headache days and started feeling optimistic about the run. The night before the marathon, though, was a very bad headache day. I took a lot of Aleve before going to bed and went to sleep pressing an ice cube (wrapped in a sock) into my eye.

The day of the race, the headache was bearable. The race started in the beautiful Scottish Highlands, on a high plateau surrounded by grasslands; I could see Loch Ness somewhere far in the distance. I would have to run to the lake and then all the way from one end to the other to get to Inverness at the northern end. In a perfectly healthy state, this would be the kind of thing I’d get excited about (yeah, I know how  insane that sounds to anyone who isn’t a cardio addict). Now, I was just terrified the headache would get worse during the run.

In my mind, I’d formulated a plan for the marathon: I was not going to drop out before starting. But I would pay attention to how I felt. If I felt sick or unsafe, I would let myself stop at any time. I could drop out at 10k if I wanted. I could drop out at the halfway point. As long as I started, I wouldn’t force myself to finish if the headache was too much.

Finishline

Right after finishing.

But something happened when the start signal went off. I started up my music and started running, and the headache just dissolved. My body felt alive and full of energy, and my mind focused to a dagger-point. My whole world became one foot in front of another, one breath and then another. For weeks I’d been sick with complex worries, but now I had a single, simple problem in front of me: get from Point A to Point B. And my body was dying to run.

I felt great during the race. I finished in just under six hours—I didn’t win any prizes—but I felt fantastic going over the finish line and for days afterward, the headache was barely there. That was better than any medal.

Then I went to Spain. Sometimes I traveled with friends; sometimes I was alone. Originally, my plan for Spain had been to spend my days getting lost in ancient hill towns and nights flirting and dancing and drinking Sangria. The headache put a wet blanket over those plans. I still went sightseeing during the day—sometimes I felt more-or-less fine; other times I had to drag myself. But most nights I spent in, watching Outlander on Amazon or going to bed early. I also missed out on the Spanish wine and Sangria. Not exactly my dream vacation, but the best I could manage.

During that time, I learned more about the headache. I was finding that if I woke up in pain, I’d be in pain all day—nothing I did would make me feel better that day. But if I took a lot of Aleve during a bad headache day, the next day would usually not be that bad. I had to keep taking the Aleve. Eventually I switched to Aspirin, which seemed to be even more effective, especially if I took it in the morning. Before long I was popping 500-milligram Aspirin like candy. I wasn’t even sure how many milligrams I was taking per day, but it was easily in the thousands.

I was also getting little hints about other things that helped. Back in New York, I’d had a massage at one point that left me almost headache-free for a couple of days. The acupuncture may have helped; I’d felt great during the run; I’d bought a mouth guard before I left and that seemed to make a difference too. In other words, physical things seemed to help, making me think there might be some physical (neuromuscular?) source for the pain, rather than a disease or diet deficiency.

At this point I was starting to get stomach aches from the OTC painkillers, and I was stressing out about side effects. But I felt like I was locked into a pattern. Their effectiveness period, for me, was on a 24-hour cycle—meaning that if I was having a good headache day and I didn’t take any meds that day, I could be reasonably sure I’d have a bad headache day the next day.

In theory, these meds are supposed to be taken as needed. In practice, I felt like I had to keep taking them on an ongoing basis in order to raise my chances of having a bearable day the next day. And I say raise my chances for a reason; sometimes the next day was bad no matter what I did. Sometimes I’d try to go off the meds and have good headache days for a couple of days before the pain kicked back in. It was still unpredictable.

But I was also desperately trying new things. I memorized Spanish sentences to take to pharmacists to explain my situation. I was weirdly proud of my success in convincing two separate pharmacists, in Spanish, to sell me antibiotics I should have needed a prescription for. I tried herbal remedies too, all while taking massive amounts of Aleve and Aspirin.

I managed to make it to the last few days in Barcelona. I said goodbye to friends who’d come to spend my birthday with me, and I had a couple of extra days to kill. I’d had to move from a fairly basic AirBnB apartment I was renting to an even more basic (read: cheaper) room in another apartment for my last two nights. I also had to figure out how to get home.

My dad is an airline pilot (retired now), and there’s a big travel perk that goes with that: as family members, we get to fly standby for cheap. Sometimes the standby tickets aren’t much cheaper than what’s available commercially, especially on domestic flights, but internationally you can save a ton of money flying this way.

There’s a drawback, though: you may not get on the plane. It works this way: you show up the day you want to fly, and if there’s a seat available, you go. If there isn’t, you don’t. You can’t always count on seats being available, especially if it’s a high travel season (don’t attempt this during holidays or school breaks). Employees and family members get access to a website that will show you the loads on various flights, the number of flights going out from an airport (and the chances you get) during a day, and your overall chances of flying on the day you want to fly.

So a few nights before flying back, I went online and checked the loads from Barcelona to New York (there isn’t much point in checking far ahead of time, as planes sometimes fill up fast just before the departure day because the airlines publish last-minute fare discounts). All the flights were full, and they looked full all week. But flights from Paris were wide open. To get to the airport on time, though, I’d have to take a night bus from Barcelona to Paris.

Meanwhile, I’d been taking antibiotics, herbal remedies, and massive amounts of OTC painkillers haphazardly, trying to land on something that would kill the headache entirely. The night before the night bus, I took some Aspirin, an antibiotic, and an herbal remedy. Whatever this combination was, it was a terrible idea.

Around midnight, my heart started to race like I’d just run a sprint. I started to sweat. I felt like I couldn’t breathe. I went to the bathroom to try and throw up the medicine; it didn’t work. Nothing I tried worked. All I could do was lie in bed and try to calm myself down. It was a full-blown panic attack, and it lasted all night.

I got about two hours of sleep that night. The next day I felt slightly better, but the panic attack still came back sporadically. I’d planned to spend my last morning in Spain doing a little sight-seeing, maybe some last-minute souvenir shopping, and treating myself to a nice (possibly expensive) lunch before getting on the bus. I didn’t do any of that. All I could do was curl up on my cot and practice square breathing until it was time to go.

For the next day and a half, I barely slept more than an hour at a time. All through the bus ride, and then navigating the Parisian subways to get to the airport at 5 in the morning, and then maneuvering to get on a plane home, I was managing these panic attacks. They didn’t stop until after I got home to New York, collapsed into bed, and slept for a long time.

I woke up feeling determined. Now that I was home, I could finally get to the bottom of this. I was going to figure out where this headache was hiding, and then I was going to stick a knife in its heart.

More about how that worked out in the next post.

The Headache That Wouldn’t Go Away: Part I

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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.