All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headacheby Paula Kamen
At the age of twenty-four, Paula Kamen's life changed in an instant. While she was putting in her contacts, the left lens disturbed a constellation of nerves behind her eye. The pain was more piercing than that of any other headache she had ever experienced. More than a decade later, she still has a headache-the exact same headache. From surgery to a battery of Botox injections to a dousing of Lithuanian holy water, from a mountain of pharmaceutical products to aromatherapy and even a vibrating hat, All in My Head chronicles the sometimes frightening, usually absurd, and always ineffective remedies Kamen-like so many others-tried in order to relieve the pain. Beleaguered and frustrated by doctors who, frustrated themselves, periodically declared her pain psychosomatic, she came to understand the plight of the millions who suffer chronic pain in its many forms. Full of self-deprecating humor and razorsharp reporting, All in My Head is the remarkable story of patience, acceptance, and perseverance in the face of terrifying pain.
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All in My Head
An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache
By Paula Kamen Da Capo Lifelong Books
Copyright © 2006 Paula Kamen
All right reserved.
Big Pharma (1991)
* * *
More than a decade ago, at the age of twenty-four, in a single moment, I found myself going from "girl, emerging author" to "girl, interrupted." I was doing something quite mundane at the time, putting in my contact lenses in the bathroom of the downtown Chicago Hyatt Hotel at a journalism conference. Somehow, inserting the left lens set off a chain reaction to ignite a constellation of nerves, which radiated backward from behind the surface of my eye. The pain was deeper and more piercing, and generally more unreasonable, than any other headache I had ever experienced, and I instantly realized I was dealing with an entirely new and different species.
Although this process was instantaneous, the new connections seemed to be made in slow motion, in several discrete consecutive stages, much as when they light up the huge White House Christmas tree on television. You see the bottom level and then the middle and then the top turn on in sequence, one immediately after the other. Click, click, click.
As I later realized, nearly everyone with a chronic health issue has a distinct story of themoment she or he was stricken, although the symptoms had probably been creeping up all the time, often for years and years. A man describes the beginning of his depression as taking place on the first morning he couldn't get out of bed. A woman pinpoints her multiple sclerosis as starting when she reached for change in her purse in line at the grocery store and couldn't feel the coins. Such moments are probably defined by the feeling that we shouldn't be struggling this much to do this simple a thing.
Still, at that moment at the Hyatt Regency, I knew never to underestimate the power of repression and compartmentalization, exalted skills of journalists everywhere. I looked in the mirror, and although the surface of the eye felt like broken glass was lodged in it, I saw no sign of irritation. It wasn't even red. I went back to business and tracked down the appropriate meeting room, whatever it was called, probably one of those hotel-conference-room-type names like the Venice Room, or the Sequoia, or something evoking the majesty of one of the Great Lakes.
I was interested in meeting one of the panelists, a noted writer on urban poverty, who was deeply committed to the issue of poverty in the inner city and, as far as I could tell, was neither married nor homosexual. I sat through the panel without fully comprehending the words and then made the journey up to speak to the man, who was surrounded by admirers. I lacked the stamina to push through the crowd and instead waited for them to leave, one by one. Finally, we were left alone in the room. He looked up at me, confused. "Do you know where the next session is?" he asked. "I don't see it in the program."
"Sorry," I said, shaking my head. I knew that it was up the escalator outside and to the right, and I probably should just walk with him there. But I didn't have the energy. My eye was on fire.
Then he walked away.
I ran to the bathroom, popped out the contacts, and continued to feel the cutting pain at full force. I rushed out of the conference area and into the guts of the adjoining underground Illinois Center complex, concentrating on retracing my steps to find my way back to South Water Street and the Metra train. I staggered through the low-ceilinged maze of narrow, uniform tunnels, whose sides resembled single floors of Chicago's modernist skyscrapers, made of uniform sheets of frosted and then clear glass, bordered by sleek black steel beams. I kept running, trying to find my way out.
A few months before that, in March 1991, I had just come out of the closet, in the literal sense. I had spent that winter writing a book on young women and their views of feminism, under deadline, while hunched over a beady little Apple Macintosh screen in a walk-in closet in Kenosha, Wisconsin. As I had predicted, I had confronted very few, if any, distractions in that small city, where I had just left a job as city reporter and had months of rental time left to go in the apartment behind the Pick 'N Save on Highway 50.
My editor, at a small independent publisher, had wanted the book out as soon as possible, as Time had just done a cover story on this new mysterious generation, Generation X, featuring a multicultural cluster of twenty-somethings staring ahead plaintively into the future. And she had a feeling that further discussion of just what they were thinking about would be in the media soon. So I did what I had always done under pressure: worked like hell and planned to recover later.
One day after finishing my book, I moved out of the writing closet and the apartment. That day was marked by the worst headache of my life, up to that point, a searing yet diffuse sensation in the forehead. I was sure that this was merely the result of withdrawal from Eight O'Clock Bean. And so I clutched my head without panic during the ride back to my parents' split-level house in the Chicago suburbs, where I arrived with a handful of change, what had been left in my Kenosha checking account.
When the caffeine-type headaches continued, I went to a nearby general practitioner. I took his advice to lay off the caffeine altogether, but then a greater variety of pains started taking temporary tours of various durations and intensities in different parts of my head and eyes. I also noticed a trend-which had very gradually emerged over the years and was now accelerating -of both of my eyes becoming more and more sensitive and inhospitable to contact lenses. Over the years, I had had to put the lenses in later and later in the day, waiting until just before the start of the event at which I wanted to look good. The process became still more painful when I got less sleep the night before. This was even the case with the new onionskin-thin high-tech daily-wear ones, which I hadn't bothered to wear at all during my four months' hermitage in the closet. And increasingly, as with that most jolting May episode at the Hyatt, when I put them in, the left lens would trigger a severe day-long pain that shot from the back of my eye toward the core of my head, without ever seeming to stop.
Like many who experience migraines and other types of chronic headaches, I assumed all these things were part of a problem originating in the eye. I was suspicious that it was the result of an accident a few years before when I had been using a phone in my parents' house and felt an electrical shock leap from the receiver to the back of the socket of my left eye. The pain at that time wasn't bad, just a little pinch. I went to see an ophthalmologist, who gave it a good look and said no apparent damage had been done.
I took his advice and stopped wearing contacts for a while, but the pain, as usual, was smarter than I was. By the time I moved into Chicago that summer, right after the Hyatt episode, the headaches started self-generating, without any apparent external trigger. And then, by October of that year, the release date of my book, the pain behind the left eye and in the left temple was constant.
To cope, I greedily shoveled aspirin and Advils down my throat. But usually, the only effect was a hollow gnawing feeling in my stomach. Excedrin worked at first and then suddenly stopped, leaving me wired and sleep-deprived because of its high caffeine content and, as a result, with even more pain. Like many headache sufferers, I had a love-hate affair with caffeine, a blood-vessel-tightening chemical used for more than a century as an ingredient in migraine medications. Caffeine is truly a double-edged remedy: It can both trigger and relieve headaches.
I was also beginning to realize that painkillers of all types-whether over-the-counter or stronger-were effective to use once in a while, but not every damned day. Used constantly, they could wear the body down. And I even later learned that if taken too often, over-the-counter pain medications can worsen the pain, by suppressing natural pain-relieving endorphins and making the nervous system more sensitive to pain. Such overuse can result in "rebound" headaches. (In fact, doctors think that many people who suffer frequent headaches are primarily victims of this rebound effect.)
The next logical step was to call my uncle, whose opinion our family always trusted above all others. A former head of intensive care at Northwestern University Hospital in Chicago, my uncle started his first pain clinic in the 1960s in Gary, his home base. The clinic was his response to the needs of his great diversity of patients, many of whom were facing work-related injuries, the most common being herniated disks. They also included U.S. Steel and Inland Steel workers who had had parts of their arms and hands ripped away in confrontations with large moving rows of raw metal. We knew he was good at seeing the bigger picture of things, such as in campaigning against the rampant pollution of the steel mills, which was aggravating his patients' health problems. He took note of the serious pain and discomfort that many patients were suffering with the rigid plastic breathing tubes that had been planted in their throats and often caused ripping, scarring, and infection. With another doctor, he devised a new type of cuffed tube (formerly known as the Kamen-Wilkinson tube) made of polyurethane foam that expands to fit each patient individually, which is still in use today worldwide. Of course, we were all quite proud.
My 1991 visit to his pain clinic office was my first one to him as a patient. At that time, I remembered my earlier, more lighthearted research trip from sixth grade, when I had had my picture taken with his life-sized plastic skeleton on wheels, a fixture of the place. On the wall had hung a large sledgehammer and a sign, "Other People's Pains Are the Easiest to Bear."
But this trip involved less levity. When I got to his present office in Merrillville, Indiana, he took out a very large needle, which was filled with cortisone and some kind of pain-killing drug. He gave me a nerve block, which was an especially common procedure with his back pain patients. To ease the tension, he pretended to be confused, asking himself, "OK, just give me a minute to remember where this goes." He then swiftly injected it into selected tender points at the base of my skull and on the sides of my head. I felt a crunching as the needle went in and then swirls of numbness filled the nerves encircling my head. That was from the painkiller. That first time, it seemed to work. But only for a day.
I returned a half dozen times more and had less success every time. Each visit, I walked in hopeful and left surprised that my uncle couldn't help me more. Through his long career he had resuscitated countless people from the brink of death-and had even devised a better mousetrap for their breathing comfort and ease. But now, with this seemingly simple problem, he was stumped.
On the way back from what was to be our last visit to the clinic in Indiana, my parents and I stopped at an Arby's for lunch, and I realized that the caffeine from the cardboard-cup-flavored iced tea there was more effective in relieving my pain than occipital nerve blocks. For about an hour, the headache went almost completely away. Later that day I called my uncle, who agreed there was no point in continuing the nerve blocks. But he didn't have any alternatives.
"Don't worry," he said. "These things always burn themselves out."
"What do you mean?"
"Chronic pain burns itself out, eventually."
"What do you mean by 'eventually'?"
"I don't know."
"It's hard to say."
He didn't know.
I knew I couldn't wait for "eventually." It was time for a force bigger than us all, Big Pharma, to step in. I needed a preventive prescription medication, something to take on a daily basis that would raise my threshold to pain and make all these other weak, and even eventually harmful, stopgap treatments unnecessary.
As many new patients are surprised to learn, visiting a neurologist is a different experience from visits to other types of doctors from one's past. Here, because of the "invisible" nature of neurology-and this is not a complaint-the patient typically has no physical contact with the doctor. Business is conducted with the same level of human intimacy that you would expect from a bank clerk in opening a new Roth IRA. The nurses do the preliminary grunt work, such as taking blood pressure.
And then you go in to see the doctor, who sits opposite you behind a large desk, which in my opinion and in my case, resembles a judge's bench. This first exam, often costing several hundred dollars more than the others, is known as the "consultation visit," or the one visit where the neurologist actually displays an interest in talking to you.
Like other doctors to come, this first one I met, a general neurologist at a South Suburban hospital, was attentive, optimistic, and spry-in the beginning. The questions he asked were typical, revealing many common concepts behind the understanding of headaches in our culture.
First: "How old are you? What year is it? Who is the president? How many fingers am I holding up?"
Despite my assumption that my answers to him were correct, I answered nervously, afraid I would space out, perhaps fixate on one of those mundane matters that floats through the brain from minute to minute, such as a phone call I had to return or "What's the deal with that 'Priority Mail' thing at the post office? Is it really the same as regular first class, but they're making you pay more for it? They guarantee delivery in two to three days for 'Priority Mail,' but isn't that the same time that first-class mail takes? I just saw them dump the last package I mailed earlier today into the same bin as the first-class mail. Oh, wait a minute, who are these young fellows in the white coats, and why are they taking me away?"
But luckily, I remained focused and passed that hurdle. Then he asked about past head injuries; I had had a concussion in second grade, after falling backward on the ice from the insanely high Timbertown jungle gym, which was later razed after a spate of such injuries occurred at my school (a casualty of a less-protective era, along with punishing dodgeball games, the humiliating exercise of picking teams, and asbestos-lined classrooms). I'd been unlucky that it was winter; my blow had not been cushioned by the scattering of "protective" wood chips on the ground, which were well covered by a layer of ice. I ticked off past surgeries: adenoid and tonsil excavations in grade school. He checked my reflexes and asked me to accomplish challenges like touching my index finger to my nose and walking in a straight line.
Excerpted from All in My Head by Paula Kamen Copyright © 2006 by Paula Kamen. Excerpted by permission.
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Meet the Author
Paula Kamen is the author of All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache. Her commentaries have appeared in the New York Times and the Washington Post, among other publications. She lives in Chicago.
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I have chronic daily migraines with neurological symptoms (aphasia, numbness, and sometimes paralysis). My experience being what it is, Kamen's memoir really hit home for me. She so eloquently captures the suffering, frustration, grief, rage, fear, and lonelines of being in constant and debilitating ( and inexplicable!) pain that I found myself nodding along throughout. I especially recommend this book to those who have loved ones living with chronic pain- I think Kamen articulates a lot of things that caretakers and loved ones can really benefit from hearing and understanding. The kind of disability that Kamen exposes and the social and medical conundrums she explains can be so damaging to relationships because they are very hard to understand w/o experiencing them firsthand- it's amazing to have this book as a resource for people everywhere whose lives are being impacted by intractable chronic conditions. It is the most comforting thing I've come across in my journey to adjust to my new normal, and it is told so charmingly, with wit, humor, humility and compassion.
This book is not only for the suffering patient, but the suffering family as well. It is insightful, enlightening, and almost like a support group in a book. While this book offers no magic remedy, it offers sanity in the insane world of chronic daily headaches. Truly an delight to read, even with a headache!
You don¿t have to have Chronic Daily Headache (CDH) to recognize yourself in this book. As someone who has had a daily struggle for the past 13 years with an entirely different chronic disease, I was amazed at how similar my journey through the medical labyrinth has been to the author¿s. Besides, this is a well-written story infused with plenty of humor (as the title implies). Especially if you are a single woman with a chronic illness, you almost certainly will have had very similar experiences, and it¿s comforting to be reassured that you¿re not alone, you¿re not imagining things, and you¿re not just being hyper-sensitive. It also helps to be able to laugh at the absurdity of some of the things we¿ve experienced. Sometimes, that¿s about all we can do.