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FEATURE

CRIPPLING MIGRAINES AND OTHER INTRACTABLE
PAIN AFFECT ONE'S ENTIRE LIFE.
HERE IS ONE PERSON'S JOURNEY TO PITT'S PAIN INSTITUTE.







THROUGH THE
WINDOW OF PAIN
WRITTEN BY DIANE CALLIHAN


As I walked down a corridor in the Cathedral of Learning toward the room where I taught, I kept one hand pressed to the cool stone wall to keep from falling. My name was being repeated over and over again but I did not recognize it. The friend who was calling me finally grabbed my arm. I did not know his name.

"Are you okay?" he asked.

No, I wasn't okay. My whole body felt trapped inside my head. I was a prisoner locked behind skull walls. This was my fourth day of agony; the migraine would not let me go.

In the classroom I turned off the lights and sat on the front desk facing 23 freshmen. I tried to explain their next writing assignment, but I couldn't concentrate. A student asked me a question. I made him repeat it twice. I had no idea what he was asking. Finally I dismissed the class. This wasn't fair to anyone.

A few concerned students lingered, offered advice, suggested medications. After they left I sat for a few moments in my dark empty classroom and wondered how a headache could have taken control of my life.

Months after that day in the classroom, the headaches still ruled. They became more frequent until I was getting about four a week. My husband's sympathy turned to frustration as night after night he came home to find me on the couch with a compress on my head. We stopped playing tennis and going to movies. Instead I'd lay motionless in the dark. I stopped cooking fancy recipes. Instead he'd bring home Taco Bell. My headaches had taken over. Everything else was falling apart.

Modern pain starts with Descartes. In 1644, this philosopher and physician (I think, therefore I hurt) proposed a theory of pain that survived until the mid-1960s. "The tendency was to think about pain as if the amount of pain you have is directly related to the amount of physical pathology," says Dennis Turk, director of the University of Pittsburgh's multidisciplinary Pain Evaluation and Treatment Institute, which last year reported 30,000 outpatient visits for the treatment of chronic pain. "According to classic ways of thinking about pain, if I cut my finger a half-inch long, it should hurt twice as much as if I cut it a quarter of an inch." In Descartes' model, pain traveled in a single direction. Turk offers an example, suggested by Descartes, of a person standing next to an open fire: "The flame particle jumps from the fire, touches the toe, moves up the spinal cord until a little bell goes off in the brain and says, 'Ouch. It hurts.'

"Now, if you think about this model," he continues, "then the way you would treat pain is to remove the source of the pain or to cut or block the pathway. What physicians have done historically is give medication to try and block the pain pathways, or do a surgical procedure. So that, if I cut a nerve right here, and the pain is below that, then I shouldn't feel any pain. Unfortunately, it's not that simple."

Such a model places the emphasis on the physical basis of pain. "Interestingly, the converse of that is, if it's not physical--if you go to a doctor and he does MRIs and CTs and can't find the cause of pain--then it must be psychological," notes Turk. "It's a dichotomous way of thinking about it."

And, in fact, inadequate. Despite attempts to block or cut pain pathways, many patients still report pain. In some extreme cases in the 1940s, brain surgeries like lobotomies, were performed as a last resort to relieve chronic pain. When researchers interviewed these patients later, they said, time and again: "It still hurts. But it doesn't bother me anymore."

By the 1950s, researchers were taking a more sophisticated approach to understanding pain as not just physical and not just psychological, but a combination of both. In 1965, a theory that would revolutionize the treatment of pain was proposed by Canadian psychologist Ronald Melzack and British anatomist Patrick Wall. According to their theory, there is a gating mechanism in the spine. Messages coming up from the periphery can open the gate and let the pain signals through. And messages coming down from the brain can close the gate, preventing the pain from being perceived.

"Imagine that you have a little pain in your finger," Turk explains. "Your interpretation is that it's minor, a paper cut. You go on and function. Now imagine you get the same amount of sensory information, but it's in the center of your chest. You'd say, 'That's where my heart is.' What might happen is a whole chain of things, which might tense muscles, which might make the pain worse and lead you to seek a medical institution."

One of the studies generated by the Pain Institute investigated the role of psychological factors on the muscular-skeletal system--with quite interesting findings. Researchers brought back-pain patients into the lab for a relatively simple experiment. First they asked them to describe a recent episode when the pain in their backs was particularly severe. Then they placed surface electrodes at different sites on their bodies and recorded electrical activity from their muscles while they were in a relaxed state. Finally, they asked them to again describe their recent back pain. While there was no change in electrical activity in their necks, forearms, or other places, the back-pain patients recorded anywhere from a 200 to a 1,000 percent change in muscular activity in their back muscles.

"Next we tried to see what happens in facial pain patients, " Turk says. "Will they show the same response? We looked at people with TMJ (temporomandibular joint disorder), and ran the experiment with only one difference. We didn't want people using their mouths to talk. So we had them imagine the situation. And the exact same thing occurred. We found whopping changes occur--800 percent--in the facial muscles. But nothing happened in the back muscles. It's a site specific response."

Last year, the Pain Institute, which has what Turk calls a "wonderful marriage of clinical research, and education" programs, was awarded $2.3 million in research grants related to assessment and treatment of temporomandibular disorders, chronic back pain, chronic headaches, and fibromyalgia. They are looking at treatment for patients with jaw and facial pain, for the nonpharmacological treatment of headaches during pregnancy, even the effect of chocolate on headaches.

"We're also looking at how psychological factors affect physiology as well as how they affect how people adapt and respond to their condition," says Turk. "We've got to understand more about the integrated person. This is not to say psychological problems cause the pain. But rather psychology needs to be considered as a part of the whole picture. The only way to understand chronic pain and treat it effectively is to do it from that perspective."

The Pain Institute offers a number of innovative programs: acute pain management for postoperative patients; work assessment programs to help those with pain return to their jobs; cancer pain services; a head and facial pain program; and a back-injury clinic.

But the Pain Institute is different because it moves beyond standard medical treatment. Often a primary goal is to get patients safely off prescribed painkillers, which can start the cycle of physical and psychological dependence for those in constant pain. It is a place where pain is not coddled, tucked into bed, laid out flat, or numbed. Instead it is exercised, positioned, relaxed, studied, and dealt with. In place of the ole doc with a bottle of codeine, a team of experts prescribe treatments for you after a comprehensive evaluation. Personalized, custom-made medicine.

Pain is part of everything," says Turk, adding that the first reason people go to a doctor is because they have an upper respiratory infection. The second reason they go is pain. "And therefore, by being part of everything, it is part of nothing." But by the time someone finally gets to the Pain Institute, named as one of the 10 best pain centers by American Health magazine, they have been in pain for an average of six years.

"People who come to a place like this don't have simple back pain. Simple back pain can be handled someplace else. Easy migraine headache patients-- the ones well-handled by medication-- they would be treated by a neurologist before we'd ever see them. We're seeing some of the most difficult kinds of patients. This is sort of the end of the line. The health care system failures come here."

Turk says that one patient came to them with a 22-year history of chronic pain. Turk repeats this in disbelief. "Chronic pain is something you don't die from. It's 24 hours a day, 365 days a year forever. For migraine headache patients, it's episodic. You might have headache-free days, but you're never done with it."

Three things characterize those who find their way to the Pain Institute: They've had multiple treatments and they're not any better. They are demoralized. And it is affecting all facets of their lives. The Pain Institute attacks pain from all angles. Its multidisciplinary teams include neurologists, physiatrists, physical therapists, anesthesiologists, occupational therapists, and nurses. There are also psychologists to help pain sufferers and their families cope. Pain is contagious.

"If you have chronic pain, it is going to affect you more than just physically," says Turk. "It's going to affect you psychologically, socially, recreationally, vocationally. It makes sense to treat people from different perspectives. You can't disembowel someone from their environment. You can't just say, 'Uh-huh. She's an 'ear.' We'll take care of the ear problem.' She may have an ear problem, but she has an ear problem in a whole person who's got a social system, who's got a work system, who's got a family. If you don't consider all those factors, you're going to end up failing."

My headaches began about two years ago. They didn't come during stress, but afterwards. This is known as the "weekend headache" syndrome. Tension in my neck seemed to trigger my migraines. Before long, I was unable to read bent over a book or type on the computer. I taught a class three times a week, and after each session, the pain would roll in like a thick fog. After one family crisis, I had a migraine that lasted five days and landed me in the emergency room. I was given so many drugs that I couldn't walk, but the pit bull of headaches hung on.

Migraines are common, yet mysterious. About 16 percent of women have them; nine percent of men. Migraine advice and mythology abound. I had countless conversations with well-meaning people that went like this:

ME: I have a migraine.

ANY OTHER PERSON: Oh, you get migraines? My (sister, neighbor, Aunt Gigi) gets those. You need to (avoid alcohol, drink herbal tea) and (exercise, get some rest).

I finally ended up at the Pain Institute when I saw a notice that the University of Pittsburgh Medical Center was looking for women between 18 and 65 who suffer from frequent migraines. What I've learned is that what causes people to have migraines is unknown. The current theory is that migraines are caused by chemical imbalances in the nervous system, which are thought to cause changes in blood vessels and muscles as well.

Muscular changes, tension, and knotting, which have long been associated with tension headaches, have also been linked to migraines. Neurologist Dawn Marcus, coordinator of the Pain Institute's headache clinic, says, "What has been found is that folks who do suffer from migraine headaches have a lot of changes with their neck posture, with how well their joints are moving, and with muscle tightness and tenderness in the back of their head and neck. Whether those changes started before the migraines or whether that's a consequence of having migraines, no one really knows."

It may be that the muscular changes act as a trigger for the headaches, as was the case for me. What sets off migraines is different for everyone, but there are a huge number of common triggers: light, noise, strong odors, alcohol, caffeine (which relieves migraines for some), MSG, cured meats, aged cheese, chocolate, birth control pills, tobacco, and stress.

There is no quick and easy test to determine if one has migraines; doctors normally rely on the patient's self-report. The symptoms of a migraine usually include a dull ache in the head or neck, building to a throbbing or pounding pain on one side of the head that lasts from several hours to several days.

Just as there are many possible triggers for migraines, there are many possible treatments. There is a host of medications, both abortive--to be taken as needed--and preventative--to be taken every day. Since seratonin levels rise in migraine sufferers right before a headache and drop dramatically during the headache, many of the prescribed medications are aimed at evening out those levels. The problem with medications is that they can often result in drug-rebound headaches because your body builds a tolerance to painkillers or gets withdrawal symptoms if you don't take them. Other non-drug treatments include sleep, acupuncture, acupressure, exercise, heat packs to the back of the neck, pure oxygen, and massage. For prevention, relaxation therapy and biofeedback are the most tried and true methods.

The body can be a house of pain with many rooms to hide in. The Pain Institute uses many experts and many techniques to seek it out. But does it all really work?

For me the answer came as I sat in the waiting room. A man in his 30s came down the hallway on crutches. He was dressed in shorts; one leg was gone, the other was scarred and slightly twisted with bulging rope-like muscles. He spoke briefly to a doctor about his children at home. When alone, he dropped some papers on the floor. He moved both crutches into one hand for balance and slowly lowered himself to the floor. It looked hard. It looked painful. But he did it. And I think that's how to measure success at the Pain Institute--through the small victories that can make a huge difference in life.

For myself, if you looked at the daily headache diary graphs I keep for the study, you'd notice fewer days filled with zigzags and curves--days when my headaches forced me back to bed in a darkened room--and more and more straight lines. I'm having fewer, less intense headaches.

But the real proof for me is that I wrote this article over a three-day weekend. Three bright beautiful days off. Three days not lost to the beast in my head.


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