Migraines Force Sufferers to Do Their Homework - NYTimes.com

MIGRAINES may be right up there with root canals and childbirth as one of life's more painful experiences. But unlike childbirth or dental surgery — the pain of which can be dulled with standard medications — migraines are notoriously tricky to treat.

Those who suffer from these disabling headaches often try a dozen or so medications before they find something that works. What's more, many migraines do not get properly diagnosed, according to the doctors and researchers I spoke with. That can lead to a lot of extra pain — and expense — for the afflicted.

A reason migraines are so maddeningly elusive is that they are not simply bad headaches. They stem from a genetic disorder (yes, you have your parents to blame) that afflicts 36 million Americans and manifests as a group of symptoms that besides head pain may include dizziness, visual disturbances, numbness and nausea.

Some of the symptoms resemble those from other disorders, like sinus headaches, epilepsy, eye problems or even strokes. And to further complicate matters, sufferers react in varied ways to medications.

"What might be a miracle drug for one person could be a dud for another," said Dr. Joel Saper, director of the Michigan Headache and Neurological Institute, a treatment and research center in Ann Arbor. "There is no universally effective therapy."

If that sounds murky, one thing is not: early intervention is important. If you get a migraine every few months and can cope by taking an over-the-counter med, great — you've got the problem somewhat under control. But if recurring pain is not responding to your own efforts, seek expert help.

"Some early data suggests that if you let headache pain go without treatment it can lower your threshold for pain down the line," Dr. Saper said. In other words, untreated headaches can make you more vulnerable to pain.

On the other hand, if you are taking over-the-counter or prescription painkillers two to three days a week for months on end, the medications you are taking to dull pain could worsen your condition. You may then start to experience medication-overuse headaches — a risk for migraine sufferers.

Researchers are learning that pain and the medications used to treat pain can potentially change the biology of the brain.

Receiving good treatment can help you function more effectively, and will probably also save you money over the long term. And if you have health insurance, it should cover most of the relevant medical evaluations and treatments.

Here are suggestions for getting help.

EVALUATION If you have chronic or disabling headaches that your primary care physician has not been able to manage, see a neurologist who has expertise in treating headaches.

Be sure to ask beforehand about that expertise. Not all neurologists have experience treating migraines.

You might want to see a certified headache specialist. Doctors with this new certification have passed board exams in their area of specialty as well as one on headaches. You can find a list of the approximately 200 certified headache doctors on the Migraine Research Foundation's Web site.

Before you make an appointment, ask your potential doctor's assistant, by phone, a few key questions. Find out about the doctor's experience. And be sure to ask how long the first meeting will last.

"A good doctor will spend at least an hour with you," said Dr. David W. Dodick, a neurologist at the Mayo Clinic in Arizona.

It's important for a doctor to take time to listen to your issues, said Claire Louder, 44, who has had migraines since she was 12. She said she has seen a half-dozen doctors over the years.

"The best ones pay attention to what you say," said Ms. Louder, who is a chamber of commerce executive in Maryland. "One doctor I saw had a treatment plan in mind before I'd said a word. Then she kept telling me my migraines were due to stress, which was an oversimplification."

A good doctor should be creative and willing to try a variety of treatments.

At your first visit, the doctor will make sure that your headaches are not caused by an underlying illness, like Lyme disease or a brain tumor. Once the doctor is satisfied that your condition is indeed what are called primary migraines, the doctor will ask you detailed questions about your attacks, take a thorough medical history and probably have you keep a diary of your migraine patterns.

STRATEGIES VARY Be prepared for a multi-tiered approach.

Doctors typically prescribe a triptan drug or an ergot-related drug to help people control infrequent migraine attacks. Both of these drug types influence brain cell reactions that are part of the migraine process.

There are seven types of triptans. Ms. Louder tried five before she found one, rizatriptan — sold under the brand name Maxalt — that worked for her. The best-seller Imitrex (sumatriptan) is available in an affordable generic version.

Triptans are far more popular, but many people who do not respond well to triptans do well with the ergots, such as D.H.E. (dihydroergotamine), Dr. Saper said.

If you have migraines at least weekly your doctor may prescribe a preventative medicine to reduce their frequency of attacks.

"Prescription preventatives are grossly underutilized," Dr. Dodick said. "They can be extremely effective for some people."

Preventive medicines, taken every day, include antiseizure drugs, beta blockers and tricyclic antidepressants. Ms. Louder started taking Topomax (topiramate), an antiseizure drug, five years ago and says it has helped to reduce the frequency of her migraines from once a week to once a month.

Your doctor might suggest some natural remedies too — like vitamin B2, coenzyme Q10, magnesium or butterbur, an herb that is sold under the name Petadolex — which some specialists say can help reduce both the frequency and intensity of your headaches. These supplements are not covered by insurers but all are relatively inexpensive.

LIFESTYLE CHANGES "Migraines are built into the biology of the brain," Dr. Saper said.

Sufferers inherit a hypersensitivity to physical and emotional events — like stress, noise, certain foods and even bad weather. Learning to identify the circumstances that can set off an attack is important in migraine management.

Dr. Dodick said, "Recognizing triggers can prevent attacks from occurring." After keeping a diary, Ms. Louder learned, for instance, that low-pressure storm systems, meats with nitrates and many other preservatives induced her migraines.

"Migraine patients don't respond well to change," Dr. Dodick said.

Sometimes just keeping one's patterns and habits predictable can reduce attacks. Lack of sleep, erratic schedules and lots of plane rides are disorienting for even the hardiest people, but they can literally send migraine sufferers to their beds, or worse, to the E.R.

http://www.nytimes.com/2010/01/30/health/30patient.html?pagewanted=print

Pain Research, Education, and Policy blog, Tufts University

http://blogs.uit.tufts.edu/tuftsuniversitymspainresearcheducationandpolicy/

MS in Pain Research, Education & Policy - School of Medicine - Tufts University

MS in Pain Research, Education & Policy

The Master of Science in Pain Research, Education and Policy (MS-PREP) at Tufts University School of Medicine is the first and only multidisciplinary postgraduate pain management masters program in the United States.

Started in 1999, it was developed by two pain experts - an anesthesiologist/internist and a sociologist; this diversity is reflected in the broad curriculum.

The Master of Science in Pain Research, Education and Policy addresses topics such as the ethical and sociocultural aspects of pain, palliative care, end of life issues, public policy, legislative issues, communication, research methods, and advocacy, along with clinical issues and the neurochemistry of pain.

The program offers a small, interactive environment with internationally renowned faculty and clinicians to allow for optimal advanced learning.

http://www.tufts.edu/med/education/phpd/msprep/index.html

The Language of Pain - Book Review from How To Cope With Pain Blog

Dr. David Biro is a physician, has a PhD in English literature from Oxford, and has experienced severe pain and illness himself.  Drawing on this unique collection of experiences, he has written an interesting book, The Language of Pain.

When we're in pain, "there's nothing but the pain."  Our world can shrink and we focus internally into our bodies.  When we try to share our experience of pain, we're often at a loss because language doesn't do justice to our very difficult experience.  We can't really communicate what it's like.

As well, our family and friends have a hard time understanding how bad it can be when we say, "the pain is bad."  There's a disconnect between exactly what we experience and the language available to us.  This can result in our feeling isolated and misunderstood, and family and friends feeling left out, helpless, or questioning our levels of pain.

Pain severs our engagement with the world and thrusts us inward.  Naturally, we try to communicate our feelings, but the language runs dry…  In pain, we are alone.

Biro explores what it is about our experience of pain that's unique – different from, let's say, other physical experiences such as seeing a bird fly or tasting an orange.  He uses examples of both physical and mental pain from literature and touches on philosophical ideas about pain.

One way we can more successfully and accurately communicate our pain experience is to use metaphor.  Biro states that we often use metaphor in areas we don't completely understand such as religion and science.

Think about the difference between saying, "my pain is bad" or "my pain is 9 out of 10," and the novelist Reynolds Price's description of his cancer pain:

…a white-hot branding iron in the shape of the capital letter "I" held against my upper spine from the hairline downward some ten or twelve inches and unrelenting.

The writer Guy de Maupassant describes cold as:

Sharper, more penetrating still than the year before, the cold made her suffer, continually…  icy puffs seemed to slip down her back and to penetrate between the flesh and her underclothing….  Innumerable currents of air appeared to have taken up their abode in the apartment, living, crafty currents of air as cruel as enemies.   …they were incessantly buffeting, sometimes on the face, sometimes on the neck, with their treacherous, frozen breath.

Metaphors can help us more clearly communicate what our expereince is like, and others can get a better sense of what pain feels like to us.  Biro goes on to explore several ways that metaphors can be more useful and accurate than simply saying we're in pain.

Biro draws on cutting-edge science when me writes about mirror neurons – how certain cells in our brains are programmed to watch others.  He also proposes using metaphors or imagery to help ourselves imagine healing.

Oveall, the book is weighted more heavily on the literature side, with some mentions of philosphy.  It's goal isn't to be a self-help book for coping with pain.  Rather, The Language of Pain would be of interest to those who would enjoy a literary exploration of the language of pain.

http://www.howtocopewithpain.org/blog/1826/the-language-of-pain-book-review/

Pain and dying are explored by doctors in new books

Pain and dying are explored by doctors in new books

By Perri Klass
Tuesday, January 26, 2010; HE04 

Pain and death are the physician's familiars, reminders always of the limits of medical capacity and the parameters of human mortality. The desire to prevent or at least alleviate pain and to evade or at least postpone death guide medical practice, yet doctors have often been accused of failing to take pain seriously and treat it effectively. And when it comes to taking care of patients at the end of their lives, once again doctors don't always do well, either at discussing the realities with their patients or at administering treatment at that critical juncture.

It is this need for proper care at the end of life that has given rise to David J. Casarett's specialty: He is a palliative-care specialist and the director of research and education for the University of Pennsylvania's hospice, and so he consults on a range of dying patients. "Last Acts: Discovering Possibility and Opportunity at the End of Life" is his rogues' gallery of last-act stories and his attempt to make sense of the variety of ways in which human beings react to the knowledge that death is near.

David Biro, author of "The Language of Pain: Finding Words, Compassion, and Relief," sees the subject of pain not only as a physician but also as a patient: After finishing his residency training, he developed a blood disorder that ultimately put him in the hospital for a bone marrow transplant. "At its most intense, the pain literally strangled my vocal cords," he writes. Recalling Edvard Munch's painting "The Scream," he continues, "Silenced, I felt just like Munch's sufferer: wanting to scream as loudly as I could but unable to make a sound." His book is a journey through art and literature as well as medical experience, seeking ways of understanding, articulating and relieving pain.

Casarett sorts his stories of patients into a set of fascinating conundrums: "Maybe there is an overarching organizational structure -- a taxonomy -- of the last acts that people pursue near the end of life." Thus, his book is organized by category, each defined by a signature story: Danny, who faced his advanced cancer with a round of wild partying and high living; Marie, who wanted to disinherit her family; Tom, who buried himself in the budgets and spreadsheets of his office job.

Many of these stories are not heroic; these are patients who are refusing to die what might be called a "good death" by literary conventions, which demand heartwarming family tenderness or nobility at the gates of eternity. Further, as the author notes, these patients often reject the more modern medical ideal of a "good death" that has given rise to the hospice movement of which Casarett is a part. His medical team is profoundly troubled when Jacob, rapidly dying of leukemia, insists that he wants to be placed on a ventilator, even though it will prolong his life for only a few hours and rob him of the possibility of spending his final moments awake with his family. When Tom focuses only on his work, the team wants to know why: "This was a patient, they thought, who should be saying goodbye to his family. So why was he filling out evaluations of assembly-line employees and estimating his department's computer budget for the coming year?"

The gradual journey toward understanding this highly unsatisfactory patient is detailed with self-awareness and humor. As he drives back from visiting Tom, Casarett begins to see himself in the patient's place, facing imminent death and "finishing a last paper or two. And wrapping up the data analysis for a study so a colleague could write it up." This sense of identification brings him into some conflict with his team, when he tries to argue against the idea of work as denial. And as he pursues Tom's story, and stories of other patients who fill their last days with their regular jobs, he finds himself wondering about the different functions that work may serve: Is it a distraction? A comforting habit? A source of identity? ("So what sort of person would be compelled by his sense of his identity to continue working . . . . Such a person would be a writer, a researcher, a thinker, naturally. It would be someone, I thought -- untroubled by modesty -- like me.") The author's willingness to analyze himself and his colleagues and to confess his many false starts gives his narrative an appealing quality. There is no omniscience here, just experienced and well-meaning people attempting to understand and help.

The stories in "Last Acts" are unexpected and often quirky. Casarett's taxonomy includes Lacy, who was desperate to write a novel and leave it as her legacy, and Ladislaw, who wanted only to enroll in a clinical trial so his illness could be useful. And there is Jerry, a hospital employee "widely known for a combination of laziness and boorish behavior that made him widely feared and universally hated," whose refusal to apologize, even when seriously ill, prompts an examination of why the dying may or may not seek to make amends.

At times, the team of hospice experts are shocked at what seems selfish or irresponsible or unappealing behavior by the patients. But in fact, this is a big part of Casarett's point: that our collective sense of the "good" death can prevent us from seeing the individual realities of people's lives. It's a lesson he learns as a doctor, over and over, delineating the stubbornly individual imperatives that drive people who know they are close to death.

Biro, on the other hand, sees a unifying experience in the complexity of pain. In his erudite and ambitious book, he writes about the ways that artists, poets and novelists have described pain; he considers physical pain and psychological pain and argues that the isolation that comes with pain, especially when it cannot be described, contributes to the agony. He invokes philosophical reflections on pain by Elaine Scarry and Susan Sontag, along with personal accounts by writers ranging from Fanny Burney, who underwent surgery for breast cancer in the days before anesthesia, to Virginia Woolf and William Styron on illness and depression, to James Joyce describing Stephen Dedalus's ear infection to fictional characters suffering and dying beside Mount Kilimanjaro (Hemingway) or in the wilds of the far north (Jack London). "The Language of Pain" investigates not one single vocabulary but a complex syntax of suffering.

In a wonderful chapter called "The Weapon," he takes us from a teenage boy in the emergency room who compares his abdominal pain to a knife, to a larger discussion of disease viewed through the metaphor of war and combat: "We feel as if there must be an agent moving against (and threatening) the body: Burney's poniards, Daudet's pen-knife, Price's eel, John's knife, Rachel's volcano, Mr. H's fire. Or, more elaborately . . . an enemy or alien force marches against and attacks the body's interior, like the advance of the secondaries in Solzenitsyn's novel, tearing the cancer patient's defenses to pieces as if they were tanks."

Considering pain in terms of agency, he continues, offers a kind of answer to the helpless question: Why is this happening to me?

Eventually he turns to the consideration of "good pain, " the pain in a Jack London story that reassures the character that he is in fact still alive and intact, and to the philosophical, metaphorical and even clinical implications of describing and expressing pain: "Pain is not an aberration in human experience but a routine, inescapable part of life . . . . It affects us all at one point or another. How, then, can we let it pass without trying to share it? How can we keep silent?"

Biro brings an extraordinary range of voices into this silence and moves through a huge variety of experience and narrative, without straying too far from the bedside.

Both books draw strength from this, from the sense that these are real, everyday situations that nevertheless require responses outside the traditional pharmacopeia. Both these books resonate not only with the common certainties of pain and death but also with the infinite individuality of human life and human voice.

Klass, the author of "The Mercy Rule: A Novel," is a professor of journalism and pediatrics at New York University.

http://www.washingtonpost.com/wp-dyn/content/article/2010/01/25/AR2010012503040_pf.html

Matt Birk and other NFL players accept pain as part of the game - ESPN

There is no way to write this without some collective eye rolls from the lower tax brackets of the world. Sure, fellas, tell us about your aches and pains and your multimillion-dollar bank accounts.

Most players won't even talk about it, the price they pay, because in a league full of tough guys and a country with a 10 percent unemployment rate, it just comes across as whining. The game flashes over the TV for three hours on Sunday afternoons, and the average fan heads to work Monday without much thought as to what happens next. But when the camera lights dim, the next 48 hours reveal the true toll on an NFL player's body and how everyday life can be difficult to navigate.

Throughout three separate conversations in which Birk reconstructed for ESPN.com what a typical Monday and Tuesday feel like for a veteran, he wanted to make a few things clear: That he willingly signed up for this 12 years ago and has no complaints or regrets. That he feels lucky to play the game he loves, make a great living and be surrounded by teammates who ultimately become close friends.

Their bond, in large part, is forged from the fact that they're the only ones who know what they go through.

It's a fraternity of long-term pain and lifelong consequences that are suppressed in a 17-week, suck-it-up-and-play vacuum. Pittsburgh Steelers receiverHines Ward reflected that culture earlier this month when he initially questionedBen Roethlisberger sitting in the thick of the playoff hunt while the quarterback was still suffering lingering effects of another concussion.

Birk, who once donated $50,000 from one of his game checks to assist retired NFL veterans, is keenly aware of what might lie ahead for his body 10 years from now. He just can't think about it. In December, all a veteran thinks about is survival. Can his body hold out for a few more weeks? Can he play the way he did in September?

"Guys play the game for different reasons," Birk says. "One of them is the challenge, the physical challenge, the mental challenge, to see how much you can take. How much you can withstand. And it's about developing that perseverance every week. Getting your body and your mind ready to go.

"I mean, everybody's sore. Everyone who played yesterday is sore today. That's just part of the game, and you're not going to last if you can't deal with it."

Birk settles in with a cup of coffee on the Monday after the Lions game earlier this month, Victory Monday, which means the Ravens get the day off. But it's never really a day to relax. His ankles, knees and fingers are sore. His shoulder hurts. That popped this morning, too.

When he got into his truck, he had to lower his head, which triggered a fairly constant pain in his neck. Birk has spent various parts of the season on the injury report because of his neck but hasn't missed a game in three seasons. On Sundays, he says, the adrenaline is flowing and the pain disappears. Mondays are the proverbial hangover, a time to assess the damage. On this particular day, Birk says all is good. He escaped the game with just a few cuts on his hand and a gash above his nose from his helmet. That might affect his modeling career, he jokes. Nothing will change his status for the next game.

Some weeks are worse than others. When Birk goes up against Casey Hampton, the Steelers' massive nose tackle, he always seems to feel a little worse on Monday. One thing is certain: The second half of the season seems to grind at a much slower and harsher pace. If you're lucky, you have a perfectly placed bye week at midseason.

If you're smart, you don't spend Monday in bed. Birk always has been proactive when it comes to his body. The day after a game, he heads into the Ravens' facility to lift weights and "flush out" the toxins and soreness. He stretches. The Ravens have team chiropractors, and Birk takes advantage of the perk and usually sees them on Mondays.

"There's a joke that somebody, some jackass -- usually me -- always says when you're putting pads on that first day of training camp," Birk says. "They say, 'Remember how good you feel right now? It's as good as you're going to feel for seven months.'"

More ...

http://sports.espn.go.com/nfl/columns/story?page=hotread16/Birk