ON A LATE afternoon in April at the Head Pain Treatment Unit of Chelsea Community Hospital in Michigan, everything feels muted—window shades are drawn, and patients are speaking just above a whisper. Linda, a migraine sufferer who does not want to reveal her last name, is on day four of her detox treatment and is feeling nauseated. Wearing an elegant maroon and orange shawl, Linda describes her previous night to a group of doctors, nurses and psychologists: “My legs were twisting and jumping so much, there was no way I could sleep. I was miserable.”
Like 70 percent of the patients at this headache-treatment center of last resort, Linda is under medical supervision while she withdraws from addictive painkillers that were prescribed to quell her debilitating headaches. Ironically, when her neurologist back home recommended she take powerful opioids for her daily migraines, Linda, who sells real estate for a living, was reluctant. “I did my research and read about how quickly you can become dependent,” she says. “I told my doctor how worried I was, but he basically said there was nothing else that could help me. And here I am, nine months later, physically dependent on a drug I never wanted to be on in the first place.”
Most other headache sufferers don’t choose to be addicts either—but an estimated one in five migraine patients is prescribed opioids such as OxyContin, Vicodin and Percocet, and barbiturates such as Fioricet; almost 20 percent of the opioids prescribed in this country are dispensed to relieve the pain of migraines and headaches, according to a study of medical-insurance claims published in 2009. While no one knows for sure how many migraine sufferers go on to overuse addictive painkillers, the problem is “epidemic,” says Joel Saper, MD, director of the Michigan Headache and Neurological Institute (MHNI), which administers the in-patient program in Chelsea and an outpatient clinic in nearby Ann Arbor. Who’s getting addicted? At the Waismann Method in Beverly Hills, a rapid-opiate-detoxification center, patients undergoing withdrawal from narcotics taken for migraines tend to be “women in their thirties, forties and fifties, with families, husbands and jobs,” says co-medical director Michael Lowenstein, MD. In other words, women very much like us and the people we know.
As the number of prescriptions for potentially addictive painkillers soars in this country, experts predict the dependency problem will only grow worse. “For every patient who truly needs narcotics for migraines, there are about 100 who are getting them,” estimates Stephen D. Silberstein, MD, director of the Jefferson Headache Center in Philadelphia. Every now and then we hear about breakthroughs in migraine treatment, such as the development of a group of drugs called triptans—so why are so many doctors prescribing narcotics? The answer says a lot about the nature of migraines and the American medical system.
A MEDICINE CABINET OF SOLUTIONS
Headaches come in many forms (see “Name That Headache,” at the end of this article), but when sufferers end up with a painkiller problem, it’s almost always because they are among the 30 million Americans struggling with migraines. Women are three times as likely as men to experience this particular kind of headache, which produces a debilitating pain that Shawn King, singer, businesswoman and wife of television personality Larry King, likens to having “an ice pick in my head.” But pain is only part of the package. Migraines are complex conditions that can also produce extreme nausea, pain at the slightest touch and an acute sensitivity to light. “Migraine symptoms can incapacitate a person for hours or days at a time,” notes Cathy Glaser, cofounder and president of the Migraine Research Foundation in New York City.
“People with migraines are vulnerable to overreacting physiologically to a variety of triggers,” says Saper. The triggers can be generated externally (by a stressful event, for example) or internally (by hormones—migraines tend to strike around menstruation and during perimenopause). “It’s not the presence of estrogen that acts as a trigger but the fluctuation of it,” Saper notes. That explains why migraines often diminish or even abate after menopause, when sex hormone levels take a dive.
Dilated blood vessels, long suspected to be the cause of migraine pain, are now seen as just part of a cascade of events that include, among other changes, inflammation of brain tissue and shifts in levels of the pain-regulating neurotransmitter serotonin. “Pulsating blood vessels irritate the inflamed tissue around them, and this contributes to the pain,” says Saper.
A variety of drugs are available to relieve this misery. Most, including narcotics and barbiturates, are taken on an as-needed basis to stop a headache that has already begun. Triptans, which have been heralded as a migraine breakthrough, work best at the onset of an attack; they provide relief by reducing blood vessel inflammation. Other drugs are preventives that are prescribed for daily use. For instance, older tricyclic antidepressants that affect levels of serotonin and norepinephrine, such as amitriptyline, may lower the frequency of migraine episodes. Antiseizure drugs like Topamax also reduce recurrences for some sufferers. Last year the FDA approved a novel treatment: Botox injections around the head and neck. These have been shown to help with certain types of migraines, possibly because they block pain receptors or reduce inflammation.
WHEN MOST REMEDIES DON’T WORK
Many patients are able to effectively reduce pain through these conventional therapies. But about 10 to 25 percent of chronic-headache sufferers (of all kinds) don’t find relief. Overwhelming migraine pain is responsible for more than a million patient visits to hospital emergency rooms each year.
Recurring migraines can take a huge toll on sufferers’ lives. “I have never known what it is like not to have a headache,” says Jeanne Stebbins of DeForest, Wisconsin. Decades on painkillers and ever-worsening attacks led her to leave her longtime job as a legal secretary and file for disability. Shawn King believes that her use of migraine painkillers endangered her life. By the time she entered treatment in 2008, she was taking up to 20 Vicodin a day, and a physician sometimes went to King’s home to inject her with morphine. “I could easily have died,” the singer says.
Kathleen Cresong, who works for a payroll company near Philadelphia, believes that brutal migraines prevented her from attending college and contributed to the dissolution of her first marriage. “I was and am still willing to do anything to stop the pain,” she says. Now 50, Cresong had her ovaries and uterus removed at 33 in an unsuccessful attempt to stop her headaches by ending her production of sex hormones. She finally found relief last summer after undergoing an experimental procedure that involved implanting an electronic device at the base of her skull.
THE PAINKILLER PARADOX
Compared with such extreme measures, swallowing a Vicodin or Percocet can seem like a relatively tame way for migraine sufferers to escape the hell of an attack. “Patients essentially trade debilitating sedation for debilitating pain, but it’s not a ridiculous choice to make, considering how severe the pain can be,” says Richard B. Lipton, MD, director of the Montefiore Headache Center in New York City.
For people who experience only a few episodes a year and get insufficient relief from other pain medications, powerful opioids and barbiturates can be a relatively low-risk and effective treatment option. The problem is that a significant proportion of sufferers experience attacks far more often: 37 percent endure episodes one to three times a month; 14 percent have them two to six times a week; and 11 percent, once a week. A patient downing opioids or barbiturates that often is likely to build up a tolerance that will lead her to crave progressively larger amounts of medication, creating a real risk of physical dependence.
What’s more, frequent dosing puts migraine patients on a path to making their headaches worse, not better. Using opioids and barbiturates at least eight days a month can change pain receptors in the brain and make migraines go from being an every-now-and-then problem to a daily affliction, according to a rapidly growing body of research. This is called “transforming,” and it causes a vicious circle: Headaches spur patients to take meds for their pain; dependence and tolerance build; patients require more medication for relief; and the headaches just keep getting more frequent, leading to even more pill popping.
Overusing other acute-pain drugs—from Excedrin to triptans such as Imitrex—can also cause patients to develop more-frequent headaches. “But opioids and barbiturates pose twice the risk of transformation,” says Silberstein. So the rebound effect is much more of an issue with these drugs, which also carry the possibility of physical dependence.
If there were a magic bullet for migraine sufferers, physicians obviously wouldn’t be prescribing opioids and barbiturates at the current rate. “But the reality is that the conventional therapies create side effects that not everyone can tolerate; plus, no single medication or treatment works for every patient,” explains Saper. “For the most difficult cases, we might have to try 30 medicines, in different dosages and combinations, before finding something that is effective.”
Perhaps the only doctors in the United States who have deliberately signed up for this kind of challenge are certified headache specialists, who are typically neurologists. There are about 300 of these specialists in the U.S., which means just 4 percent of migraine patients are under their care. An additional 20 percent of migraine sufferers seek treatment from general neurologists, who are often—but not always—willing to take on intractable headache cases. Other migraine sufferers go to pain centers, frequently run by anesthesiologists, and some to psychiatrists. But about half of these patients are treated by primary care physicians (PCPs), who generally have received only minimal headache education during their medical training.
And that can be a problem. Many PCPs do a great job of taking care of migraine patients, “but treating headaches well is not always a huge priority in primary care, perhaps because they are nonfatal disorders,” Lipton says. So even though triptans are now considered a first-line treatment for migraine pain, they are vastly underprescribed by PCPs, many headache experts believe. “Some primary care physicians are uncomfortable prescribing triptans because they worry about stroke or heart attack risk. But this is a significant danger primarily in people who have heart disease, atherosclerosis or a history of strokes. In patients at low risk for heart disease or stroke, triptans are quite safe and an underused option,” says Lipton.
Another problem: “PCPs may try one or two medications, not achieve the results they or their patients are hoping for and give up too soon,” says Elizabeth Loder, MD, MPH, chief of the division of headache and pain in the department of neurology at Brigham and Women’s Hospital in Boston. And sometimes patients, in search of immediate relief, are unwilling to experiment with other possibilities. “I couldn’t even consider the idea of trying out different preventive drugs or practicing deep breathing when my doctor proposed it,” recalls King. “It was as if I’d caught on fire and someone handed me a damp washcloth. All you want is that bucket of water now.”
Lack of reimbursement is also a deterrent to optimal treatment by any kind of doctor. “Talking to patients and trying out medications takes time, and doctors do not get paid to spend time with their patients,” Loder says. PCPs in particular work in an insurance-pressured environment that pushes them to spend a limited number of minutes with each patient.
Physicians are also inclined to prescribe opioids and barbiturates because there is less red tape involved. “Triptans are expensive [$24 to $124 per dose], and many insurance plans limit accessibility to them,” says Christina Peterson, MD, medical director of the Oregon Headache Clinic in Clackamas. “Tylenol with codeine, on the other hand, costs just pennies per pill. It’s easy to prescribe because the insurance industry promotes the use of anything that’s inexpensive.”
Concludes Lipton: “For many physicians, prescribing opioids seems like the easiest way to address a patient’s pain in the short term.” Or even the long term. “So many doctors put me on painkillers because they didn’t know what to do with me. I ended up on those drugs for 33 years and never improved,” says Stebbins, who has been narcotic free since her first stay at MHNI three years ago.
THE WITHDRAWAL BONUS
Overcoming an opiate or barbiturate dependency does not necessarily cure the migraines responsible for the problem, but it almost always helps. Within days of Linda’s withdrawal from opioids at MHNI’s inpatient branch, for instance, her headaches went from occurring daily to a few times a week. “I was shocked and angry when Dr. Saper told me that the drug itself may have been making my headaches more frequent,” says Linda, who is working with the Michigan facility to identify an alternative regimen that can keep her condition in check.
For Stebbins, a second trip to MHNI provided a big boost. “Before I came, I was getting bad migraines four or five days a week. Now I get a bad one once a week. I love the days when I have no headaches,” she reports. King benefited from both detox and changes in her hormones. “I was approaching menopause around the time I left rehab, so I’m sure both of those factors contributed to my getting better,” she says. “These days I’ll have an occasional migraine. But they’re nothing like the violent ones I used to get. Most of the time, a frozen gel pack on the back of my neck helps relieve the pain.”
Managing migraines effectively demands exceptional patience, commitment and drive—not just from physicians but also from patients themselves. “Research has shown that headache patients who are proactive have better outcomes, probably because they feel they have more control over their lives,” says Alvin Lake, PhD, director of behavioral medicine at MHNI. One way to gain more control is to experiment with mind-body practices such as biofeedback, relaxation and meditation, which have been found in numerous studies to significantly reduce the frequency and intensity of migraine attacks. Stebbins, for instance, has been experiencing some relief after hypnotherapy sessions with a psychiatrist.
It is always important to find the right doctor, but with migraines it is crucial. Certified headache specialists are likely to be up to date, but they can be hard to find. Here’s how to get the best treatment from whatever doctor you consult, whether a family practitioner, internist, neurologist, pain specialist or headache specialist.
KEEP A HEADACHE DIARY “Not only does it help you determine how frequently your headaches are occurring, but you may also see what is setting them off,” says Carolyn Bernstein, MD, assistant professor of neurology at Harvard Medical School. There is a free iHeadache app (or pay $9.99 if you want to avoid ads) for iPhone and BlackBerry users.
SEE YOUR DOCTOR REGULARLY AND OFTEN Having frequent headaches? Then your doctor should ask to see you every two to four weeks to learn how you are progressing. “If you are told to come back in three or six months, that raises big questions about how interested your doctor is in treating your problem,” says Frederick G. Freitag, DO, medical director of the Comprehensive Headache Center at Baylor University Medical Center in Dallas.
GIVE TREATMENTS A CHANCE “A patient and her physician should try out a medication for two to three months before deciding it’s not working,” says Loder. And several more medications should be tried after that before the question of narcotics is raised. “More often than not, physicians feel they have exhausted all their nonnarcotic options before they really have,” she adds.
ASK ABOUT PREVENTIVE MEDICATION If you are experiencing five or more migraines a month, or if your migraines last longer than two days, your doctor should also be talking about drugs that could reduce not only the pain of your attacks but the number you experience as well.
USE NARCOTICS CAUTIOUSLY There are times when opioids and barbiturates may really be the only viable treatments for your worst pain. “If your doctor does prescribe them, he should be prescribing only a small amount and making clear that they should only be used when all else fails and your only other option is a trip to the emergency room,” says Freitag. Silberstein takes a harder line: “If you are at the point where narcotics are being considered by your primary care physician, consult a more specialized doctor.”
[NAME THAT HEADACHE]
Migraines aren't the only type of pain in the head. Here are some other possibilities.
CLUSTER HEADACHES They occur frequently during a short period (perhaps three or four times a day for several weeks), then go into remission for months or years. Clusters are often considered the most intense of all headaches. Typically, the pain is burning behind one eye. These headaches occur in about one in 1,000 people.
TREATMENT Traditional over-the-counter analgesics such as ibuprofen and Excedrin generally aren’t effective against cluster headaches. Preferred medications include triptans and calcium channel blockers, the latter normally used for cardiovascular conditions. Oxygen therapy—which involves breathing 100 percent oxygen through a face mask for about 15 minutes—has been shown to provide fast, significant relief for many.
TENSION-TYPE HEADACHES A few years ago, the medical community replaced the term tension headaches with tension-type headaches (TTH) after research using electronic sensors revealed that tension in the neck and head muscles does not appear to spark the characteristic symptoms of this problem: soreness in the temples and the feeling that there’s a tight band around the head. TTH is extremely common: 67 percent of men and 80 percent of women will experience these headaches at some point in their lives.
TREATMENT Episodic tension-type headaches can generally be treated successfully with over-the-counter analgesics. Patients with chronic TTH often respond well to migraine medications.
ORGANIC HEADACHES If you’re like many other people, when you get a severe headache, you worry you may have a serious medical problem such as a tumor, aneurysm or hemorrhage. You probably don’t—headaches caused by those conditions are quite rare. Still, if you develop what you consider “the worst headache in your life,” possibly but not necessarily accompanied by loss of balance, seizures or speech difficulties, seek emergency medical attention pronto, since you could be dealing with a potentially deadly situation in which minutes can make a difference in the outcome.
[MIGRAINE AND HEADACHE RESOURCES]
AMERICAN HEADACHE SOCIETY COMMITTEE FOR HEADACHE EDUCATION: Its site provides a national directory of physicians who treat headaches; some, but not all, are certified specialists. It also supplies helpful patient tools, such as printable headache diaries.
NATIONAL HEADACHE FOUNDATION: The largest voluntary organization for the support of headache sufferers, NHF delivers tons of up-to-the-minute information on migraines and headaches on its site. Check out Headache U, info on support groups and pen pal programs, and comprehensive physician finder.
MIGRAINE RESEARCH FOUNDATION: Raises money for studying the causes of migraines and possible treatments. The website includes information about migraines and a directory of physicians certified in headache medicine, as well as helpful links to other migraine organizations and resources.
MAGNUM: MIGRAINE AWARENESS GROUP—A NATIONAL UNDERSTANDING FOR MIGRAINEURS: Founded by a migraine patient, this site offers extensive information about migraines, migraine treatment, disability coverage and clinical trials. Includes a list of headache specialists, many of whom are endorsed by MAGNUM.
MIGRAINE AND HEADACHES COMMUNITY: An active, physician-moderated community where migraine and headache patients share information about symptoms, treatments and coping strategies.
Originally published in the October 2011 issue of More.
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