Against the Migraine
Thirty years. Three decades. That is about how long Ellen Blau has suffered from headaches.
Blau, now 46 and support group coordinator for the National Headache Foundation, recalls being 16 when the headaches began.
"At first they were only a nuisance that coincided with my menstrual periods," she said. "But by the time I was in my twenties they had become debilitating."
Like many other migraine sufferers, Blau consulted a host of physicians in her search for pain relief. She tried the various medications they prescribed and found most didn’t work. Some worked for a while, however, they eventually stopped being effective.
"But I don’t recall any doctors suggesting I change my lifestyle, and even today some doctors don’t give a lot of credence to lifestyle changes," Blau said.
When she became pregnant at age 25, the headaches stopped completely. But they returned, with a vengeance, after the birth of her son, Jason.
According to MAGNUM, a migraine awareness group based in Alexandria, approximately 65 percent of female migraine suffers complain of headaches before, during, or immediately after their menstrual periods, while more than three-quarters of migraines reported a complete eradication of headaches during pregnancy.
By the time Blau was in her thirties, she was so sick that she would spend about half of every week in bed suffering from migraine pain. But she had a young child to take care of.
"I would set my alarm clock for 3 p.m. each day. Get up and get dressed before Jason came home from school," she said recalling that low point in her life. "I would pretend to be OK and spend time with him, but as soon as he went off to do his homework I would crawl back into bed."
The day that Blau decided she could either die or get better was a turning point in her life. She spent two weeks as a hospital in-patient learning biofeedback and relaxation techniques and starting on an MAO-inhibitor, an anti-depressant she calls a drug of last resort.
"Certain foods and medications taken in conjunction with this drug can make your blood pressure soar, so doctors don’t like prescribing it," Blau said. After staying on the drug for seven months its effectiveness waned. Blau says that at that point she changed her attitude and decided not to be sick any more.
She began using the biofeedback and relaxation techniques she had learned, but had never put into consistent practice. And she looked for a drug regimen that she could live with long term.
For the past ten years, a combination of drugs including an anti-depressant, an anti-inflammatory, and a muscle relaxant combined with psychotherapy and lifestyle changes has reduced her number of attacks to a manageable two to three a month. When she does get a headache she also takes Imitrex, a drug approved in 1993 specifically to treat migraine.
Blau also has carefully identified the triggers that often bring on migraine. "But the illness is a puzzle for migraineurs because some days we can eat a specific trigger food and not get a headache. So we tend to cheat, especially if it involves eating a favorite food like chocolate. Then the next time we eat the food we get a headache. Or we get a headache in the absence of any triggers at all," she said frustration filling her voice.
Michael John Coleman, MAGNUM’s executive director, also stresses the importance of paying strict attention to triggers. "Uncontrollable triggers include weather patterns and menstrual cycles, while controllable triggers include bright light, aspartame (the ingredient in some artificial sweeteners), and alcohol. The severity and frequency of migraines for one person depends upon how many triggers that individual must experience before a migraine is induced, and the combination is different for each person," he said.
Far Reaching Effects
Migraine is an illness that is devastating. And it extends far beyond the individual suffers.
"Many marriages don’t survive when one partner is a migraineur because that person may be afraid to socialize, travel, take vacations," Blau said. [Migraine suffers] suffer from a lot of anxiety and panic, and their partners may bet sick of the whole situation."
Coleman, a migraineur since age six, knows firsthand about that aspect of the disease.
In the early 80s he was married to a nurse he described describes as loving and very supportive. "But the illness wore her down, and the lack of compassion of her family and others telling her that the disease was my fault, that I couldn’t handle the pain. And that I was faking the pain to get attention tore us apart," he said. "My in-laws used to say, ‘Michael, are you still pretending to have those little headaches to get attention?"
Migraines also interfered with Coleman’s professional life. He was forced to give up his job as an art director with the US Navy, a position he had held for six years. Then he lost the art studio he had opened, his "life’s work," when he was unable to work enough hours each week.
Now he devotes himself to informing migraineurs and the general public about the myths and reality, the treatment and management of migraine. "We are far from a cure let alone a sure-fire treatment for migraine," he said. "But understanding that migraine is a real and debilitating disease goes a long way toward improving the quality of life for migraines and their loved ones."
Unlike migraineurs like Coleman who see the condition purely as a neurological disease, the NHF’s Blau feels that emotions play a major role. Her personal experience, combined with the history of other migraineurs, has convinced her that some past traumatic event prevents certain suffers from rising above their illness. "The average person has 50 percent control over his or her headache.
Blau firmly believes in support groups and lifestyle changes as adjunct therapies to the medical management of migraine pain.
"People need to learn that they are not alone, and that there is hope," she said. "And biofeedback and relaxation techniques are incredible tools for headache sufferers, if people don’t stop using them as soon as they feel better."
You don’t have to convince David Barwell that biofeedback plays an important role in treating migraine. The Gaithersburg, Md. Man has taught these self-monitoring techniques to more than 2,000 headache sufferers over the past 22 years.
After taking a client’s detailed history to determine if underlying conditions require medical attention he uses physical models to explain how reactions to stress- such as jaw clenching and teeth grinding- upset the trigeminal nerve and lead to headache. According to Barwell this nerve goes through the jaw to the frontal sinuses, eyes, forehead and shoulder.
"People have different symptoms with their headaches depending on which branch of the nerve is upset," he said. "But most people are aware that they have headaches at time of tension.
Barwell uses surface electrode to measure muscle tension in the forehead. His clients wear earphones that emit clicking noises in proportion to the tension registered. While a frown may measure a "90" and result in a rapid set of clicks, relaxing that frown may read "50" and be accompanied by a much slower series of sounds.
"I teach them to relax certain body parts and do breathing exercises. Then I can measure and prove objectively that they are relaxing. The feedback is in their ears," he said.
Barwell says patients can get results after only six one-hour sessions if they are sufficiently motivated to practice for an hour every day and eliminate habits such as chewing gum and using the shoulder to cradle the phone receiver.
Maureen Lyon, an Alexandria, Va.-based psychologist who works with patients on stress management and pain control, says the relationship between psychological factors and migraine pain has not been proven by research. "But hypnoanalgesia, a method of using a relaxed hypnotic state to manage pain, is a well-supported approach," she said.
When migraineurs use self-hypnosis they still have the same amount of pain, measurable for example by rising blood pressure, but they experience it as being outside of themselves and so find it more tolerable.
Lyon also teaches highly suggestible migraineurs other techniques that are designed to give them more control over their condition. "Using visualization people learn to focus on the pain and visualize it getting bigger and then smaller," she said. "Or they can phone someone with whom they have a particularly satisfying relationship and use the distraction to help put the pain in the background.
"Seeing a physician first is essential for any migraine sufferer says Lyon, who sees her treatment as an adjunct to medical therapy. "It is important that migraineurs understand that they haven’t caused their condition and that they can have an optimum quality of life under the circumstances," she said.
Other alternative treatments for migraine include acupuncture, which is believed to remove obstructions to the flow of energy, daily doses of Vitamin B2, a possible preventative, and feverfew, a herb that may reduce inflammation and give relief from nausea and vomiting.
Diagnosis and treatment
Doctors used to think that migraine pain resulted from a widening of the blood vessels in the membrane surrounding the brain. They also believed that "aura", which may consist of flashing lights, blind spots, slurred speech, or numbness on one side of the body that warns about 10 percent of migraineurs of an impending attack was caused by reduced blood flow during an initial narrowing of these vessels.
Unfortunately doctors, who through misinformation tended to always connect migraine with aura, often failed to recognize migraine in the overwhelming majority of migraineurs who don’t experience this phenomenon.
"During the aura phase there is a reduction of blood flow, but what initiates that are chemical changes," said Stuart Stark, M. D., an Alexandria-based neurologist with a special interest in treating headache sufferers. "But the most common type of migraine is migraine without aura, occurring in about 85 percent of migrainuers."
Stark also says that about 5 percent of migraine suffers experience only visual symptoms such as seeing bright, intense lights or sparkles instead of having headache pain. And in children and adolescents, vertigo (dizziness) with or without nausea is the most common migraine symptom.
Current migraine research indicates that a signal from the brain stimulates the pain sensors in the trigeminal nerve system, which runs from near the center of the skull up and over the eyes, and toward the forehead. Certain protein fragments released by these pain sensors cause the blood vessels to widen and further irritate the nerves that control pain, vision, and nausea.
"The symptoms of migraine are felt to be due to an abnormal sensitivity of the brain in response to various triggers," Stark said. "And there is ample evidence that genetic factors are important because the vast majority of migraine suffers can identify a first-born relative with similar headaches."
The discovery that serotonin, a multi-purpose chemical normally found in the brain, can stop migraine pain by binding to receptors on the trigeminal nerve, 5HT, has led researchers to develop a new class of drugs called triptans. Triptans are referred to as "abortives," meaning their purpose is to reduce the severity and duration of the migraine symptoms when taken at the first sign of an impending attack.
Sumatriptan, available as Imitrex since 1993, is a selective triptan, meaning it activates the helpful effects of serotonin while blocking the less desirable ones such as nausea. Once available only orally or by injection it is now also marketed as a nasal spray, insuring rapid delivery to the brain. "Because nausea and vomiting are characteristic of many migraine attacks, the nasal spray provides a treatment option in which the drug is directly absorbed through mucous membrane of the nose, thus bypassing the stomach," said Seymour Diamond, M.D., director of the Diamond Headache Clinic in Chicago.
According to Diamond DHE, a drug that has been available for decades to halt migraine attacks, was approved in a new nasal spray form in 1997 under the name Migranal. In clinical trials it provided relief for up to 70 percent of patients within four hours of a single dose, and it remained effective in most patients for 24 hours.
Other drugs to receive recent FDA approval are zolmitriptan (Zomig and Zeneca) and naratriptan (Amerge). These drugs tend to work quickly and provide long relief, a boon for migraine sufferers.
According to Stark patients in whom abortives don’t work well or whose severity and frequency of migraines interferes significantly with their quality of life may benefit from preventive drug therapy.
"But we want to avoid preventatives because of their potentially harmful side effects," he said, "and we aim to get people off them after six months."
Doctors prescribe general pain management using prescription and non-prescription analgesics when migraineurs don’t respond to abortives within two hours. But overuse of these drugs can lead to "rebound headaches," adding further pain and suffering.
In the US alone about 25 million people suffer from migraine. According to MAGNUM, the cost to industry and the health care system due to migraine is thought to be as high as $17 billion a year. And even though most migraine sufferers attempt to continue working through pain that often is incapacitating, many of them find their productivity and income fall over time.
"One of the latest studies on the economic cost of migraine found that the unemployment rate in individuals with severe migraine is 10 to 20 percent, several times that of the general population," Coleman said.
Migraine and medicine
Coleman says that migraine is the top misdiagnosed disease partly because doctors who were in medical school before 1994 received inaccurate and inappropriate information. And the fact that many doctors don’t take migraine seriously can be as disabling to the sufferer as the disease itself.
"Many emergency rooms have been known to treat migraneurs poorly, making them sit and wait for hours in the hopes they’ ll go away," Coleman said. "Then the managed care providers won’t pay the bill because they claim migraine isn’t life threatening."
According to neurologist Stark, because blood vessels are involved in migraine people can suffer a stroke from the condition.
"Women with migraine with aura are move likely to have a stroke if they are using birth control pills and have other risk factors such as smoking," he said. "But migraine without other risk factors is itself a low risk factor."
The reason many migraine sufferers fail to get a proper diagnosis and treatment is a factor of time Stark says. "With managed care and the state of health care in general, doctors have to see more patients, but the evaluation of a complaint of headache requires a lot of time. Many doctors may not take the time to get all the information they need and so the patient is treated symptomatically. Also, so much information has changed in the past two decades that the treatment of people with headaches has been revolutionized. Keeping up with the changes is a specialty in and of itself."
Stark also says that a lot of migraine sufferers also have other conditions such as chronic sleep disorder, depression, or obsessive-compulsive disorder, and doctors need to unlock their whole history.
"Primary physicians such as general practitioners and even general neurologists aren’t always picking up on these," he said.
Migraine and women
For years migraine was considered a women’s disease because only about one-fifth of adult migraine sufferers are men (the numbers are roughly equal in childhood) and because migraine can be triggered by hormonal changes that are unique to women. Some women migraineurs, whose headaches abated or disappeared during pregnancy, report being told by doctors to keep on having children. Countless other women were subjected to needless hysterectomies as a "cure."
But the women’s movement seems to have provided a major impetus for research into migraine causes and treatments. "With women assuming larger numbers of major roles in the business world it was noticed when they were sidelined with migraine pain," Coleman said. "When they miss two to three days a month because of a disability for which they aren’t being treated it’s a hard thing to hide."
The flip side of this is that both men and women face discrimination in the workplace when it becomes known that they have migraine. Migraineurs are often told they cannot do a particular job because it is stressful and stress causes migraine.
Coleman’s group, MAGNUM, is fighting to increase the public awareness of migraine and to overcome the myth that migraineurs are unable to handle stress. The group is also working with Sen. Charles Robb (D-Va.) to get intractable migraine included in the Code of Federal Regulations Listing of Impairments, Parts A & B, as a neurological impairment similar to epilepsy.
While many people use the term migraine to describe a really bad headache, Coleman says the terms are not interchangeable. "Headache is a symptom, but migraine is a disease," he said emphatically. "It is disease with a complex nature that is highly adaptive and unique to the individual who suffers from it."
As a physician, Stark seems to agree with Coleman’s assessment of the uniqueness of migraine. "The migraine disorder has seven sub-categories, and no two patients have exactly the same symptoms," he said. But ending on an optimistic note Stark added, "Nowadays there are lots of things like medication, dietary changes, and biofeedback that patients can try and control their lifestyle and reduce their triggers for migraine."