AGAINST THE MIGRAINE
Patients battle disease
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 didnt work. Some worked for a while,
however, they eventually stopped being effective.
"But I dont recall any doctors suggesting I change my
lifestyle, and even today some doctors dont 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 dont 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, MAGNUMs 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 dont 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 couldnt 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 Colemans 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 "lifes 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 NHFs 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 dont stop
using them as soon as they feel better."
You dont 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 clients 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
"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 havent
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 dont experience this
"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 dont 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 dont 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
"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,"
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 dont
take migraine seriously can be as disabling to the sufferer as the disease
"Many emergency rooms have been known to treat migraneurs
poorly, making them sit and wait for hours in the hopes theyll
go away," Coleman said. "Then the managed care providers wont
pay the bill because they claim migraine isnt 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 arent always picking up on these," he
Migraine and women
For years migraine was considered a womens 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 womens 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 arent being treated its 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.
Colemans 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 Colemans 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