They
didn't. Soon my textbooks became useless, the numbers inside them
now just incomprehensible scratches of ink. I couldn't read, couldn't
write, was too woozy to participate in gym class. I felt like a
zombie.
A
month after my first dose, I fell down a flight of stairs. It was
at a friend's party, and thirty to forty people watched as I fell.
I wasn't hurt. But as I lay on my back, my brain was so foggy from
the medication, I couldn't process what had just happened. My mom
had to pull me out of school, at least until my confusion subsided.
It took a few days.
Lying
in bed that week, I thought about what my medication was supposed
to do, and what it was doing to me. Tegretol had stopped my seizures,
but the havoc it wreaked on my brain was worse than the seizures
themselves. I wondered if there was a better way.
Most
neurologists agree that certain factors can trigger seizures: lack
of sleep, forgetting to eat and suddenly stopping medication. But
the medical community isn't of one mind on whether a fourth factor
- stress, specifically psychological stress - can trigger an attack.
Donna
Andrews and neurologist Joel Reiter believe stress can cause seizures.
And the epilepsy treatment they have designed is based on that belief.
Andrews'
theory is that rage, panic and worry can create dangerously erratic
neural firings in everybody, not just epileptics. In people without
epilepsy, these erratic firings don't cause seizures because their
seizure threshold, or ability to tolerate irregular bursts of cerebral
electricity, is higher. But in epileptic patients with damaged neurons
already prone to overfiring, these electrical surges can create
seizures.
On
her research center's website, Andrews is emphatic about this point.
"Seizures," she writes, "are triggered by emotional reactions and
stressful situations." Consequently, epileptics who seek treatment
at the Andrews-Reiter Research Program are given training in relaxation
and deep breathing. Patients are asked to discuss the thoughts and
feelings that preceded their recent seizures. If patients can learn
to relax and resolve their psychological issues, Andrews explains,
their brains will stop producing erratic electrical bursts and begin
to produce smooth, low-voltage electrical flows. According to Andrews'
theory, epileptics who learn to produce this smooth steady current
will stop having seizures because they will no longer produce the
electrical bursts that cause them.
It's
not a belief shared by many neurologists. In fact the vast majority
dispute any connection between a patient's psychological state and
epileptic attacks. Most dismiss a psychological treatment out of
hand.
"Taking
medication is the way to stop seizures," says Susan Herman, a neurologist
at the University of Pennsylvania . "It wouldn't be inappropriate
for patients to reduce their level of stress. But I certainly wouldn't
tell patients that it would make their lives better. If they sought
such a treatment in lieu of traditional medical approaches, it could
potentially be harmful."
Herman
takes particular exception to Andrews' assertion that she teaches
patients to abort seizures that are in progress. Andrews does this
by encouraging patients to recognize the first signs of a seizure,
such as a vision of strange lights or the sound of an abnormal ringing.
These initial symptoms of a coming seizure are called auras, and
they are technically small seizures themselves, seizures localized
to one portion of the brain. By relaxing and breathing deeply when
an aura begins, Andrews says, patients can slow their neural firings
and prevent a seizure from spreading throughout the whole brain,
rendering the patient unconscious.
"I
don't know of any evidence that deep breathing can stop an aura,
and I do not recommend it to my patients," Herman says.
Andrews'
theories do have their defenders. Carl Bazil, a neurologist at Columbia
University, believes psychology has such a profound role in triggering
seizures that, he says, he has seen agitated patients purposely
provoke seizures and relaxed patients successfully stop them. "What
we're dealing with here is overactive thought," Bazil says. "The
seizures are the same range of electricity that produces thoughts
and feelings, only in epileptics, there's an abnormal discharge.
"I
believe people can alter their seizures," Bazil says, "either bring
them on or stop them. And if we can see how patients stop them,
then we can teach others to do it. If stress really is a part of
epilepsy, then reducing stress might really improve things. You
certainly can't take the stress out of people's life, but you can
teach their body to react to it in a different way."
Andrews'
psychological approach to epilepsy was born out of personal experience.
Thirty-eight years ago, at the age of 18, she contracted a life-threatening
case of viral encephalitis, which inflamed her brain and left her
in a coma for a month. When she regained consciousness, her mental
faculties had been devastated. She had profound memory loss and
could barely talk or think coherently. She also had developed severe
epileptic seizures, brain-scattering cerebral fits that struck her
up to ten times a day. Doctors placed her on medication, but the
medication did nothing to quell the seizures.
After
a year of persistent seizures, Andrews began to despair. "I was
trying to think of a way to kill myself. I felt like I was a terrible
burden to my parents and I didn't want to live," she says. "Then,
all of a sudden, a light went on in my head. The doctors had told
me that the damage in my brain was there all the time. Then I thought,
'If the damage is there all the time, why aren't I having seizures
all the time?' I started asking myself a million questions, like
what I was thinking before each seizure, what brought them on."
Andrews
says she started to see a link between moments of severe frustration
and anger and her epileptic attacks. She began dealing with those
emotions, she says, and working on resolving them. Within three
years Andrews stopped having seizures. Three years after that she
came off her epilepsy medication. She hasn't had a seizure in 34
years.
In
1980 Andrews teamed with Joel Reiter, a neurologist trained at Harvard
and the University of California-San Francisco. Over 23 years, they
have treated thousands of patients with both the traditional pharmaceutical
approach and Andrews' alternative psychological approach. The combination
has proved highly successful, resulting in far more seizure-free
patients than witnessed in other clinical trials in which patients
are treated with medication alone. Andrews and Reiter have chronicled
this success in a book, "Taking Control of Your Epilepsy," and in
four peer-reviewed studies, three of which appeared in the medical
journal Seizure. Despite such mainstream exposure, Andrews
and Reiter remain fringe figures in the neurological community.
Few know of them and even fewer know the results of their studies.
I
was expecting Donna Andrews to be an imposing figure, but Andrews
- like her epilepsy facility itself - was not quite what I had in
mind. She was short, round and a little wrinkly, but warm and buoyant,
with the engaging wheeze of a happy ex-smoker. When my mother and
I arrived at her Santa Rosa research center, she rushed out and
hugged me, then escorted us to a nearby house, where we would stay
for the five days of my treatment.
At
9 the next morning Andrews came to the house and sat down on the
carpet. With a skeptical expression, I joined her. We talked about
each of my major seizures and a few of my recent auras. She asked
me to tell the story of each, not just what happened directly before
the seizures but in the days leading up to them. I told her, and
I remember thinking how strange it was that in all the years I had
been seeing neurologists, never once did any of them ask about the
circumstances preceding my seizures. Frequently I was asked whether
I had taken my medicine, whether I was eating well and had gotten
enough sleep. But the story of each seizure never came up.
Now
describing the circumstances of each episode, I started seeing connections,
links between my anger and my seizures that suddenly seemed obvious.
Not only had I been angry before each seizure, but each time, rather
than releasing that anger - yelling at Sam or my tyrannical boss
- I stifled it instead. I started to wonder whether my seizures
were triggered by that rage imploding inside me. Andrews said my
rage did appear to be a factor. She told me that emotions like anger
and frustration can trigger seizures in epileptics with damaged
neurons. And that by learning techniques to deal with those emotions,
I could prevent those seizures.
Then
she had me lie down on the carpet and led me through a relaxation
exercise. I was taught deep, diaphragmatic breathing and was asked
to close my eyes and imagine myself traveling through a host of
relaxing settings: a forest, a beach, a river. Later that day Andrews
gave me a relaxation tape that followed a similar journey and instructed
me to listen to it when I felt anger welling inside me again.
She
also gave me her workbook, "Taking Control of Your Epilepsy," which
she co-wrote with Reiter. Following the workbook, she and I went
over alternate ways to handle my feelings, things to do instead
of bottling them up. We talked about the difference between passive,
aggressive and assertive communication. She encouraged me to be
less passive and more assertive.
Perhaps
the most immediately helpful technique was learning to stop the
sensory oddities that preceded my seizures, like flashing lights.
Andrews explained that these auras were the first signs of a major
seizure. If I could recognize the lights, I could do something to
cut them off - breathe deeply, relax, anything to resolve the underlying
tension. By relaxing, she said, I could decrease the electrical
activity in my brain and prevent my damaged neurons from firing
erratically. Quelling those neurons would stop the flashing lights,
preventing the onset of a major seizure.
Eventually,
she said, I would learn to sense my brain's electrical tension and
quell it even before my aura began. To develop this skill, I was
asked to pay attention to the sensations that came before my aura.
I
said I would try. But I was highly skeptical. To say I could abort
a seizure by relaxing and breathing went against everything I had
been taught.
Andrews
left me that night with this thought: The damage in my brain existed
all the time. Yet I wasn't having seizures all the time. What was
happening in my life on days I had seizures that wasn't happening
on all the days I was seizure-free? In bed that night I mulled over
that thought and reflected on the seizures I'd had. The emotional
trigger behind each seizure became clearer and clearer to me. Though
my seizures were all baffling at the time, none of them, I now realized,
came out of the blue.
In
the following days I met with Reiter, who told me to continue taking
my normal dosage of medication. Soon after, my mother and I packed
up and set off for home. I promised to make daily diary entries
of my seizures and auras, along with detailed descriptions of the
circumstances. Andrews and I planned to speak on the phone once
a week.
In
the weeks and then years following my trip to Santa Rosa I came
to believe that Andrew's understanding of epilepsy was correct,
that defusing my anger and slowing down my cerebral electricity
would prevent my seizures. I was soon able to trace a definite progression
from high stress to a seizure. First I would feel a pressure in
my eyes, then the lighting in the room would look strange, as if
there were lights coming from places where in reality there were
no lights at all. After that the room would look like a photographic
negative of itself, then came the light in the upper-right-hand
corner, then the light would pulse or flash, then my right eye would
go black. Then the seizure.
Soon
I became adept at cutting the sequence off at the first sight of
a light in the upper-right-hand corner of my vision. Later, I could
abort the sequence at the very beginning, at the first sense of
pressure in my eyes. I became so good at this that within two months
I was able to stop both my seizures and my auras. Ten months after
that, I was able to secure the driver's license that had eluded
me for four years.
In
1981 Andrews and Reiter submitted their psychological treatment
to its first clinical study. The study's scope was limited. Five
patients from Reiter's private practice were invited to participate
in the experiment. Each of them had a long history of epilepsy and
continued to have seizures despite taking a variety of anticonvulsant
medications.
Before
treating the patients, Andrews and Reiter asked each of them to
keep detailed records of every seizure they had over four weeks.
This established a baseline seizure frequency against which their
improvement could be judged. At the end of the four weeks, Andrews
began to counsel the patients. She taught them about pre-seizure
auras and shared her theory of a psychological trigger for epileptic
attacks. Patients were asked to pay attention to the emotions that
preceded their seizures and work on resolving those feelings. As
part of that effort, patients learned deep, diaphragmatic breathing
and other relaxation techniques.
All
of the patients continued to take their normal dosage of epilepsy
medication.
For
two years, Andrews and Reiter followed their patients' progress
and recorded each of their seizures. Their study showed a marked
improvement in the health of all five patients. The seizure frequency
of each subject decreased steadily over the two-year follow-up.
One patient who was having three seizures a month stopped having
seizures altogether and remained seizure-free after her doctor withdrew
her medication. A second patient who was having three to six seizures
a day also stopped having epileptic attacks and remained seizure-free
after his medication was decreased.
The
success of the pilot study spurred Andrews and Reiter to repeat
the project, this time on a larger scale. This second study covered
83 patients. Though the scale was larger, the study's structure
was much the same. Each of the patients had chronic seizures uncontrolled
by medication. Each was studied for several weeks before entering
the experiment to establish a baseline seizure frequency. Once in
the program, patients were given training in deep breathing and
relaxation and were counseled on how to resolve emotionally difficult
situations.
All
of the patients continued to take their normal dosage of epilepsy
medication.
Andrews
and Reiter then charted their patients' progress through several
years of follow-up. The results surprised even Andrews.
Of
the 83 patients in the study, 69 of them (83 percent) became completely
seizure-free in the months following treatment. Among patients who
were having fewer than six seizures a month, 90 percent gained complete
seizure control.
In
1992 Andrews and Reiter published these results in the epilepsy
journal Seizure. The results impressed several neurologists,
including Dr. Bazil of Columbia University 's Comprehensive Epilepsy
Center, who read the study recently.
"This
study is really a breakthrough," Bazil says. "It suggests these
psychological treatments have a powerful benefit for patients. And
they're almost never done. Neurologists tend to think of psychological
stress and seizures as having more of a wishy-washy connection.
These studies suggest that's not the case."
Bazil
says that before reading the Andrews/Reiter study, he commonly treated
patients with medication alone - prescribing anticonvulsants like
Depakote, which eliminated seizures in nine percent of patients
who took it in clinical trials, and Topamax, which stopped seizures
in 13 percent of patients. Today, says Bazil, he is more inclined
to suggest psychological counseling in addition to drug therapy.
"The
reason I didn't do so before was because I was ignorant. I was unaware
of this type of treatment. And I imagine there are many neurologists
in my situation."
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