the summer of 1998 I was having these visual seizures six and seven
times a day. I was living in Los Angeles at the time, doing a college
internship at an independent film company. My boss there was a tyrant
of sorts. He was controlling and mercurial, and my failure to satisfy
him brought blistering disapproval. When his yelling became too
intense, I'd slip out of the office, and the lights would flood
into my eyes. The seizures felt good in a way, like a release, a
purge of the electrical pressure that built up each day. They were
also deeply scary. I never knew when they would stop, whether they
would leave me dazed or blinded.
made an appointment at UCLA's Epilepsy Program. A neurologist there
examined me and reviewed my file. He looked glum. Unfortunately,
he said, there was nothing more that neurology could do for me.
I was taking two anticonvulsants daily, 400 milligrams of Tegretol
and 900 milligrams of Neurontin. Beyond taking my pills, he said,
there was nothing I could do to prevent future seizures. He told
me to eat well and get plenty of rest. He also asked that I keep
faith in the effectiveness of my medication.
faith was hard as my seizures grew worse and my medication did little
to slow them down. By the end of the summer, I came to believe that
my anticonvulsants were useless. I was on my own, and that made
me feel helpless. I woke up each morning afraid of the day's coming
seizures. I went to bed, imagining the electricity racing through
my frayed neural network, wondering if it would go haywire now.
Or now. Or now. I lived in nervous anticipation. Over the course
of a summer, that proved even worse than the seizures themselves.
I couldn't take it anymore, my mother drove down to see me. She
brought with her a brochure for the Andrews/Reiter Epilepsy Research
Program, an alternative treatment facility in Santa Rosa, Calif.
The Andrews/Reiter program takes a psychological approach to epilepsy.
In addition to seeing a neurologist, patients receive counseling
from a psychologist. During a five-day stay at the research facility,
they also learn deep breathing and other relaxation techniques.
The theory behind the program is that psychological issues and mishandled
stress can trigger seizures in epileptics. According to the theory,
if epileptics resolve those issues and learn to handle stress, they
will have fewer seizures.
whole program sounded totally fruity to me. A talking cure? Give
me a break. This was voodoo medicine, and I wanted no part of it.
At least, that's what I told my mother.
real reason for rejecting the program was a bit more complex. The
idea of spending five days talking about my epilepsy petrified me.
For years I had said little about my illness and felt acutely uncomfortable
when the topic came up. Between major seizures, I harbored a fantasy
that I didn't have the disease, that the pulsing red lights were
merely illusions. I never went to the epilepsy support group my
mother attended. I never learned anything about seizures that wasn't
fed to me by my doctors. I had no reason to. Every doctor insisted
I could do nothing to stop seizures except take my pills. I grew
comfortable with that lack of power. It meant I never had to face
being sick. Now I was being asked to go to this program, to face
my sickness head-on for five days. No way. I wasn't ready for that.
Not yet, anyway.
Jewish mothers wait for no man. Over fruit salad at a Santa Monica
café, my mom informed me that I was already signed up for
the Andrews/Reiter program and that my five-day treatment began
a few days from now. I couldn't help but smile. "All right," I said.
"All right." I quit my internship, stuffed my clothes into her car,
and we drove out of Los Angeles, through the corn and wheat fields,
past the wine country, to the podunk town of Santa Rosa, Calif.,
50 miles north of San Francisco . On a street dotted with coffee
shops stood a small professional office with a sign that read "Andrews/Reiter
Epilepsy Research Program."
were plenty of parking spots.
human body runs on electricity. A steady current from the brain
makes the eyes see, the lungs breathe and all the other organs function.
Microscopic cells in the brain known as neurons produce this electrical
charge. When one neuron fires its charge, nearby neurons are prompted
to do the same, triggering a sequence of cell firings that sends
a coordinated message to the rest of the body.
least, that's the way it works in the normal brain. In the brain
of a person with epilepsy, there are pockets of diseased neurons
that make the electrical message go haywire. These neurons are instigators
of an electrical riot. When one fires at random, nearby brain cells
begin firing erratically as well. Together, these wild electrical
pulses send a frazzled message to the body, resulting in a seizure.
The limbs spasm; the bladder weakens; the eyes roll to the back
of the head.
grow more intense as neurons that are behaving properly get recruited
by the rebellion and begin to fire at random.
quash these electrical uprisings in the brain, scientists have developed
medications designed to keep healthy neurons from breaking ranks.
If the diseased neurons begin to fire erratically, medication should
prevent healthy cells from also shooting wildly. Without the support
of nearby healthy cells, diseased cells will eventually return to
firing in sequence. Their brief revolt may cause the patient to
feel dizzy or see a strange series of lights, but these sensory
oddities last only a minute or so. After that, the brain resets
and a smooth electrical flow begins again.
advent of medication has been a fantastic step forward," says Jonathan
Edwards, a neurologist at the University of Michigan. "Today medication
is first-line therapy, the first set of troops we send to the trenches.
And for two-thirds of patients with seizures, it works."
one-third, it does not. Those patients have what's called refractory
epilepsy. Despite medication, their healthy neurons continue to
be recruited by misfiring cells. As more and more cells begin haphazard
firing, electrical chaos spreads to all parts of the brain, producing
a major seizure and eventually a loss of consciousness.
are four million epileptics in the United States, according to the
Epilepsy Institute; 1.3 million continue to have seizures despite
medications are not perfect," says Michel Berg, a neurologist at
the University of Rochester. "About 50 percent of patients respond
to the first drug, another 10 percent to the second drug, and after
that, it's a crapshoot."
rule," says Berg, "is that if we haven't been successful with two
medications, and the patient is not a candidate for surgery," which
attempts to remove damaged neurons, "we will just continue trying
new medications. I'll go through all of them if I have to. But the
fact is that in those situations, you have a 1 in 25 chance that
a medication is going to control the seizures. Every once in a while
you have a resounding success. It's rare but it happens."
clinical trials for these medications show just how rare those successes
are. Take Depakote, for example. The popular anticonvulsant underwent
a multi-clinic, placebo-controlled study in which patients added
Depakote to their existing drug regimens. The study tracked the
health of 144 patients for 16 weeks.
the patients taking the real medication, only nine percent stopped
having seizures. Twenty percent actually had more seizures than
before. Seven percent saw their seizure frequency double.
drug's manufacturer, Abbott Laboratories, funded a second study
in which patients were treated with Depakote alone. The results
of that study are even bleaker. Of the 265 patients in the trial,
only four percent stopped having seizures. Thirty-seven percent
had more seizures than before. Nine percent saw their seizure frequency
is a relatively old medication - it was approved in 1983 - and more
recent drugs have proved more effective. But even the hottest new
drugs are by no means cures. The anticonvulsant Topamax, for example,
was approved to much acclaim in 1997. But in clinical trials, 13
percent of patients who added the drug to their regimens stopped
you pick up 13 percent, I know it sounds terrible," says Dr. Edwards.
"But you're dealing with refractory populations, patients with uncontrolled
epilepsy. You'd like to find a drug that cures everybody, a magic
today's medications are far from magical. All have been linked to
potentially serious side effects. In drug trials, 38 percent of
patients taking Lamictal became dizzy, 22 percent had muscle spasms,
9 percent began vomiting. Three percent had cardiovascular hemorrhages,
2 percent had anal hemorrhages, and 2 percent saw the heads of their
penises grow inflamed.
studies on Cerebyx, 49 percent of patients experienced intense itching,
44 percent developed an involuntary movement of the eyeballs, 9
percent heard a persistent ringing in their ears. Studies on Depakote
warn that the drug can cause liver failure and pancreatitis, which
begin with malaise and weakness and move "with rapid progression
from initial symptoms to death." In its study on Tegretol, Novartis
Corporation notes that the drug is responsible for four deaths,
including that of a 14-year-old girl, who died of cardiac arrest.
Ko, a neurologist at the University of Southern California , says
doctors are well aware of the potentially serious consequences of
pharmaceutical treatments. Still, he says, epilepsy is so difficult
to control - and medication often so effective - that the risk of
side effects simply has to be taken.
medication, the potential for side effects is there. There's no
doubt about that," Ko says. "But if a patient continues to have
seizures, you have to go for the medication option."
Dr. Berg explains, "It's hard to imagine diagnosing epilepsy and
not prescribing an anti-seizure medication."
had my first seizure on Thanksgiving Day, 1991. I was 13 years old,
half way through my last year of middle school.
night before the seizure I attended a Tom Petty concert with my
best friend and his father, Sam. Sam was much like a father to me.
I spent my pre-teen years in his home, chatting through the evenings
about school, sports and girls. We shared a passion for puns, and
a tendency to keep laughing long after everyone else had stopped.
In the absence of my own father, who skipped town when I was two,
Sam became my guiding paternal influence.