Joshua Kors is an investigative reporter for The Nation, where he covers health issues. He is the winner of the National Magazine Award, George Polk Award, IRE Award, the National Press Club’s Hume Award, the Mental Health Media Award and many others. His reporting on health issues has been featured on PBS, CNN and the BBC. He also collaborated with ABC News’ Bob Woodruff on “World News Tonight” and “Nightline” investigations, part of a series on health issues in the military, which won the Peabody Award.
He has written extensively about his own epilepsy. The following article was completed in May 2003, as his master’s thesis for the Columbia School of Journalism. This version has been updated to include reporting on his epilepsy experience in the 8 years since its original publication to October 2011.
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The Talking Treatment
Looking at a New Approach to Epilepsy
Even today I have a hard time talking about my epilepsy.
Though it’s been 11 years since my first seizure, five years since I last saw the inside of an ambulance, I still feel my stomach constrict when the topic comes up.
There are reasons, I suppose. In a sheltered life lived in the suburbs, epilepsy was the only thing to make me deeply afraid. I felt like a captive in my own skin, prisoner to neurons that could fire without warning. My sophomore year of high school I wound up on the floor of my biology class, unconscious and shaking, my eyes rolled to the back of my head. I was rushed to the hospital, then released days later.
After that the seizures came in waves. Each began as a small neural misfire: a red light that would burst into the upper-right-hand corner of my vision. Most times the light would fade. Other times it spread, as if my field of vision had caught on fire. When the light lasted, disorientation would follow. Then my right eye would black out before I’d lose consciousness altogether. For the next nine years these lights came and went, sometimes as many as five a day, other times as little as one or two. There were good days and bad days. Mostly there were bad days.
By 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.
I 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.
Keeping 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.
When 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.
The 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.
My 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.
But 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.”
There were plenty of parking spots.
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The 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.
At 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.
Seizures grow more intense as neurons that are behaving properly get recruited by the rebellion and begin to fire at random.
To 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.
“The 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.”
For 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.
There are four million epileptics in the United States , according to the Epilepsy Institute; 1.3 million continue to have seizures despite taking medication.
“The 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.”
“My 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.”
The 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.
Of 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.
The 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 double.
Depakote 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 having seizures.
“If 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 bullet.”
Unfortunately 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.
In 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.
David 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.
“With 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.”
As Dr. Berg explains, “It’s hard to imagine diagnosing epilepsy and not prescribing an anti-seizure medication.”
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I had my first seizure on Thanksgiving Day, 1991. I was 13 years old, half way through my last year of middle school.
The 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.
That night at the concert, we had a bitter disagreement. I wanted a Tom Petty T-shirt. Sam said he would buy me one. At the last minute, he changed his mind. I felt betrayed. I came home in a rage.
My mother later told me that the minute I came home she knew something was seriously wrong. I was shaking with anger, and my eyes looked crazed. That night I must have known something was wrong, too. At four in the morning I crawled into my mother’s bed. Thirty minutes later I began to convulse. My eyes rolled to the back of my head, I began to shake, to drool. I urinated all over her bed. My mother called 911. Paramedics strapped me to a gurney and rushed me to nearby John Muir Hospital, where I was placed in the intensive care unit.
Doctors at the hospital diagnosed me as having epilepsy. They put me on Tegretol, a dosage of 400 milligrams a day. The effect was immediate. I had been a straight-A student up to that point, a nerd of sorts with a penchant for algebra. Once the Tegretol kicked in, computing equations became impossible. It was like my brain had been dunked into sludge. I felt my thoughts growing slower, my abilities slipping away. I slogged through my homework, hoping that somehow these side effects would fade.
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.
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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.
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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.
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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.”
In 2000 Andrews and Reiter published two more studies in Seizure. In the first, they treated 11 patients, using identical methods to their previous research. Nine of those 11 patients stopped having seizures. In the second study, Andrews and Reiter treated 44 patients and then charted their progress through 25 months of follow-up.
In that time, the health of those in the study improved dramatically. In the two months before they were treated, the study’s patients had 1078 seizures. In the final two months of follow-up, they had 20. Thirty-five of the 44 patients (79.5 percent) stopped having seizures altogether.
“Andrews and Reiter’s research in this is a significant step forward” in the treatment of seizures, says Steven Schachter, a neurologist at Harvard University and the editor of the medical journal Epilepsy and Behavior. Schachter says he has always believed that “psychological stress does something physical to trigger seizures. And too often that trigger is ignored. Treatment gets reduced to just passing out pills.”
“Andrews and Reiter are helping to break that trend. They’re serious investigators in this field,” he says.
Schachter, however, is in the minority in that opinion. The vast majority of America’s neurologists do not endorse the psychological approach of Andrews and Reiter. Many, like Dan Lowenstein of the University of California-San Francisco, say it’s flat-out absurd.
“It’s just bogus to say that if you reduce your psychological stress that you’ll have fewer seizures,” he says. “There’s not a specific way to have a person turn off a seizure. With stress and seizures, you just can’t make a one-to-one correlation.”
Lowenstein says he is not familiar with the three Andrews/Reiter studies published in Seizure . Donald Olson, a neurologist at Stanford University, also missed the studies but says he is familiar with the concept behind them.
“You have to be skeptical about that kind of stuff,” says Olson. “Psychological treatments, they have no side effects. But whether they’re effective in stopping seizures, that’s still extremely unclear. Are they some great treatment for epilepsy? I don’t think so.”
The resistance of doctors like Lowenstein and Olson show just how far Andrews and Reiter have to go before their psychological techniques gain wide acceptance. Today, 22 years after their first study, one epilepsy facility in America treats seizures with psychology: Andrews and Reiter’s.
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Their efforts, however, have not been completely in vain. In 1992 Andrews and Reiter were invited to speak before the Epilepsy League in Glasgow, Scotland. In 1999 they presented their findings at the International Epilepsy Conference in Prague , an event attended by 4000 neurologists. Reiter’s book, “Epilepsy: A New Approach,” has also found an audience. It is now in its third printing.
Still, Andrews and Reiter say they’re fighting a lonely battle and question whether it is ultimately a losing one.
“It’s been a long road,” says Andrews, a touch of defeat in her voice. “I’m getting old and my patience is wearing thin. I don’t know how long I can keep it up.” Reiter is considering retirement within the next three years, and Andrews says she’s not sure how she’d continue without him. “For our method to catch on, it’s going to take teaching in the medical schools and support from the government.”
But neither the American government nor American universities have shown any interest in backing Andrews and Reiter’s psychological approach. Dr. Bazil says that even if his epilepsy center wanted to offer patients a psychological treatment, few would be able to afford it. Most of his patients, he says, are dependent on medical insurance, and most insurance companies do not cover experimental therapies like Andrews and Reiter’s.
Treatment at the Andrews/Reiter epilepsy center costs thousands of dollars. While some insurance carriers do cover medical consultations with Dr. Reiter, patients must pay for the psychological treatment out of pocket, as my family did.
This financial hurdle is one reason why Andrews and Reiter’s approach has drawn less interest in the U.S. than in foreign nations with universal health care. Elizabeth Koeningsberg Hospital in Berlin is now conducting a study based on the Andrews/Reiter technique. The Epilepsy Association of Calgary has also been looking into their treatment, as has the Victoria Epilepsy Society in Melbourne, Australia.
It’s unclear whether these isolated efforts will usher the Andrews/Reiter approach into the mainstream. Andrews doubts they will. Still, she says, even if the majority continues to scoff at her research, she takes comfort in knowing she was able to help many of her patients. After an exhaustive review of 23 years of patient records, Andrews estimates she has treated 2300 epileptics at her Santa Rosa facility. Of those, records indicate, 83 percent are now seizure-free. One-third of her patients are now off medication. Ninety percent have been reduced to the lowest therapeutic dosage.
I am one of those patients. After being granted my license four years ago, I continued to work on the Andrews and Reiter relaxation techniques. I listened to their relaxation tape every night. I saw a psychologist to work out some of my anger issues. In the process, my seizures became more and more infrequent. Until they disappeared.
I had my last seizure Jan. 4, 2003. Under my neurologist’s supervision, I am now decreasing my epilepsy medication. I should be off it altogether by the end of the year.
For more information on the Andrews-Reiter Research Program, visit their website, www.andrewsreiter.com. You can also contact their Santa Rosa, Calif., research center by email at email@example.com or by phone at (707) 578-8985.
It’s been a while since I completed this article, in May 2003, as my master’s thesis for the Columbia School of Journalism. It has also been a long time since my last major, grand mal seizure.
Today, more than two years after completing this article, I continue to use Andrews’s relaxation and breathing techniques on a daily basis, deflating electrical pressure when I feel it building in my eyes. I have also continued to use Andrews’s relaxation tape each night before sleep. In coordination with my neurologist, I remain on a daily dose of 200 milligrams of Tegretol and 1000 milligrams of Keppra, the lowest therapeutic level for both medications.
— Joshua Kors September 16, 2005
It’s been more than eight years since I wrote this article, more than three years since my last update. I’m proud to say that this piece continues to resonate: every month I receive calls from a new round of patients, a new set of families who want to know more about the Andrews-Reiter treatment. Sometimes I talk with them on the phone, lay out what I learned in the course of my reporting and what I discovered from first-hand experience.
In December 2009 I received an email from John Park, a Canadian healthcare executive, or as he put it, “a neurotic Jewish father looking to help his son with his epilepsy.” Park’s 25-year-old son Trevor had been blacking out from grand mal seizures since he was 13. Doctors had put him on a series of anticonvulsant medications. But the seizures continued, he said, and the medications left Trevor mentally hazy and sleeping more than 15 hours a day.
Park wondered: was the Andrews-Reiter approach a better way?
Two weeks later Park, Trevor and I met in the lounge of the Marriott Marquis Hotel in Manhattan. They had come to the U.S. seeking second and third opinions from American neurologists. Trevor did indeed seem out of it, but his father listened intently, his eyes intensifying as I laid out my research and personal experience. He left the hotel determined to meet with Dr. Andrews and Dr. Reiter.
Fifteen months later Park contacted me again. Soon after they left New York, he said, his son received treatment from Dr. Andrews and learned several unique Andrews-Reiter techniques to halt seizures. Now when Trevor felt the early signs of a seizure—lightheadedness, his words turning to gibberish—he would breathe slowly, deeply and use his right index finger to trace circles in the palm of his left hand. Soon Trevor’s seizure count began to plummet. Doctors lowered his medication. And his thinking became dramatically clearer.
Park was now laying out a blueprint for an epilepsy conference in October at the University of Toronto, designed to draw attention to the Andrews-Reiter approach. “This will be a conference for neurologists and medical professionals, for patients and their families,” he said. Across international wires I could hear the father exhale. “These techniques have made such a difference for our family,” he said. “Other families should know about them too.”
Park’s words struck a chord. That thought was precisely what drove me to open up my personal life and share the story of Dr. Andrews and Dr. Reiter’s impact on me. Over 2.6 million Americans have epilepsy, 50 million people worldwide. Every year 200,000 Americans are diagnosed with the condition. If they learned about the A-R approach, would it have the same impact on their lives?
Park asked me if I’d speak at the Toronto conference. Without hesitation I said yes. I also designed a comprehensive website for the conference, EpilepsyConference.com, which provides in-depth details on the A-R approach.
The conference is now four days away, the perfect time for an update on my own health. So how am I doing?
♦ ♦ ♦
Short answer: very well.
In the three years since my last update, there have been long stretches where epilepsy was barely a factor in my life. As patients learn with Dr. Andrews and Dr. Reiter, epilepsy is a condition in which damaged neurons are prone to overfire. But if you handle your health correctly, care for your body and take commonsense preventative measures, those neurons can be prone to overfire for the rest of your life without ever overfiring into a seizure.
Then again, there have been times in the last three years in which I didn’t exactly treat my body with care: staying up to 3:30 a.m. too many nights in a row; eating too many sugary foods, which triggers a surge of cerebral electricity; not exercising to deflate that electrical excess; or not pausing during strenuous exercise to let my elevated electrical levels fall slowly back to a healthy range. Other times I’ve stubbornly refused to get up in the middle of the night to walk to the restroom, leaving my body under prolonged physical pressure. And most commonly of all, I’ve mishandled the stress of botched first dates and the rage sparked during arguments with difficult family members. If I don’t work through that rage before sleep—either by talking out the issue with the offending family member, walking around the block and talking it out with myself, punching my pillow, or going into the bathroom and screaming till I’m exhausted—that rage can still explode during sleep and cause a seizure.
I haven’t had a seizure during my waking hours in years. That era is over. Occasionally I do still have complex partial seizures in my sleep: a little shaking, a little drooling in bed, in the middle of the night, while I’m half-asleep. In recent months those have come about once a month.
Annoying, for sure, and dismaying some days too. But a few occasional shakes during sleep—getting up, going to the restroom, dabbing off the saliva, heading back to bed—is light years away from the disoriented, fear-filled place I was in before I learned about Andrews and Reiter. Back then, seizures were completely random events, lightning that could strike now … or now … or now. The fear that created made happiness virtually impossible.
Today, with great friends, good health and a career I’m passionate about, I’m the happiest I’ve ever been. And if I want to be completely rid of those occasional, middle-of-the-night seizures, I know exactly what I need to do: go to bed on time, exercise regularly, and process any stress that crops up before bedtime.
As an investigative reporter, I face situations others might find nerve-wracking: interviewing high-ranking military officials, speaking to millions on live TV, testifying before Congressional panels that have convened to scrutinize my reporting. I complete each of these tasks with rock-solid confidence, knowing that every electrical surge that crops up I can shut down instantaneously by simply pausing, breathing and recentering myself.
I successfully use those A-R techniques six or seven times a day. After using them for so many years, they’re second nature to me now, virtually a reflex. I deflate those electrical rises so fast—in the time it takes to have a quick sip of water—that no one ever notices.
I continue to take a low dose of epileptic medication (500 milligrams of Tegretol, 300 milligrams of Lamictal per day), so low that I experience no side effects at all. As my neurologist, Dr. Steven Pacia of New York University Medical Center, said to me recently, “You’re living exactly the life you want to live. With good health, that’s the place you aim for.”
With this conference, with access to the A-R techniques, hopefully thousands more will reach that place too.
— Joshua Kors October 10, 2011
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