The conference is offering workshops and educational seminars. Increasing numbers of people with epilepsy and their care givers are demanding greater participation in their treatment and exploring alternative options for learning to manage seizure disorders. The conference will explore how the many adjunctive and alternative therapies can work with conventional approaches in epilepsy treatment.
Clinical psychologist Donna Andrews, and her colleague, neurologist Joel Reiter, of the Andrews/Reiter Epilepsy Research Program in Santa Rosa, California, are among the conference's featured speakers. They will discuss their research and present a workshop on their methods of teaching self-control of epilepsy. Andrews and Reiter operate the only epilepsy clinic in the entire United States emphasizing teaching behavioral strategies for self-control as a major component of conventional epilepsy treatment.
Andrews' and Reiter's decades of research and success in teaching behavioral strategies as an adjunctive therapy in epilepsy treatment is better known in Canada and Europe than here in the United States. In the United States, non-drug and non-surgical methods for successfully treating epilepsy are largely ignored or dismissed as unreliable approaches to seizure management. The positive outcomes of their research, and the success of their patients in learning self-control of seizures, clearly illustrates the necessity and viability of an integrative approach to treating seizure disorders.
Initially, the Andrews/Reiter program was not thought to be "alternative" medicine. When they began, as Andrews notes, "We saw it as an adjunctive therapy, but about thirty percent of our patients are able to eventually get off of anti-epileptic drugs."
Andrews' and Reiter's work, continually demonstrates, as she asserts,
"Understanding and treating behavioral aspects of seizures is necessary to reach optimum effect of the drugs and should be used before surgery is considered. The benefit of the A/R approach is increased awareness of the triggering mechanism the preseizure state, and the use of compensatory skills that are effective in aborting seizure activity at this critical moment."
The program has been quietly conducting research and enabling people with seizure disorders to improve their seizure control for more than twenty years. From the time it started, the clinic has been successfully teaching people with seizure disorders, often "hopeless cases," methods for achieving greater seizure control and their work is becoming widely known.
In 1979 Donna Andrews attended a lecture about biofeedback. The person giving the lecture was Joel Reiter, neurologist, and a graduate of Harvard and New York University Medical School. Dr. Reiter did his residency in neurology at UCSF where he is an Associate Clinical Professor of family and community medicine. In addition, he maintains his neurology practice in Santa Rosa.
Andrews says, "I was a student of Dr. Reiter's for biofeedback certification. He made some comments about epilepsy and I told him it wasn't truth as I knew it. After his presentation, we talked about my being eleven years seizure free and having been off medication for seven of those years. He asked if I thought I might be able to teach others."
The field of biofeedback was still new, and Reiter challenged Andrews to prove people can learn to control their own seizures. She rejoined by challenging him to assist her in setting up a research project. Out of this meeting, the Andrews/Reiter Epilepsy Research Program evolved.
Andrews herself once had intractable seizures. She suffered global brain injury after developing a near fatal case of encephalitis in the 1960s that left her in a coma and near death for 6 weeks. When she came out of the coma, she was not expected to ever recover even minimal mental faculties. Her seizures were frequent, and not controlled by drugs.
On her own, Andrews discovered how to control her seizures, "It was the day," she recalls, "when I had reached a point of despair about medical treatment. I had no choice but to look within and I discovered there was a direct correlation between my state of mind and seizure occurrence. Primarily, negative states, fear and anger, were correlated with seizures." Once she recognized what could trigger her seizures, Andrews devoted her efforts to overcoming them altogether.
"I discovered two things," she reflects, "when I became emotionally involved in learning a new skill, I would experience frustration and become focused on being self-deprecating, seeing how poorly I learned now. I found that getting away from the task and the frustration it caused, usually by movement, walking, doing the dishes, etc. I could prevent a seizure.
"After a break from my frustration, I found I could go back and learn the task as well as avert the seizure." Andrews discovered there are patterns to seizure activity and these often involve too much stress to the nervous system, "Parents and care providers need to understand this emotional connection and take care not to push the patient with epilepsy too hard in the goal to acquire skills.
"An important key in learning seizure control is to take a break if the brain becomes overloaded, taking more pauses during conversing. Exceeding one's ability causes frustration and self condemnation, which will trigger seizure activity.
"There are a lot of automatic and predictable behaviors that, if not responded to appropriately, will ensure a seizure occurring." Andrews' choice of a specialty in neurological disorders arose from her committment to help others with seizure disorders learn to manage their own seizures .
With several colleagues, Andrews and Reiter set up a pilot study in 1980. This study included only six of Reiter's patients with complex partial seizures. None of them had achieved successful seizure control with drug therapy over a period of two or more years. Andrews taught them methods she had found useful in bringing seizures under control.
The first, and most important, tactic Andrews taught was deep diaphragmatic breathing. One of the invariable changes that takes place when a seizure begins is an alteration of cerebral blood flow and metabolism in the area of the brain where seizures originate. Changing breathing patterns from the automatic response of breath holding, or the tense rapid breathing often preceding seizures, to slow calming breaths, can relax the blood vessels, helping to normalize cerebral blood flow.
In 1984, Robert Fried, PhD. did a study in which he trained people with seizure disorders to monitor their own EEGs and the level of carbon dioxide in their blood streams. They learned how to do deep diaphragmatic breathing as is done in the practice of yoga. Every subject in his study showed improvement in seizure control.
Andrews notes, "As a group, people with seizure disorders have proven to be breath holders, i.e., they reflexively go into "fight or flight" mode-breath holding, when a seizure begins. We teach these relaxation techniques so that automatic relaxation becomes the needed response to the physical changes preceding a seizure.
"I've been seizure free for thirty-two years because I learned a higher level of response than just holding my breath to avert the seizure before it starts. The clinic patient needs to learn to normalize her or his response to the seizure stimulus."
Within six months, five of the patients in the initial study had gained considerable control over their seizures. The sixth participant dropped out of the study. "Dr. Reiter," says Andrews, "had to admit his patients were getting well. We continued the study with very good results. In 1983, the project became a charitable research trust under the name 'Andrews/Reiter Epilepsy Research Program.'
"We continued with our clinic program, including people within a fifty mile radius. We began writing the book on learning self-control of seizures. The concept was new and we were rejected." Despite the poor reception among their peers, Reiter's patients were indeed "getting better," and results of their research began appearing in medical journals such as "Seizure," generating interest in their work.
In 1987 their workbook was published. Through this, and by word of mouth, Knowledge of the clinic's success spread. In 1990, Reiter and Adrienne Richard collaborated and wrote the book, "Epilepsy: A New Approach," about learning self-control of seizures. This is still the only book in print detailing how to integrate self-control strategies with conventional approaches of treating seizure disorders. The book is directed to both professionals and the general public.
About integrative treatment, Andrews points out, "It is healthier, to take an individual approach. It is not a question of either/or, to use, or not use drugs, but to use the methods that work. Many patients come to us who have been on multiple drugs and were able to reduce their medication as they learned methods to control their seizures on their own. Some who were afraid of the side effects of the drugs were able to gain control without ever using drugs.
"Our goal is always to restore the quality of life, to see the patient reach her or his highest level of functioning. We often found excessively high levels on a single drug and certainly 'poly-drug' therapy interfered with this learning process. As a culture, we rely way too much on medication in this disorder, especially when the medication does not work."
Each year the Library of Congress chooses several books it believes will make such an important contribution to public knowledge they order two copies for every library in the country. "Epilepsy: A New Approach," received this distinction in 1990. A revised, paperback edition was published in 1995.
Since publication of Reiter's and Richard's book, the clinic gets patients from all over the United States and from many countries throughout the world. Their work has drawn attention in many countries. Both Reiter and Andrews have participated in numerous epilepsy conferences as their work is gaining acceptance and recognition.
In 1988, Andrews made a presentation of their work to the Victoria Epilepsy Society of Melbourne, Australia. In 1992, she and Reiter were speakers at the Epilepsy Europe, International League in Glasgow, Scotland. In 1995, both presented at the Canadian National Epilepsy Conference on "Options". Their work has taken them to epilepsy conferences in Boston, Canada, as well as to international conferences in East Germany and in 1999, Prague, Czechoslovakia. Their work book has now been translated into Spanish. Andrews hopes to be able to present their work in Spanish speaking countries sometime in 2002.
The clinic's treatment approach is far different than that encountered in most conventional epilepsy centers. Just as an individual diagnosed with diabetes learns methods to control the symptoms of the disorder on her or his own, the Andrews/Reiter clinic offers tools for the individual to learn self-control of seizures. In their program, the client is an equal in the process of evaluation and treatment.
Initial treatment at the clinic involves a five day "intensive," where all aspects of the seizure disorder are evaluated and a treatment plan developed, which includes long term follow-up. According to Andrews, "Patients can refer themselves or be referred by their family or doctor. We have to receive documentation of their seizure history. We need to be sure they have a 90% chance of achieving total seizure control using neurological and psychological approaches before acceptance into the program. If not, we try to figure what will most benefit this person."
In the clinic's experience over twenty years, Andrew's found that, "Way too many of the supposedly 'hopeless cases,' about 72%, did achieve complete seizure control. We let those considered hopeless make the decision whether they think our program will help. We do not limit them and then, if they choose to come, we are happily surprised when they do succeed.
"Because we take so many of the difficult cases, we don't have 100% success. The difficult cases take longer, but often do achieve seizure control. The first thing we do is a medical evaluation and recommendation for a change of treatment, but this is not mandatory.
"We use a team approach. The patient is equal to the doctor. We realize our patients know more than we do about their disorder. Our job is to give the patient trustworthy information about what is medically known about the seizure disorder.
"From the psychological end, they get an assessment of their personality and intellectual functioning. This helps determine what is working for or against them in controlling seizures." Dr. Reiter provides a full neurological evaluation.
Andrews continues," We then try and determine if the deficits represent brain damage or are drug induced. Once we've gathered all the data, it is fed back to the patient with our recommendations for change in treatment. Sometimes this is a change in medication, and other times it is to work with neurological, psychological, or environmental factors.
"We try and sort out the various factors contributing to seizures. The patient works with us to develop a treatment plan including the neurological and psychological assessments. It is not uncommon for us to discover the seizure trigger during the five days we are working with the patient. This happens in about 70% of the patients.
"Our treatment approach is rather Pavlovian, because, what we want as a first line of defense when a seizure starts is a deep diaphragmatic breath, so effective in aborting a seizure. Also in this process of discovery, we may find there are some triggers that the patient must move away from and learn to reduce the stimuli. Sometimes it is attitude, other times, it may be environmental, such as noise. We go over the whole spectrum. Always, we must be in a listening mode with our patients, to hear what is unknown, or misunderstood, that may be triggering seizures. It is always a cooperative effort."
FOR MORE INFORMATION:
A Neurobehavioral Approach for Treatment of Complex Partial Epilepsy: Efficacy (presented at the International Epilepsy Congress in Prague, 1999) Seizure. 1999; 0: 1-6
*For Zoë L. Langley's email address go to CONTACTING ZOEY,