Epilepsy: Replacing fear with calm

By Megan Kennedy October 2011

When I was seven years old, I began having seizures and was diagnosed with a large arteriovenous malformation (AVM), an abnormal connection between the arteries in the brain. Mine were usually complex partial seizures, impairing my awareness, although I also had one to three grand mals a year, which knocked me out.

I had brain surgery in 1990 to remove the AVM. During the surgery I hemorrhaged and lost 17 units of blood. My neurosurgeon induced a coma. When I came out of the coma, I was paralyzed on the right side, had difficulty speaking, and my vision was impaired. I was in rehabilitation for four months, though my actual recovery took more than a decade.

Tests showed that the malformation in my brain was gone. But I still had seizures, an average of three to five a week, depending on stress level, fatigue and other factors.

I tried virtually every anticonvulsant (12 at last count), including Dilantin, Tegretol, Lamictal, Vigabatrin, Topamax, Klonopin, Zonegran and Lyrica. In conjunction with the medications, I tried the Ketogenic diet, neurofeedback, Chinese herbs, acupuncture, transcendental meditation and other approaches. Nothing worked.

I felt anxious and afraid. Socially I felt isolated.

Then, in 2003—when I was 26 years old—my mother found the Andrews-Reiter program on the Internet. She took me to Santa Rosa, California, to meet with Dr. Donna Andrews and Dr. Joel Reiter. The two doctors had reviewed my voluminous medical history and told us: they couldn’t guarantee that they could “cure” my seizures. But they expressed hope that my seizures could become less frequent and less severe.

I took a five-day course from Dr. Reiter and Dr. Andrews. When I returned home, Dr. Andrews worked with me on a weekly basis, over the telephone, for about three years.

When I first met her, Dr. Andrews asked me an intriguing question: “What if you decide that you will never have another seizure? Can you imagine that?” Not have another seizure? No neurologist had ever hinted that that might be possible. I had also never thought that I had any control over my seizures. Still, as skeptical as I was at first, the discovery of someone in the medical field who thought it was possible—someone who had herself overcome horrendous seizures—that was the beginning of my path to healing.

A series of neuropsychological tests done by Dr. Andrews showed that I had a superior IQ but an extremely high level of fear and anxiety and low self-esteem. She instructed me in relaxation, deep diaphragmatic breathing and visualizations. She gave me a workbook she had created in which I would record seizure triggers, as well as my state of mind when a seizure occurred. Perhaps most important, she worked with me on some deep-seated psychological issues regarding my parents’ divorce and the profound trauma I experienced from my father’s disapproval of me, and from his anger at my mother.

It seemed like my sympathetic nervous system had been turned permanently “on,” locking me into a state of tension which precipitated my seizures. As Dr. Andrews checked in with me each week, we spoke about the seizures I had that week. She helped me identify the events that triggered them. And we spoke about my father and how I should communicate with him. She taught me to stand up for myself and, in doing so, became a great ally and source of support. Dr. Andrews made me recognize how I feared my father and eventually how I could deflate his power over me.

I worked for years to increase my awareness of my body, following Dr. Andrews’ advice and example. She provided a relaxation tape, and I used it every day after work. Dr. Andrews went out of her way to make herself available to me, even on weekends.

Dr. Andrews and Dr. Reiter empowered me to realize the healing capacities of my own body. They gave me the tools to start on the journey that today allows me to abort seizures. I have became a dedicated meditator and student of Qigong, the Chinese philosophy of breathing and awareness. Today when I feel an electrical misfiring from the damaged left side of my brain, I can transfer that excessive energy to my brain’s right hemisphere, down my right shoulder and arm, release it through the right fingertips and abort the seizure.

In 2009 I met up with Dr. Andrews again. In addition to recognizing the improvements in my health, she noted the extraordinary change in my personality: from fearful to joyous.

Dr. Steven Schachter, professor of neurology at Harvard Medical School, had it exactly right in Complementary and Alternative Therapies for Epilepsy, a piece he produced with esteemed NYU neurologists Orrin Devinsky and Steven Pacia, when he described the Andrews-Reiter treatment as a “systematic approach to identifying preseizure warnings and changing the reflexive fearful and stress responses as one recognizes that a seizure is imminent into a calm response through diaphragmatic breathing. They reasonably postulate that replacing fear with calm can help inhibit seizures from progressing beyond the aura,” or initial stage of a seizure.

Schachter calls the Andrews-Reiter approach “an important step in the treatment of epilepsy.” And he summarizes the Andrews-Reiter approach beautifully: “Identify settings that cause seizures and avoid them. Reduce life stress. Respond to an imminent seizure with calm, not fear.”

As Schachter says, “Common sense? Yes. But they are the first to systematically apply common sense.”