May 2003

 

The Talking Treatment

Looking at a New Approach to Epilepsy


By Joshua Kors

 

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.

 
   
 

Shortly after I was diagnosed as having epilepsy, doctors put me on Tegretol (carbamazepine), a common anticonvulsant.

 

   

 

 

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.

 

                                                                 

 

 

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."

 

                                                                  

 

  

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.

                                                                                                                                           

 
Tel.: (646) 456-7738                                                   joshua@joshuakors.com