When Rex Reimann hears 1980s music in his head, he reaches for his magnet. He has just seconds, he says, to head off one of the debilitating seizures that for so long controlled his life.
For more than 20 years, Reimann had as many as six grand mal seizures, 10 "drop" seizures and 10 "absence" seizures a month. In the four years since he was implanted with a vagus nerve stimulator, he has not had a single grand mal seizure. He's had just two drop seizures, where he falls or slumps over. He seldom zones out, the hallmark of an absence seizure. And when he feels one coming on, he can simply wave his magnet over his chest and it intensifies the electrical impulse being sent to the left vagus nerve in his neck to stop the seizure.
Some call the device, approved by the Food and Drug Administration in 1997, a "pacemaker for the brain." It's still the only device approved for treatment of epilepsy.
Of the 2.5 million Americans with epilepsy, about a quarter have what's called treatment-resistant epilepsy, meaning medication alone does not control seizures. Vagus Nerve Stimulation (VNS) Therapy is an adjunctive therapy for those over age 12 who fall into that category. Reimann is one of them.
He was 11 when he suffered three concussions in the space of a week, the result of being an extraordinarily active boy. He hit his head doing backflips on a swing. Then he took a hit during Little League football. And finally, riding his bike, he was clipped by a car and landed on his head.
The crash with the car left him partially paralyzed. He still has only 60 percent function on his right side. But it would be the seizures that followed that would disable him and limit his life.
He eventually gave up his hopes of graduating from high school. Too many seizures and their aftermath of searing headaches and memory loss. Too many sick days.
He's been on a variety of medications, each of which lost effectiveness over time. Some never did work. He has participated in clinical trials. When he was 22, for instance, he tried a little blue pill called Gabitril that cut off the grand mal seizures. It was Gabitril that allowed the young man to go on a mission for his church.
Still, the medications to prevent seizures all have potential for side effects, including drowsiness, lethargy, weight gain and confusion. In Reimann's case, they didn't work over the long term. He still had seizures. Eventually nurse practitioner Lorie Blair in the University of Utah Department of Neurology suggested he try a much different approach.
Many patients who don't respond to medications find relief, even a cure, through brain surgery, Blair says, but not everyone's a candidate. For one thing, seizures must occur in a single brain site, usually the temporal lobe, that the surgeon can correct. It wouldn't work for Reimann. He went for the stimulator.
To implant the pocket-watch-size device on the left side of the chest and run the wires up the vagus nerve typically takes less than an hour and is done as an out-patient procedure.
The vagus nerve is the body's information superhighway, according to spokespeople for Cyberonics, the company that makes the device. It connects the brain and many major organs. Since seizures are electrical storms in the brain, VNS therapy acts to short-circuit those electrical storms. It also increases blood flow to the thalamus, a portion of the brain that has been shown to have significant correlation to long-term seizure control, the company says.
Reimann's device goes off every five minutes, sending an impulse to the nerve. When he goes in for a checkup, Blair runs a wandlike reader over his chest and pulls out the information she needs, such as how many times he used the magnet recently and how much life is left in the battery (his should last seven years based on his device settings,) how intense the stimulation the device is set to deliver and more.
Many people who have seizures have some sort of cue that one is coming, Reimann said. One woman hears birds chirp; he happens to hear the type of music he was "into" about the time he started having seizures. So when that '80s-style music pipes up, he grabs the magnet and rubs it across the implant, which ratchets up the intensity of the stimulation to the vagus nerve and short-circuits the seizure before it gets going. For those who don't have forewarning, someone else can wave the magnet and stop the seizures. "It's a bit magical" in how well it works, Blair says.
Besides providing relief to patients with epilepsy for whom medication is simply not enough, the implants have caused a stir because they seem to act as a sort of antidepressant, Reimann says.
The Food and Drug Administration is considering that right now as a possible treatment for depression. VNS therapy is also being investigated as a possible treatment for anxiety disorders, Alzheimer's disease, bulimia and chronic headaches.
Reimann can feel the device go off, but he's used to it. Some people complain that it hurts when they swallow. That may be a matter of placement. It doesn't bother Reimann. The charge itself "feels like someone tickles you really hard."
When it goes off while he's exercising he can have a little trouble breathing because it causes a contraction around his esophagus. Still, that's a small price to pay for eliminating the seizures. Blair says it also reduces the miserable after-effects of a seizure.
Reimann wishes he'd had it 20 years ago. "I would have loved to have been able to drive. I would have loved to be able to do well in school. I kept going although I knew I would flunk out."
Epilepsy also messed up his dating during crucial teenage years. "Gabitril would have been great when I was 14. Dating was difficult because I didn't want to have a seizure around the girls. The thought of that scares me."
These days, he only sees his neurologist, Dr. Fumisuke Matsuo, if he needs to. That's hasn't happened for quite a while. He's still on some medication, though, so he gets checkups when it's time for a refill.
He's become a home teacher and is an elder in The Church of Jesus Christ of Latter-day Saints. He's lost 40 pounds, gets out more and is thinking that a regular job may no longer be just a dream.
More information is available online at www.vnstherapy.com.
E-mail: lois@desnews.com