Countering the Unpredictable: Brain Seizure Care Now Complex
"I just tried to make a phone call," Jessica Lovit told her mom, "and the phone fell right out of my hand. It was the weirdest thing." It was early summer and Lovit had just begun classes at a community college. Within days of that first fumbled phone call, this vivacious 20-year-old would learn unexpected and difficult new lessons about her body.
Deep in her brain, a tumor was disrupting the normal pathways and balances of electrical impulses, propelling the muscles of Lovit's right arm, then her right leg, and then, one Sunday afternoon, as her mother watched in helpless horror, Lovit's whole body was gripped in violent, uncontrolled jerking motions.
Physicians at Stanford Hospital's Epilepsy Center would ultimately discover the non-cancerous brain tumor as the source of Lovit's seizures. After a two-part tour de force surgery combining physical manipulation and imaging technology, Lovit is back in school doing her best to catch up and to adapt to her condition.
Epilepsy can happen to anyone at any age—out of the blue.
She and her family still grapple with the ground level question, one Lovit's mother, Robin, kept asking as her daughter's seizures increased, "How does this happen all of a sudden? How does this happen out of the blue?"
What Epilepsy Isn't
Each week at Stanford, the Epilepsy Center's director, Robert Fisher, MD, PhD, and the collaborative team of neurologists, neurosurgeons and nurse practitioners see a dozen new patients like Lovit who arrive with that question. The first part of the answer, Fisher said, is that what happened to Lovit "can happen to anyone at any age – out of the blue."
Epilepsy is not a disease, he said, "It is a symptom of something wrong with the brain. That something wrong is a seizure, an electrical storm in the brain, and epilepsy is a disorder of recurrent seizures."
And, as a distressing adjunct for those who have epilepsy and for their families, it is far more complex than its stereotypically inaccurate definition as a disease that can be caught, or one that means normal life cannot be continued.
Depending on where in the brain a seizure begins, a particular part of the body will respond or emotions and perceptions be altered. Seizures can last from a few seconds to minutes. Some are triggered by light or sound or smell.
More than 200,000 people are diagnosed with epilepsy each year in the United States, adding to the millions who suffer from a form of the disorder. Epilepsy can appear at any age, or after an accident or illness. Left uncontrolled, seizures may disrupt a person's life, causing injury or sometimes even death. For many people, however—two out of three—medications offer varying degrees of seizure control. For certain others, surgery can help.
Opening New Windows
Many people will never know the cause of their epilepsy. But research is shedding light on the brain's cellular biochemistry, peeling apart the mechanism of interactions within the brain's 100 trillion electrochemical contact points. Understanding those interactions is fostering the emergence of new medications, surgery and treatment mechanisms implanted within the brain.
With increasing sophistication, the Stanford Epilepsy Center's physicians are able to record and track the spikes of electrical current that flag seizure location within the brain's tightly packed curves and crevices. In Lovit's case, Fisher and his colleagues used such imaging to locate the problem area in her brain.
We've gone from very limited and not very successful options to what is now a complex specialty.
The Center's treatment protocols are designed to provide as many aids as possible to mitigate the effects of epilepsy, some of which are social. Fear of having a seizure in public leads some to restrict their life's activities and the Center works with patients to cope with that fear. "There is still a lot of myth and misunderstanding about epilepsy," said Center clinical nurse specialist Mimi Callanan. "The patients we see are remarkable. They deal with the challenge of epilepsy with grace and do what they need to do to get through their days. They go to school or work every day, hold a job and have families. They’re amazing."
Decades ago, when Stanford neurosurgeon Michael Edwards' seven-year-old stepbrother was diagnosed with epilepsy in the late 1950s, very little effective treatment was available and the side effects from medications did little but produce a constant state of drowsiness. Edwards hadn't planned to go into medicine, but his profound feelings about the suffering epilepsy could bring led him to study it and how surgery might make a difference. "I know how negative that spectre can be over your head," he said, "never knowing when you’re going to have a seizure."
Edwards performed Lovit's surgery, very aware that epilepsy and seizures are not well understood by the public. "It's a terrible disorder for anybody, but it's really a terrible disorder for young people,” Edwards said. "I really feel very positive when we find patients where there may be something surgical we can do. If there's a structural lesion in the brain, surgery can mean a more permanent solution."
Finding the Best Path
The first question physicians must answer is whether the seizures could be caused by one of the two dozen imitators of epilepsy. Those include fainting spells, transient ischemic attacks (warning strokes), cardiac arrhythmia, narcolepsy, movement disorders and a variety of psychological disturbances. Then, physicians classify the seizure as either focal (starting at one point in the brain) or generalized. If no structural abnormality is found, such as a blood clot, birth defect or tumor, then physicians are left with brain chemistry as the causal trigger for seizures and medication as primary treatment.
Treatment programs are individualized for the patients. Anti-seizure drugs are the mainstay, but surgery, special diets, electrical stimulation and other therapies can be useful.
The surgery that helped Lovit is something that has changed the lives of many who had to rely on medication for many years. "It can offer people control they've never had in their lifetimes, who've had decades of seizure problems," said Bonnie Pamiroyan, a family nurse practitioner at the Epilepsy Center. "Their need for medication can be greatly reduced or perhaps even eliminated. They can finally drive a car. The world opens up to them. It's amazing to see the transformation from being constantly battered and hit by seizures."
For surgery to be effective for seizure control, the seizures must consistently come from an identifiable region of brain, and that region must be safe to remove. "It is still a point of experience and courage to know what can be taken safely out of the brain," Fisher said. During Lovit's surgery, her physicians made recordings of her brain waves as they removed tissue to track the changes in electrical activity, to protect her full physical function. "We're getting better at it all the time," Fisher said.
- Symptoms: recurring seizures that can affect parts or whole body, including emotions and perception; triggers can include sound, smell or light.
- Treatments: medication, surgery, diet.
- Role of genetics: some forms of epilepsy seem to have a genetic component.
- National statistics: Three million people in the U.S. have epilepsy. Men are more likely to develop the disorder than women; the incidence highest before age 2 and after age 65.
- Research: Areas of basic interest include post-traumatic injury epilepsy, brain circuits underlying onset and spread of seizures, prolonged seizures, development of abnormal brain rhythms; clinical research includes forms of brain stimulation.
- Resources: The Center's Web page at stanfordmedicine.org includes video lectures by Fisher and an extensive descriptions of types of epilepsy, seizures and treatments. Also, see:
For more information, call:
- Stanford Hospital & Clinics: 650-723-4000
- Stanford Epilepsy Center: 650-723-6469
I just want to keep going, to live a normal life. I don't want just to sit at home and be depressed.
Combining new abilities to find seizure origins, to safely remove brain tissue and to balance the side effects of medication has expanded options for those facing epilepsy. "We've gone from very limited and not very successful options to what is now a complex specialty," said Edwards. "It's the difference between walking in and saying, 'We can do A, B, C and that's it,' and saying, 'We can do A through Z—and then there’s some more.'"
The Center's research, which includes basic research on mechanisms of epilepsy as well as clinical trials, is now investigating methods to deliver medications directly to the brain and to influence electrical activity with brain implants.
"I just want to keep going," Lovit said, "to live a normal life. I don't want just to sit at home and be depressed." As do many others for whom treatment has not yet completely eliminated seizure activity, Lovit is working through the alterations in her emotional and physical state. "The meds sometimes make me feel very tired and spacey,” she said. "It takes a lot of me to stay focused in class, but I just think, in a very narrow way, 'I've just got to keep going.'"