Last September, Anthony Bonadio, 26, flew from New York to San Diego for a friend's wedding. The morning after the wedding, he turned on the water for a shower—and the next thing he remembers is waking up in an ambulance. His friend, who was sharing the hotel room, says he heard a heavy thump followed by several more. He rushed to the bathroom and found Bonadio convulsing on the floor.
In October, after a long, stressful day playing piano in auditions for a Broadway musical, Nick Day, 23, went to bed and fell asleep. When he woke up, his girlfriend told him he'd had a seizure and an ambulance was on the way.
Both young men were examined by emergency department doctors, observed for a few hours, and sent home with orders to take it easy. Both were told that unprovoked seizures were quite common and that theirs may have been brought on by exhaustion.
An Uncertain Future
Each year, an estimated 150,000 Americans experience unprovoked seizures—seizures without an obvious trigger like a blow to the head, a high fever, low blood sugar, or alcohol withdrawal. More than 50 percent of the time, patients will never have a second seizure, even though the cause of the first remains a mystery.
Neither Bonadio nor Day knew whether the seizure was an isolated incident or signaled the onset of epilepsy. Should they take antiepileptic drugs (AEDs) to reduce the risk of having a second seizure, or do nothing and hope they were among the percentage of patients who never have another seizure?
With such uncertainty common in medical practice, the American Academy of Neurology (AAN) and the American Epilepsy Society convened a panel of experts to review the available evidence and draft a guideline, published in the journal Neurology, to help patients and doctors decide what to do in the case of a first unprovoked seizure. The experts set out to answer three questions: If you have an unprovoked seizure, what is your risk of a second one? If you take an AED immediately after your first seizure, will this help you remain free of seizures in the long term? And are there any adverse side effects of AEDs that patients need to know about?
Risk of a Second Seizure
The panel found that the overall risk of experiencing a second seizure within five years of a first unprovoked seizure ranged from 21 to 46 percent in different studies. Significantly, the greatest risk was within the first two years, so if patients hadn't had a seizure after two years their risk dropped substantially. The panel also found that certain clinical factors doubled the risk of a subsequent seizure: a preexisting lesion or injury to the brain; an electroencephalogram (EEG) showing abnormal spikes or electrical discharges, called epileptiform signals; a significant abnormality on a magnetic resonance imaging (MRI) scan; or a nocturnal seizure.
"Between 20 and 50 percent of patients will have another seizure. That means 50 to 80 percent will not," says Gary S. Gronseth, MD, a co-author of the guideline, a professor of neurology at the University of Kansas School of Medicine, a Fellow of the AAN, and a member of the Neurology Now editorial advisory board. "So, the patient has to make a decision: 'Should I take medication every single day to help reduce my risk of another seizure?'"
Different Outcomes
Day didn't have to calculate his risk. He had a second seizure soon after the first, followed by four more. He was diagnosed with epilepsy and prescribed AEDs. He has been free of seizures since.
Bonadio, on the other hand, hasn't had another seizure. However, his neurologist saw epileptiform signals on his first EEG, so Bonadio knows his risk of a second seizure and therefore of having epilepsy is higher than it would be for someone whose tests are normal. He's still undecided about what to do.
Dr. Gronseth understands his dilemma. He suggests that patients crunch the numbers. "A good rule of thumb is that AEDs will reduce your risk of a seizure by half. So if your risk is 20 percent, drugs would make it 10 percent. If it's 50 percent, taking AEDs would make it 25 percent."
Side Effect Considerations
Another concern for Bonadio is the side effects of AEDs. Will they slow him down and make him less competitive in his high-stakes finance job?
The guideline found that adverse side effects from AEDs such as upset stomach, skin rashes, dizziness, and drowsiness occur in 7 to 31 percent of patients. Most are mild and reversible. But for some patients, the side effects can be quite serious and should be evaluated, Dr. Gronseth warns. And in some instances, AEDs may be inappropriate. For example, some AEDs make birth control pills less effective. Women who are thinking of becoming pregnant also need to be cautious, as some AEDs may increase the risk of birth defects.
Weighing the Options
"The main message of the guideline is that there's intrinsic uncertainty," says Dr. Gronseth. "Patients have to weigh the benefits and risks and make the decision for themselves. The doctor can give them some numbers and help interpret them, but the patients have to make the value judgment that is best for them."
Dr. Gronseth stresses the positives of AEDs and informs his patients that the majority of people diagnosed with epilepsy can control their seizures and live normal lives. That's good news for Anthony Bonadio, who is awaiting the results of another EEG before discussing medication with his doctor. "I want the freedom to do what I want to do and not worry about a seizure happening."
4 Questions to Ask Your Doctor
Informed patients often make better decisions about their health care. Here are four questions to ask your doctor or health care team if you've had a single unprovoked seizure.
- What is my risk of having another seizure?
- If I take an epilepsy drug, what is my risk of having side effects?
- What might those side effects be?
- What are the long-term health consequences of taking an epilepsy drug?