What is epilepsy? The simplest working definition boils down to "the propensity to have seizures." Does that mean that if drugs help a patient stop seizing, the patient’s epilepsy is cured? Most neurologists act that way; once seizure-free for two years, a patient is typically sent on their way unless they seize again.
But there’s a growing consensus that epilepsy goes far beyond seizures. In the words of Harvard epileptologist Frances Jenzen, “seizures are often just the tip of the iceberg.” The underwater part can include all kinds of “co-morbidities” including persistent memory and cognitive problems, depression, headaches, and socialization problems. There is a hearty debate about whether these conditions are a part of the epilepsy or are caused by it. Some argue that the brain problems that caused the seizures to begin with also cause some or all of these problems. Others suggest that maybe the comorbid conditions are byproducts of having seizures. But either way, a fascinating discussion at one of today’s IEC sessions shows that for many patients, the end of seizures does not mean the end of their epilepsy-related problems.
Mary Lou Smith, a psychology professor at the University of Toronto, discussed longitudinal studies of whether cognitive, academic, social, emotional, and behavioral effects linger even when a patient’s seizures are controlled with surgery or drugs. Unfortunately, she says “the impact is substantial, even for those in remission and off of their anti-epileptic drugs.” Marriage rates are lower, IQ is lower, and self reported quality-of-life still lags behind the general population.
Even patients who’ve had successful surgery, are off all medication, and have had no seizures for five years continue to suffer. Though this group scores the same as a control group for seven other quality of life measurements, they remain less well adjusted when it comes to social function.
But for most others, who remain on medication, things look less rosy. “Stigma plays an important role in the lingering effects, but it doesn’t explain everything,” Smith says. “There may well still be underlying neurologic issues and other kinds of social and psychological issues, too.”
Smith is not minimizing the hardships caused by seizures themselves. “A life without them is definitely easier than a life with then,” she says. “But it is not necessarily better.” And it almost certainly is not all better.
Would continued treatment by doctors help? Or perhaps other kinds of interventions? Teaching compnsating techniques for memory loss, say, or treatment for anxiety or depression?
“It makes sense that they would help,” says Smith. “But the studies haven’t been done. We’ve gone through the research phase of documenting the problem, and now its time to start exploring solutions.”
Meditation and Other Alternatives
Another promising session looked at “Alternative, Spiritual, and Traditional Therapies for Epilepsy.” Speakers discussed ancient and traditional Chinese medicine, traditional Latin American and African treatments for and beliefs about epilepsy, and the effect of meditation on epilepsy. No reliable evidence was cited that traditional therapies were effective at treating epilepsy. In fact, the combination of impotent and sometimes brutal treatments (one African treatment entails putting the heads of epileptic patients into latrines) and the litany of depressing traditional explanations for epilepsy (e.g. spirit occupation, bad winds, contact with a woman who has had an abortion) was very discouraging. The most hopeful talk was the last one, about meditation, delivered by UCLA neurologist Jerome Engel who clearly thinks there is some value there. Engel described reasons to believe that meditation might help control seizures (it increases hippocampus growth, increases fiber connectivity throughout the brain, it generates lots of activity in the mesial temporal lobe, where a lot of epilepsy is focused.) But at the end of that positive litany, he acknowledged that the studies on meditation and seizure control were equivocal at best: some even suggested that meditation could bring seizures on!“There’s still no really good control study of the effect of meditation on epilepsy,” he finally concluded. Anticlimactic? You bet. But honest. Dr. Engel said he’s had one NIH grant application to do such a study turned down but he’s waiting on another. Let’s hope he gets it and so his next talk will have some harder data.