Here is a second blog post from epilepsyUSA contributor Gordy Slack, who is blogging live from Rome, where he is attending the 29th International Epilepsy Congress. Gordy kindly agreed to share his dispatches with us, orginally posted on his own blog Brainstorm.
International Epilepsy Congress, Day Two: Can Epilepsy Be Cured by Meditation? Can It Be Cured at All?
by Gordy Slack
What is epilepsy? The most common and obvious definition is the propensity to have seizures. Does that mean that if a doctor can make her patient’s seizures stop, she’s “cured” the patient’s epilepsy? Most neurologists act that way; once seizure-free, a patient is typically sent on their way unless and until they seize again.
But there’s a growing consensus that epilepsy goes beyond seizures. In the words of Harvard epileptologist Frances Jensen, “Seizures are often just the tip of the iceberg.” The underwater part can include all kinds of “comorbidities,” including memory and other cognitive problems, depression and socialization problems. There is a hearty debate about whether these conditions are a part of 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 just byproducts of having seizures. But either way, a fascinating discussion at one of today’s IEP 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 antiepileptic drugs.” Marriage rates are lower, IQ is lower, and self reported quality-of-life still lags behind the general population.
Even people who’ve had successful surgery, are off all medication, and have had no seizures for 5 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.”
“Epilepsy is much more than just seizures. It’s a whole constellation of things,” she says. “Mental health, social factors, employment factors.”
Smith is not minimizing the hardships caused by seizures. “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 methods of compensating 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.”
Another promising session today 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. Not surprisingly, to me anyway, there was no reliable evidence cited that traditional therapies were effective at treating epilepsy. In fact, the combination of ineffective 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 some value there. Engel described reasons to believe that meditation might help control seizures (it increases hippocampus growth, increases fiber connectivity throughout the brain, 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.