29th IEC: Day Two: Can Epilepsy be Cured by Meditation? Can it be Cured at all?

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. 

29th International Epilepsy Congress 2011: a.k.a. InterUberEpFest

Raphael's seizure

 If you’re reading this you have probably known an epileptologist or two. So you can begin to imagine how remarkable—daunting frankly--it is to have 4,000 of them in one hotel talking about epilepsy from sun up to sun down. That’s the situation here in Rome at the 29^th International Epilepsy Congress, from where I will post from time to time over the next four days. I am calling it InterUberEpFest 2011 and it is nonstop talk about  epilepsy, epilepsy, epilepsy, in every language and from just about every imaginable point of view.

It is fitting that this conference is unfolding in Rome. For one thing, the city was home to two of the most famous epileptics in history: Julius Caesar and Michelangelo, and though one has been dead two thousand years and the other nearly half a millennium, evidence  of their extraordinarily creative lives and characters are all over this amazing city.  For another, this years Congress celebrates the Jubilee of the International Bureau for Epilepsy, which was formed at a meeting here in Rome fifty years ago. In the decades since then, the IBE has worked hard around the world—though with a European focus--to turn social views of epilepsy on their head. The prevailing stigma and lack of support for epilepsy research so prevalent early in the 20^th century, are hard to imagine now. We have come a long way, and it’s important not to lose sight of that.  But we have a long way to go still.

The attitudinal distance we still need to cover was highlighted in this morning’s big session on Unexplained Death from Epilepsy, or SUDEP. Doctors, and particularly American doctors, have come under a lot of criticism for their reluctance to discuss the possibility of death from epilepsy with their patients or, in case of children with epilepsy, with their families. Susan Axelrod, founder of the Citizens United for Research in Epilepsy (CURE,) was the first speaker at this morning’s session, and she gave an impassioned plea for better patient-doctor communication about SUDEP. She described her own experience as a cancer patient; even in the traumatic moments of her original diagnosis, her doctor never pretended that her illness was not potentially lethal. Only because he shared the truth with her could they collaborate to fashion the best plan to keep her alive. Yet epilepsy patients are routinely deprived of that realistic evaluation.

Axelrod’s daughter, Lauren, had her first seizure at 7-months-old. In the traumatic early years of Lauren’s epilepsy, the Axelrods spent weeks in the hospital, ran through 20 different AEDs, and attended the hundreds of doctor’s appointments such prescription and re-prescription entails, but never once did a doctor tell them that Lauren’s life might be in danger. And yet it most certainly was…and still is.

Also in  the session was renowned Baylor epileptologist and researcher Jeffrey Noebels,  who has done seminal work locating SUDEP genes. He said that at least in some cases  SUDEP could now more accurately be called SDEP, because identification of a genetic mutation that causes an iron-channel defect that links seizures and sudden cardiac malfunction, took the “unexplained” out of at least one kind of SUDEP. A signature EKG form now allows epileptologists to screen for that disorder, and Nobels recommends that EKGs be routinely conducted on patients with seizures.

I have to rush back to the conference. But I want to mention another excellent session today in which Harvard neuroscience professor Steven Schachter gave a riveting account of the artworks he has collected from patients with epilepsy over the decades. Art is often a nuanced but powerful way of communicating the suffering, isolation, and anxiety that often accompanies epilepsy, says Schacter, and while making art can have great therapeutic value, a doctor’s clinical attention to it can also have diagnostic value.

While Schacter’s talk emphasized the suffering of epilepsy patients, another talk in this session, by Australian doctoral student and artist Jim Chamblis, looked at research suggesting that, in his words, “epilepsy, which is most often perceived as disabling, in some circumstances can actually be enabling by enhancing creativity.” Now that’s turning stigma on its head!