Foes of Flow: The King's Speech & The Fighter

King George VI in search of flow

Monarchies put a lot of stock in continuity, so stammering interrupts royal speech in a particularly discomforting way.  I’m sure, though, that a disabling stutter is just as agonizing for a working-class bloke or a trauma-torn vet.  You’ll know what I mean if you’ve seen The King’s Speech. If you haven’t, go see it soon; Colin Firth and Geoffrey Rush definitely deserve the year’s Oscar for Best Friendship.

We all want continuity--what Mihaly Csikszentmihalyi calls “flow”--in whatever realms we care about most: our speech, writing, economy, relationships, sport, music, dance…the morning commute. It goes by many names (swing, pace, groove, the zone, grace)  but it is singularly recognizable, beautiful, and satisfying. 

All kinds of things keep us from achieving flow, but some of the most painful, and a theme of both The King’s Speech and this year’s other great holiday film, The Fighter, are the psychological impediments that inhibit continuity, even when, physically, it should be achievable. The protagonists in both movies are hobbled by psychological forces that have physical consequences. And both required radical treatments that addressed the psychological roots of their problems: in one case, a boxer’s inability to  flow to victory, the key was detachment from his dysfunctional family; in the other, a king’s inability to deliver a pivotal speech, the key was the therapeutic honesty of a challenging but compassionate friend.

Also mortal foes of flow are physical problems (like epilepsy and stuttering) that interrupt the continuity of consciousness in ways that have disabling psychological and psychiatric consequences. A seizure is the ultimate interruption of flow; and the constant threat of one is enough to make a confident person’s experience sputter and jerk. Half of those who suffer from uncontrolled epilepsy also are depressed.

The mysterious relationship between the brain and the mind--between the physical and the psychological--may be the key scientific and medical question of the century. And it is nowhere more intriguingly and painfully played out than in psychogenic illness, such as many non-epileptic seizure disorders and much stammering. These disorders are as important to study as they are difficult to get a handle on.  

PNES: A Seizure by Any Other Name is Just as *Bleep*!

 

Is "non-epileptic seizure" an oxymoron? 

To quote Bill Clinton, "Words matter."
Last night, at the American Epilepsy Society conference in San Antonio, I saw a debate between Salim Benbadis, a neurologist from Tampa, and Curt LaFrance, a psychiatrist and neurologist from Providence. These doctors were wrestling over whether the word "seizures" belongs in the diagnosis of "psychogenic non-epileptic seizures." (Also known as PNES.) These are seizure-like events on the outside, with no corresponding epileptic EEG activity on the inside. They are considered a kind of conversion disorder, usually caused by a trauma suffered by a patient who can't effectively process the associated emotions or express them verbally. PNES patients often end up in emergency departments where they're typically prescribed antiepileptic drugs, not to be properly diagnosed unless lucky enough to be seen by an epileptologist (often years after onset) who can definitively reach a PNES diagnosis with a video-monitored EEG. Even after getting properly diagnosed, the patients often get punted back and forth between neurologists--who say the patient's problems are psychological and not in the neuro bailiwick--and psychiatrists who see the seizures as neurological events and thus outside their domain. 

Given that they aren't epileptic in any way, should these events be called "seizures" at all?  Benbadis opened the argument saying that the word "seizure" creates confusion in his newly-diagnosed PNES patients. "I talk to them for half-an-hour explaining what they have and at the end they say, 'But do I still have seizures?' If I answer 'yes,' it can wipe out everything I've just explained." Better to call them "attacks" or "spells" or "episodes," he said.

Benbadis also argued that English dictionaries, both medical and non, associate "seizure" with epilepsy in the first or second definition. The association is a fact of modern usage, he said, and it is "very misleading" to use it to describe a non-epileptic event. It misleads the patient, certainly, but also the medical community.

LaFrance countered that the word "seizure" originally meant  "to be taken hold of" and did not imply epilepsy. PNES patients are indeed "taken hold of" by their seizure-like events, he said. We should not surrender to the modern usage, he argued, simply because it's popular. More essential, though, was LaFrance's point that at first re-diagnosis, the PNES patient is being evicted from both the epilepsy and neurology communities. To kick the patient out of the "seizure" community at the same time, could leave them homeless, so to speak, and feeling still more vulnerable and betrayed.

"The practical reason for keeping the word "seizure" is that it validates the patient's experience and forms an alliance with the clinician." That alliance, says LaFrance, will be essential for effective treatment. 

The Stanford psychiatrist moderating the debate, John Barry, synthesized the two positions, arguing that it may not really matter what you call the events, as long as you both 1) clearly convey the message that while they are not epilepsy, they are no less real, and 2)  preserve the therapeutic bond. 

Beneath the linguistics, but revealed by them, is a deeper struggle. Benbadis is not trained to care for these patients, he says, and he doesn't want to. He has enough work to do just tending his epilepsy patients, whom he can help. As long as the "attacks" that plague PNES patients are said to be "seizures," those patients will keep flooding his clinic.  "Seizures" are things neurologists are obliged to treat; while psychological "attacks" or "episodes" are not. 


Tanvir Syed is the exception who proves the rule. The one epileptologist in the audience who argued for keeping the word "seizure," the Cleveland-based Syed actually enjoys treating the many PNES patients who find their way to his clinic. He doesn't bother sending them to psychiatry; he knows they'll just boomerang back. And the psychiatrists don't really know how to help them anyway. 

And how does Syed treat his PNES patients? "With meditation," he says. "Teaching them to meditate gives them the strength of mind to deal with the emotions associated with their trauma."

I'm writing a long-form piece on PNES, so much more about this later. 

Soldiers and their Seizures

Brenda Patoine has written an interesting and ominous piece about the coming tidal wave of seizure disorders among veterans returning from Iraq. Traumatic brain injury (TBI) has always been associated with a high incidence of epilepsy, which may show up months, and often years, after the initial injury. Many soldiers returning from Iraq and Afghanistan have begun to have seizures and many many more will begin to, even as they settle unsuspectingly back in to life at home. The article, on the Epilepsy Foundation's website, cites 1985 study of vets who’d suffered traumatic brain injury in Vietnam found that 50 percent developed seizure disorders within a few years of returning home.
Patoine writes:

"No one knows how many of those troops with brain injuries will eventually develop epilepsy. But with an estimated 1.4 million troops who have served or are currently serving in Iraq, even the most conservative statistics portend a looming crisis of post-TBI neurologic problems.…”

Patoine goes on to quote Marc Dichter at the University of Pennsylvania who pleas for  preventive action for these high-risk soldiers. “Basically, we’ve been waiting for epilepsy to happen and then seeing if we can treat it… Why aren’t we paying attention to the development of epilepsy, as we do for every other medical disease?” he asks.

Pantione then outlines a few trials that look at how well various anti-seizure meds work as prophylactics for seizures if they are administered soon after the initial injury. That’s a worthwhile approach, sure, but is administering anti-seizure meds as a prevention really the whole deal? I don't know, but either the article failed to describe other avenues of research, or they aren’t happening. Have VA docs looked for patterns in the EEGs of soldiers with TBI but still no seizures, for example, to see which ones develop epilepsy and which ones don’t? Some people are more likely to develop seizures after brain injury, while others have more resilience due to, say, greater adaptive plasticity, or some other mechanism. What about the increase of gabapentin after injury and its influence on the growth of new synaptic connections; might that acceleration of healing growth also make brains more susceptible to seize? Or maybe (probably) those soldiers who become epileptic would have been more likely to begin seizing anyway; the injury just pushes them over the line. If that's the case, what made them so? Is there a genetic link? How about the specific kind and location and intensity of the brain injury? Are those details being tracked as determinants of seizure onset? And finally, how many of these seizures are psychogenic non-epileptic seizures (PNES)? Do VA doctors really know?

This would be a great time to study these things, both for the soon-to-be epileptic soldiers with head injuries and for the millions of non combatants who are going to begin having seizures in the years to come but don't know it. If we can identify their propensity, and mitigate it, before the onset of full-blown seizures, that would be a huge advance.

Seizure Dogs: An Alternate Explanation

I’ve been wanting to write a story about seizure dogs for years, ever since I heard about their ability to sense the onset of epileptic seizures before their masters have any idea that they are going to seize. There’s so little documented material, though, that I kept putting off the story. So I was surprised and fascinated (panicked, actually) to see a piece about dog intelligence in the Sunday NYT that opens with tell of Jet, a seizure dog in New Jersey that, among other amazing talents, puts its body in a position on the floor to break the seizure fall of his master before she even knows she’s going to have one.

The Times piece, by Sarah Kershaw, acknowledges that there is still “mystery” about how dogs can detect seizures before they occur, but it fails to look skeptically at whether the dogs are really able to predict--in a way that no neurologists can—when a seizure is going to occur.

The piece goes on, credulously, I think, to cite “Hungarian researchers [who] reported in a study last year that a guide dog for a blind and epileptic person became anxious before its master suffered a seizure and was taught to bark and lick the owner’s face and upper arm when it detected an onset, three to five minutes before the seizure.” The dog not only “knows more than we thought,” he knows more than any neurologist I’ve ever met or heard of and is more sensitive to the subtle electrical happening in the brain before a seizure than any fMRI or EEG. As explanation for this amazing feat of prediction, Kenshaw suggests, maybe that the dog may be “picking up on behavioral changes or smelling something awry.”

I hate to throw a wet, skeptical blanket on dog lovers, romantics, and telepathy fans, but there might be another, and really fascinating and important, explanation for how the Hungarian dog knows that seizures are coming. I think the dog can predict seizures because its predictions bring them on.

I know how crazy that sounds. But consider this fact, which blew my mind when I read it earlier this year: tens of thousands, possibly hundreds of thousands, of Americans who are diagnosed with uncontrolled epilepsy do not have epilepsy at all. They have real seizures all right, and those seizures look like epileptic seizures, but they aren’t caused by uncontrolled electrical activity in their brains, like epileptic seizures are. Rather, they are what neurologists call “psychogenic non-epileptic seizures,” or PNES, which can only be definitively diagnosed using video-monitored EEG. The patient is hooked up to an EEG, which monitors the electrical activity in his or her brain, and is also video taped so that the seizure behavior can be compared to the EEG. The patients are in no way putting on a show; they fully believe they have epilepsy and generally accept diagnosis and treatment when the real roots of their seizures are exposed.

Here’s the thing, patients with PNES tend to be highly suggestible. When they are told, in an epilepsy clinic, while attached to an EEG and while being videotaped, that a seizure will be provoked, say, by flashing lights, or the administration of a saline solution, the procedures do tend to bring on PNES-type seizures.  Such strategies do not tend to catalyze epileptic seizures. The PNES patients, whose seizures have psychological rather than neurological roots, follow the lead of their examiners and can often be fairly easily “guided” toward seizing.

Here’s the Freakanomics moment: Undoubtedly, some of the seizure-dog-owning patients who believe they have epilepsy are actually suffering from PNES. And these very suggestible patients could well be seizing in response to their dog's behavior. When that Hungarian dog starts to lick his master’s forearm, warning her that she is going to have a seizure, that suggestion could well be enough to induce a psychogenic seizure. The dog and the patient are engaging in a kind of folie à deux.

All you’d need to trash this hypothesis is one patient whose seizure dog could be proved to reliably predict real epileptic seizures, as opposed to apparently-epileptic-but-actually-psychogenic ones. If my hunch is right, though, and I have a hunch it is, it would certainly behoove anyone with a working seizure dog who they think can predict the future, to get themselves to an epilepsy clinic for a video EEG to see if the root of their seizures might be something other than epilepsy. Psychogenic seizures are treatable, but not with anti-seizure medications. And if you are unnecessarily suffering the side-effects and expenses of treatment for epilepsy, but don’t have it, that would be very, very good to know.

I’m not opposed to researching miracle dogs that can smell seizures that haven’t happened, though I’d rather not have to pay for it. But if I’m right, the research projects worth spending real money on are those that would lead to an understanding of how PNES works and how better to better treat it.
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Illustration by Ross Macdonald, from NYT, Oct. 31, 2009