When epilepsy isn’t epilepsy

It looks like a classic epileptic seizure – a grand mal, when patients fall to the floor convulsing or, less often, they show the odd behaviours or fogged attention that can signal a complex-partial spell.

But for some people, what appears to be epilepsy has its roots largely in psychological distress, says neuropsychologist Jason Brandt, rather than in the abnormal electrical discharges that underlie the brain disease. These patients – as diverse as returning war veterans, mothers in child-custody battles or overextended professionals – have psychogenic non-epileptic seizures, known as PNES, an epilepsy-mimicking disorder.

Psychogenic non-epileptic seizures accounts for a surprisingly high number of mistaken hospital diagnoses. More than a third of patients admitted to the inpatient epilepsy monitoring unit at Johns Hopkins for treatment of intractable seizures, for example, have PNES rather than epilepsy.

“We sorely need effective treatments for PNES,” said Dr. Brandt, but that requires a clearer idea of the condition.

Psychiatrists class PNES as a “conversion disorder,” one in which patients unconsciously convert emotional dysfunction into physical symptoms. The specifics of what prompts this are fuzzy, however. Some assume, for example, that patients have suffered severe physical or sexual abuse, though evidence for that is thin. Others claim that stress plays a major part, but how much stress and what kind? “We all have stress,” Dr. Brandt said. “Why is it only some develop PNES?”

To help find answers, he and neurologist and psychologist colleagues compared 40 patients with PNES, 20 with epilepsy and 40 healthy controls. All took a standard survey to reveal how many stressful events were experienced in the past five years. The nature of each stressor – health-related, work- or family-based and so on – was also noted, as was its relative severity and how much stress it caused. Patients also reported ways they’d typically cope with life’s rough spots.

“What we found was that the stresses of life aren’t more numerous or severe for people with PNES than for others in the study. It turns out, though, that they’re much more distressed by what they experience, especially by matters having to do with work, health, social or legal affairs,” Dr. Brandt said.

Also, patients don’t cope well. Those with PNES were less likely to plan a course of action to counter what’s troublesome in life, often suppressing it.

Knowing the results of the study can help clinicians fine-tune psychotherapy for the disorder, Dr. Brandt said.

And hugely important: A better idea of how distinct it is from epilepsy means patients are less likely to undergo unnecessary and often harmful treatment for the wrong disorder.

Article republished courtesy of Johns Hopkins Newsletters as part of Mental Health Month.