"People with psychogenic nonepileptic seizures can often have other psychological or psychogenic symptoms [like depression and trauma], and it is that comorbidity that people have been trying to sort out for a long time," said Dr. Martin Goldstein, director of cognitive neurology at the Mt. Sinai School of Medicine in New York.
"If you treat the comorbid, associated psychological symptoms of patients who have nonepileptic seizures, these patients do over time do better. They do have a reduction in frequency and severity of nonepileptic seizures."
Seizures are in fact a primitive way to express emotions or feelings that cannot be expressed verbally or in other ways, such as crying.
And seizures were a way for Jane Smith to express what had happened in her past. After more therapy, Jane realized that she had also had seizures during episodes of abuse as a child starting at age four, periods she described as "lost time."
"I remembered the first time I was being [sexually] abused and that I had a seizure," Jane said. "And then when I have had memories and flashbacks of it, that has caused seizures."
Jane said her seizures were likely a coping mechanism for her abuse. Eventually, as she took control of her body and her life as a teenager, Jane repressed memories of the abuse and the seizures stopped. Neither the memories nor the seizures surfaced again until she was 31 and received the letter in which her parents cut off contact.
Jane is unique in that she was able to identify the connection between her seizures and past trauma quickly. The Smiths run a resource Web site for people with nonepileptic seizures called The Nonepileptic Seizure Organization, and John said that most of the people who get in touch with him are clueless about what could be causing their condition.
"Nonepileptic seizure patients feel absolutely, totally neglected. They literally are desperate," John Smith said. "They want to believe it's a medical problem and they just don't make the [trauma] connection."
As a result, people with PNES are shunted back and forth between neurologists and psychologists as they attempt to classify and treat their condition.
"From a practical point of view, what else are we going to do?" said Dr. Selim Benbadis, a professor of neurology and director of the Comprehensive Epilepsy Program at the University of South Florida in Tampa.
The subtleties of classifying a severe physical problem, such as a seizure, that is brought on by intense emotional troubles and are difficult to treat with medication make doctors uncomfortable, according to Benbadis. He estimates the prevalence of nonepileptic seizures to be between 2 to 33 in 100,000 people.
Confounding the issue is that over 20 percent of people with epilepsy may also have PNES, which could lead to people with PNES being misdiagnosed with epilepsy and treated with drugs that prove ineffective. In addition, a small subgroup of patients who fake seizures for attention, for money, or other advantageous reasons -- known as malingering -- can bias treatment providers against people who don't know the cause of their seizures.
Because she identified the connection between her past trauma and her seizures, Jane could explore treatment options faster than others in her position. Most people with PNES average seven years before receiving proper diagnosis and treatment.