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I started looking around for valid and useful information about non-pharmaceutical treatments for my temporal lobe epilepsy when I found out from online neurology and medical sites that 30-40 percent of us cannot take the drugs prescribed by their doctors, which Eve LaPlante also mentioned in her book Seized.  The Agency for Healthcare Research Quality (AHRQ)  was one of the first sites I checked. Their research looked impressive. Under the findings, I zeroed in on the one question I was looking for:

“Do all patients diagnosed with epilepsy that is deemed to be treatment-resistant truly have epilepsy?

This question attempts to gauge the extent of the need for rediagnosis among patients thought to have treatment-resistant epilepsy. Our evaluation of the published literature suggests the following:

  • Meta-analysis suggests that up to 35 percent of patients originally diagnosed with treatment-resistant epilepsy either do not have epilepsy, or they have a combination of both epileptic and nonepileptic seizures. Because this number is derived from studies that enrolled patients suspected of having nonepileptic seizures, the actual number is probably lower.
  • None of the studies included in the above-mentioned meta-analysis contained pediatric patients. Thus, the prevalence of pediatric patients diagnosed with treatment resistant epilepsy and who either do not have epilepsy or have a combination of both epileptic and nonepileptic seizures is unknown.
  • These findings suggest that some patients enrolled in studies included in this evidence report may not have epilepsy. If this is the case, then our estimates of the efficacy of the interventions that we address may be imprecise.”

OK, so what I got from this was that the researchers felt a large number of the 35 percent of drug-intolerant patients did not have epilepsy. Interesting, considering that epilepsy is an umbrella covering more than 40 known versions of the condition. Each patient displays the manifestations of the condition in different ways. If ten TLE patients were to enter a room, none would have the same symptoms occurring in the same way. I can only guess that this is due to the individuality of each person’s brain.

In addition, EEGs cannot detect deep-brain activity, and MRIs cannot always show the source of the TLE. Diagnosing from the comprehensive medical record seems to be the most accurate way to determine temporal lobe epilepsy.

If seizures manifest in diverse and unusual ways, and hold the potential of being undetected by the two diagnostic tools neurologist rely on for direction, then how accurate is the non-epileptic seizure diagnosis? It seems to me that they were saying “if we can’t treat it, you don’t have it.”

Moving along to the Yale Office of Public Affairs and Communications, Health and Medicine, I found an article entitled Twenty Percent of People with Epilepsy Develop Drug Resistant Seizures featuring the research of Susan Spencer, M.D., a professor of neurology at Yale School of Medicine, in which she wrote:

 “The researchers said in the study that much remains unknown about the natural history of intractable epilepsy, including how long it typically takes before intractability becomes evident”.

It went on to talk about patients who started on drugs, but were unable to continue. “The possibility that an early benign course does not necessarily ensure a good long-term outcome is sobering news,” Spencer wrote. “However, if it is true, then we may also be able to learn to identify early those patients who will later develop intractable temporal lobe epilepsy regardless of a relatively benign initial course. This raises the possibility of identifying the mechanisms involved in this progression and could eventually open the door to therapeutic approaches that might prevent some forms of epilepsy from becoming intractable.”

To be frank, I found this information more usable. Here was someone who understood anti-epilepsy drugs don’t work for all patients. Then I found another site detailing Spencer’s research. It is The National Institute of Neurological Disorders and Stroke. Anne T. Berg, Ph.D., of Northern Illinois University in DeKalb, along with a multicenter team directed by Spencer, set out to determine the percentage of patients who typically become drug resistant and work to prevent this occurrence. In the study, the epileptic group most likely to develop drug resistance had partial seizures. The researchers identified twenty percent of the partial-seizure population as drug-resistant. The study looked at patients who opted for surgery, most of whom had TLE.

The study observed 333 patients. “The 282 patients for whom historical data were available had been diagnosed with epilepsy an average of 9 years before their epilepsy became intractable. Intractable epilepsy in this study was defined as a failure of two medications to control seizures . . . In patients whose epilepsy began during their 30s and 40s, however, seizures tended to become intractable immediately or within only a few years.”

Both statements were a huge revelation to me! What I understood them to say, after reading the entire report, was that individuals with partial seizure disorders, particularly TLE, were more prone to develop drug-resistant epilepsy. The time frame of diagnosis became a big factor with TLE patients. The older the patient is when diagnosed, the greater the chance for developing drug resistance. This study defines that condition as the failure of two AEDs.

Now, here we play with numbers a little. If you are a physician and have a TLE patient over the age of 35, you should be aware there is a 20-percent or greater chance the patient cannot take the AED. Twenty percent is a lot. If you have a 20-percent chance or greater of dying in a plane crash, would you board the plane?

Given these figures, why is there still so little offered to those of us who can’t tolerant the drugs? Even worse, why does the attitude of “if I can’t treat it, you don’t have it” still persist?