Strategies for managing epilepsy is the focus of a free symposium for patients, families and caregivers on Saturday, Nov. 22, at the Daniel Drake Center for Post-Acute Care. One of those strategies involves encouraging patients whose seizures are not controlled by medication to undergo 24-hour monitoring, says David Ficker, MD, Director of the Epilepsy Monitoring Unit (EMU) at the UC Epilepsy Center.

When Dr. Ficker and his team see patients who have failed to get relief from seizures after trying two medications, they recommend a stay in the EMU so that they can determine what type of seizures they are having and where the seizures are coming from. “Testing in the EMU will tell us what direction we can take to get the seizures under control,” Dr. Ficker says.

People who have failed to get relief after trying two medications are said to have medication-resistant or “refractory” epilepsy. Unfortunately, the success rate for a third medication after two have failed is only 5 percent, Dr. Ficker says. “The success rate for a fourth, fifth or sixth medication is even lower.”

Nevertheless, patients will often spend 15 to 20 years coping with refractory epilepsy before undergoing testing in an EMU.

Testing in the EMU can determine whether a patient is a candidate for surgery or brain stimulation, Dr. Ficker says. Patients with temporal lobe epilepsy can often be successfully treated with surgery, which involves removing a small piece of the brain where the seizures are originating. “If I see someone who has failed two drugs and is diagnosed with temporal lobe epilepsy, we’ll probably recommend to that patient that they consider surgery.”

Dr. Ficker may recommend other treatments, including vagus nerve stimulation (VNS), for patients whose seizures are not emanating from the temporal lobe.

“We try to get aggressive in seizure treatments for patients with refractory epilepsy,” Dr. Ficker says. “This could involve a medication change or looking at other options such as stimulation devices or a carbohydrate-restricted diet.”

The UC Epilepsy Center has been approved to implant a device known as the RNS responsive stimulator, a programmable, battery-powered device that delivers electrical pulses to the brain via implanted leads. The device also includes EEG recording capabilities. When the device detects abnormal brain activity (an impending seizure), it responds by producing a mild stimulation that “re-sets” brain activity to its normal level, thereby stopping the seizure in its tracks. The device is manufactured by NeuroPace.

Helping patients with medication-resistant seizures is important because of a small but real risk known as SUDEP, or sudden unexpected death in epilepsy. SUDEP is the sudden death of a person known to have epilepsy when no other reason for the death exists. It is seizure-related and is likely the result of respiratory or cardiac arrest.

Studies in the medical literature indicate that SUDEP occurs in one of every thousand people with epilepsy, Dr. Ficker says. “Overall, it may not seem like a huge number. But if you look at specific populations of people with epilepsy, the rate is higher in patients who are classified as having poorly controlled seizures. We think that poorly controlled seizures is a risk factor for SUDEP.”

Historically, many physicians have avoided discussing SUDEP with their patients who have epilepsy because the risk is low and they fear of causing unnecessary anxiety. “People with epilepsy are likely to have a lower risk of SUDEP than the risk that they will suffer an injury from a seizure or seizure-related driving accident,” Dr. Ficker says.

But new research, published in the journal Epilepsia, suggests that although most patients and caregivers “reported feelings of fear, anxiety, and sadness after first hearing of SUDEP,” they nevertheless wanted to discuss it with their doctor. Further, while researchers reported that this worry “escalated with knowledge of SUDEP and increased epilepsy severity,” approximately one-half of patients and caregivers “believed that knowledge about SUDEP would influence their epilepsy management.”

Patients, families and caregivers who attend the Nov. 22 epilepsy symposium will learn about all currently available means of controlling seizures.

– Cindy Starr, MSJ