The challenges of epilepsy and treatments to improve quality of life

January 19, 2024 | by Endeavor Health
Categories: Healthy Driven Minds

Epilepsy is a frightening condition that can come on at any time, in a person of any age, race or ethnicity.

The good news is, there are treatments available and there are doctors constantly striving to give patients the best quality of life possible.

 Amit Ray, MD, is one such doctor. Dr. Ray is the director of the comprehensive epilepsy program at Endeavor Health and a senior clinician educator at the University of Chicago.

Epilepsy is a condition which is categorized by recurrent and unprovoked seizures. Isolated seizures can be provoked by other circumstances.

Approximately 10 percent of the population will have a seizure at some point in their lifetime, but only 1 percent will develop epilepsy. Traditionally, epilepsy was characterized by two or more seizures, although that thinking has changed and according to new guidelines, one seizure and abnormal testing could also be considered epilepsy, said Dr. Ray.

“Basically, it is a short circuit in the brain because of an irritability in the brain which generates abnormal electric activity and that results in the patient having a seizure,” he said.

Epilepsy can start at any point in a person’s life, although peak times are in childhood and after age 60. “But a seizure can happen at any point in time,” said Dr. Ray.

What a seizure looks like

Seizures have several manifestations. Commonly, patients will fall down, experience stiffening and jerking of the body, drooling, eyes rolling back in the head and loss of consciousness. “That is the best-recognized form of epilepsy, but it can have a variety of manifestations,” Dr. Ray said.

“Some patients will just have staring spells. Some patients will have seizures with lip smacking. Some people may have slight abnormal movements and an inability to respond. Occasionally, patients can have laughing seizures, déjà vu sensations, out of body sensations. Some people may have a shaking of one part of the body. But most common is the grand mal. That’s the scariest one and the best recognized.”

Managing epilepsy

There are several methods of managing epilepsy, including medications, surgery, devices and even a specialized diet.

  • Medications: “The good thing is, we have lots of seizure medications and the other good thing is more than 70 percent of patients with epilepsy will be controlled with seizure medications,” Dr. Ray said. If a patient has gone through all the medications — even just two, because the chances of finding one that works goes way down if the first few medications aren’t effective — other options must be explored.

  • Surgery: For the other 30 percent of patients that medications can’t help, surgery or a device is another option. “The most curative treatment option is epilepsy surgery. That can only be done with a certain type of epilepsy where the seizures originate in one part of the brain,” he said.

    It’s a fairly long process involving multiple testing to identify the area of the brain where the seizures originate. You make sure the area isn’t a functional area in the brain and if you remove a part of it that the patient won’t be worse off.

    “Then we see if we can remove that safely and if we can, there is a chance for a cure,” said Dr. Ray. About 70 percent of those patients will be cured of epilepsy and off medications.

  • Devices: Additionally, devices can help to significantly improve patients’ seizures. Devices are not a cure, but they may help patients head seizures off before they occur. Also, the effectiveness of devices doesn’t wear out over time. About half of patients have freedom from seizures and about 70 percent have significant improvement with these devices, said Dr. Ray. Two devices include:

    • The deep brain stimulation device is implanted in the chest cavity with electrodes placed inside the thalamus. It emits stimulation and reduces the seizure burden and frequency.

    • The responsive neurostimulation device is implanted under the skull. “This is for patients who are not responsive to seizure medications and who are not candidates for surgery, either because the exact focus has not been identified or there is more than one area of the brain that is causing the seizure. Or the area of the brain that is causing the seizure cannot be safely removed,” Dr. Ray said. It is more invasive than the regular stimulator, but it is a targeted stimulation so you can put the electrodes on the area you suspect the seizures are coming from. “Basically, there is a buzz of electricity coming from the patient’s brain, this device recognizes it and sends its own buzz of electricity there that aborts the seizure,” he said.

  • Diet: The ketogenic diet has also shown to have some success in reducing seizures, although it comes with its own set of difficulties. It’s an extremely challenging diet to maintain and to tolerate, but it has shown the most success in pediatric patients with severe epilepsy. “In the adult population, sometimes we use a modified Atkins diet to try to come close to it, but that has had mixed success,” Dr. Ray said.

 Challenges of epilepsy and maintaining quality of life

There are significant morbidities associated with epilepsy, including depression, anxiety, risks of injury and risk of SUDEP, or Sudden Death in Epilepsy. It varies, but affects about one in 1,000 patients with epilepsy. The biggest risk for SUDEP is uncontrolled seizures or grand mal seizures.

There are also significant quality of life issues associated with epilepsy and with being on seizure medications. Epilepsy patients have driving restrictions in Illinois and can lose their jobs. They may face issues affecting fertility and sexual issues.

The epilepsy program at Endeavor Health is a comprehensive program where patients with all kinds of epilepsy have access to a variety of treatment options, including surgery for certain patients who don’t respond to medications.

“The goal for patients with epilepsy is to have as few seizures as possible,” Dr. Ray said. “For most patients, the goal is zero seizures and without any side effects of the medications.”

“Our goal is to maintain the highest quality of life for the patient,” he added. “Patients with epilepsy should have as normal a life as possible.”

Patients with epilepsy greatly benefit from the expert team of neurologists and neurosurgeons at Endeavor Health. Learn more about our epilepsy program.

NorthShore University HealthSystem, Swedish Hospital, Northwest Community Healthcare and Edward-Elmhurst Health are now united under one name, Endeavor Health. We’re setting a new standard for healthcare that’s focused on you, because your best health is our endeavor. Learn more.

Resilience with Chronic Illness 750x500

Resilience possible in the face of chronic illness diagnosis

Being diagnosed with a chronic disease can be terrifying and mentally debilitating. Managing the diagnoses requires...

Read More

Brain scan images 750x500

The challenges of epilepsy and treatments to improve quality of life

Epilepsy is a frightening condition that can come on at any time, in a person of any age, race or ethnicity. The good...

Read More

Neuro Jennifer Geary with puppy Bayleecrop

39-year-old Lisle woman survives ruptured aneurysm

Jennifer Geary doesn’t remember most of the events of three weeks in January 2023. When she read the medical chart wit...

Read More