While living with epilepsy can mean managing the unpredictable nature of seizures and navigating a social stigma, people with epilepsy can lead healthy, productive lives. The important thing is to understand the condition and your treatment options and find helpful resources.
What is epilepsy?
Epilepsy is a neurological condition marked by seizures. A seizure is a sudden jolt of electrical activity in the brain. It can cause temporary confusion, a staring spell, sporadic jerking movements in the arms and legs and even a loss of consciousness.
Epilepsy is characterized by two or more seizures at least 24 hours apart without a known cause.
How is the source of seizures found?
New diagnostic technologies have made pinpointing the origin of seizures possible with a minimally invasive procedure.
In about half of patients, a care team can determine the origin of seizures through imaging and encephalography, commonly referred to as an EEG, which involves placing electrodes on the scalp. No invasive procedure is required.
In the other subset of patients, however, diagnosing requires placing electrodes internally. With stereotactic electroencephalography, the surgeon makes very small incisions in the scalp followed by small holes in the skull to slide electrodes into the brain.
How is epilepsy treated?
Commonly, antiepileptic medications are prescribed. But if you’ve had epileptic seizures for more than a year and have tried at least two different epilepsy medications that you tolerated well with minimal side effects, your seizures may be considered drug-resistant.
That’s when it’s time for you and your doctor to consider other treatments. “Two-thirds of patients will respond to the first or second drugs,” said Dr. Dario Englot, surgical director of epilepsy for Vanderbilt Health. “But one-third of patients are going to have seizures that are resistant to drugs, no matter which and no matter how many drugs they try.”
You can also try:
- Dietary changes. “A ketogenic diet is one type of diet that some patients have responded to and had decreased seizures,” Englot said. The ketogenic diet is high in fat and low in carbohydrates, according to the Epilepsy Foundation. It should be prescribed by your doctor and monitored with the help of a dietitian.
- Surgical and nonsurgical interventions. There is a spectrum of procedures, including minimally invasive options, to both diagnose and treat epilepsy.
- Cannabis options. “Cannabis is an area of research that’s now being explored at certain centers and helping certain patients,” Englot said. He’s referring to oral-based treatments like cannabidiol, commonly known as CBD oil. These are treatments without the tetrahydrocannabinol (THC), the main psychoactive ingredient in cannabis.
What are the minimally or non-invasive treatment options for epilepsy?
Ablation destroys the area of the brain where seizures originate. In a stereotactic laser ablation, the surgeon inserts a laser probe through a small hole in the skull while the patient is under general anesthesia. With heat, the laser probe then destroys the area that causes the seizures. The surgeon watches the process in real time via an MRI scanner.
Brain stimulation techniques can help reduce or stop seizures without the need to resect, remove, or ablate any part of the brain. The two current FDA-approved brain stimulation techniques are responsive neurostimulation and deep brain stimulation.
Responsive neurostimulation can be thought of as a “pacemaker for the brain,” Englot said. The surgeon places electrodes into the areas causing seizures and permanently implants a small device that constantly records brain activity. “When that area is about to produce a seizure, it gives an electrical stimulation that the patient is unaware of and doesn’t cause side effects, and it prevents that seizure from happening,” he said.
Deep brain stimulation doesn’t require knowledge of exactly what part of the brain is producing seizures. The electrodes are placed in the thalamus and constantly stimulate it. “That’s an area of the brain that connects to almost all other areas of the brain,” Englot explained.
Vagus nerve stimulation also doesn’t require brain surgery. In this procedure, a surgeon will implant an electrode into the patient’s neck at the vagus nerve, a nerve that connects to the brain. A pacemaker-like device is then implanted into the chest and connected to the electrode. “Stimulating that nerve decreases seizures in many patients,” Englot said.
Explore more on epilepsy treatment
What to do when epilepsy medication doesn’t work for you
If antiepileptic meds don’t prevent your seizures, you have other options.
Epilepsy surgery: what you need to know
A surgical procedure might help if antiepileptic medications aren’t successful or if medication side-effects are bothersome.
When to consider epilepsy surgery for your child
If medications aren’t controlling your child’s seizures, surgery could help.
What are the surgical options for treating epilepsy?
Epileptic seizures result from irregular activity of brain cells called neurons. The type of surgery needed depends on the location of the neurons that start the seizure and the age of the person having the surgery. Types of surgery include:
- Craniotomy is the most common procedure for epilepsy. During this procedure, the surgeon examines the exposed brain, records EEG activity and then removes the portion of the brain that’s causing seizures.
- Corpus callosotomy is surgery to completely or partially remove the corpus callosum, the part of the brain that connects nerves on the right and left sides of the brain. It is typically used for children who experience irregular brain activity that spreads from one side of the brain to the other.
- Hemispherectomy is a procedure to remove one side of the brain and is generally done only in children who experience seizures that originate from multiple sites in one hemisphere.
- Functional hemispherectomy removes the connecting nerves without removing actual pieces of the brain. It is primarily used in children.
How to manage emotions related to epilepsy
If you feel down, upset or scared, talk with your health care provider. And be open with the people in your life. Talking about epilepsy can help them understand. It can also help you feel better.
You may be scared to go out in public for fear of having a seizure. Or you may just get frustrated with having epilepsy. Such feelings are normal, but they can lead to depression if left unchecked. If you have any of the following, call your health care provider:
- Feeling down most of the time
- Feeling hopeless or helpless
- Losing pleasure in things you used to enjoy
- Sleeping less or more than normal
- Having a big change in appetite or weight
- Having trouble focusing, remembering or making decisions
- Staying away from friends or family
Explore more about Brain & Memory
Living well with epilepsy
Why is it important to see an epilepsy specialist?
Many patients with epilepsy see general practitioners to manage their care, but these physicians may not be specialized. This can lead to problems with initial diagnosis and determining the origin of the seizures.
Less than 5% of patients are managed by an epilepsy specialist. “The average time that people have epilepsy before they are referred to a specialist at an epilepsy center is 20 years,” Englot said. “And less than 20 percent are ever referred at all.”
Patients can find a specialist by reviewing facilities accredited by the National Association of Epilepsy Centers. The Vanderbilt Epilepsy Center is recognized by the National Association of Epilepsy Centers as the only Level 4 epilepsy center in Tennessee for adults, for example, and it is one of only two Level 4 centers in the state for childhood seizures, as well.
