5 ways to take charge of your epilepsy care and prevent seizures

When you or a loved one has Epilepsia, finding the right treatment plan and care team can be a challenge. If you’re feeling overwhelmed by the options or aren’t satisfied with your current epilepsy medication, you’ve come to the right place.

For many people living with epilepsy, treatment often starts with taking medication. While several medications help control seizures, in nearly 1 in 3 epilepsy cases, these medications don’t work as they should. And many people don’t realize they have other choices.

“For people whose epilepsy does not respond to medications, the average timeline for them to receive care in an epilepsy program is 10 years,” said Victor H. Gonzalez Montoya, MD, a neurologist and epileptologist on the medical staff at the Baylor Scott & White NeuroHealth Institute Epilepsy Center in Lakeway. “That’s a significant delay in receiving care that could help in controlling their seizures.”

That’s why it’s important to know all your options for epilepsy care—beyond just medications. Use these five tips to take charge of your next steps and start your journey to better seizure control.

5 ways to take charge of your epilepsy care and prevent seizures

1. Speak up about side effects or medications that aren’t working

If you’ve tried a specific medication or multiple medications, but epilepsy is still getting in the way of life, the first step is to speak up. Talk to your doctor if you’re taking a medication but have the following:

• Seizures that are not controlled as expected
• Side effects such as fatigue, dizziness or gastrointestinal problems
• Any symptoms or side effects that are significantly affecting your quality of life

“When I see patients in my office, two of the main concerns are what could happen if they have another seizure and how we can change their medication regimen to make side effects better,” said Diego Tovar, MD, a neurologist and epileptologist on the medical staff at the Baylor Scott & White NeuroHealth Institute Epilepsy Center. “If you talk to your doctor about these concerns and they’re not sending you for an additional evaluation, then look for an epilepsy center that can help you find answers.”

2. Ask about specialized monitoring to confirm your diagnosis

One of the best ways to find answers when it comes to understanding your seizures is an epilepsy monitoring unit, or EMU. This in-hospital unit allows doctors to use specific methods that bring on seizure activity.

A trained team then carefully monitors you and records the seizure with video and EEG—a test that measures brain activity. Most people stay on the unit for three to five days.

“An epilepsy monitoring unit is the only place where you can confirm the diagnosis of epilepsy, and it provides access to resources for an extensive workup that aren’t available at other places,” Dr. Montoya said. “It’s helpful for patients who potentially need brain surgery or devices implanted to treat seizures.”

3. Take a team approach to your care

Your primary care provider and general neurologist  serve as your home base for care. But your care team shouldn’t stop there. Look for a center that integrates board-certified epileptologists with other specialties like neurosurgery, neuropsychology and neuroradiology—giving you complete care all in one place.

With this team approach, you’ll benefit from the opinions of several doctors with expertise in the field. Your team can discuss your case, provide you with several options, explain the pros and cons, and let you decide what’s best for you.

“When you choose a specialized epilepsy center, it opens your access to a multidisciplinary team of people, not just one doctor,” Dr. Tovar said. “We don’t make these decisions by ourselves—it’s a collective process.”

4. Research all your epilepsy treatment options

Different people benefit from different types of treatment for epilepsy. After a stay in the EMU, your care team will use the information about the type of seizures you had and what structures in your brain were involved to guide your care, including deciding if surgical treatment could help.

Surgery and devices for epilepsy include:

• Resection surgery: This type of neurosurgery removes the precise area of your brain that’s been identified as the source of your seizures.
• Laser ablation: Also known as laser interstitial thermal therapy, or LITT, this procedure uses heat to destroy cells in the brain causing seizures.
• Responsive neurostimulation: A small device is placed under your scalp that’s connected to electrodes placed on or in your brain. The device sends an electrical current when it detects seizure activity to stop or shorten the seizure.
• Deep brain stimulation: Deep brain stimulation uses a device placed under the skin near your collarbone with wires placed deep into the brain. This device sends electrical currents to stimulate a specific area within your brain.
• Vagus nerve stimulation: This device is placed under the skin in the chest and sends electrical currents through the left vagus nerve—which runs from your brain stem through your chest and into your abdomen.

5. Stay on top of your follow-up care

Creating a treatment plan for your epilepsy takes a team, and your follow-up care should be the same. Your care goes beyond just visiting the hospital or clinic. Continued care through an epilepsy program allows for ongoing coordination between all the different parts of your healthcare team. It also gives you even more options as new treatments are developed.

“The tools available for the treatment of people with epilepsy are constantly evolving,” Dr. Tovar said. “Epilepsy is a chronic condition. Being connecting to a specialized epilepsy center allows you to access new treatments and new technologies that likely are not available at the office of a general neurologist.”

Ready to take your next step for seizure control? Find an epilepsy specialist near you.