Living with Epilepsy: Expert Advice for Patients and Families

A diagnosis of epilepsy can feel overwhelming, bringing a host of questions about daily life, safety and managing the condition, which is a neurological disorder characterized by recurrent seizures. While epilepsy affects millions of people worldwide, understanding how to navigate it is a personal journey that can differ from one patient to the next.

Two experts with Baptist Health Miami Neuroscience Institute—neurologist Luis Tornes, M.D., director of the Institute’s epilepsy program, and neurosurgeon Aviva Abosch, M.D., Ph.D., deputy director of the Institute, director of epilepsy surgery and co-director of functional neurosurgery, and Esernia Endowed Chair in Surgical Treatment of Adult Epilepsy & Movement Disorders—say that with the right knowledge and support, individuals with epilepsy can lead full and productive lives.

Epilepsy a Common Neurological Disorder

The U.S. Centers for Disease Control and Prevention (CDC) reports that in 2021–2022 around 2.9 million U.S. adults—roughly 1% of the adult population—had “active epilepsy” (defined as self-reported doctor-diagnosed epilepsy with either taking medication or having a recent seizure).

According to the American Epilepsy Society, epilepsy is more prevalent than several other major neurological conditions combined. And the National Institute of Neurological Disorders and Stroke (NINDS) says epilepsy is the fourth most common neurological disorder worldwide. The lifetime risk of being affected by epilepsy is “1 in 26 people worldwide,” it says, underscoring just how many individuals and families are touched by this condition.

What Causes Epileptic Seizures?

Epilepsy is defined a disorder of the brain characterized by an enduring predisposition to generate epileptic seizures. A seizure occurs when a burst of uncontrolled electrical activity happens in the brain.

Clinically, epilepsy is diagnosed when a person has:

• Two unprovoked seizures more than 24 hours apart
• One unprovoked seizure with a high (60% or greater) estimated risk of recurrence over the next 10 years
• A diagnosis of an epilepsy syndrome

Dr. Tornes says there are many causes of epilepsy, including genetic predisposition, but in about half of all cases, there is no known cause.

“Epilepsy usually stems from brain conditions such as genetic factors, prior injury, stroke, infection, tumors or other structural changes,” he notes. “Things like missed medication, alcohol, illness or dehydration can trigger seizures in those who have epilepsy.”

If epilepsy is suspected, diagnostic tests may include an MRI to check for structural abnormalities in the brain, electroencephalogram (EEG), selected functional studies when indicated, and neuropsychological testing.

Advances in Epilepsy Diagnosis and Treatment

Fortunately, says Dr. Tornes, advancements in technology are helping neurologists pinpoint and treat seizures.

Stereoelectroencephalography (sEEG) uses tiny depth electrodes to localize seizures with millimeter accuracy. “Once we know the source and the network it drives, we can personalize treatment,” Dr. Tornes says. “Options include either resective surgery when the focus of the seizures is well-defined, or neuromodulation when medications aren’t enough or surgery isn’t the best fit for the patient.”

Epilepsy treatment has expanded well beyond medications. In addition to optimizing modern anti-seizure drugs, many candidates benefit from neuromodulation and laser ablation.

• Vagus Nerve Stimulation (VNS): an implanted device that provides intermittent stimulation to help reduce seizure frequency.
• Responsive Neurostimulation (RNS): a closed-loop system that senses a patient’s unique seizure patterns and delivers brief pulses to interrupt them at their source.
• Deep Brain Stimulation (DBS): continuous or scheduled stimulation of deep brain structures (such as the anterior thalamus) to modulate seizure networks.
• Laser Interstitial Thermal Therapy (LITT/laser ablation): a minimally invasive option that uses a thin laser probe, guided by real-time MRI, to precisely ablate seizure-generating tissue. When appropriate, this often comes with shorter hospital stays and faster recovery than open surgery.

Therapy selection is individualized based on seizure type, where seizures begin and patient goals. Some people benefit from combining medications with a device or LITT, and dietary therapies—ketogenic or modified Atkins—may also play a role.

Pinpointing the Seizure’s Source

At Miami Neuroscience Institute, a state-of-the-art epilepsy monitoring unit allows 24-hour monitoring of patients over several days with continuous video-electroencephalogram (EEG) technology.

It provides a safe and comfortable space for the patient while adjustments are made to anti-seizure medications or seizure-activation procedures (e.g., sleep deprivation) are used, allowing seizures to occur in a tightly controlled clinical environment. The EEG records brain activity, which helps physicians not only categorize the type of seizure but also locate its source.

“This is one of the few times we actually want the patient to have seizures, so we can identify where the seizures are being generated,” Dr. Tornes explains. “We want to pinpoint exactly where these seizures are coming from so we can tailor our treatment more precisely.”

Common Triggers for Epileptic Seizures

While seizures can sometimes occur without a clear cause, many people with epilepsy learn to identify specific triggers that make seizures more likely. Dr. Abosch says that common triggers of epileptic seizures can include one or more of the following:

• Lack of sleep
• Stress
• Illness or fever
• Alcohol or other substances
• Missing medication doses

Understanding the nuances of your specific condition and recognizing your personal triggers is a crucial step in managing epilepsy, says Dr. Abosch.

“Keeping a seizure diary can be a powerful tool,” she says. “Note the date, time and circumstances surrounding each seizure. Did you miss a meal? Were you under more stress than usual? Did you get less sleep the night before? Over time, patterns may emerge, helping you and your doctor identify and manage potential triggers.”

What to Do When Someone Has a Seizure

Witnessing a seizure can be frightening but knowing how to respond calmly and effectively can make a big difference in ensuring the person’s safety.

Dr. Abosch says that 20 - 30% of seizures in patients with epilepsy are the type that many people recognize—a tonic-clonic seizure (formerly known as a grand mal seizure)—in which the person experiences convulsions, muscle rigidity and loss of consciousness.

If you see someone having this type of seizure, Dr. Abosch advises following these simple first aid steps:

1. Stay Calm and Time the Seizure: The seizure’s duration is important information for medical professionals.
2. Create a Safe Space: Gently guide the person to the floor and clear the area of any hard or sharp objects. Remove glasses and loosen tight clothing around the neck. If possible, place something soft like a folded jacket under their head.
3. Turn Them on Their Side: Carefully roll the person onto their side. This helps keep their airway clear and allows secretions to drain, reducing the risk of choking.
4. Do Not Restrain Person or Place Objects in Their Mouth: It’s a myth that a person can swallow their tongue.
5. Stay With Them Until Fully Awake and Oriented. Offer reassurance. Do not give food, drink or medications by mouth until fully alert.

If the person has a prescribed rescue medication, such as nasal midazolam or diazepam, follow their seizure action plan. After the seizure ends, the person may be disoriented, tired or confused. Stay with them, speak calmly and help orient them to where they are until they are fully awake and aware.

When to Call for Help

While not every seizure is a medical emergency, Dr. Abosch says that certain situations require immediate medical attention. She advises calling 911 if any of the following conditions are observed:

• The seizure lasts longer than five minutes.
• A second seizure starts shortly after the first one ends.
• The person has difficulty breathing or appears to be in distress after the seizure.
• The seizure occurs in water.
• The person is pregnant, has diabetes or is injured during the seizure.
• It is the person’s first-ever seizure.

Finally, Dr. Abosch advises following the individual’s seizure action plan, if known.

Helping Patients Lead Seizure-Free Lives

It can be difficult for epilepsy patients to find the care they need, Dr. Tornes acknowledges, but he says Miami Neuroscience Institute is committed to helping patients manage their disorder and lead seizure-free lives. “Many of our patients are affected every day by this disease. And it’s not just them; it affects their families, too.”

Fortunately, Dr. Tornes notes, advances in medication and other treatment options have made it possible for many people with epilepsy to control their seizures effectively. “This can lead to a marked improvement in quality of life, allowing individuals to participate in most of the same activities as those without epilepsy,” he says.

Dr. Tornes adds one final thought for anyone living with epilepsy: “Having a clear action plan that is shared with family, friends and coworkers is essential. This ensures that everyone around you knows when and how they can help, providing peace of mind for you and your loved ones.”

Learn more about Baptist Health Brain & Spine Care’s epilepsy program here.