All people with epilepsy have seizures, but not everyone who has had a seizure has epilepsy.

The illness, which affects 3.5 million children and adults in the U.S., is a brain disorder characterized by recurring seizures. Many patients live in constant fear of when their next one is coming, when they might black out and lose control of their bodies.

With the right treatment, most people can control epilepsy, and that starts with understanding and diagnosis. Just because you had a seizure doesn’t mean you have epilepsy.

Is it epilepsy?

“If a person has two or more unprovoked seizures, separated by more than 24 hours, they are considered to have epilepsy,” said Dr. Jayant Acharya, neurologist and director of the Comprehensive Epilepsy Center at Penn State Health Milton S. Hershey Medical Center.

But that’s not the only way seizures occur. Sometimes, they can be provoked — the result of severe sleep deprivation, low blood sugar, withdrawal from drugs or alcohol, or — mostly seen in young children — a high fever. “If a seizure only occurs in these settings, we wouldn’t call it epilepsy,” Acharya said.

When a patient seeks medical attention for a suspected seizure, physicians will first try to determine whether it was a seizure or something else, such as syncope (fainting) or a transient ischemic attack, also called a mini-stroke.

The medical team gathers a detailed history to help guide diagnosis. Often, however, patients aren’t able to provide much insight into the event itself.

“Perhaps they came to see me because they passed out and someone told them it looked like they were having a seizure,” Acharya said. “We really want to hear from the witness directly.”

During what’s called a grand mal seizure, abnormal electrical activity occurs throughout the brain, causing a loss of consciousness and violent muscle contractions. In a focal seizure, the abnormal electrical activity is limited to certain areas of the brain. Sometimes a patient will lose consciousness. Symptoms — which may be subtle —include shaking of one limb, unusual head or eye movements, tingling, abdominal pain, rapid pulse, repetitive movements like lip smacking, dilated pupils, vision changes or hallucinations or blackouts.

How do they test for epilepsy?

After gathering the patient’s medical and family history, the physician will often order clinical tests, starting with an electroencephalogram (EEG). This simple, non-invasive procedure measures electrical activity in the brain through small electrodes attached to the scalp.

“We’re looking for interictal epileptiform discharges, which will appear as a spike or sharp wave on the EEG,” Acharya said. “This shows that part of the brain has undergone physiological changes that predispose to seizures.”

About half of people with epilepsy will have normal EEGs. Physicians may order more involved testing, including an ambulatory EEG – when the patient is sent home for two to three days with the electrodes hooked up to their scalp – or video EEG monitoring. The latter involves a patient spending five days in the hospital while the medical team takes more aggressive measures to provoke a seizure in a safe, controlled setting.

Some epilepsy is idiopathic, meaning that the cause is either genetic or unknown, Acharya said. “Then there’s symptomatic epilepsy, which might be caused by a malformation in your brain, or by some type of injury or scarring to the brain, or a brain tumor,” he said. Magnetic resonance imaging or positron emission tomography scans can help pinpoint an underlying cause or location for epilepsy.

Treatment options

Treatment typically starts with an oral medication. If that doesn’t work, physicians can try a different medication or a combination. “Nearly 60% of our patients have success with mono or combined drug therapies,” Acharya said.

A third of people with epilepsy, however, don’t gain control of their seizures with medication alone.

“At our level IV epilepsy center at Penn State Health, we often see patients with drug-resistant epilepsy,” Acharya said. “They have failed multiple drug therapies and have been referred to us to look at other options.”

Those options include surgical resections, during which abnormal brain tissue is removed. This is only possible for patients with focal epilepsy affecting a “non-eloquent part of the brain,” Acharya said. “We won’t touch areas like the primary motor area, the language center or visual cortex.” The medical team will use various tests to evaluate whether removal of the epileptic region of the brain risks causing major neurological complications.

Laser thermal ablation, a newer surgical option, uses heat to destroy small areas of abnormal brain tissue. With surgery or ablation, patients have a 65 to 70% chance of becoming completely free of seizures, Acharya said.

Patients with drug-resistant epilepsy who are not surgical candidates may find relief from their seizures through neurostimulation devices.

Diet can play a significant role in controlling epileptic seizures. The ketogenic diet was developed for epilepsy several decades ago, Acharya said. Originally designed as 90% fat and 10% proteins and carbohydrates, the physician-monitored, restrictive diet can reduce seizures in some people by 50%, but it takes at least three months of strict adherence for it to work.

“People have come up with modifications to make it easier to stay on,” Acharya said. “One is a modified Atkins diet that allows more protein and more carbohydrates.”

Eventually cured?

Epilepsy is considered a life-long condition. But some patients may eventually see their diagnosis resolved.

“If someone on medication goes a few years without having a seizure, we’ll start to wean them off of their medication,” Acharya said. “Many continue to do fine, with no reported seizures. Once they’ve gone 10 years without a seizure — including at least five years being off of all medication — they are considered to have their epilepsy cured or resolved.”

Even if a patient never full recovers from epilepsy, by controlling their seizures and managing their epilepsy, they can enjoy a high quality of life, Acharya said.