What to expect when a loved one has epilepsy

Robyn Nieto is a senior marketing specialist with Sharp Grossmont Hospital.

The moments before a seizure, and right afterward, can be pretty frightening for people with epilepsy, even though we’ve been there before.

Loved ones and others may also live in a state of high alert and worry, especially if they have no experience seeing a seizure in real time. For that reason, it’s essential that they understand the condition and what a seizure may look like.

I began having seizures at age 28, but I’m one of the lucky ones. Modern medications mean I’m virtually seizure-free. That doesn’t, however, mean I haven’t experienced one since being diagnosed.

“Breakthrough seizures” can happen for several reasons. This can include missed medications, lack of sleep, bright or blinking lights, or medication changes, which can cause a seizure to break through while you’re tapering off one medication and onto a new one.

Educating your loved ones

When I was first diagnosed, my family members read about epilepsy and learned what to expect. I also gave close friends and neighbors a heads-up to cast a wider safety net for myself.

Years later, I waited until date No. 3 to tell my now husband about my condition. It’s a bit awkward but essential. Luckily, he took it in stride and set off to learn more.

I explained that most of my seizures — though infrequent — had been breakthrough seizures but were the most intense type, called tonic-clonic, or grand mal, seizures. He learned about the different types of seizures and their symptoms through resources such as the Epilepsy Foundation and the American Epilepsy Society.

“It’s important that caregivers and family members understand what a seizure can look like and involve,” says Dr. Yu Dennis Cheng, a board-certified neurologist affiliated with Sharp Grossmont Hospital. “I encourage them to attend the patient’s doctor’s appointments. Patients with seizures may have memory difficulty and can be overwhelmed with information they receive at doctor’s visits.”

Having caregivers at appointments, Dr. Cheng says, is helpful for doctors to gather important information and for loved ones to get the answers and directions they need.

Planning in the workplace

It’s a personal choice to share health information at work, but to me, it’s for my own good to tell close teammates and supervisors about my epilepsy.

Years ago, I discovered this was an excellent call. Out of the less than 20 seizures I’ve had in three decades, only one happened in public — and I was at work.

After experiencing a full tonic-clonic seizure one afternoon, I’ll never forget lying on the floor, coming out of the seizure and seeing our human resources director standing nearby with the defibrillator in her hands that she had so proudly acquired for our organization. Fortunately, my teammates explained to her that it was a seizure, not a heart attack, and she didn’t get to try the device out on me.

Understanding the “aura”

Some people — but not all — with seizures experience an aura, or sensation, beforehand, and it can be handy if they do. Fortunately, I get auras, which neurologists and those with epilepsy will tell you are hard to describe. For many patients, however, auras are unmistakable as a warning sign and a way to signal others that a seizure is about to happen.

Common auras include the feeling of déjà vu or, like mine, visual and auditory phenomena that I don’t experience at any other time. They may last 60 seconds or less but have given me time to prepare and signal to whoever was around that a seizure was forthcoming.

An aura allowed me the time I needed to get up from my desk and walk into my supervisor’s office all those years ago at work, where she helped me get on the floor. I’ve also done my best to explain it to others close to me so they can recognize a change in my behavior as a warning sign.

Knowing the risks and how to respond

It’s important for loved ones to understand how they can help keep someone with seizures as safe as possible.

“Things patients must do to prevent recurrent seizures include taking their medication on time and as directed; avoid sleep deprivation, which is less than seven hours a day; avoid climbing high up on things, like ladders; and avoiding being in deep water by yourself or soaking alone in the bathtub,” says Dr. Cheng.

Further precautions for patients whose seizures are not well controlled can include not driving a car or operating dangerous machinery.

When I had my first seizure, 911 was called. But seizures don’t generally require emergency medical attention, especially after a patient has been diagnosed and loved ones know what to do.

“Lower the patient to the floor, help them lie on their side, and clear the space around them so they don’t injure themselves,” says Dr. Cheng. “Also, don’t put anything in their mouth, including your fingers.”

However, if a seizure lasts more than five minutes, a second seizure happens, or the person has trouble breathing or waking up, Dr. Cheng recommends calling 911.

Being prepared

It was several years after meeting my husband that I had a breakthrough seizure at home due to a new medication. The time he had taken to understand the condition and my explanations of what my warning signs were had paid off. I felt it coming on as an aura, pointed to my head and said, “Uh-oh.”

He helped me get to the couch, and within a couple of minutes, the seizure, not even a full-blown tonic-clonic, was over. These days, it’s a topic I keep top of mind and part of the conversation to ensure we’re prepared for whatever comes our way.

Get the latest health and wellness news, trends and patient stories from Sharp Health News and subscribe to our weekly newsletter by clicking the "Sign up" link below.