Survey finds most Americans are unaware of many signs that someone is having a seizure

Seizures don’t always look how they’re portrayed in movies, and knowing the more subtle signs like laughing or lip-smacking behavior may lead to diagnosis and effective treatment for epilepsy

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ORLANDO HEALTH

 

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A NEW NATIONAL SURVEY BY ORLANDO HEALTH FINDS A MAJORITY OF PEOPLE ARE UNAWARE OF LESSER-KNOWN SEIZURE SYMPTOMS.

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CREDIT: ORLANDO HEALTH

Orlando, Fla - If you’ve ever seen a movie or TV show in which a character has a seizure, you probably have a fairly standard mental picture of someone falling to the ground in full body convulsions while foaming at the mouth. But that doesn’t necessarily reflect reality. A new national survey by Orlando Health finds that while most Americans recognize those classic symptoms of what’s called a generalized tonic-clonic seizure, the majority fail to recognize the subtle signs, all of which can be dangerous and have a profound impact on the lives of those suffering from them.

“Anything that interrupts your brain’s circuit can cause seizures, from tumors, infections and strokes to high or low blood sugar or glucose levels to inherited genetic features. And different types of seizures can present with dozens of different symptoms,” said Dipali Nemade, MD, MPH, an epileptologist and neurologist at the Orlando Health Neuroscience Institute. “But because they often look different than those ‘cinematic seizures’ we see in movies and television, they can go undiagnosed for a long time.”

The survey, conducted by Ipsos, found less than half of Americans believe numbness or tingling (32%), blinking rapidly (35%), crying out or screaming (13%) and laughing (6%) are signs of a seizure, but Dr. Nemade says it’s important to pay attention to any odd or out-of-place behaviors and address them with your doctor.

“Even seizures with these less dramatic symptoms can make everyday activities like driving and cooking dangerous. For some people, their seizures present outwardly with very subtle signs like smacking their lips, picking at their clothes or just staring into space, and it’s important to recognize when you or someone around you is experiencing them so they can be accurately diagnosed and treated,” Dr. Nemade said. “By looking at their brainwaves (EEG), we can see if those behaviors are being caused by seizures.”

For Mike Sail, seizures start with a flushed feeling that travels from his abdomen to his throat, followed by raised arm hair causing his condition to initially be misdiagnosed as acid reflux. It wasn’t until he lost his memory of an entire week that he was finally referred to Dr. Nemade, who diagnosed his condition as epilepsy. 

“I kept saying that it can’t be acid reflux because that doesn't cause the hair on your arms to stick up,” Sail said. “For the most part, these episodes were not very disruptive. They only lasted a minute or two and usually only happened once every few weeks. Sometimes I’d have them while I was doing things like playing golf, and afterwards I would just go about my business. So, I was shocked to find out they were seizures because it wasn’t what most people think a seizure looks like.” 

Like most cases, Sail’s epilepsy is well-controlled with anti-seizure medication, lifestyle changes and adequate sleep, and he no longer fears that uneasy feeling he gets before having what he now knows were seizures. Dr. Nemade says education is needed to help others like Sail raise a red flag when they’re having unexplained symptoms on a regular basis.

“If people don’t know that these symptoms can be caused by epileptic seizures, their condition will be misdiagnosed or ignored and it will continue to affect their quality of life. That can be very isolating and frustrating, which is why many people with uncontrolled epilepsy experience anxiety and depression,” Dr. Nemade said. “Too many people never go to the doctor because they don’t feel like it is profoundly affecting their lives, or they don’t know how to explain what they’re feeling.”

For rare cases of epilepsy that are resistant to anti-seizure medication, there are some advanced treatments that Dr. Nemade and her team offer at the Orlando Health Neuroscience Institute’s epilepsy center, such as intracranial monitoring (sEEG/subdural) and mapping the brain to find the exact spot where seizures are originating and removing a small piece of tissue. If they are not able to remove the tissues safely, then neuromodulation options like responsive neurostimulation, deep brain stimulation and vagus nerve stimulation are effective palliative options. It’s effective treatments like these that are not only improving lives, but also saving them by preventing sudden unexpected death in epilepsy, or SUDEP, which claims about 3,000 lives in the U.S. each year. But Dr. Nemade says they can only help if symptoms are recognized and action is taken.

If you suspect someone is experiencing a seizure, sit them down in a safe place without any sharp or heavy objects in their surroundings and ensure they can breathe freely until symptoms subside. If a seizure lasts more than five minutes, call 911. Those who have never received an epilepsy diagnosis or another explanation for their seizure should follow up with their doctor or a neurologist.

Survey method 
Editor’s note:
This survey was conducted online within the United States by Ipsos on the KnowledgePanel® from October 5 to October 8, 2023, and surveyed 1,024 U.S. adults ages 18 and older.  This poll is based on a nationally representative probability sample and has margin of sampling error of plus or minus 3.3 percentage points at the 95% confidence level, for results based on the entire sample of adults. For complete survey methodology, including weighting variables and subgroup sample sizes, please contact: christopher.moessner@ipsos.com

Mike Sail plays a board game with his wife, Ann, while hooked to an IV treatment as part of his seizure care plan. Hair standing up on his arms and a flushed feeling that starts in his abdomen were misdiagnosed as acid reflux until he underwent testing at the Orlando Health Neuroscience Institute to determine that, for him, these were symptoms of seizures.

Dipali Nemade, MD, conducts a neurological examination on a patient at her clinical office at the Orlando Health Neuroscience Institute. The exam tests behavior, movements and mental function to assist in diagnosing seizures. A national survey by Orlando Health found that most people are unaware of many of the subtle signs of a seizure.

CREDIT

Orlando Health

About Orlando Health
Orlando Health, headquartered in Orlando, Florida, is a not-for-profit healthcare organization with $9.2 billion of assets under management that serves the southeastern United States and Puerto Rico. 

Founded more than 100 years ago, the healthcare system is recognized around the world for Central Florida’s only pediatric and adult Level I Trauma program as well as the only state-accredited Level II Adult Trauma Center in Pinellas County. It is the home of the nation’s largest neonatal intensive care unit under one roof, the only system in the southeast to offer open fetal surgery to repair the most severe forms of spina bifida, the site of an Olympic athlete training facility and operator of one of the largest and highest performing clinically integrated networks in the region. Orlando Health has pioneered life-changing medical research and its Graduate Medical Education program hosts more than 350 residents and fellows. 

The 3,888-bed system includes 29 hospitals and emergency departments – 24 of which are currently operational with five coming soon. The system also includes nine specialty institutes, more than 100 adult and pediatric primary care practices, skilled nursing facilities, an in-patient behavioral health facility under the management of Acadia Healthcare, and more than 60 outpatient facilities that include imaging and laboratory services, wound care centers, home healthcare services in partnership with LHC Group, and urgent care centers in partnership with FastMed Urgent Care. More than 4,750 physicians, representing more than 100 medical specialties and subspecialties have privileges across the Orlando Health system, which employs more than 27,000 team members and more than 1,200 physicians. 

In FY22, Orlando Health served nearly 142,000 inpatients and 3.9 million outpatients. The healthcare system provided more than $782 million in total value to the communities it serves in the form of charity care, community benefit programs and services, community building activities and more in FY 21, the most recent period for which this information is available. Additional information can be found at http://www.orlandohealth.com, or follow us on LinkedIn, Facebook, Instagram and Twitter @orlandohealth.

 

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METHOD OF RESEARCH

Survey

SUBJECT OF RESEARCH

People