Dec 3, 2021

Adolescents with Focal Epilepsy Waited Nearly a Year to be Diagnosed, Study Found Early Recognition and Treatment Can Improve Care, Prevent Injury

View More Press Releases

Press Release

EMBARGOED FOR RELEASE: Friday, Dec. 3, 2021, 9:00 AM CST

Abstract 1826231


CHICAGO – Adolescents with focal epilepsy weren’t diagnosed until nearly a year after their first seizure, significantly longer than it took for adults to be diagnosed, according to a multicenter study being presented at the American Epilepsy Society Annual Meeting. The study was the first to assess age-related delays in the diagnosis of focal epilepsy.

“For many people, a seizure is synonymous with abnormal movements, but many with epilepsy have more subtle signs that aren’t recognized as seizures by patients, parents, and even physicians,” said Monica Ferrer, M.D., lead author of the study and pediatric neurology resident at NYU Grossman School of Medicine, New York. “Fast and accurate diagnosis of these more subtle seizures is vital to prevent seizure-related injuries, especially those due to automobile or other vehicle accidents.”

Most people are familiar with motor seizures, in which patients may lose consciousness, fall to the ground or have muscle jerks or spasms. Motor seizures are common in people with generalized epilepsy, which affects both sides of the brain. Focal epilepsy affects only one part of the brain and may cause non-motor seizures that may be difficult to detect. Although nonmotor seizures are more common in focal epilepsy, many of these patients eventually develop motor seizures.

Dr. Ferrer said her clinic uses the mnemonic SSSSS to simplify features of nonmotor seizures: short, sudden, similar, strange, spells. People report experiencing déjà vu, brief sensorial events such as tingling or numbness, brief feelings of anxiety or out-of-body experiences. Whereas those who have motor seizures often lose awareness, those who have nonmotor seizures often retain the ability to hear, remember and understand the world around them during the seizure. Because they don’t lose consciousness, the experience may not be recognized as a seizure, adding to the delay in the diagnosis of focal epilepsy in adults as well as children, she said.

Diagnosis can be further delayed in children and adolescents because they may have difficulties expressing their symptoms, be embarrassed to talk about it or not realize something is wrong. If a child does report the symptoms, it may be attributed to a behavioral issue. And there may be barriers to accessing pediatric neurology care where an accurate diagnosis is more likely.

For the study, researchers analyzed data in the Human Epilepsy Project, a study that collected data from 34 sites in the United States, Canada, Europe, and Australia between 2012 and 2017. Researchers analyzed 444 patients ages 12 to 64 who had been diagnosed with focal seizures, looking at the age they first recalled having a seizure. Of the 121 patients who had their first seizure at 18 or younger, it took a median of 340 days to be diagnosed, whereas among the 323 patients who had their first seizure as adults, the median time to diagnosis was 207 days. Researchers also found:

  • Although diagnosis was delayed in adults who had only nonmotor seizures (mean of 519 days), it was significantly longer in adolescents (mean of 1,014 days).
  • Those with childhood-onset epilepsy experienced more seizures before diagnosis than adults experienced.
  • Sixty-nine percent of those with childhood-onset epilepsy eventually developed motor symptoms.
  • Those with childhood-onset epilepsy who later developed motor seizures were much more likely to experience injuries (54.9%) than those who never experienced motor seizures (4.3%).


Injuries related to seizures range from bruises, cuts or abrasions to serious injury, such as those caused by motor vehicle accidents when the person driving is not able to fully concentrate on the road.

“These motor symptoms and injuries can be prevented with recognition of nonmotor seizures leading to earlier diagnosis and treatment,” said Jacqueline French, M.D., principal investigator of the study and professor in the Department of Neurology at NYU Grossman School of Medicine. “Just as FAST (facial drooping, arm weakness, speech difficulty, time to call 911) has helped spread awareness of stroke symptoms, SSSSS could help health care providers and family members recognize when these seizures are occurring and prompt them to seek care.”


Davis Renzelmann
Public Communications Inc.

About the American Epilepsy Society

Founded in 1936, the American Epilepsy Society (AES) is a medical and scientific society whose members are dedicated to advancing research and education for preventing, treating and curing epilepsy. AES is an inclusive global forum where professionals from academia, private practice, not-for-profit, government and industry can learn, share and grow to eradicate epilepsy and its consequences.