Dec 7, 2019

Teens With Epilepsy Much More Likely Than Adults to Discuss Suicide Online

Social Media Offers Opportunity to Provide Support, Suggests Big Data Study

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Press Release

Saturday, Dec. 7, 2019
Abstract 11797

BALTIMORE – Teens with epilepsy are more than twice as likely as adults with the condition to talk about suicide online, according to a first-of-its kind study of more than 220,00 posts that is being presented at the American Epilepsy Society Annual Meeting.

The big data analysis also suggests teens are concerned with the unknown aspects of their illness even more than the possibility of depression. For example, they worry when they can’t figure out new symptoms of their illness or a change in the patterns of their seizures. In other words, teens’ fear of the unknown may perpetuate stress and potentially contribute to both the development of depression and suicidal thoughts.

While the high level of online activity in teens isn’t surprising, more than three out of four (77%) posts about suicide by teenagers with epilepsy occurred on message boards and topical sites, instead of on social media, according to the study. Teens often posted concerns about social embarrassment about the condition and feeling isolated. These findings suggest teens want anonymity while they seek information, researchers said. 

“Parents often fear overwhelming their child by providing too much information about the characteristics of epilepsy, but if teens don’t get answers they’ll go looking online, and sometimes that information is not correct or is incomplete,” said Tatiana Falcone, M.D., lead author of the study and a child and adolescent psychiatrist at the Epilepsy Center at the Cleveland Clinic. “It’s important that teens know there is always hope, that knowledge is power and that the more they know, the better they can take care of themselves and their epilepsy.”

Doctors and parents need to be sure their teens are fully informed about their illness, she said. Further, social media and other online sites could provide an excellent opportunity for suicide prevention outreach to teens.

Researchers used artificial intelligence tools to collect and analyze 222,000 publicly accessible conversations and comments about epilepsy posted online during a one-year period (Sept. 26, 2017-Sept. 25, 2018). They assessed 181,000 adult posts and 41,000 teen posts on message boards such as the Epilepsy Foundation, topical sites such as Medscape and socia media such as Facebook, Instagram and Twitter. Of those posts, 9,000 (4%) were related to epilepsy and suicide. Of all teens’ posts, 3,200 (7.8%) were related to suicide compared to 5,800 (3.2%) of adult posts.


  • 63% of posts by teens expressed fear about the unknown, vs. 12% of adults
  • 30% of posts by teens discussed social consequences of seizures vs. 21% of adults
  • In 29% of posts teenagers sought emotional support vs. 19% of adults
  • Conversely, 46% of adults expressed helplessness compared to 33% of teens.
  • Also, 42% of adult posts expressed hopelessness, vs. 4% of teens.

The incidence of suicide among people with epilepsy is 12%, which is 22% higher than the general population, other studies have shown.1-2

“The fact that teenagers are still seeking information and haven’t given up suggests we have a window of opportunity for providing them supportive and therapeutic information,” said Dr. Falcone. “Social media-based outreach programs could have a significant impact on suicide prevention among teens, who clearly are motivated to improve their well-being.”

1. Tian N, Cui W, Zack M, Kobau R, Fowler KA, Hesdorffer DC. Suicide among people with epilepsy: A population-based analysis of data from the U.S. National Violent Death Reporting System, 17 states, 2003-2011. Epilepsy Behav. 2016 Aug;61:210-217.

2. Pompili M, Girardi P, Tatarelli R. Death from suicide versus mortality from epilepsy in the epilepsies: a meta-analysis. Epilepsy Behav. 2006 Dec;9(4):641-8.



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.