ATLANTA ― False or misleading TikTok videos about epilepsy treatments receive significantly more views than accurate, evidence-based medical content, according to research presented at the American Epilepsy Society Annual Meeting.
“This study underscores the troubling reality that people looking for help with their health often encounter information online that is not only inaccurate but potentially dangerous,” said Howard P. Goodkin, MD, Ph, president of the American Epilepsy Society. “Patients and families need advice they can trust, especially when navigating a complex condition like epilepsy.”
Social media has become a major source of health information, including for those living with epilepsy. But inaccurate medical information can spread quickly online, promoting unproven treatments over medically sound guidance and creating confusion about safe options.
“On TikTok, the videos that reach the widest audience are often the least accurate,” said Evelina Dedic, D.O., lead author of the study and child neurology resident at the Mayo Clinic College of Medicine and Health Sciences in Jacksonville, Florida. “That creates a real risk for people with epilepsy, because misleading treatment claims can delay effective care, encourage unsafe alternatives and increase mistrust of medical experts.”
Researchers analyzed 200 TikTok videos related to “epilepsy treatment” and “seizure treatment,” reviewing each for medical accuracy and the background of the content creator. Each video was evaluated on a six-point accuracy scale: true (78), mostly true (15), half true (9), mostly false (10), not accurate (67), and not accurate and potentially harmful (21).
Two independent reviewers assessed the videos, and when a claim exceeded common neurologic knowledge, they checked it against peer-reviewed sources to determine whether evidence supported it. Content creators were grouped according to their credentials: neurology physicians (16); non-neurology physicians (11); nurses (2); alternative medicine or homeopathic providers (25); chiropractors (2); functional medicine providers (3); mental health specialists (2); unspecified medical providers (9); and unspecified influencers (130). Researchers also documented the number of views and followers for each creator.
Overall, 54.9% of video views — 2,877,581 of 5,240,757 — came from 98 posts that were rated mostly false, or not accurate and potentially harmful. Notably, 91 (92.9%) of these posts were created by alternative medicine practitioners or unspecified influencers. Twenty-seven videos were created by physicians, and among them, 26 (96%) were rated as true or mostly true. Together, they received 367,470 views, significantly fewer than the inaccurate content.
The videos presented a wide range of false or unsupported claims. Some promoted unproven or misleading therapies for epilepsy, such as massage techniques or pressure-point treatments. One alternative medicine creator recommended a marijuana tincture, an unregulated product that may not control seizures and could even increase seizure risk, the researchers said. Conversely, accurate videos often shared evidence-based medical guidance, such as a neurologist explaining the side effects of an antiseizure medication and advising when to ask a doctor about changing the drug, or a neurosurgeon discussing surgery for hard-to-treat epilepsies. Medically accurate videos were more likely to get strong engagement when they featured personal stories from patients or families.
The analysis suggests that misleading claims can easily overshadow credible medical information on platforms designed to reward attention-grabbing content such as sensational, novelty or oversimplified “treatments” rather than accuracy.
“These findings are a reminder that people with epilepsy are searching for answers in online spaces every day,” said co-author Douglas R. Nordli, III, MD, an assistant professor and pediatric epileptologist at the University of Chicago. “We have to meet them there with clear, engaging information because right now, reliable guidance can be hard to find.”
The authors also encourage people with epilepsy to evaluate online content carefully by paying close attention to the creator’s credentials and whether they have legitimate medical training, being especially cautious of “cure-all” claims or quick fixes. Additionally, any advice seen on social media should be discussed with their doctor before applying it.
*** AES 2025 news releases may contain updated data that does not match what is reported in the abstract.
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