Authors :
Presenting Author: Sudha Tallavajhula, MD – University of Texas Health Sciences Center
Nishil Shah, BS – University of Texas, Austin
Nishant Revanur, Undergraduate – Texas A & M University
Srish Tallapaneni, Undergraduate – Texas A & M University
Rohan Rai, Undergraduate – Texas A & M University
Rationale:
Cannabidiol, a derivative of marijuana, is approved for the management of certain refractory epilepsy syndromes. The public perception of its usage in epilepsy may not reflect these narrow indications. Therefore, an analysis across five major social media platforms was conducted to understand patterns of information propagation. This was inspired by a case of status epilepticus in a young female with JME, after she decided to substitute her anti-seizure medication with marijuana, based on a post in social mediaMethods:
Five major social media platforms were analyzed [TikTok, Reddit, Instagram, X, and YouTube] using content searching software Apify and in-built system searching. Search terms included epilepsy, cannabidiol, CBD, Epidiolex, Dravet syndrome, Lennox-Gastaut syndrome, and tuberous sclerosis. Videos and posts between January 1, 2023, and June 2, 2025, were included in the analysis. Characteristics surveyed included intent [informational or educational versus commercial], kind of featured drug [recreational versus medical grade], whether there is mention of cannabidiol as a marijuana component, whether it mentions specific epilepsies, whether there are warnings of contaminants or adverse effects of recreational marijuana, whether it offers sources for purchase, and viewership [number of views and comments].
Results:
After originally generating 1,193 original posts, the content was filtered for relevance and duplicates. A final total of 734 videos/posts were analyzed, including 10 TikTok videos, 50 Reddit posts, 44 Instagram posts, 169 X posts, and 461 YouTube videos. Overall, 88.15% of all articles were educational and informational in nature. 8.31% were paid posts. 92.09% recommended using medical marijuana, whereas a much smaller percentage, 3.67%, mentioned recreational marijuana; 0.9% described both types. 33.79% mention that cannabidiol is a component of marijuana, whereas 66.21% did not. Definitions of "medical marijuana" were also not provided. Some of the content referred to "medical grade marijuana," but not specifically to cannabidiol produced in the pharmaceutical, FDA-approved pipeline. 21.25% mentioned that it was useful for certain kinds of epilepsy, whereas 78.75% did not. Many did not warn of contaminants or possible adverse effects of recreational marijuana [84.06%]. 23.30% also offered information regarding sources to obtain the advertised drug.
[Include table showing above data in each platform.]
Conclusions:
The availability of cannabidiol as a drug for a small group of refractory epilepsies offers an attractive therapeutic option in these difficult cases. However, given the nature of the substance, it is prone to misinformation. Specifically, the implication that recreational marijuana may be used in the treatment of epilepsy is a dangerous presence on social media, with far-reaching consequences for epilepsy patients. Our analysis of the 4 major social media platforms outlined above demonstrated a lack of specificity when it comes to the types of epilepsy that benefit from cannabidiol, a lack of cautionary advice for adverse effects, and blurred distinctions between "medical grade" marijuana versus pharmaceutical cannabidiol. Funding: None