Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

ADHD Medication & Epilepsy

Fri, 05/22/2020 - 01:45
Please update this article to reflect the two updated studies that have large samples in both Sweden and the United States showing that ADHD medication is safe and effective for treating people that have co-morbid epilepsy. As it stands now, the article suggests that only a small amount of people participated in the studies based on the literature review even though it does talk about a low risk for increased seizures. The studies summarized in the WebMD article are based on much larger sample sizes. Additionally, even Dr. Andres Kanner has even advocated for the treatment of ADHD for people who have co-morbid epilepsy, calling it a seriously neglected problem. I also call upon the Epilepsy Foundation to call upon the FDA to change their advice on the labels for stimulants, train psychiatrists and neurologists on this topic based on this information, and for the Epilepsy Foundation to call upon Congress to amend the Right to Try law to not be limited to those who are terminally ill, but also those who are disabled with chronic medical conditions such as epilepsy, so that we may be able to try ADHD medications and live happy, healthy, and independent lives.


Hi,Thank you for bringing

Submitted by Anonymous on Fri, 2020-05-22 - 10:16
Hi,Thank you for bringing this to our attention and for sharing your feedback. If you’d like to learn more or get involved with our advocacy efforts, you may want to considering joining our Speak Up Speak Out network, to help us continue to raise awareness with public officials about the public policy issues important to the epilepsy community.

Another bit of information -

Submitted by Anonymous on Sat, 2020-05-23 - 07:58
Another bit of information - all our content on mood/behavior and learning is being updated. Our messages always include the importance of treating ADD/ADHD in people who also have epilepsy.We can not control FDA labeling as they have specific reasons for what they include and they are addressing the population at large and not people who also have epilepsy. I will make sure our writers address this carefully... it's an important topic!

It’s true that you cannot

Submitted by Patriotrehab on Sat, 2020-05-30 - 21:12
It’s true that you cannot control FDA labeling, but advocacy for change or more complete information on the labeling can sometimes bring about change, especially because the FDA’s labeling as it stands now was also based on very small sample sizes or case studies and they have not updated it even since these larger peer reviewed studies and specialists have written articles advocating for the advice to be changed. Sometimes it takes a large advocacy group like the Epilepsy Foundation to raise their voice before the FDA will make their labeling more clear so that doctors aren’t so afraid to give patients a right to try. The FDA even did this recently with the hydroxychlroquine for the treatment of COVID-19. There are very few doctors who will let patients try ADHD medication if they have epilepsy because of the FDA label.  

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