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.

Calling 911

Tue, 03/03/2020 - 23:16
I've had epilepsy about ten years now and I was wondering about how you guys feel about having people call 911 when they see you having a seizure. None of my friends or family have epilepsy, so they don't really understand how it feels when I'm put on a stretcher and towed to the hospital where there is basically nothing they can do. Does anybody else ever feel frustrated by this? Especially when I'm the one that has to pay for the ambulance ride?


When I was a teen our family

Submitted by birdman on Wed, 2020-03-04 - 09:54
When I was a teen our family had no insurance.  I don't remember the stretchers, but I always felt so guilty when waking up in the ER.  My first thoughts were the expense of another event.  Sounds like it's time for you to do some educating about alternative responses.  The Epilepsy Foundation had great resources for this.  We know there is little to do but to wait out the seizure.  Friends and family want to feel good like they are helping you.  Maybe you can encourage others to just pat you on the shoulder instead of call 911.

Hi, Thanks for posting and we

Submitted by Anonymous on Wed, 2020-03-04 - 10:00
Hi, Thanks for posting and we understand your frustrations. The first line of response when a person has a seizure is to provide general care and comfort and keep the person safe. For most seizures,basic seizure first aid is all that is needed. The steps are simple - Stay.Safe. Side., Review how to administer seizure first aid with your family and friends here: As Michael mentioned in his comment, It may also be helpful for you to talk to your family and friends about when it is necessary to call for emergency help. For most seizures end on their own within a few minutes and calling and ambulance is not necessary. However, if a person has a life-threatening seizure or problems a seizure,then getting emergency help or calling an ambulance is necessary. a seizure action plan with your healthcare team. Seizure action/response plans are very helpful tools used to help those who are closest to you understand how to respond appropriately if you were to have a seizure and what constitutes as a seizure emergency for you. To learn more about seizure action or response plans, please visit: may want to consider having a medical ID, or bracelet,in case you were to have a seizure and were unable able to communicate that you have epilepsy. There are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet, with your doctor to see if an alert device is an option for you:  .It’s important to remember that you are not alone, and we are here to help support you. We understand that living with epilepsy is more than seizures,it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health.  . One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support options here: .Additionally, you may always to contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, [email protected].

Honestly, if they are NOT my

Submitted by Misjoey101 on Mon, 2020-06-22 - 22:20
Honestly, if they are NOT my family, I usually tell them to call 911. My family has been handling this for 20+ years and knows how to handle things and keep me safe. New roommates, friends, teachers, etc., I tell them all the difference between one of my complex partials and one of my petits.(or as I call them "small seizures" and "large seizures") I don't want to go through proper seizure protocol with everyone so, I just tell them to call 911 if they see something "large". 

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.