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.

new diagnosis

Fri, 12/20/2019 - 22:47
i'm 18 and just got diagnosed with epilepsy and one of my biggest worries is that i can't tell when i'm going to have a seizure. i never know and normally can't remember anything before it that would let me know i'm about to have one. does anyone have any ways that they can recognize it in themselves? thanks


What type of epilepsy have

Submitted by Meggo on Sat, 2019-12-21 - 19:06
What type of epilepsy have you got? Because different types are quite different (obvs) ...I just have temporal lobe epilepsy so for me I get auras before anything else. Feel like I'm not really here/dejavu/sometimes like imaginary people are watching me. I cant really say what it's like for tonic clonic

Hi, Thank you for posting. It

Submitted by Anonymous on Mon, 2019-12-23 - 08:56
Hi, Thank you for posting. It’s important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: can take on many different forms and affect different people in different ways. Not all parts of a seizure may be visible or easy to separate from each other. To learn more about seizures, visit: Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid & safety. Learn more here: may want to consider keeping a journal or diary. My Seizure Diary: a great tool for identifying & tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other personal experiences, that may affect seizures and wellness, which can be shared with your healthcare team. Review our seizure alert device factsheet with your doctor, to see if a seizure alert device is an option for you: 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, or [email protected].

Hello I have all different

Submitted by Kevin L. on Wed, 2020-01-29 - 03:24
Hello I have all different types of epilepsy and I get auras. Sometimes I get a tingling sensation all over my body. Sometimes my arm or leg will start to spasm. Sometimes I just get a gut feeling. Sometimes nothing. When I do get a warning I immediately lay down and if someone is around I tell them what is happening so they don't freak out as much. I hope this helps a little. Remember that you are not alone in this. You should educate yourself and all of your family and friends about what to do if it happens around them so that you will be safe.

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