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.

my story

Wed, 06/05/2019 - 21:40
When I was 2 I had a febrile seizure I stopped breathing and turned blue my mom gave me mouth to mouth and by the time the EMTS arrived I stopped seizing. As i grew from baby to toddler my parents began to see that i was delayed. So i started early intervention at 3 years old I had occupational therapy and PT . In pre k I would get angry and punch any thing that was in front of me after my parents had been observing me in a pre k class and talking to the pre k teachers it was suggested that my parents should take me to a therapist to rule out any behavior issues. he took one look at me and said that I was having seizures he then referred me to a neurologist. At the at the age of 5, I was diagnosed with childhood absence epilepsy but I have been seizure free since the age of thirteen. And so was taken of meds which caused massive weight gain a hand tremor and memory loss. The point is meds are good up until a point and then it becomes a pill, no pun intended. My triggers are flashing lights, the transition from the out doors to inside a classroom getting too hot and recently sleep deprivation. When i have an absent my pupils will go from normal to pin point that is the only physical sign the eye can lasts My seizures last one second and happened every minute to every minute and a half. So there are 60 seconds in a minute and 24 hours in a day then I was having seizures every 1440 minutes or 86400 seconds so in total I would have 86400 seizures per day with meds. my parents were told to treat me as a normal child and to see how fare I would develop and look at me now I have graduated high school with honors . I am in collage as you can infer I was not expected to do much of what I just mentioned The effects of my seizures is that I have Aspie like tendencies due to my epilepsy which I know is difficult to understand to put it in simple terms as a result of my seizures my brain compensated and rewired itself i also have severe deficits in Processing Speed, Perceptual Reasoning, and Working Memory, Upper Limb Coordination, Breath Support for speech language, Manual Dexterity, Fine Motor Skills, Hand Strength, Visual Perceptual Skills, and understanding meaning. When was 19 my father died, and it seems I have had a relapse if that is possible. I still have my absence seizure but it is not enough to put me on meds . When I was thirteen I had EEG and my seizures showed up as misfired neurons and the Dr. called them "flurries" so here is what my flurries are typically like I will become very spacey i can not interact with my surroundings I also felt locked in to place. I am completely aware my vision becomes like a tunnel and thing start to move or vibrate on there own for me an absent seizure lasts one-second with is rare but these flurries can last 5-10 minutes.


Hi titanic, Thanks so much

Submitted by Anonymous on Thu, 2019-06-06 - 10:11
Hi titanic, Thanks so much for sharing your story, it sounds like you’ve been through a lot. It’s important that you follow-up with your healthcare team to discuss any changes in side seizure types, behaviors, symptoms, or side effects. You  may want to consider with your doctor having a device that can help track seizures, by visiting, ,  and by keeping a seizure diary, These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication& other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your healthcare team.’s important to recognize that epilepsy is more than just seizures, your emotional health,  and overall well-being is just as important,    Learn more about challenges with epilepsy,   and managing your epilepsy, Sometimes it's helpful to connect with other people who live with epilepsy,  to ask-questions, share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at, , to find support groups, events, and programs in your community. Additionally, our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, , can assist in connecting you to resources, provide referrals and additional support.

Sign Up for Emails

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