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.

Share Your Story

Wed, 09/19/2018 - 01:07
Hey, I am 17 and I am a teen with epilepsy living in New Jersey and I'm creating a video about the awareness of teens with epilepsy (daily life, extra curriculars, schooling) for a Girl Scout project that will be put into the junior health curriculum at my high school. It involves sharing your own experiences with epilepsy and how it has/ has not impacted you. The curriculum will involve a video documenting teens with epilepsy (kinda like a sit down interview) and it will also include first aid, so how to help someone having a seizure in public. So if you are a teen with epilepsy who would be interested and comfortable in sharing your story you can contact me. Thanks!


When I was a baby i had a

Submitted by titanic on Thu, 2018-10-18 - 15:47
When I was a baby 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 I have absence seizures. I was diagnosed at the age of 5 but 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, specifically the transition from the out doors to inside a classroom getting too hot and recently sleep deprivation. my seizures would  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 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 and so i have all of the symptoms of Aspergers but lack any sort of understanding math as a result i have no understanding  of money  and never really learned my basic math facts.(i am just learning them now in college which for most Aspergers people they are gifted with math abilities ) i also have orthotic issues due to my seizures i also have a  processing disorder. i have low gross motor control and other motor issues as well.  After my father died, 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 . i have been getting driving lesson and have 10-20 seizures in the drivers seat.  i take omega 3  cod liver oil  liquid form  as i can not swallow pills this helps decrease the too -small -to -medicate -seizures i have very small seizures that show up on the EEG 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 an absent seizure lasts 1 second but these flurries can last 5-10 minutes. 

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