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Hopes to be seizure free

Tue, 09/19/2017 - 21:56
Hi all, my names gabi I live in Boca Raton Florida and attend FAU. I'm 23 and have been living with epilepsy since I was eight. I was originally diagnosed with complex partial seizures. I had my first seizure at the Miami zoo I wouldn't get out of the way of cars and just stared blankety into space not being able to speak and not listening to my moms voice. I snapPed out of it and we went on with the day. Afterwards I kept having these staring spells so I went to the hospital and was diagnosed. When I was young I took depakote and my seizures were under control, I was a flyer on the cheerleading team I lived a fairly normal life. Once I was around 16 I had my first grand mal seizure in my sleep in front of my terrified best friend. After that I went on basically every medicine they have on the market and I continue to have multiple staring seizures a day. These seizures feel like the world I zooming out and I become panicked because I don't want people to notice. I shake and twitch but I don't fall down. These seizures only last 5-8 seconds but they feel much longer. I have been ashamed of this disorder my whole life, I never tell anyone about my epilepsy. Even if I have a seizure I lie and say I just had a panic attack. It's hard to explain to someone what's wrong because afterwards I'm embarrassed and don't want to explain myself to a person who doesn't understand and might judge me. I have bottled in all my feelings my whole life never sharing the horror stories of having seizures in front of my class for a presentation, seizures during sex, during dates, work, roller coasters you name it Iv had a seizure there. This is probably so long because I never talk about my epilepsy. I'm now realizing as an adult woman that holding back these feelings have caused me a lot of pain and I want to talk to others and hear their stories as well. i no longer want this disorder to hold me back I want to be an active member in volunteering and talking to people about my story. i hope to maybe inspire young kids with epilepsy and adults too that they shouldn't be ashamed. I'm trying to find an i person support group to talk to other people with epilepsy. Does anyone know of something in south Florida?

Comments

Forgot to mention I'm getting

Submitted by gabiborselli on Tue, 2017-09-19 - 21:57
Forgot to mention I'm getting the VNS surgery October 4th  if anyone has gotten the surgery I would love to hear how it is. 

Hi Gabi, glad to know you. My

Submitted by ZZY on Tue, 2017-09-26 - 12:59
Hi Gabi, glad to know you. My name is Ziyu. I'm from China, and living in NY now. My beloved niece, who is only 7 yr old was diagnosed with epilepsy last October, and the doctor said it was LGS, one of the most severe kinds of E. It sounds that your seizures are similar, and people could hardly find she has E only if they spend a long time with her and observe her carefully.May I know if your diagnose is LSG too? She is so young that she even doesn't know what's happening. But I can feel that her mental health has been injured. I just hope she could live independently when she grow up. On this base, I hope she could be a confident and strong girl, just like you. You're totally right, there is nothing to be shamed of. You are unique and shining, you deserve a great and happy life. So please keep on. Everything will be fine. Her parents, namely my sister and her husband, are also thinking about VNS. But the doctor said she has to take more medicines to prove medicines don't work, (it will be a long time, even maybe a year) or they don't suggest a surgery. ( But her situation is inconstant, sometimes good and sometimes bad. Also, those medicines do great harm to her mood and mental health, so we couldn't tell if we should keep on with those medicines) According to our research and the doctor, VNS works, but it is also reversible. Would you mind share more information when you done the VNS? I sincerely hope everything will be fine with you, and I believe it will. Good luck, god bless you.

Hi gabby me name is Allison I

Submitted by Allisonrunnergirl on Wed, 2017-09-27 - 12:20
Hi gabby me name is Allison I am a young girl with epilepsy I hope you get better

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