Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Once was enough..

Topic: 

Hi! 

so... i'm new here. i'm Lyndel, and i had my first seizure 15 days ago. i went to have an EEG last week and it turns out i have Frontal Lobe Epilepsy though i'm sure that was my first. it was so depressing for me, having heard i have epilepsy when i thought i was just a normal 17 year old boy living my normal life, studying to be an architect, and... you know... just living. well, before that happened i had this feeling (an aura i guess...) it started a few months ago, a really weird feeling that i would find myself awake at night, sometimes palpitating, and unable to breath. this feeling just creeps the hell out of me and is very, very, very irritating and it keeps going until now. when sometimes i would think about this feeling, it just starts coming back to me. it's like an out of the body experience feeling that everytime i felt it, i was willing to be dead. their are so many questions in my head like... why me? is anyone out their that is experiencing the same situation as me? does epilepsy go away forever? would i be normal again?... so many questions i want to be answered. 

so now, i'm under medication of ivetra 500mg and i can't feel any change at all. *sigh i just wish this is just a bad dream... but it just hurts so much... just hurts so much. 

so... that's just me telling my story.

 

:) Hope we all get better.

 

Comments

Hi having heard i have

Hi having heard i have epilepsy when i thought i was just a normal 17 year old boy living my normal life  studying to be an architect you know... just living. well, before that happened  why me?  is anyone out their that is experiencing the same situation as me?  does epilepsy go away forever? would i be normal again? Like I posted up there  ^^^^ What is normal. I did everything my friends did I grew just like they did we played together went to dances and did alot of things together. Some had hearing aids. Another wore glassed. One was in a wheel chair. Are any of those normal??? What about the friend that had fewer fingers on one hand? Was he not normal since he did everything with us? I do hope this helps and you get your seizures controlled and get seizure free Joe

Hi having heard i have

Hi having heard i have epilepsy when i thought i was just a normal 17 year old boy living my normal life  studying to be an architect you know... just living. well, before that happened  why me?  is anyone out their that is experiencing the same situation as me?  does epilepsy go away forever? would i be normal again? Like I posted up there  ^^^^ What is normal. I did everything my friends did I grew just like they did we played together went to dances and did alot of things together. Some had hearing aids. Another wore glassed. One was in a wheel chair. Are any of those normal??? What about the friend that had fewer fingers on one hand? Was he not normal since he did everything with us? I do hope this helps and you get your seizures controlled and get seizure free Joe

My answers to your post didn

My answers to your post didn't show up so I will try it again You heard you have epilepsy  you thought you were a normal 17 years old boy living a normal life.  Studying to be an architect.  just living before that happened  Why Me  is anyone out there experiancing the same situation me?   does epilepsy go away?   Would I be normal again?  I do hope this helps and you get your seizures controlled and get seizure free Joe

Here we go againHi I see yo

Here we go againHi I see yo uhave questions and you think that you having epilepsy is a killer. You are a 17 year old boy studying to ba an architech. That is great and you should look at becomming one since it is a good occupation. I wasn'y let into shop so I decided to draw it since they wouldn't let me make it. In my junior year I was taking a college course in Mechanical Drafting Engineering. I could take a motor apart and put it together on paper. The part of your post that has me wondering is "just living well before that happened. That being diagnosed with epilepsy I guess... I have lived a long time and I have epilepsy. It has not killed me. It does cause a few problems from time to time but they are nothing I can't overcome. Those funny feelings and wierd feelings could have been seizures. I say that because I had some wierd feelings in my hand. I was also being written up for day dreaming in class. Those wierd feelings in my hand were focal seizures and those day dreams were absence seizures. So I do know I had had seizures before having the grand mal. Your questions Why me?  Why not you? Would you rather have a heart ailment? Or Diabeties? What about Cancer??? Or going blind or having a hearing problem/  All of those people question their issues. They also learn to live and deal with their problem. This site can help you learn about your epilepsy. If you have questions by all means come in and ask them. There will be people whoo have done research answering them. There will also be people like me that answer your questions because we have been living and dealing with epilepsy for years. With me it has been 50+ years. As for experiancing the things you are experiancing.... I think that number is in the millions so yes. I am one of those. I had questions and wanted answers. Back then there were no forums and research was done in librarys. Most of the doctors answered my mothers questions. They looked and talked to her. I did the research to find out what epilepsy was. I research the types of epilepsy. I found out the kinds of seizures I could have. I also started questioning the doctors. I did that becasue I wanted answers just like you do. At the old age of 20 my questions to my neurologist let him know I wanted my seizures stopped and I wanted to know if my medications and odsages increased. decreased or changed. That was back in the early 1970's.I have been with the same group of neurologists since then and if one retires or moves the next one hears questions. My currant neurologist got into the group back in the late 1980's and he asnwered questions I asked in 1990. What ever you do keep your relationship with your doctors good. If you do and you have questions those questions can be done over the phone and I do know calls aren't charged for. There are times they will answer your question and they set up a time for a visit but if they do that they may be checking on how the answer is doing. Does epilepsy go away... Wellllllllllllll that is a yes or no question.YES people can and have grown out of epilepsy. My cousin did. Others have stopped haveing seizures for years some still take medications others even get taken off medications. Seizure free is what we want. Some do get there. Others may not. I might be one of those that do not gt there. But that doesn't mean I won't be asking Doc is the new medication we added doesn't need to be increased. The seizures I have now anr nothing compared to the ones I had when I was your age. I can have one in a crowd and no one would know I had one. I have been on a call talking to someone and had one while on that call and the person I was talking to never knew I had a seizure. Today my seizures are seconds long and the time to get back to normal is also in seconds. will I be normal again?  I hope this helps and you get your seizures under control and you also get seizure free Joe

Hi having heard i have

Hi having heard i have epilepsy when i thought i was just a normal 17 year old boy living my normal life  studying to be an architect you know... just living. well, before that happened  why me?  is anyone out their that is experiencing the same situation as me?  does epilepsy go away forever? would i be normal again? Like I posted up there  ^^^^ What is normal. I did everything my friends did I grew just like they did we played together went to dances and did alot of things together. Some had hearing aids. Another wore glassed. One was in a wheel chair. Are any of those normal??? What about the friend that had fewer fingers on one hand? Was he not normal since he did everything with us? I do hope this helps and you get your seizures controlled and get seizure free Joe

My answers to your post didn

My answers to your post didn't show up so I will try it again You heard you have epilepsy  you thought you were a normal 17 years old boy living a normal life.  Studying to be an architect.  just living before that happened  Why Me  is anyone out there experiancing the same situation me?   does epilepsy go away?   Would I be normal again?  I do hope this helps and you get your seizures controlled and get seizure free Joe

I'm 20 and in college. I've

I'm 20 and in college. I've have had epilepsy since I was 9 months old. -Why you?      Its in your family, you had brain damage OR, like me, you're just unlucky. -Does epilepsy go away forever?  If you get effective treatments like brain surgery, VNS, or sometimes it will just stop. -Normal Again?   Depends on your definition of "normal". The word"normal" shouldn't even exist. I wouldn't worry about all of this. 

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P