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i'm 15 years old and i am epileptic

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Posted 6/14/2006 1:06 AM (GMT 0)
             I am 15 years old and i have Epilepsy.

               It's very hard for me to do things or watch all of my friends

              & other people do things that i wish i could do.

I feel as if its taking over my life and i feel that way every day of my life.

                         

        If anyone wants to talk to me about it or have any advise ( which i would love )

                          feel free to IM me on Aim @ rock on loser xo

 

                                or just e-mail me

 

 

                            - Tiffanie -

Posted 6/14/2006 2:06 AM (GMT 0)
Hi Tiffanie,

I'm Emily. I'm 20 years old and was diagnosed with Epilepsy last November. I know pretty much EXACTLY how you feel. I haven't had Epilepsy as long as alot of other people it seems, but I do feel like I've had it forever (and I will have it for the rest of my life) and I've learned a lot about it in the past few months. I am new to this forum, and I am also a member of two groups on MySpace and also researching for similar forums on other websites. Feel free to IM/e-mail me at anytime -

***Please place your email in your profile and do not post in the forum. We ask this for your safety***

Thanks 

Post Edited By Moderator (~Jennifer~) : 6/15/2006 7:54:09 PM (GMT-6)

Posted 6/14/2006 2:08 AM (GMT 0)
PS. I am also looking for people to discuss this condition with, and always looking for people to connect with, so that goes for everyone else as well :)
Posted 6/15/2006 10:29 PM (GMT 0)

   Hi Tiffanie,

 My name is lindsey and i'm 15 ( i'll be 16 in August, YES!!) lol, anyways, i found out i had epilepsy in (around?) 1st or 2nd grade ( too long ago to remember!). I TOTALLY understand what you mean when you say that you feel like it controls your life. I have petite-mal seizures, so sometimes when i'm talking to someone or my brain starts working to hard it will just kinda "shut down", i don't pass out or convulse but just kinda go into a trance for a couple min or so. People sometimes get weirded out when i do it or after i tell them i have epilepsy. It bothers me sometimes but other times i just let it go and say their the stupid ones for judging me because of something i have no control over. Most of my friends are cool about it and help me remember my medication everyday(something i can't remember! LOL!) but others just don't even think about it. i hate it though because when most people talk about having seizures they always talk about having convulsions and muscle spazms every so often or whatever and they always say how much worse they are then just spacing out, but they don't realize that it's not like it only happens every once in a while, its every day every hour, they can't see how hard it is to have a conversation with my boyfriend or even a stranger, sometimes on bad days or when i think to much it ruins my whole day beacause i can't think straight or concentrate on anything for the rest of the day. i hope you understand what i'm going through and can somewhat relate whatever your situation. if you need to talk or just wanna say wuts up just email me a 

 

 ***Please place your email in your profile... We ask you do not post in the forum. This is for your safety*** 

P.S. I have a "somewhat" funny story if you e-mail me back

Post Edited By Moderator (~Jennifer~) : 6/15/2006 7:55:39 PM (GMT-6)

Posted 6/17/2006 5:12 PM (GMT 0)
hey im 16 and i can totally relate to you to. i was diagnosed about a year ago. my seizures are monoclynic which is like little twitches..its wierd. but as long as i take my medicine im usually good... but i cant stay up late or drink..which is hard because im a tewenager and all of my friends stay out alll nite and party. i luv my friends but sumtimes they just dont understand where im coming from and i dont want to tell them i have epilepsy cuz then ill be known as 'that girl with that disease'... but if u need sumone to talk to i can relate but do not let epilepsy control your life. it is a part of who u are.. and if u are strong u can control epilepsy..dont let it control you!

Posted 6/17/2006 11:46 PM (GMT 0)
Thats exactly what i'm going through too with my friends and how they don't understand how i cant drink or stay up late ( which i cheat on that cus i do stay up late lol ) but yea i can totally relate to you too cus thats what i'm going through.too sucks doesn't it? but i'd rather have this life then no life at all.
Posted 6/18/2006 3:16 AM (GMT 0)
yeah i kno.. i cheat t0o lol i drink AND stay up late.. :-\ its hard when u want to have fun and have a life..but not be like worrying all the time if a siezures gonna pop up!! but if u think about it at least we have medicine and were not dying like ppl with cancer or other illnesses so u r rite..im greatful i am at least alive
Posted 6/18/2006 3:43 AM (GMT 0)
 Yep it does suck  , especially when everyone in my house is drunk. and yea it just sucks lol yep but i'm right hah i love being right :-)

For your safety please do not post contact info please place it in your profile

Post Edited By Moderator (~Jennifer~) : 6/19/2006 9:03:06 PM (GMT-6)

Posted 7/5/2006 5:15 PM (GMT 0)
hiya.

my first seizures started arround 15. i'm 27 now. i know how you feel. when i look back on all i used to do, and things i'm affraid of doing now, or have trouble doing, or are simply out of the question....or when i have to face the concequences of doing em anyway....man what a friggin pain! it's unbelievably frustrating.....as i'm sure you...and pretty much everyone here knows.

if you'd like any insight on my personal experiences, ask away.

Posted 7/6/2006 6:54 AM (GMT 0)
hey everyone, i'm 23 and i've been having seizures since i was 18. they just randomly started the summer after i graduated high school, then about a year after that i had a seizure while i was driving and totalled my car. it broke my jaw in three places, and i am soo lucky to be alive. i hate telling people that i have epilepsy because i know it freaks them out...like they think 'what if she has a seizure right now??'.

if anyone wants to email me to talk or anything, please go ahead. its really comforting to know that there are other people going through the same thing.

-Carly
Posted 8/4/2006 10:37 PM (GMT 0)
To the teens:

I knew something was 'wrong with me' when I was in Jr. High, but I never told anyone about it. I was over 21 (am now 24) when I was diagnosed with epilepsy, and didn't start having grand mals until then. And, of course, I liked to go out drinking with my friends. When I started taking seizure meds, I was told not to drink, but, being me, I didn't listen. So, for one of my friend's 21st birthdays, a bunch of us went out for the evening. Short version is, I got back up to my apartment late, and fortunately with friends, and ended up having eight grand mals in a row, and stopped breathing on the paramedics in the ambulance. They started doing CPR, and ended up dislocating my colar bone from my sternum. Which is a very large OOOWWWIIIEEE!!!
Do I still hang out with friends and have fun? Heck yes! But I do it without the alcohol. Close friends know why I don't drink, and they hold me to it. For the less close friends, I'll walk around with a cup of something (usually Coca~Cola), so everyone assumes I have a drink, and I don't get bugged about it. I know it doesn't seem like it now, especially when you're fighting so hard to appear 'normal', but you really need to be careful. Mine is a good story, b/c no one got hurt but me, but I've lost a few friends to drunk driving, and when I read about alcohol and epilepsy together, I can't help but say something. My friends say I can be the life of the party, and that's without a single sip. I'm confident in who I am, and I go to have fun and relax. Interestingly enough, I've found it's more fun to watch other people when they're drunk, than to get drunk myself. Plus, I have the added bonus of not having the shakes the next day - or a hangover. ;)
Bottom line - PLEASE be careful!
Posted 8/18/2006 5:21 PM (GMT 0)
*nods*

i was 16 when i was diagnosed (i'm 27)...well not diagnosed...busted! lol i don't know how long exactly i was seizing before i got ratted out. it was at least a year to two.

i was a HEAVY drinker back then and i remained as such. i assumed the seizures were withdrawl, and i obviously wasn't about to tell a parent or guardian that i think i' having seizures because i was dissapearing for months on end and drinking constantly!

i continued to drink regardless of what the doctors said. my liver went into failure (begining stages...lucky for me the liver regenerates) by the time i was 18. i HAD to quit drinking for more than a year- and believe me- i tried to cheat...but liver failure....HURTS. when i stopped drinking, my seizures got "better". it took me till i was 19 to ease off an accept i'm not getting better and drinking is not going to help! lol neither is the passing out!

since then- i've adjusted my lifestyle arround...well me! that includes friends and outtings, times i sleep etc etc. i'm more of a bad influence on my friends than they are on me most days, but being that i was always the tough one pressure never affected me. it's a good thing at your age...you may be frustrated, but you're not going to miss anything by not depriving yourself of sleep or drinking yourself stupid. i promise you. you guys seem to have your heads on straight and that's amazing for your age regarldless of a condition or not. kudos to you all for knowing your limits and sticking to what's best for you.

and btw- a wee after school special like note...lol if "friends" are pushing or annoying you to 'cheat' then they're not worth the time....if they don't care that it'll literally hurt you, than that's not a friend.

i mean- we gotta be real...we'll all cheat now and then- have a drink we shouldn't....stay up just a bit too late now and then...but on the nwhole we all know our limits, and instead of pushing them- we should know to take better care cause we're gonna pay later! as will the friends sans seizures who are burning the candles at both ends and drinking too much- i'm proof positive it ain't pretty!!!

Posted 8/24/2006 5:02 PM (GMT 0)
I totally understand!
When i first was diagnosed( in third grade) i was stubborn and didnt let anyone get in the way of thing i wanted to do.... i wasnt supposed to climb trees.... but i jumped out of them. i wasnt supposed to be near the road.... but yet i stood in the middle of it. i never wanted to consider myself differant.

now since i am 16 and a junior in highschool. all my friends are getting there licence. i cant. i feel left out and alone. i dont want to be one of the only juniors take the bus. this is basically the first thing i am getting held back from. and it isnt from parents or doctors. it is from the law.

i totally understand.... but dont worry. we are strong and learn from things we cant do or our troubles. always look at the bright side...

-kt
Posted 8/24/2006 5:34 PM (GMT 0)
I was a senior in high school and still taking the bus. Talk about embarrassing. I never explained why to anyone. But I did meet a girl who is now one of my best friends - pretty much my twin. We've known each other for eight years now, and it's all thanks to the embarrassment of not being able to drive. :)
Posted 8/25/2006 2:48 AM (GMT 0)

Hi Tiffanie.  I can totally relate to how you feel because when I was your age, my epilepsy was very active.  I was having 5-20 seizures a day sad   in school and out of.  I was always embarassed when I had one at school. confused    I am more than willing to chat with you.  Let me know.  I don't have AOL so another MSN will have to work.  Praying for you.  By the way, I am now 37.  I have been seizure free for 16 years since I had brain surgery.  Take care.

Sheri

:-)  

Posted 8/29/2006 12:42 PM (GMT 0)
Hello to everyone here,

I was diagnosed at the age of 15. I was pretty, sassy, and loved to have fun. Once my seizures started to happen often, I didn't want to be around my friends too much because they didn't understand. It does rob you of your normal life because you aren't normal anymore. I am now 48-years old and still take medication. However, have any of you heard of the surgery that cures epilepsy? I am too old for the surgery and I have other complications. Ask your doctors about it and see if you qualify for the surgery. I just wanted to drop a line and hope it will help hopefully all of you. If not, find out what medication works best for you. Each individual is different. You would be surprised how many people around you have epilepsy. They are embarrassed just like we are. We feel like freaks, or outcasts. Just remember, even with epilepsy, you are still pretty, and sassy, and like to have fun. Hope this helps.

Heppy the Eppy
Posted 8/30/2006 1:06 AM (GMT 0)

I have had successful brain surgery yeah .  They removed my entire right temporal lobe in 1990.  At that time I was having 5-20 seizures a day on 4000mg of meds daily.  I slept my life away.  I was hand fed by my parents and carried up the stairs by my father.  I didn't have the strength to do either on my own.  On March 28, 1990, after a couple week of being in an Epilepsy Unit in London, Ontario for observation, I had surgery where I was awake.  I have been without seizures and seizure meds since.  I still get the odd aura, but nothing at all to be concerned about.  I also know of another friend who had the same operation as mine and he also is without seizures while still taking meds.  He also has CP.  It can happen and it is a HUGE success for most.

Sheri Adams

 

Posted 9/9/2006 3:35 AM (GMT 0)
I know were your coming from. I was about 12 when my seizures started. It was a scary feeling the first time i had one. I didn't know what was going on with me. I have had Epilepsy for over 40 years. Just don't give up, your will make it thu those tough times. If I can do it you can. Feel free to talk to us and keep in touch.

Ken
Posted 9/9/2006 12:02 PM (GMT 0)
To all you teens here - I agree with Rogue - be careful! alcohol & epilepsy don't mix!! You don't need to drink just to have fun. Most people don't need to know about your E, that choice is up to you & your family!! Yeah, I've been there too, the partying, drinking etc. In the long run it really doesn't help! You learn who you can tell about your E, & who doesn't really need to know. I am older than all of you ( probably all together!) & I had brain surgery last year (July 2005). I have had great results. I am a mother of 7 children & a grandmother of 3 boys. I was on medication for many years, but am now almost totally weaned off all of them!! There is hope for all of you, look into the possibility of surgery ( or get your parents to look into it!!), it worked out well for me!!
I know it isn't much fun having E, but whatever you do, please be careful!!
maggie28
Posted 9/9/2006 12:12 PM (GMT 0)
Heppy, why are you too old for surgery? I am 48 & have just had surgery last year! Everything is going really well, & I was awake too! Have you investigated the pros & cons of the surgery? maggie28
Posted 12/9/2006 10:59 AM (GMT 0)

pothead princess said...


My name is lindsey and i'm 15 ( i'll be 16 in August, YES!!) lol, anyways, i found out i had epilepsy in (around?) 1st or 2nd grade ( too long ago to remember!). I TOTALLY understand what you mean when you say that you feel like it controls your life. I have petite-mal seizures, so sometimes when i'm talking to someone or my brain starts working to hard it will just kinda "shut down", i don't pass out or convulse but just kinda go into a trance for a couple min or so. People sometimes get weirded out when i do it or after i tell them i have epilepsy. It bothers me sometimes but other times i just let it go and say their the stupid ones for judging me because of something i have no control over. Most of my friends are cool about it and help me remember my medication everyday(something i can't remember! LOL!) but others just don't even think about it. i hate it though because when most people talk about having seizures they always talk about having convulsions and muscle spazms every so often or whatever and they always say how much worse they are then just spacing out, but they don't realize that it's not like it only happens every once in a while, its every day every hour, they can't see how hard it is to have a conversation with my boyfriend or even a stranger, sometimes on bad days or when i think to much it ruins my whole day beacause i can't think straight or concentrate on anything for the rest of the day. i hope you understand what i'm going through and can somewhat relate whatever your situation. if you need to talk or just wanna say wuts up just email me a

[color=#800080>

referring to your nickname....i really dont think its good to smoke cannabis given your condition

<FONT color=#800080>P.S. I have a "somewhat" funny story if you e-mail me back

Posted 12/13/2006 7:32 PM (GMT 0)

Tiffanie,

  My name is Danielle, I am 21 and I have epilepsy too.  I know what you mean when you say it's hard to watch the people around you do all the things you wish you could do.  I don't know your entire situation, but I don't want you to let your epilepsy stand in the way of doing all the things you could otherwise do.  After all, they are just seizures, and I know that would scare a lot of people to say, but you are no less capable than anyone else and you can't let your epilepsy control or define your life.  It doesn't have to be that way, I live a normal happy life.  I am living on my own and going to school.  I support myself, and yes I have seizures occassionally, but they don't scare me because I know my friends will be there if I need them.  You should trust that the people you care about will be there to protect you if something bad happens.  It's about finding your limits.  Don't avoid doing certain things because you 'might' have a seizure.  You might not have any trouble at all, but you will never know unless you challenge yourself.  I wish the best for you and if you have any questions you can email me at [email protected],

Danielle

Posted 3/11/2007 5:26 PM (GMT 0)

Hi tiffanie im 17 i have had epilepsy since i was thirteen I understand how hard it can  be to have epilepsy luckily i have a really good support system my sister also has epilepsy but i dont talk to her much someone once said to me epilepsy does not control you  control your epilepsy i also know how it feels not to be able to go out with people or be able to drive im not sure if youre not able to drive but it drives me crazy that my 15 year old sister will drive this summer

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