relieved to found people similar to me

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

N

nicki

New
Messages
7
Reaction score
0
Points
0
I havent been able to talk about this to anyone, i feel awful that it happened.

i had my first seizure just before my 16th birthday in september 2012, after starting my final year in high school. My hand had been stiffening and shaking the weekend before and my parents said it was because i texted to much! showing no concern what so ever. It was to their shock i had my seizure the monday after.
i felt my hand tighten then shooting pains up my arm, i remember not being able to talk looking at one of my friends say my name as i slowing fell on to my other friend. this is all i remember until waking up at school with people telling me everything is okay. i was extremely confused with a terrible headache feeling sick. it wasnt until the teacher from the class came to me at break saying i had afull blown seizure, though it didnt make much sense to me.
its been four months after and im terrified ill have another. Ive had all the scans and stuff but everythings normal, is it possible to have a one off? i don't want to feel like this all my life.
im new so i dont know how this works or who'll reply, i just want someone who's gone through this too help me.
 
Hi nicki, I can't offer much advice i'm afraid, but there are so many wonderful people on this forum that will be great for you to talk to. Just want to say I know how frustrated you must be and frightened. Hope you ok. Ella.
 
nicki

Welcome to Coping With Epilepsy. Its not easy learning you have epilepsy, it takes time to come to terms with a lot of things most are new. Just because an EEG comes back "normal" does not mean you do not have epilepsy. I presume you mean you do not want to feel terrified all your life, you don't, you come to except you have epilepsy and there is nothing you can do about it so why worry, what happens - happens. All you can do is look after yourself to best of your ability. Everybody here has,is and will go through what you are so try and relax. There are some who have had it since childhood others are teenagers, you have mothers and adults, there are no exceptions. There are a few things you need to do, but yes it is possible to have a once off seizure.
 
Hey Nicki

Sorry to hear about your experience. Not fun!

Two thirds of people who have a seizure will never have another one, so it is more than possible to have just a one off, in fact far more people have one offs than go on to develop epilepsy.

Did your doctor give you any idea on chances of recurrence after getting all your test results? If not maybe go see your local doc and ask for a referral to a neurologist who will have better epilepsy expertise and can discuss your situation with you.

I personally had a single seizure at around your age and have not had another (yet anyway!) and it's been 18 years so it is very possible you had a one off, although only a neuro can advise you accurately on this after a detailed discussion about your history.

Even if another does happen, most people take modern meds that completely control their seizures, so the outlook for most is a normal life.

I know exactly how you feel as I went through the same anxiety that you are, worryign about another. Chances are you will be fine though so try not to worry. The longer you go without having another the less your chance of a recurrence.
 
Hi and welcome,

I am in the fact I can't give you any advise, my seizures are not what you described. I do along with all the others know how it is to feel scared, confused, angry at the fact that you life has forever changed.

There is life as being told you have E., if in fact that is what you are told.

Just wanted to let you know that you are among people who feel just like you.
 
from what i been told everyone got seziour threshold maybe you had extra stress or hormonal,i know in uk at 16you be on to gcse year and that very stressful....i known people who have one and thats it..try to relax dont get anx...my opinion is many people have had e episode just unaware of it
 
Thank you for your replies, i really do appreciate it.

Cardones, i havent really spoke to my doctor properly, when i went they were in a big rush. i find it hard to talk to people about it, i dont even talk to my family about this:/

But thankyou to everyone that replied, this has really helped talking to people who actually understand. I think this site will really help me :)
 
I know how you feel, its difficult to talk to your family and doctors especially when they wont like you get a word in. This site will give you some great advice
 
hi nicki,

I understand the feeling of the doctors not talking to you but only to your parents. I was 11 when mine started and they went "underground" for quite a few years. anyway you may want to talk to your parents about this, it is tough but they can tell you things that the doctors can't, like what happened when you where a baby(if anything abnormal).

when I was a baby there was swelling in my soft spot. found out in 2007 when the did another mri that there is a scar on my brain, could be from the seizures or the swelling that happened(no one knows).

your parents are going though the same stuff you are but they could also be kicking themselves for not taking you to the ER over the weekend when your hand was stiff ...... this is the stuff that parents go though ....... I myself am not one but my mom kicks herself for not getting me to the ER sooner when I was a baby.

enjoy life as it comes
~Sharon(aka Cher)
 
Hi Nicki,

I'm going through the same thing as you right now and if it weren't for someone witnessing what happened the last time, I probably wouldn't be talking about it either..which, in hindsight, was not the right decision. This is all new to me as well, so I can't offer much advice, but just wanted you to know you're not alone.

Take care :)
 
thanks cher1985, thats such a young age! it must have been hard for you:( what do you mean they went "underground"? i see what you mean, i guess i should have thought about them too, thankyou for the advice:)
 
hi dmnckvrs,
what do you mean the right decison?
im glad ive found other people thats going though the same thing.
Thanks, you too:)
 
Hi nicki, welcome to CWE!

Having a seizure is unpleasant and scary, but nothing to be ashamed of. I hope yours is just a one-off. If you don't ever have another seizure (and I truly hope that is the case), this is still a good moment to take a closer look at your general health and habits to see if there are any things that can be improved. Sometimes it's just a matter of getting better sleep and eating regular nutritious meals. If there's something out of balance in your life, use this moment as the inspiration to find ways to get back on track.

Best,
Nakamova
 
hey nakamova, thankyou!
yeh it is, i know i shouldnt be but i am, it was in front of my whole class. i found out the other day a lad was making fun of saying i looked 'possessed' :/
You're right, its changed the way I live:)
 
nicki said:
hi dmnckvrs,
what do you mean the right decison?
im glad ive found other people thats going though the same thing.
Thanks, you too:)
Click to expand...

It happened before the time someone witnessed it for me, and I chose not to tell anyone about it, which wasn't a good decision ;)

Its definitely comforting to find people that can relate.
 
dmnckvrs said:
It happened before the time someone witnessed it for me, and I chose not to tell anyone about it, which wasn't a good decision ;)

Its definitely comforting to find people that can relate.
Click to expand...

ahhhhh i see, my bad for reading it wrong haha:)
yeh i agree :)
 
"underground" means that I went a good bit of years without one, when I was younger the tip off for a seizure was that I would get REALLY sick. and thankfully my parents where already home schooling me and my siblings(so the teachers knew).

Now the neruo docs are saying that they are breakthrough seizures meaning that they come on without warning, can't be home alone at all:embarrassed:.

I pray that you and your parents talk it out with each other(its a VERY tough subject).
 
ohhhh i see, that must have been awful as a child :(
Thats terrible, im sure they'll find a way to help stop it:) hope you're okay :)
Thank you, but i dont think we will, im not one of those people who like to talk about my feelings, not even to people close:/
 
You must log in or register to reply here.
Back
Top Bottom