Epilepsy information

As my user name suggests, I'm Matt(hew) from the Steel City (would you believe)? haha.

Suffered brain haemorrhage in Oct '08. This triggered a seizure 2 weeks later. To this day, I'm still not under control, and it was only a couple of months ago that I was actually 'diagnosed' with having epilepsy.

I hate it. It's horrible. I feel it's a stigma and feel embarrassed by it. Don't think for a second that I'm ridiculing anyone else on here, or in general, I just haven't been able to actually come to terms with it all. Even 3 years on. The (lack of) help I received from the DWP didn't help matters either. They made me feel like an idiot. As though I was taking the p*ss (are we allowed to swear on here?) or I was weak. I'm still in some state of denial. In the hope I can 'wish it away' sort of thing.

My epilepsy liaison nurse suggested I join a forum like this one to help me understand things a bit more. I have lots of friends and a family, but absolutely no-one I know suffers from what I (and obviously all you guys) suffer. So I've tried to get on with things 'as normal', but the more I think I'm going right, something happens.

I've only had a dozen fits in the 3 years, but my confidence is absolutely shot. Without trying to come across as arrogant, I'm a very outgoing bloke (or lad - I'm 25), but whenever I start feeling a bit 'funny', I could almost break down completely.

Feel like I have been dealt a really **** hand in life, and no matter what sort of route I look at taking, there's a massive wall there.

Cheers,

Matt x

Hi Matt welcome to the forum, take care luv Juliexx

Hi Matt,


We've all been there and is tough at first, but it does get easier to cope with over time. Partly because you get more used to it over time and partly because the time gives you the chance to find out more about E in generally, and how it effects you in particular.

I know exactly what you mean about being dealt a dodgy hand - but two thoughts always spring to mind. Firstly at least you live i a modern, western country with a first class health service (the NHS is not perfect it is so much better than most countries around the world have).

The way I look at things is that whilst we now control over the hand that live deals us, we do have some constol over how we play that hand. You can't win without a decent hand to start with, but just because you get a rump hand doesn't mean you have to come last.


Dave xxx

HI Matt,

My wall is only just starting to come down, mine all started back in '08 too.
They couldn't find any cause whatsoever to why I now suffer with this, like I'm a freak. wishing to be someone else,
what have I done to diserve this



and it just feels like a disease at times.
Some days I feel like a freak and wish I was someone else.

I know it doesn't seem like it most of the time but it does get easier, trying different meds finding the things that work for you.

This forum was the start to bringing down my wall, its allowed those few bricks to come tumbling down.
It is a massive help to rant and rave about all feelings/thoughts/emotions that you're going through, just knowing there are people listening that actually understand(not just trying to empathise) The info people can give here is great too.

Hang in there
Keep checking the site.
Dont be affraid to let out any frustration on the forum,
There'll always be someone to offer advice.

Ax

WELCOME to the forum Matt. Public perception of Epilepsy is better today than it has been in the past, although it still has a long way to go. One problem is that even intelligent well educated people don’t like to talk about epilepsy. I have never understood this although I have witnessed many people shy away from the subject many times. This silence alone in my opinion perpetuates the stigma problem. Granted, it is frightening to see someone seize, especially a child. Because people are afraid they decide, I'm not going to or I can’t deal with Epilepsy. Some people actually still think it’s contagious.

But Matt, DON'T EVER BE EMBARRASSED or ASHAMED of it. That defiantly won't help the stigma to go away.

I have had E for 45 years and it took 25 years before I had any type of control and for the vast, if not all of that time I had one to multiple seizures a day. I wasn't able to cope with having E either, in fact I had a nervous breakdown.

With all the different drugs and combinations it could easily take more than three years to gain control. The encouraging thing is that 70% of people do gain control with the medications not to mention stimulators and surgery and what's yet to come.

Jake HUGSHUGSHUGSHUGS

Hi Matt
Sorry it's taken so long to say 'welcome' to the forum.

My e began when I was 13 and I went through all the denial, embarrassment, why me etc stages that I think everyone with e has experienced, but as previous people have said it gets easier as time goes on. There will always be people who are afraid, can't cope and yes there will always be stigma but after 40 years of e I've come to the place of 'so what, I am who I am and if you don't like it then b***** off' . Hopefully it won't take you so longer to come to that point but the best way to beat them is to live your life as if nothings wrong and when/if an episode happens then pick your self up, go into a private place, swear, kick the wall and have a good cry and then face the world as if nothings happened.

I'm a mum with a son about your age and if he could hear some of the swear words I come out with at times he'd be astounded

Take care and remember you can come on here and rant as much and as often as you need. We're here to help one another, you never know you may be replying to my rant one of these days.

Dewi

Hi Matt, I must have missed your post cos I haven't said hello and welcome yet.

Anyway, Dewi2 is right, if things are getting you down, have a good old swear and kick the door (just don't hurt your foot doing it ) when you feel like that and then come and post here and have a rant, we're all here for you.

I've had E since I was 7 years old, still not controlled and I'm 59 this year so I've just got so used to it now. I've been through my bad patches though and all the 'why me' stuff, so know where you're coning from. In time, it gets better and easier and the day may come, as it already had with me, when between seizures you forget you've got E and when you do have one, you get over it and get on with life. It'll come.

Good luck.

Hi, I am Sue from Ramsgate, I am 48 and live with my partner, I have two grown up children and 6 grandchildren. I found this site yesterday, I have possible epilepsy, still being looked at by hospital

I didn't see this thread earlier and went ahead and posted somewhere else but I thought I'd introduce myself properly.

I'm Sandra, 34 and I'm married with 3 children. I was diagnosed with right temporal lobe epilepsy last week and am still at the stage of taking it all in.

I'm hoping that by being part of this forum and hearing other people's experiences it will help me come to terms with this lifelong condition :0(

Shandy x

Hi Buffy and Shandy,
Welcome to the forum.
Sometimes we think "I can't ask that it'll sound silly" but there's nothing more peculiar than the effects of seizures so go ahead and ask as there will always be someone on here who can answer you.
We're here for you when you want to have a rant and also for when something good happens, so welcome to the crowd of unique people.

Dewi

Welcome to the forum, take care luv Juliexx

Returning to forum after not being on for ages so will reintroduce myself. My name is Alix and I was diagnosed 11 years ago (27 now) after having a TC. I had had a number of what I now know are simple partial seizures in my early teens but didn't do anything about them then when I was 16 just before my prelims for my Standard Grade exams (Scottish GCSE's) they started clustering and I went for an emergency GP appointment to chat about them then the next day I had my TC. I Think my life was effected a bit as I didn't want to go out drinking and I have never driven plus my mum was the only member of my family (till last summer when my dad witnessed one) to see me have my first TC and I have always had a strange guilt about that.

They can't really see a cause other than I had a craneostynosis when I was a baby causing a build of pressure in my head which didn't effect my brain but could have been the catalyst for certain things that happened during my young life.

Anyway just saying hi again

There's probably a few more new ppl onhere now than when you last posted. I don't know you so welcome back.

How is your epilepsy now?

Hi Alix

Welcome back to the forum

Dewi