Do u remember life before seizures....

[AussieAng]

Not throwing a pity party but I was just thinking about this today....my life has changed so drastically in the last 6 months....if someone said to me 6 months ago that in a few weeks I would have a seizure and be diagnosed with epilepsy I would have looked @ them like they had 4 heads....it's hard remembering a time when I didnt walk around in a daze and tired all the time and scared that I could have another seizure at any moment....is a life before seizures hard to remember for anyone else??

 

[Maidenminx]

Yes! I can completely relate!
It's been about 6 months since I had the tonic clonic that started my journey and all my memories from before hand are foggy and hard to reach. It's like someone has gone in and renamed and rearranged all my memories. I often feel like I have the little search dog sniffing around in my head but not locating anything for me. Weirdly though when I do remember something, I remember it in a very detailed way.

Sorry, my thoughts detailed there. I try to think back to when all this started and even though I remember specific events, I can't say when the fuzziness set in. I find it difficult to keep any thoughts straight long enough to figure it out either...

 

[Crash]

Completley agree with you both AussieAng and Maidenminx,your posts have both hit the nail on the head.Ive had epilepsy nineteen years now,as you say i feel like my memorys are there its just that i cant retreive them.Certain things will stick in a bit,like big events and the like but your normal run off the day things,NOT A CHANCE.
Then when you are unfortunate enough to be diagnosied,all your brain thinks about is bloody epilepsy even in the sub-concious,so its hard to take anything in and remember it,it certainly a right pain in the ass!!!

 

[Cherriuz]

I can remember it well, as it was only 3 weeks ago! missing it already!

 

[rich956]

:e:I can relate to that.Nothing is scarier than waking up and not knowing were your at...

 

[acpollard2010]

i agree since the age of 15 when diagnosed almost 15 yrs ago dont remember almost any of my childhood or teens and heck half the time forget wat happen last yr or month

 

[momof3boys]

I was diagnosed as an infant, at the age of 18 months old. So I dont recall anything at that age. My whole life has been about seizures. I wouldnt know anything other than that.

 

[serendipity324]

life for me changed 3 months ago today. sometimes it feels like I've been living this roller coaster "new" life forever. and then sometimes it's like it was just yesterday..yet I can't remember the days before that yesterday.

 

[qtowngirl]

This question always makes me emotional (doesn't help that I had a wicked partial about an hour ago and am very sad/bitter right now).
Luckily I have the memory of an elephant however that applies to 'things' and 'times' etc.
As for WHO I WAS before diagnosis, not a chance in hell. It's so ironic... though I hate it more than anything and it really f's my head up I still couldn't imagine living without it. Like I said in a different post, it becomes part of you whether you can cope or not.
I remember what you're feeling tho if recently diagnosed, and I am sending you all the love in the world right now. I remember where you're at Aussie, hearing epilepsy and thinking it all had to be a farce... there was NO WAY that was me!!
The hardest part really is the beginning, but we're all here for each other!

 

[serendipity324]

My whole life has been about seizures. I wouldnt know anything other than that.

thanks for your perspective. i really hadn't thought about or could imagine a lifetime of seizures. *hugs*

This question always makes me emotional (doesn't help that I had a wicked partial about an hour ago and am very sad/bitter right now).

aww, sorry q. *hugs*

 

[valeriedl]

I was diagnosed with epilepsy 9 years ago and almost everything that happened in the 10 years before that are gone. Some stuff is still up there, but not too much.

Even now things start to fade away after a few weeks or so.

I deal with it pretty good. I love to hear stories about things that happened that I don't remember, espically before I had epilepsy. I always did stupid things and I get a good laugh about them.

I was supprised though. Today I went to a embroidery business that I worked at before I had epilepsy. I was looking at the computer that I used to make designes on and I know that I could probably sit down infront of it and beable to work on it again. I really loved that job and can remember a good bit about it.

I try not to let it get me down but not remembering things can be really frustiating though.

 

[momof3boys]

thanks for your perspective. i really hadn't thought about or could imagine a lifetime of seizures. *hugs*

Thanks. But you know, Ive had those tough times where I had the BIG seizures, and then I had times where my medications took care of the seizures pretty well. For me, since last year when I went from two seizure medications down to one, I think things have been going good for me. Of course not getting enough sleep, or having alot of stress can easily bring them on for me. But as long as I take my medication and try to relax, everything turns out ok!

 

[TSD75]

I did and evey now and again have pitty parties.. i used to be a strong person nothing i couldnt conquer i supported the family,i was the person who protect them at any cost. now it seems like its my wifes job to take care of me like a nurse.I always had fun and would find anything to laugh about. now i think about every lil thing i do, will it happen again, will that throw me into a seizure. the memories i have before the seizures are what keeps me going.. knowing that the friends i had before the seizures are supportive to this day. My wife and friends that i keep around me make it easier.. and lol they remind me almost daily of all the stupid things i did to make them laugh and it does the same for me in return. just think of the little things that made ya laugh and all the BS goes away atleast for a little while.

 

[AussieAng]

Thanks to everyone for your perspective and input....best of luck to u all

 

[DaraH86]

I remember my life before seizures yes, absolutely. it was amazing, i was modeling for two major clothing companies, i owned a funeral coach that i was fixing up and was trying to "pimp out" it was my first project car. I was going to cosmo school full time, my husband was working a good job and i could have anything i wanted.
At the time the only bad thing in my life was that my mother was dying over cancer. So my husband and i decided it was time to have a baby so that my mom could at least be able to say she got to be a grandmother before she passed away. I know it sounds crazy that i would go and have a child for my MOM! but her and i were so close, and my husband was older, and we were in a good place financially to support one more life if need be.
My mother was there when my son was born....she was the second person to hold him, and he was even named after my father and my husbands father.

She died last december but got to be there for his first b-day....= (

After the baby was born and i continued to have seizures, our lives were turned upside down. my husband lost his job and wanted to stay home because he (basically) didnt trust me alone with the baby, i had to get rid of my SS Victoria funeral coach. I chose to donate it to saint vincent de paul's and watched it get hauled away on the back of a tow truck forever.....=..(.....

im still on pills and am still battling getting things under control, while trying to raise a now 2 year old and a husband that can sometimes give me a really hard time about my seizures. *sighes*

 

[girlwithadog]

I remember it very clearly. I'm trying to find my way back there to two years ago when it first started. If I would have been told I was going to start getting seizures I would have changed a lot, may not have helped but I would have tried. Pre seizures I was always laughing, always outside enjoying the sun, I was a good mom and good girlfriend. I enjoyed work, I enjoyed concerts parties and going to bars and such. Now I stay home all day sober. I laugh not because things are funny but because I know I'm supposed to laugh. I'm in a daze all day, I get uncomfortable outside and around people, I no longer work or do anything really but sit at home all day, I've even put on 40 pounds in the last year.

I can remember pre seizure very clearly, getting back there isn't as clear, I'm not sure if I will ever have the confidence and care free spirit I once had. It's hard to imagine myself ever finding that comfort level again. I know how you're feeling

 

[Janus]

My seizures started when I was in my 20's and single. But so much has changed. Now 43 and a dad to an 11 year old, divorced, home owner, misanthrope, radical-anarchist-sculptor-punkrocklover-at your service-public esthetics improver. Life is never boring now. Being all sober has helped make my life EVEN MORE thrilling. I am in love and I say it too me all this and 43 years to find her, so i would never go back.
"Perhaps my best years are gone. I would not want them back. Not with the fire in me now." ---- SAMUEL BECKETT and did i say he is an icon and genius ??? I recommend reading him,

 

[jenbayly17]

I don't remember too much before my seizures I was 12 when officially diagnosed. But I had seizures as a baby as well. They medicated me until I was 5 and then thought I had outgrown it and I was off meds until 12 when it reappeared and I have been medicated ever since then. I know we all have our moments where epilepsy seems to control our daily lives but I would always remind myself that this disease is a lot more tolerable than what I have witnessed others endure. Epilepsy is inconvenient for daily tasks but as crazy as it gets some days we are living. We decide how much we can enjoy life by trying to make the most of each day or experience we have. Enjoy the holiday with your friends or family or the neighbors around you. Be safe and enjoy the life's we are blessed to be able to have. Remember there are people who are unfortunately battling diseases that they have days numbered and especially today remember the people that fought for us to have our freedom. Happy 4th of July everyone.:dancing2:

 

[SlimBlue]

Cheers Janus, just turned 40 and that gives me hope I might still find 'the keeper'

I was diagnosed in 95 after a bout of supposed encephalitis left me in a 6 week coma. Very luckily I made it through that but was left with 3 years complete memory loss and very faded memories before that, temporary paralysis, some brain damage and the tonic clonics.

For most of that year I had to learn how to move and talk again, so it's very easy to look back and see that as the starting point for my 'new' life- but there was still a lot of the old me there, waiting to be found

When I got back to being mobile and chatty again, I managed to keep hold of a lot of my previous life- mainly through my awesome friends constantly reminding me of those 3 years, and from their stories I built some false but still real memories if you know what I mean, and these helped a fair few real memories come back eventually.

Once the seizures were controlled a bit, I did carry on with my previous life as best I could- had the same interests etc, and a lot of things stayed the same. In fact really, apart from dealing with the E and side effects, and learning to live with the fuzziness, memory gaps, and weird bits of brain damage, I'm pretty much the same as I ever was..

It's taken me a long long time to get back to being me, and there've certainly been years of dark times and screaming at the sky.

But I'm back, seizures are a bit more controlled, and the meds are just an annoyance. Guess I'm saying, if you fight for it, you don't have to lose your old self to the E.

 

[Janus]

Wow that is quite a story. It sounds like you have had great support through the years and quality healthcare to help the recovery. Your posts say 'UK' I am an ignorant soul from the North American continent; I know technically ' United Kingdom' but that there is no more kingdom does that usually mean England now?
And I found it true that time heals. It just gets better as you go when doing what you can to hasten recovery.