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Brain Fuzzy
Epilepsy With a Sense of Humor
New comer 
22nd-Dec-2010 07:50 pm
Hi everyone,

I'm curious how you all dealt with the diagnosis. I'm 26, and was just diagnosed earlier today.
Comments 
23rd-Dec-2010 01:39 am (UTC)
I was 8 when diagnosed. Compared to haveing asthma my entire life it did not seem like a big deal.
23rd-Dec-2010 01:56 am (UTC)
its kinda a harsh blow to be delt but you do get used to having epilepsy as annoying and inconvienent as it can be.just remind yourself that you are still a normal person who happens to have an illness outside of anything you did.it can be hard sometimes but life with E isnt always bad.

i pray for you that you find peace
23rd-Dec-2010 03:35 am (UTC)
took time .. i was in junior high when i was diagnosed
Its good to have ppl to talk to!
23rd-Dec-2010 08:27 am (UTC)
"Oh sweet gods and all that is holy, thank you. I may kiss you. And now will you give me some drugs to make it stop, please?"

Not your average - but my "first symptoms to diagnosis" route was a long and unpleasant one. By the time they diagnosed me I was just so pleased to get a name for it and to know that it wasn't a brain tumour or an aneurysm or anything like that, that I couldn't help being relieved in some way. And of course once they diagnosed me they were prepared to give me anti-seizure drugs, and once they did it got better. I'd been ill for a long time at that point, my diagnosis was a turning point.

I was diagnosed when I was your age, I'm nearly 30 now. Life goes on, I promise. *hug*

Edited at 2010-12-23 08:27 am (UTC)
23rd-Dec-2010 10:38 pm (UTC)
I was almost 20 when I was diagnosed, though in hindsight they think that the migraines I had as a teen were actually after effects of a fit; so I *could* have had epilepsy all my life.

I guess it all depends on what you mean by 'dealt with'. Do you mean generally, like making changes such as not having a bath while you're on your own until your meds are stable? Or decided which med(s) to go on etc.? Or do you mean psychologically? How other people around you handled the news and what support they gave? Maybe all of those, or maybe none? Anyway, I'll ramble on until I know more lol.

Basically it was a bigger deal for everyone else than it was for me! My family went into a mad panic, which is understandable, families worry; but it's really not the end of the world IMO. It's something you get used to, which can take time, but you will learn to cope with it. I hate taking meds every day, but without them, I'm really ill and that doesn't do me or anyone else around me any good.

It depends on your outlook, but the way I see it, there's nothing I can do to change the fact that my brain isn't functioning as it should. It's not the end of the world, you just have to make adjustments, and you get used to it. There's no doubt that it has an impact on your life, but I firmly believe that you can't let your condition rule your life. It's part of daily life, where there are good days and bad days, but you can't let it be what defines you! Don't let it overshadow anything else! I'd recommend you ask as many questions of your consultant/nurse/GP etc., as you can. YOU need to be able to understand your condition - don't be afraid to ask something! Epilepsy is a condition that varies from person to person, and I've found that telling other people what *my* experiences are, and what my history is, is a good way to cope. It educates other people. Epilepsy has no way near the stigma it once used to, and you'll find that most people will know someone, or *of* someone with the condition.

Um... I'll shut up now! *blushes* I hope that makes some sense! :s
27th-Dec-2010 09:08 am (UTC)
I think my experience matches up with yours. I was in the middle of high school when I found out, but it made a lot of things from my past add up, like a lifetime of migraines. And just like you, I found that other people were more concerned than I was. I guess people hear the word 'Epilepsy' and it sounds serious, and they all remember Caitlin from Degrassi collapsing because there was a candle in the room (I remembered her, anyway...)

I wasn't really too concerned at all. Worse than the diagnosis was reading about the potential side effects of Tegretol, but I got over that when I experienced none of them right away. I figured there are much worse things than being epileptic, and if I'd lived with it for years without knowing, why shouldn't life be better being able to at least try to manage it?
24th-Dec-2010 03:06 am (UTC)
I was 21, and was pretty angry in retrospect to be told over the phone by a doctor with no appointment for ages and no idea what do do next. I working in admin in the engineers section of the same public hospital at the time. My boss was cool. He had a cup of tea with me and a chat. Normalised it. Mentioned 21 was a common age. The dude worked on hospital plant, he was an engineer, not a doctor. Just had more common sense.

Then I did the information gathering thing that you are doing. I went to the local support group. They had social activities and stuff they encouraged me to come along to, but I didn't want to. The worker said she understood. People often don't want to be "identified" as an epileptic.

And yes, "coming out" is an issue, because it is something that can be hidden more or less successfully, a lot of the time. Until it can't be. I was very invested for a long time in looking like there was nothing wrong, except for dutifully informing HR, teachers. etc.

These days, because its part of a degenerative condition in my case, everyone knows I'm epileptic. Actually its much easier.

What I dearly wish for you this Christmas is a self-acceptance and a lack of shame. Epileptics have a very high incidence of depression. Personally I think a lot of it is dealing with the epilepsy rather than a chemical likelihood. Having an intermittent disability means getting used to disappointment over and over, and taking a long time to find out exactly what the real boundaries of what you can and cannot do are, because it changes.

But... it can change for the better. It can become completely managable. It can be worked around. Julius Ceasar did alright, for instance, and he didn't even have modern medicine. I took a lot of comfort in the huge lists of famous people with epilepsy. It clearly dosen't mean you can't achieve amazing things with your life.
27th-Aug-2011 11:36 pm (UTC)
I was in 7th grade when I was told I had Epilepsy. Honestly I didn't care, I was really boy crazy back then. This was when Britney Spears and N'Sync came out and the movie Titanic was popular. GAG! Ugh where did my youth go. I was busy lusting after Leo's heart. Reality sunk in when I was in highschool and I was told I couldn't drive, but I learned to deal and make awesome friends that cared about my well being instead of my wheels or lack there of.

Epilepsy is frustrating at times but don't let it get the best of yah, I think it builds character. Its the people that are perfectly normal that freak me out now.
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