Hey

[Jeff]

I've always been outgoing but my fear of having a seizure in public freaks me out!!! When I had my last big seizure I hit my head so bad that when my 8 yr old daughter found me there was so much blood she thought I'd been murdered.but even seeing something that awful,the one thing that her and her little brother remember was that I had wet myself.All that blood.....but no "mum wet her pants" lol And that's what stops me from going out with my friends.They say they understand and it's ok come out we are here for you but they haven't got a bloody clue!!!!! Having them deal with my seizures is one thing,wetting myself or worse is not something i want them to deal with!!!!They have no idea what this fear/anxiety feels like. I actually have no idea how to get past this problem.I know it could ruin friendships.........????

I'm really sorry to hear that. In a way I feel lucky as every time I've had a seizure, it's happened indoors. I've only bruised myself a few times, but it was quite minor really, I got off lightly... the worst that happened was when I fell out of my hospital bed, but nothing as bad as you've experienced.

I really admire the people who have taken so much responsibility in their lives despite being burdened with epilepsy. I mean, you're raising a daughter throughout all this, that's a load. I wish I could claim so much. Anyway, respect to you.

I guess that's the nice place about this forum, you can find people who understand you... but as for the "real world", if you don't feel you can connect with your friends any longer, do you know any place where you might be able to meet anyone who'd understand what you're going through?

Well, although my seizures are controlled, medication side-effects are a problem. My concentration frequently slips and I space out endlessly... and in these moments, maybe a family member will think that I'm ignoring them. But I always try very hard to listen to what they're saying. But in my mind, it'd sound bad if I said, "oh... the meds are making me lose concentration..." So I don't bother and let the moment pass.

 

[CrunchyFrog]

My first seizures occurred around the age of 13, at first my family thought I was just spacing out/daydreaming, whatever, as they'd be talking to me, and suddenly, for a few seconds, I'd just stand there vacantly, taking none of it in, and then I'd have to ask them to repeat themselves. I felt guilty as I think this annoyed them sometimes. Later on we discovered they were petit mal/absence seizures. Then months later I had a tonic-clonic - I remember that moment vividly, my sleeping pattern was all out of millionaire?] and early in the episode, I was told I cried out and and had a fit. Then I regained consciousness and was surrounded by paramedics. I was just confused.

Hi Jeff,

Another fellow Aussie I'm in NSW and I can totally relate. I didnt realise until I had two tonic clonics that I'd been having partial seizures for around 18 months. I had no idea what they were and thought the doctors would just think I was crazy and I didn't know how to describe what I was experiencing. I also regained consciousness with paramedics around, I went to bed and have a vague recollection of been guided down the stairs by a paramedic but, didn't fully regain consciousness until I was in hospital. Very confusing.

Welcome to CWE there are many Aussies here and many nice people to talk to