Epilepsy – a lived experience story on what Epilepsy has been like

In this video, we hear from Emily and how she coped with finding out she had Epilepsy.

So I can not pinpoint the first seizure because I went two years without telling anyone about it because I didn’t realise it was unusual. But I think it gradually built up and I was… Realised I was losing time out of my day, and I’d know that I’d feel something, I’d go to the bathroom, something would happen but I don’t… I think I was unconscious for that bit… Looking back at it all together, and then I’d spit and then it’d be over. I was watching a YouTube video of… It was a YouTube that I was into at the time, and they had a little girl and she was… She crossed her eyes trying to be funny and kind of pulled a face, and people in the comments were saying, “It looks like she’s having an aura before a seizure.” And then people were explaining what that was. So I Googled that and it literally matched my symptoms perfectly, but then I felt like… I felt stupid going to my mom and telling her that, or anyone, like my step-dad or my dad, my step-mom, anyone. So I didn’t say anything and then, eventually, my step-dad saw one and then he told my mom. And I got to the doctors. I know that I don’t remember parts of it.

So, for example, once I had one at school and my friend took me to student reception to tell my mom. I knew that I had one and I had one in Tutor, the other side of the building, but I don’t remember the journey to walking to student reception, even though I was conscious. It was just gradually coming back because I don’t remember that. But I remember being there and that was when I realised that I do… It is a problem. I do think that the feeling of an aura is very similar to nerves, so I think sometimes I get confused with it. So last year, when I was taking my GCSEs, before the Maths one which was my biggest worry, I was really nervous and I confused that with an aura and I got myself into a state in the exam and started crying in the exam hall, thinking that something was going to happen. And I ended up sitting outside with the exams lady and talking about it and I stopped having… We had to send in all of the hospital records to prove that the reason I might have not done so well is because I thought I what was going to have a seizure. I don’t know if I was going to, I might have confused the feeling with nerves. But nerves, stress, they are probably the biggest fear… Just because the feeling is so similar to an aura.

I might have had one or two when I didn’t know I was going to have one. And that’s the worst because I can not prepare myself because I can not sit down or I can not tell someone, I can not hold on to someone. It affects me that there are stereotypes behind it. That’s the biggest problem, I think, for me because they assume that they are on the floor shaking and it’s caused by flashing lights. That is a stereotype. So they assume you have got to put them on the floor in the recovery position and that’s how you sort it. But for me, it’s not. It just sits me down, make sure there’s nothing in my mouth if I’m eating and kind of keep me calm afterwards because I don’t know what’s happened. I just want to carry on like normal. So in PE once we were doing trampolining, I knew something was going to happen. I’d walked out of there with my friends, but I was straight I wanted to go back afterwards because, in my opinion, nothing had happened. My seizures last between three and five minutes normally, but I have had some that have been 30 seconds or sometimes they are a bit more, so between five and eight minutes, but that’s normally the recovery period of gaining consciousness and becoming sort of normal again. There is a little bit of thought that it could be an absence seizure, but normally it’s the complex focal seizure.

My family didn’t know that I had epilepsy until I was diagnosed. My grandparents were very worried. They were asking a lot of questions because they didn’t understand it and I think that’s a generational thing as well. They just… It wasn’t normal for them to know much about it. My family, sort of at home, we… It was a bit odd because we just carried on as normal. It was just life then because we’d been having these seizures for a while and we knew they were happening. So once we got a diagnosis, sort of about six months after the initial GP visit… When we got the diagnosis, it was weird because I remember going home and saying, “I’ve got epilepsy.” But that was it, life just carried on. And if I had a seizure, I had a seizure. But they were mostly at school, they didn’t affect much home life.

Yeah, I’m on 600 milligrams of carbamazepine. I take that in the morning and evening. It helps massively, it stopped the seizures, so I’m happy with that. But to start with, they put you on… I think I started on 200 milligrams twice a day and that wasn’t enough that I was still having seizures for about six months after that. So then they bumped it right up to 800, gradually over a few months, but they bumped it up massively. And that made me dizzy a lot of the time. So then we’d reduced it down to 600 gradually and it’s been… It’s stopped the seizures since then for a long time. If I miss a dosage, which has happened quite a few times over the last 15 months, it happens if I’m doing stuff. If I’m tired and go to sleep, my skin feels very dry and it makes me feel ill because it’s so dry. And my hair feels dry, even after the one dose. And my mouth feels odd as well. And it takes about three days of getting back into the medication for that to happen again. At one point I thought I wouldn’t ever be able to drive and now, next month, I could be driving. And I can get my provisional. And I can do everything that’s normal.

I think there’s been some great opportunities come out of it. At school last year, when I did a presentation on misconceptions of epilepsy, that was a positive thing because I feel like, although it was only four other people and a teacher, they understood it a lot more. My teacher was crying, so I think I did a good job. In the future, I just want to carry on becoming more and more normal, so hopefully, at some point when I go to neurologists, they will say that I can reduce medication. Maybe down to nothing and see how that goes. That is kind of my next big goal, to get off medication and see if it was hormones that caused it, and if that maybe… If that caused epilepsy and maybe that would have stopped by then because I’d be a bit older. And then that will mean that I… If I’m off medication, that means that there’s no worry about taking it because that’s a restriction. I’ve got to take it at certain times within a few hours in the morning and the evening. Obviously, not everyone needs to know everything because it’s unrealistic because not everyone’s going to want to understand epilepsy. But if you know someone, do your research and don’t just assume it’s caused by flashing lights because that drives me mad.

My life has changed massively. You feel like you have to tell people quite early on when you meet them in case it’s a problem for them. So like getting my first job, I felt like that was the first thing I had to tell them even though they weren’t that bothered about it. They just sort of took the letter from the hospital that explained everything and that was all they needed to know. Making sure that people know that I’m me, and I’m not defined by it, is a massive thing. Mainly, it’s just hiding that stereotype and proving that I am me, I am normal. I’m sort of nearly 15 months seizure-free now. I am becoming normal after so many years of not being normal.

Learn more about Epilepsy on our video online training course at www.proepilepsy.co.uk and we also offer face to face courses nationwide and at your workplace. Call 01206 805359 or email support@protrainings.uk for more information.




1 Comment


    This is a very interesting video/report. Epilepsy does not define a person, it is part of them; just as they are made of different parts: their smile, their personality, and their height, etc. Emily’s report is an important part of the whole story about epilepsy: how it occurs, what happens during an episode, its treatment… and treatment for the patient, and how it affects them in their daily lives, their family, their friends and work colleagues. Congratulations to Emily for sharing her story and to The First Aid Show for facilitating the report.