And initially I really didn’t want to go and see a neurologist, I was I really, really didn’t want to because I knew that it would completely change my life. And it would sort of take away a lot of the freedoms that I’d had but, I started thinking about it more and discussed it more with my parents and with my family and I sort of realised that I can’t just wish it would go away ‘cos it’s not going, that’s not what’s going to happen so, eventually I did go and see a neurologist, and I got diagnosed the end of October last year.

Do you remember what it was like going to the neurologist appointment?

I remember being just in such a state and, I remember on the journey there because the hospital where my neurologist is, is about ¾ hour from my house, so it’s quite a journey. I remember my mum trying to talk about it with me, and I really didn’t want to, so I remember doing everything I could to sort of change the conversation and put the radio on because I knew if she even said anything I’d just, I’d just cry. And that won’t get me anywhere, and I remember really vividly sat in, being sat in a waiting room just trying not to shake I was so nervous, and being angry with myself that there was a little bit of me which thought well maybe it’s not, because I knew, I just knew because after, after the time in August where it happened for three days, I just spent ages looking it up on the internet, and looking through all my dad’s text books and it just, it could’ve been me having written down my experiences, it was so typical. And so I was angry and frustrated that I thought, just for a split second, Maybe it’s not. Because I felt I wouldn’t be prepared, and I remember I went into the room and I was really touched by how nice and sensitive and sort of gentle the neurologist was in talking about it, and I remember being so nervous and shaky that he had to repeat the neurological exam because [laughs], when he tried to get me to push with my hands definitely to make sure that there was no deficit on either side, I was shaking too much for him to even tell. And then he just asked me to explain the, exactly how long it had been happening and exactly what happened in each seizure, and he just said it was basically just a text book case and he sort of explained to me I would probably have to go on medication and that there are a choice of drugs but he recommended lamotrigine and explained to me what the side effects would be and how I would have to start taking it very gradually. And then said he asked if it was alright, if he got my mum into the room, and explained those things to her. I said it would be, and she did and he did bring her in.

You said you were 14 when you had your first seizure. What happened in all those years of trying to get a diagnosis? Can you describe why it took so long?

Well, there was as I said I had to get to three seizures before they would even investigate it because people do have seizures due to different things like trauma or shock or something like that, just people without epilepsy. So apparently that didn’t take long cause I can’t really remember, it was, a lot of people, a lot of talking to begin with, consultations, what’s happening and people trying to figure out what route to take I suppose, because as it’s not physical they can’t, or there’s not a specific problem like maybe diabetes it is in your blood so its, they know where to go from there, but with something mentally they don’t know. Because there was also phantom epilepsy as well, where people like, where people don’t have it but they think that they do so there’s a lot of investigation at first. Then a lot of brain, then there was brain scans, like MRIs and stuff like that, as I said they didn’t show up anything because it was my scar is not on the surface of my brain so they couldn’t see anything, so as they couldn’t see anything from there and there wasn’t anything specific in my life either like usually it’s something that happened at birth. Now my mother was ill during my pregnancy but there was nothing specifically at birth that would have caused it like umbilical cord round my neck or anything like that. I hadn’t had any blows to the head, so they still don’t know what caused it, so there was also a lot of you know discussion within medical people like, ‘Oh well we don’t really know what’s going on. So there was a lot of, I think there was a lot of things done, a lot of discussion done behind my back really, not about, you know sort of within the medical profession there was a sort of lot of ifs, buts, whys going on.

But mum had noticed that there’d been quite a few times when I kind of just drained the colour out of my face when this happens, so she could see there was something not quite right. So, she went and just spoke to me about it, then we went up to the GP. Told the GP all about it, and he sent us up to the [hospital name] to just to get a neurologist to look at me and see what they could find out. So once we were up there it was well, quite a while to actually work out that it was epilepsy. I had practically every type of test and scan that you could, you could get. But that wasn’t really just to work it out, it was, they did know that it was epilepsy, but it was finding the type of epilepsy that it was that was quite tricky with mine. And they practically got fed up with me ‘cos I (unclear word). They practically knew me, you know, they knew everything about me by the time they did actually work it out, and the type of epilepsy I’ve got isn’t actually like a named seizure, it’s one that’s unknown really. It’s similar to tonic clonic. But it didn’t used to be when I was actually diagnosed with it. It’s changed over the years quite a few times.

I’ve been to the doctors’ and you know they did blood tests and from what I now know from like being in the medical profession, and you know it doesn’t really show up anything, so it’s a bit pointless doing that, but she says ‘Oh I don’t think its epilepsy, you know I don’t think it’s having fits, see how you are and come back in a couple of weeks. I was just like, ‘Oh, okay. So I went away, within that two weeks I had another fit, same episode.

So I went back to the doctors like she said in two weeks time and, she said, ‘Oh your blood tests have come back absolutely fine. Yeah good, okay, that’s a plus point, and I said, ‘But I’m still having these, these fits. And she says, ‘Hmm, okay, what we could do is we could refer you to a neurologist. And I was like, ‘Yeah, that’d, you know that’d be good. Just to check it out. Just to make sure everything is alright. So they put the referral all through, and unfortunately what happened is they put it through as an emergency referral and they said that I should like get an appointment within three weeks. Unfortunately it, the doctor apparently who I saw, the GP that I saw was quite new, she didn’t even know how to use the computer which was quite weird like she was trying to type things in and couldn’t spell and stuff which I thought was a bit strange.

I went back, manage to get back and it was like no there’s not been a referral put through, and you just think, ‘Oh no and I said, ‘I’ve just had this fit again and you know I said you know I’m just, it was really starting to affect me because I was having to have time off work ‘cos you take like a day to recover afterwards, and I said I could really do, could really do with seeing someone and getting this sorted. ‘Cos it seems to just be getting worse, they’re becoming more, they were becoming more frequent and they seemed to becoming more violent as well and also as well they seemed to be seemed to be getting a bit like, I’d have one, and then I’d go straight into another and then straight into another again, and you’d know when you’d sort of had a really bad fit from how rubbish you felt the time afterwards.

And so, the doctors like apologised loads and they were like, ‘Oh we’ll put you through. And they said to me but the best thing is next time you have a fit, call an ambulance, go through A&E because that’s the best way to get seen straight away. I was like, right, I’ll do that.

When I was younger, I just, I didn’t really you know notice it, or see it as anything. I remember things like I use to fall down stairs or like that, but it’s only when I got older, you know, into my teen years and I realised that there was something wrong. ‘Cos you know I was passing out everywhere and having seizures, and I was told I didn’t have epilepsy, and that, well I was diagnosed with it as a baby and I got told I’d outgrown it when I was eight. And that’s about it really, there was nothing wrong, and it was you know just feinting or attention seeking they, I got a lot of different reasons from different doctors as to why.

What sorts of reasons?

Well one doctor thought it was attention seeking, another one kept speaking to me, saying it was due to mental issues and was speaking to me about mind over matter and explaining that if you want these sort of things to happen they will and that. And that was just about it really.

And how did you feel when people kept telling you know it’s this, or its faking? Do you remember at that time how that made you feel?

Sometimes, you just, you know there’s something there but at the same time you’re doubting yourself.

You know when people tell you there’s nothing there and that, and you have so many different people saying oh it’s nothing, you sort of think well you know it probably is nothing because it’s only me that thinks it is so.

Yeah. Did you challenge the doctors? Was it possible to say to them look this is what goes on for me everyday?

After a while you just sort of give up and think they’re not going to believe me anyway, whatever I say, maybe I am just you know making it up or it’s all in my head.

Yeah, so when you, so you had the diagnosis when you were quite little, did you have any seizures then at all?

A couple, then it stopped and I was off for a while then, the doctor stopped my medication, then I started taking them last September/October.

The seizures?

Yeah.

And how did it come back? What happened?

Well I was on holiday and my mum thought it was a diabetic fit then she took me in to get a sugary drink and we went back to the apartment to check my blood sugar, then my blood sugar was high, so it wasn’t that. Then I came back from to home got an appointment from the doctor and found it was epilepsy, back.

In that time before you got the right diagnosis were you at that time treated or were you on medication?

No I wasn’t on any medication or any sort of treatments. I was just sort of left to get on with things, which I felt very frustrated at first, and I was like why can’t they do something for me, why aren’t they doing anything. But I think they thought may be side effects of medication if it wouldn’t work would be something to contend with rather than just sort of putting up with the seizures.

And how do you feel about’ because it was a long time before you got the diagnosis. How do you feel about all that time that it took and the effect it had on you not getting it earlier?

I think it took longer than it should have taken. They should have been able to diagnose me, pretty well straight away, I think. And I think it did affect me. It affected friends more than anything they sort of became oh I don’t really want to go out with you, you know, I don’t really want to feel responsible for you and all this sort of stuff and I think the most important thing at that time was it really highlighted to me, sort of who your friends are who aren’t. But I think that was probably the most major thing about the waiting for so long for a proper diagnosis.

I was told you could grow out of it there’s a good chance which made it devastating for me to develop a new type actually. I remember the day I came back from, school after I’d, after I’d had this fit, and it was a sort of crashing I remember. I like to sort of play with a piano and write sort of music and I think I wrote the most depressing song in the world [laughs], just it was hard, it was a hard thing to take because, obviously it’s literally life altering, you know, especially if you’ve been told there’s a possibility of it going away, and it was quite well controlled and then this comes around it’s, it’s a big smack in the teeth. I think, I’m trying to remember, I think my grandfather was really, disappointed as well ‘cos he had epilepsy and he’d always worried that it, it had been his fault, he’d passed it on to me. They never found it, I don’t think it’s genetic in any way but, but there was no reason for that. But, it was definitely a punch a kick in the teeth to feel that.

Basically that the EEG had shown that there was some sort of abnormal activity and that they were pretty much sure that that was what it was that it was epilepsy, and that they needed to start me on the medication, and basically that, hopefully that would help and I’d be sort of free from the seizures or they’d be controlled. And they also helped by telling me, I can’t remember any of the examples now, but there’s quite a lot of, sort of more famous people that have epilepsy and you know, you don’t know, from seeing them on the telly or anything else like that so, I think it really helped just to know there was lots of other people, and to know there are lots of people my age. I was told that my consultant had lots of other people that were my age and that were sitting exams and that they’re all doing really well so it wasn’t something that, you know, you’ve got epilepsy that’s your life over sort of thing, so it was really encouraging to know that.