Gemma - Interview 20

Age at interview: 17

Age at diagnosis: 16

Brief Outline: Gemma was diagnosed with epilepsy at 16. She is now on lamotrigine and her absence and tonic clonic seizures are controlled.

Background: Gemma is 17 and in year 12 of Sixth Form. She is single and lives at home. Ethnic background / nationality' White British.

More about me...

Gemma is 17 and in year 12 of Sixth Form. She had her first suspected seizure in a science class in year 7. After a few years, she started having blackouts where she would miss parts of the lesson. At first, the doctor thought Gemma had problems with her sugar levels and she went to see a diabetes specialist who in turn sent her onto a neurologist. By this time, Gemma's seizures were getting worse. Gemma had an EEG, was told she had epilepsy and was put on lamotrigine. This was four months before her interview. She has had both absence and tonic-clonic seizures which are both now controlled.

Gemma has had a few seizures in school. She says her friends were first upset about her diagnosis. She says now they appreciate that getting the diagnosis actually helped her to get the right medication and control her seizures. Her friends and family have been really supportive and she says that the people close to her have helped her most in the past few months.

Gemma has made adjustments to practical things in her everyday life. For example, she has a sign on the bathroom door when she's having a shower, she places pots and pans on the hob with the handles facing in and avoids clubs with flashing lights. She is also very careful not to get over-tired as it is her main trigger. Her consultant has been really good and Gemma can ask him anything without being embarrassed or feeling awkward. It's been important that the consultant has looked at her life as a whole and considers all the things she wants to do when choosing her medication, for example.

Gemma will finish school in a year's time and then plans to go onto university. Gemma was hoping to become a paramedic but because of epilepsy she decided to do nursing instead. She says she will not let epilepsy stand "in her way to do anything she wants" and by taking a little more care, she can live her life as everyone else. Gemma says she doesn't think epilepsy has changed her sense of self because' “no medical condition defines who you are, it is just something you happen to have”.

 

You can find Gemma's video diary by clicking here.

Gemma describes what happens when she has an absence in the middle of conversation and how...

And it was a pain because I could either think or I could speak but I couldn't do both, which made it really difficult to have a conversation with me. I was once babysitting with my friend, I think I was about 15 or 16 at the time, and she asked me a question and apparently it was five minutes before I answered her. I didn't realise it was five minutes, but that's what she said.  So basically she'd been sitting there, I hadn't answered her and she'd been sitting there and then suddenly I answered this question and because my answer just sounded so random she was like 'What?' 

There were the petit-mals when my eyes flickered and  sometimes they could do it really, really badly, so badly that I couldn't actually see anything.  I had to close my eyes because it hurt and it was really strange because even then I would get this same feeling of helplessness and be really emotional and I'd burst into tears over anything. But I couldn't help it, it just  came with it and it was so annoying. The grand-mals were the actual fits and so there were different types. 

So yeah, that was one of my bigger stresses, rather than the fits. The fits were annoying, the eye flickering was really, really annoying because I couldn't control it, never could I control it and it would happen sometimes and I wouldn't know it, but other people could see it. 
 

Gemma's video diary

Gemma's video diary

Gemma describes various safety precautions she takes at home.

I had to make lots of adjustments things like, because of the nature of my seizures, I have to cook, like when you're cooking and you've got the hob, the saucepan handles have to be facing the other way so you can't hold them like that they have to be like that.  which is basically just in case you fit and then knock it and you've got boiling sauce or water all over yourself. Ad we have a sign on the bathroom door for when I'm in so I don't lock the door, but other than that it's pretty much as normal. I wear identification jewellery so that if I was to have a fit anywhere people would know but other than that I just live a normal life with it.

I said about the saucepan handles they can't face out like most people want to cook with. We had a few issues here because I insist that the knives are blade down when they're draining, so you're meant to do that, what else' don't carry a pot of sort of pasta in its water that's just boiled across the kitchen, the plates come to the hot things rather than the hot things going onto the plate, it's just extra precautions and I think, at first I thought 'oh my goodness I'm never gonna be able to do that sort of thing' but it comes naturally now so.

Yeah. Do you cook on your own or use a hot iron or things like that?

Yeah [laughs], I've heard a couple of people say, 'Oh you should be cooking in the microwave.' And that sort of thing but, I don't know I just, I wanna do the same as what other people do I suppose. I iron and I cook on a hob and an oven and everything else maybe it's not the most sensible all the time but, I do it [laughs].

Gemma had a seizure in the common room in school. Pupils she didn't even know came up to her...

The last one I had at school was at the end of break time and we have quite a large common room. And on one wall there are lockers which the friendship group I'm in sit probably inconveniently in front of them. And everyone was going off to their next lesson and thankfully I was sitting down, but I had quite a major seizure into headfirst the lockers, and I was totally out of it so I don't remember much of it but, apparently the firstaider came up and they took me down to reception and just phoned to say that I was going home. At one point I thought I was going insane when I first sort of came around afterwards 'cos there was a vibrating by my head, which turned out to be my friend's phone 'cos I had also landed on her bag. But people were really supportive, there were people that sort of didn't know me that were, you know, saying, 'You okay?' And had apparently said to my friends that they'd go to reception for, and that sort of thing. So it was really nice to know that even people that I don't necessarily know were being supportive so that was really good.

Gemma felt reassured by her doctor who told her of the many famous people with epilepsy and of...

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.

Gemma describes what happens when she has an absence in the middle of conversation and how...

How long do the absences last for you?

Just a few seconds which in itself isn't too bad but when you consider that most of the time it's sort of a sequence of a few you then, begin to lose sort of a minute of whatever's going on and then it's 'oh what are we doing?'. Yeah I found that quite upsetting. People used to say to me that I hadn't been listening to them and I was like, 'Well you didn't say it.' 'But you haven't been listening.' I said, 'No I was.' [Laughs], 'You didn't say it.' So I think it was really useful to just know that there was a reason for that.

Does it always click with you, that must mean that I've had a seizure?

Yeah I think it does because you're not always aware that you've had them until you know that you've missed something and if someone says, 'Oh I told you that a minute ago.' I'll go, 'Oh, are you sure you told me?', 'Yes.' And I just think 'oh possibly I had a seizure then'. But I think with those they're quite common, I think, from people say you grow out of them as you get older but I've grown into them so [laughs]. I think I'd just take those ones with a pinch of salt it just happens. You can't go back and do anything about it so just make sure everyone tells me everything at least three times so that at least I know I've heard it once [laughs].

Do you feel that you have had to work harder because of some lessons or some things have been more patchy?

It's been noticeable the last few weeks when I've been going sort of class work to revise and I thought 'we weren't taught that'. I've got this photocopied sheet and I thought 'we haven't done that'. But obviously we have it's in my folder. I think it's just taken a bit more input from me and I've had to work a bit harder in that respect just to catch up what I've missed kind of [laughs].

Gemma had one seizure in class in year Seven but was not diagnosed. Everything went back to...

When I was in Year Seven at secondary school I had a pretty impressive fit or faint off of the back of the Science stall. And we went to hospital then and they said that they didn't really know what was wrong, and basically said that I could go home but if it happens that I needed to come again. and nothing really happened for another few years and then I started, having blackouts I'd faint and I'd miss sort of parts of the lessons so I wouldn't know that everyone else had started a new page or something like that and I used to faint quite a lot. And at first we thought it was related to blood sugar which is what initially one doctor said to us and said, 'Oh she'll be okay, when she wakes up give her some sugar and, you know, it's hypoglycaemia.' And then we went to a different doctor who was a diabetes specialist and he said, 'No that's wrong, it's nothing like that.' And then he sent me to a neurologist by which time my seizures were getting a lot worse and I was having more major ones and, what people classify as 'real seizures' even though they're all really as bad each other.

Gemma says people who don't know much about epilepsy can be harsh but thinks epilepsy is more...

I think it's just with lot of things, you know, if you haven't really got the condition and you haven't experienced it I think people just don't quite understand and people can sometimes be a bit harsh in the way that they say things just because they don't understand. I think not long ago epilepsy was something that people were almost scared of, but I think it's a lot more, there's a lot more information now and people know a lot more about it so I think it's more accepted if you like and people find it to be okay and I think people with epilepsy can get along fine really and but, you know everyone needs to make sure that people around them do understand what it is so you can avoid awkward situations really.