Holistic therapy, they managed to keep me nice and you know, chilled out, and they would always calm me down when I’ve had a bad time, as well, so I go there about once a month and it’s lovely to get the most relaxing feelings inside. It’s like heaven’

Can you tell me more about the holistic therapy?

Well I go there monthly and just well lie down on their bed and they give me a full body massage, and I just like close my eyes and well just don’t think of anything just think of you know just think nice and happy, just nice and relaxing and just lets me calm down and chill out, and it really does help a lot. So that’s the way it works [laugh].

Yeah is it sort of do they use kind of aromatherapeutic oils or something like that you know?

Yes they do use some oils on me and I can’t remember the name of the exact one but I think they used some lavender oil now and again, that’s one thing I use myself ‘cos when I was going through my exams at school I was getting stressed out so they suggested me just to use some lavender oil just on the, I can’t remember the name of the part of the head, over there, just put some lavender oil on myself so I could you know get myself relaxed and I was doing that. That did help then and nowadays as well when I’ve been going through the stressful points of for the housing and sort of looking into, I found myself just having some lavender oil then, and it’s helped as well. So, aromatherapy helps as well. It’s done a lot for me.

Well I did drink alcohol until they put me on Keppra (levetiracetam), that’s one of the medications that I’ve been put on, and it was fine. I could maybe have maybe a couple of glasses of white wine soda or something, but now I can’t even have half a glass of that, it just gives me a seizure during the night. I mean it’s okay if it’s maybe round about lunch that I’ve had it, but any later than 2 oclock, then I could quite easily have a bad seizure, so I just have to try and keep myself off the alcohol now. Which is a shame ‘cos I really liked the white wine soda when I was at the pub. It was a nice treat now and again.

Yes yeah. Does it bother you that you can’t drink at the moment or’?

Not really ‘cos I’m not a person that loves alcohol you know I’m not an alcoholic or anything, so, I can keep myself off that and just stick to plain fruit juice or something like that.

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’m trying to work out what I can speak about what’s been going on for the past few months ‘cos I’ve moved out of my parents house now, it’s, we’ve tried to find a way that I could be living independently but we’re finding like that quite difficult, so I just don’t know how exactly to mention it, you know, it’s ‘cos now I’m living in a hostel sort of place, I may have need to go back to my parents until I’ve sorted things out.

Yeah. Why do you think it’s been difficult to sort of sort, sort out the sort of independently and’?

Well it’s really ‘cos it’s, the seizures that I have, they don’t last for particularly long lengths of time, and they’re not serious enough to for me to have an ambulance coming to me. But it’s like my mum, she gets really quite worried ‘cos if I was living on my own I could quite easily fall out of bed and bash my head or something like that, and because of that she doesn’t want me to live on my own in case I go and choke myself, or something like that and. So we’re looking into it just now but it looks like won’t be able to get a person to be sleeping over with me every night, ‘cos you can get these sleepover carers but it looks like it would be far too expensive, and I’d probably have to pay for it myself, that would be impossible.

We have found out about another type of monitor that was on the internet when we were looking for other ways that we would, that I could be living, and it would be a bit better than the ones that the council has already ‘cos it would be triggered if the seizure that would happen would be lasting for longer than the average one that I would take. Or if I was out of bed for longer than usual as well, ‘cos usually I get up after having a seizure, and then would go back to bed and hopefully fall asleep again. So it would be quite good if I could just maybe get one of those monitors, ‘cos if that could be linked to the council then if I ever fell out of bed and didn’t get back in straight away then they’d be able to come out and check that I was actually okay and hadn’t broken a leg or something.

Nowadays they’re more like a tonic clonic, the one that I have during the night. I start off with groans in my throat and then I start the jerking of the body, then just go rigid for well I don’t know exactly how long it is, ‘cos I don’t know right, it’s the one, I do know about some of them, but those ones it’s just the jerking I’m kind of subconscious of. I don’t know anything about the ones I go rigid.

Do they ever happen in the daytime?

No, I never take them in the day. I mean when I get a lot of stress or pressure I do find myself having the funny feeling in the head, coming back but that’s rarely now, now that I’m not at school getting all the teasing that I used to get and not any pressure from like where I’m working and things, I don’t get the daytime ones unless something serious happens that gets me far too depressed. So it’s really just stuck to the night now.

I mean just over the past six months I’ve had a few times that I’ve been going a bit hectic causing me to have a few of these bad seizures, well bad lengths of time with extra seizures, so I was phoning the hospital then and they would just speak to me and I would tell them what’s happened, and they would give me some advice and. I mean one time they suggested that I just maybe took a week or so off work to try and get things sorted out to do with housing, and then you know I’d be able to get some extra sleep as well, not have to get up quite as early in the morning, and because of that the seizures wouldn’t get quite as high as they had been and that did help. Then there was another time I had a period of quite a few seizures during the day, and they thought that I might need to actually raise my medication, and we did do that, and it made a difference, but then we tried and a few weeks later when I’d not been having many seizures but I was still getting quite depressed about things, just to decrease it again. The seizures stayed the same, so it was obviously just ‘cos I was going through a bad period of all the things that were going on, that had caused the seizures, and once things had settled down it was fine. So they’re always you know, they’ve always got the way to do things, the right way.

Well the first thing they did was they gave me an operational test on my brain. It’s much the same as an EEG but it goes under the skull rather than just on top of the head. so it can get more detail in the seizures. So they gave me that, and then they worked out where it would be best to be putting the wires in the brain. Then they gave me another operation where they inserted the actual battery of the stimulator, just underneath my arm, and they’ve got the wire just coming up my neck here, and into my brain. So it does make my voice go a bit kind of croaky every five minutes when it does come on. A lot of people think I’ve got a cold quite a lot of the time but it doesn’t actually hurt me or anything like that. And it does kind of make my head kind of jerk a bit if I’m sitting in the wrong position. When I did actually get it at first, I found it really quite annoying when I was lying in my bed ‘cos I’d find I just could not actually get myself comfy ‘cos my head kept on like jerking like that every few minutes, it’d be really annoying but I’ve got used to it and now I can sleep perfectly normally it’s really just when I’m singing that I find it a bit awkward ‘cos the impulses it makes my tone of voice not go quite right. I’ve got a magnet that switches it off, so I just need to shove that underneath my arm on top of the battery and that’s switches off.

Well it comes on automatically roughly every five minutes for about I think it’s 30 seconds, like there’s six pulses that will go up to my brain. If I did have a seizure that I could maybe, like if I had them during the day, the magnet that I’ve got to switch it off, if I actually like swiped it over the battery that would switch it on, and it could get the pulse going up to my brain straight away. So if I had a seizure during the day, that was long enough to need that sort of thing, I could switch it on and it might make a difference. The thing’s just coming on just now can you hear my voice going funny? It goes a bit tight on the nerve there. So sometimes I can get a bit dry-toned, yeah.

Do you get a sensation with it?

Yes, it kind of gets a bit tight feeling there, and if I’m lying or sitting and my head’s like that I can sometimes feel you know the jerk, the feeling a bit that I’ve got. I find it quite hard to swallow as well when I’ve got it, so if I’m drinking something it’s really quite hard to like take a drink. Or if I’m needing to take my tablets I find when that comes on I just can’t swallow it, and it always has to just sit in the back of my mouth until the pulses have gone away. But I just have to make sure that the pulses have just finished before I take my tablets and then just take them all before it starts again [laugh].

Has it helped at all?

No it hasn’t made any difference with mine. ‘Cos I mean we thought it might make a difference ‘cos there was another girl that had it done in [city name] before myself, and it did make a difference for her. I think it almost completely removed the epilepsy from her, but it didn’t do the same with me. But it’s the same with a lot of people, it’s the vagal nerve stimulator works for some people perfectly well, but other people it doesn’t make a difference at all, so I was just one of the unlucky ones.

I did get a bit of an extension on my exams when, when I was going through that because of how hard I found it to remember all the information that I needed to remember. And that did seem to help me. I mean I still got a good amount of the qualifications I was looking for. I didn’t really be, end up quite as clever as I was when I was at primary school, and expected to be when I was older. ‘Cos I mean when I was leaving primary school and starting high school, I was expecting to be able to go to university and stuff, ‘cos I was practically as high as you could go for like all the, not exactly wonderful subjects but ones that were you know good enough to get you into university. But as I got higher into like 3rd, 4th and 5th year, that’s when things just didn’t actually work out very well ‘cos I couldn’t remember enough of the subjects to get the qualifications.

I was really quite interested in history and arts when I was doing my standard grades and at that point I thought about maybe being an archaeologist. ‘cos I was always really quite interested in that sort of thing, but then when it came to the end of my standard grades when I looked up to the next year I could see that history wouldn’t be the best one for me ‘cos I’d have far too many like different dates to remember and things like that so that’s why I couldn’t actually do a higher in history, so I had to just give up on that one. So I went onto just doing higher art thinking that I might be able to be a person who does the decoration of windows in our shop or something, ‘cos I quite like just doing the design section of art design, but then when it came to that it was, I just couldn’t get high enough in the arts, ‘cos when you want to do that you have to actually get into the College of Art, and I wasn’t good enough with the actual painting section of it, I was really just more for design, so I couldn’t get high enough grade in the higher to move into that sort of thing.