The EEG was, I thought it was gonna be really scary it wasn’t too bad. In fact that was better than the MRI. The EEG, they stuck little kind of things all over my head, I think they are quite like ear phones. They had the kind of little pads and they stuck them all over my head with this kind of glue. It wasn’t proper glue, it was kind of gummy stuff. I had to lie there and I had to be as relaxed as I possibly could. When I found out that it wasn’t that scary and it wasn’t terrifying or intimidating at all, actually I could get quite relaxed because I’d read a lot about it before that was quite useful. They sent me a lot of information at the hospital so that was useful and I just had to lie there and do certain patterns of breathing. They actually were quite upfront, they wanted me to have a seizure. They were trying to bring on conditions that would help me to have a seizure, because if you do have a seizure during the EEG it means that they get your brainwaves and what your brainwaves are doing while you’re having one. So they can see what’s going on in your head and what your brain is doing, which is quite good. It’s more about how your brain is working than what your brain looks like because that’s what the MRI is and then they flashed lights in my eyes to see if I was photosensitive but I’m not, I’m quite lucky. I think about three to five per cent of people with epilepsy are photosensitive and I’m not. I’m quite lucky. So that’s how that went and then afterwards they, the lady she kind of used some water just to get the pads off my head to dissolve the glue. Although my hair was still a little gluey afterwards. Luckily I’d remembered to take a hat with me which was very good because my top tip for EEG’s take a hat. So I made it home and it all washed out perfectly well. And it was actually not a bad experience and it was explained so thoroughly to me, that it was almost a good experience. Though they didn’t find anything, but there you go.

Well after my third seizure I was given an EEG at a local hospital and I was quite scared. I was unsure about what it would’ I knew it wouldn’t hurt or anything but I don’t know why I was just very very apprehensive about having it done. I went along and had it done. And my parents were there, I remember that time. I felt uncomfortable in a way that they were there. I don’t know why, but it was very strange. I don’t know if I thought, I might have a seizure, because you know they are shining a light in my eyes I thought you know, I could go. I thought I didn’t want to see my parents upset again or something. I had one of those. I didn’t have any other tests until about two years ago now when I was given another EEG and this time I took a friend and I really didn’t want to go that time, I don’t know why again. But again it didn’t hurt or anything so yeah’

Why do you think it was a bit uncomfortable or you were apprehensive?

I am not sure. I think in a sense it is not so much the tests, I think sometimes the results. My second test showed, I had a letter back saying everything was normal. And I was like is that are normal for epileptic or normal so you know what does that mean and sometimes the information you know could be given to you in a different way than what you need. You need a lot of information and the results, I mean it takes months, the results to come back and you know you are just sitting around waiting. And it is just the whole process, it’s another test. You know another waiting list and are you really wasting your time and you know sometimes you just think what is the point you know. Sometimes you don’t think you are getting anywhere.

I had the EEG, they kind of put the electrodes on, and I thought ‘Oh that’s quite funny, I’ve got this stuff on my head and yeah it’s a bit of a laugh’, and then I didn’t realise they were going to put a strobe in front of your face and I didn’t know what a strobe was. And I thought, I just said ‘Okay,’ and they put this strobe on my face and it started to blink with you know the light. I thought ‘Oh that’s really uncomfortable’, and she said, ‘Keep your eyes open please’, and I was like, ‘Okay I’ll keep my eyes open. It just sped up, so it sped up slowly over about two minutes until the point where it was like hundreds of times a second, and my brain went into I would say a fairly severe absence, and I think that was the point. I think they were trying to trigger a seizure, so that they can monitor what on earth was going on. ‘Cos I wasn’t photo sensitive before and they were just trying to get something out of me I think. And I was trying to close my eyes and she said, ‘No, keep your eyes open. I can still really vividly remember like the light being like scarred into my brain almost, it was so bright. When I have an aura I lose the sensation in my fingers and my body and I felt I was floating and that’s quite what happens when I’m having an aura, I panic. I’m also floating, and I thought, oh God I’m floating oh this isn’t nice at all.

I remember the first EEG I had, I fell asleep [laughs]. I remember that one, that’s the one with they stick them all over, and they flash the strobe light. I fell asleep during that one. I think I fell asleep during the second one actually as well, yeah, they really don’t bother me. Stuff like that really doesn’t bother me at all, I’ve never really been bothered by like hospitals and tests and things like that. If I’m honest I probably found it all quite exciting I think. I’m probably one of those people who found it quite exciting. I quite like being the centre of attention, things like that. Yeah, fell asleep during my first EEG.

‘We want to do what’s called the sleep deprived EEG because it seems that a lack of sleep and obviously as well a bit of stress seems to bring it on for you’ I was like okay. That sounds good. He said, ‘But you’ll have to stay up all night. ‘Oh. [laughs] okay, it should be quite fun. He was like oh you know continue taking your medication when you go to the appointments and things like that. And he said what we’ll do is when we’ve found out like more if we can pin point something in the EEG we can change your medication to make something more specific for you, maybe for that type of epilepsy if we know. So, it was quite hilarious actually trying to stay up, my boyfriend kept bringing me coffee, he was like, ‘Have coffee, let’s watch a DVDs’, you know. I really wanted to go to sleep and about four in the morning I just said, ‘I Just wanna lie down just for a second. He was like, ‘No, wake up. And trying to shake me and I was like, ‘Oh, I’m so tired’, and when my mum picked me up in the morning and went for the test and I just, I remember feeling like a bit tingly in my mouth while I was having the EEG and really shattered and just feeling a bit funky, anyway not particularly feeling fabulous, oh you don’t suppose anyone would be after having no sleep.

I felt special for having an MRI because you know you only really have them in extraordinary circumstances and I was actually really interested to have pictures of the inside of my brain. I mean everyone knows that you have a brain, but I actually have physical proof that I have one. There are pictures. No one can say, ‘Oh Helen you’re brainless. Because I can show you, look, look hang on. There it is, that’s my brain [laughs]. So I was really pleased to have it done. In preparation for it they basically, I had to take out all the metal in my face which is no mean feat because I have quite a few piercings and bits and pieces. So I had to take all my piercings out because it’s like a magnetic resonance imagery isn’t it.

I don’t how I remembered that, but I did. So if you have any metal in there at all it gets completely dragged in, so it’s very important to take off all the metal that you have on your body. And then I lay there and actually I’m not gonna lie the MRI was quite, it was quite scary. Mainly because you’re kind of trapped in a small space like a little doughnut hole and I’m quite a big lady as well, so I was little bit scared about being stuffed into this little doughnut whole. Then you get all these weird noises as the machinery kind of whirs around your head and you hear grinding noises and it’s quite, quite loud. And they are quite nice with you, the thing is your head is clamped in and you’re supposed to try not to move it. The moment they say that you are moving your head, you are shaking your head, because you know that you’re supposed to be moving it. And they play you radio through headphones that you get. The thing is that you can take a CD and that’s my top tip for MRI scans is take a CD of music that you want to listen to and music that will calm you down, because I forgot and I had to listen to commercial radio and it was awful [laughs]. It was really bad. And I couldn’t hear the words of the presenters because it was so loud and I had to listen to really, really dreadful pop music. Which I do not like. So my top tip for MRI scans is definitely take a mixed CD or mixed tape of all your favourite music.

I remember when I had the first one, when I was first getting diagnosed I was sort, ‘cos I know a lot of people are sort of like very claustrophobic and stuff and I was just, I was loving it. I remember she was, this woman thought it was hilarious, and she was going, ‘We’re trying to take pictures of your brain Rebecca but we can’t actually find anything. And she thought it was hilarious and I was like, ‘Yeah my love, it’s fine. They just tried to make as you know funny as possible, but yeah I think I found it all quite exciting to be honest.