I found that in the early days when I was becoming used to the tablets, that if I did those things that you shouldn’t do, like you pushed yourself too hard, I remember one particular day because I was off work a lot, the police when I first found out I’d got it wouldn’t let me come back to work. So I had three months basically at home when, apart from these occasional seizures, I was perfectly alright really so I could do anything. So I was decorating one particular day but I did too much, worked far too late and the following day I had 3 seizures in one day. So in those early days I had to start being very careful with what I do. Now I would say that there are very few restrictions on my life and what I do, and the tablets don’t really restrict me in any way. So if I stay up late, as long as I don’t work shifts for too long, I did do shifts at the Post Office for a year

You did?

Yeah and I did, I did nights for a full year and it started to affect me after a while. I started to feel very light headed and having dizzy spells, and I think it was all related to the fact that my tablets were balanced so that the majority of my tablets were taken at night, so that they were beneficial to me in the morning, whereas I was working the opposite way round all of a sudden. So after a while I did notice a big issue there, so I had to come off nights.

Or if I’m ill I might have it, when I’ve had a bad throat or something it’s gone up a petit mal, it’s gone up to a grand mal attack. But touch wood on the whole they’re just little ones really, nine out of ten times.

And you said before it was just before a period or during?

Yes just before, I mean eventually, hopefully I’m gonna stop that soon, but I still get that now sort of thing, at the same time but the middle of the month its not so bad. Its towards the, that other side of the month about the, a couple of days before its due and then a couple of times when I’m on, and then it goes sort of thing, and then it stops
Again.

So can you kind of predict when it might happen or?

Roughly, not always because I wouldn’t say it didn’t happen in the middle of the month because it has done sort of thing, it does do that as well. But nine out of ten times it’s usually around about the time of that you know, whether its hormones or not I’m not sure! (laughs). And of course when you’re relaxed, because you’re relaxed, it comes on and you let it, sort of subconsciously you let it you know. And you know I think it tends to be, at first it frightens you if you don’t know what’s gonna happen.

Now I went through a period between the time I was 18 and late 20s, mid to late 20s, when I had a fit on average about every year, one fit per year. And that, I look back on and well I know at the time that was connected with being a teenager, drinking too much and going out and going to discos, late nights, early mornings and drinking. And that combination, the early nights uh, the late nights, early mornings, and drinking too much, that would induce a fit.

So whenever you kept away from alcohol you didn’t have any?

Yeah, yeah well, I mean I drink but one or two glasses of wine at a time, that’s me these days! (laughs).

Oh another weird thing is I can watch sports on telly, I can’t watch films very well, because it flashes from scene to scene. Whereas on sports such as football it tends to follow the players you know and it sort of, the camera glides. And cartoons.

And is that just on the telly or also in the cinema say?

Also in the cinema, I struggle with the cinema because its so dark. I have to have lights on when I’m watching the television. In the cinema it’s dark and it’s really loud as well and it gets quite hot. I went to the cinema for the first time in about six months the other week. We actually went to see like a, well me and my friend thought it was really scary, it was a ’12’ I think. We spent the whole time with our hands over our eyes! We were like! (laughs). It was good, but again it was the flipping from scene to scene.

Yes, but you managed to watch the whole thing?

Yeah and I, I just concentrate on when it will be over. I try and break it up into sections, you know sort of quarter of an hour until the break and then three quarters of an hour until it finishes.

And I find shopping really difficult with the lights and the, the heat of the shops and the movement of everything and everybody so I don’t run to a town if I can help it, I’d rather stay in quieter situations which is a shame because theres a big part of me loves window-shopping and going and watching films and going to, the theatre seems to be fine. Cinema is more of a problem, especially these days. The type of filming is so different to how it used to be and I see, and the television as well. The type of filming that’s on the television now I think is particularly unhelpful for people with epilepsy, there seems to be a lot of coming in close and flashing which I find quite difficult to watch. In fact I often don’t watch it because of that. I also find I’m terribly sensitive to noise, so the cinema with its decibels of volume, I sometimes wonder whether the whole world is deaf and its just me who can hear things normally!

‘I mean it’s difficult to say whether that’s just the epilepsy or how much emotional content is involved in that as well and also what is epilepsy. It seems to me so charged with emotions, with ones own emotions. I find that when I’m happier I have fewer fits. When I’m unhappy I have more fits. Which in a sense speaks for itself and it’s a vicious circle.

Yes actually during the summer months I seemed to be better off. It was when the autumn months begun, autumn and winter, they [the seizures] seemed to increase in number, I don’t know why. It would have been summer when the weather was brighter and warmer maybe my, it improved how I felt more. I enjoyed it more and not feeling so down with the weather and the atmosphere.

Yeah. Did you notice that you had more seizures when you were stressed out or worried about something as well, or any other triggers?

I would say it was more likely, I remember my doctor saying to me ‘don’t get worried or excited. But I was, out of those two, it was much more likely if I was worrying about something that it would help to bring on a seizure, because I would more likely be keeping it to myself – the worry – just thinking about it constantly, not concentrating on what I should be doing. And that worry would help to bring on the seizure whereas excitement, more likely joining in with other things going on, joining in with other people and things like that, it took my mind off on another subject and that would keep the seizures away I noticed. And that was one thing I found quite interesting.

I always look for particular links prior to ever taking the medication. About a year ago I noticed there was a definite link between food colourings and also particular ingredients within medication. For instance there was a, there was a medication called Amoxicillin and that has specific food colourings in it.

So did you make this link yourself or did?

I did, that’s right. I’ve always had to report back to the actual consultant, I did make this link, I pursued this particular link, read into it and because I’ve noticed theres a pattern, there was a specific correlation that when I’d eat particular foods, I thought that I just had a reaction to these particular additives. And I’d say that without the medication that I would continue to have these attacks. And as a consequence I can still carry on eating the same foods because the medication controls it these days. However, I do avoid amoxicillin as medication. And I just wonder if anyone else has had the same experience.

Have you ever tried any complementary therapies or alternative treatments?

No, no. I’ve always been one for exercise, I thought that exercise would say prevent attacks if anything, but it has interfered to a point, not really with say strength training but with the aerobic training such as running and rowing in particular I’ve experienced problems say towards the end of my, my workout or the activity. So its, its quite de-motivating. You hope the exercise will actually improve your motivation. However, when you have attacks whilst exercising, it can damage your enthusiasm.