Interview EP12

Age at interview: 49

Age at diagnosis: 14

Brief Outline: Diagnosed with epilepsy in 1965 at age of 15 but had symptoms since around 3-4 years of age. Had neurosurgery at age of 14 though epilepsy is not well controlled. Current medication' carbamazepine (Tegretol) and levetiracetam (Keppra).

Background: Medical secretary; married, 2 adult children.

Discusses the events leading up to her diagnosis.

It's hard to actually say when I first found out I had epilepsy because I was a very little girl and I had older sisters and a younger sister. And I recall we'd been out playing skipping in the street and I can recall thinking there's a very funny smell out here, it's kind of like seaweed. And I said to my sister "Can you smell that funny smell?" She said "Don't be so daft." I said "No there's definitely a funny smell." "Oh you've just got a funny nose." So we all had a bit of a laugh and a joke about it and of course the smell passed and nothing happened, I thought it's definitely me.

And then as weeks passed, and I could've only been about probably five or six years old, and certain words sounded funny when people said them. And the one particular word I remember is the word 'me'. And I said to my sister, not the one directly older than me, the one older than her, I said " Don't you think the word 'me' sounds funny?" Well of course she just laughed.

And I remember getting in the taxi and I can remember getting to my sister's, and I can remember mum putting me to bed because I felt absolutely awful. And the headache was absolutely thundering and I couldn't stand the light and I was obviously very, very unwell. I obviously, I don't know if I lost consciousness or just passed out in pain but it was really, really bad. And the next thing that I recall waking up in hospital and it was in the neurological.

And there was a little girl in the bed sitting opposite me and she was singing happy birthday. Well we'd gone over to my sisters in June and I was 14 years old and I'd woken up on 2nd August, which is my birthday and I was now 15 years old.  And this little girl was obviously singing happy birthday to me and I didn't realise this because I didn't know where I was.

Explains that she sometimes wonders what might have caused her epilepsy.

At 5 years old I got knocked down by a car and I ended up in hospital, and I think my mum and dad feel sure that that's what caused the epilepsy. But I don't think it did, I think it's just one of these little things that happens in life and I happened to be run down. Because my sister was knocked down with me and she seemed to bounce back up, she was alright (laughs). 

I'm told I've got epilepsy because of this blood vessel that's leaked over the years causing the seizures. Well is it just because they weren't aware of it that it wasn't dealt with when I was a young girl or was it something, was I born with it? Was it something that happened perhaps because, I mean how many times do we knock our heads when we're children, is it something that happened because of that? And then what caused it to break, what caused it to burst, did I do something sort of the week or the month before? And if other people suffer with epilepsy sometimes it's picked up straight away, even when they're babies, why wasn't mine?

Describes what happens when she has nocturnal seizures.

And I got myself a job, and was quite happy with it and then whilst working, where I'm actually working now, I discovered that things probably weren't looking so good because I was having lots and lots of headaches and I was having more seizures in the night.  And what was happening now was I was probably having grand mal attacks because I was waking my husband up, without intending to, and I was now biting through my tongue. And I would come round to find myself feeling absolutely awful, thundering headache, I couldn't move my mouth because I'd bitten through my tongue. There was blood all over the pillow and I realised oh you know this didn't used to be like this. 

It can't be that bad [now] at night because I'm not biting through my tongue, I don't get blood on the pillow, I don't see the blood running down my chin, I don't have that. Also I haven't woken my husband, but I have to say he does sleep like I log. But I think if I were to have grand mal in bed it would wake him up. So whilst I wake myself up and I'm thinking 'oh I think I've just had a very bad dream' and I'm not quite aware of where I am, it's only a few seconds to pass and I realise I'm at home. It's my bedroom and you've obviously just had a mild seizure. So it does take an awful long time to go back to sleep and yes I'm always left with an absolute thundering headache, but apart from that it's just fine.

Describes having a change of medication when her seizures worsened.

And when I realised that I was having more seizures and they were now grand mal seizures I thought well I'm not really happy with this, I must do something about it. Because I couldn't go out on my own with the fear of probably not getting to work or probably not getting to the shops. I can't have this you know, we must do something about it 

'So I went and saw my GP who was a very good support to me and he said "What we need to do is we need to have a complete change of medication, perhaps, and there are far, far more different tablets on the market now that perhaps you could be introduced to.  

...Anyway I'm now on a drug that I was told was a new drug and it's Keppra. I can't say the proper name, it's a long name, it begins with L and I can't say that. But I'm quite happy with it now, I wasn't when I started taking it, excuse me (coughs), because it made me feel really, really drowsy and really, really tearful. And I thought I can't go to work like this because I can't do the job that I'm employed to do if I'm like this. So I thought I'll have to go back and see my GP again, I'm not happy with the way I feel and I went back to see him and he immediately got me a soon appointment back up at the hospital where I went and again they were very, very good up there. They understood and the tablets were chopped and changed around a bit, still taking the same drug which is fairly new but altering the way I was taking it. And so now I'm fortunate enough to probably have not had another seizure, during the day that is, for getting on for 6 months, which I'm really pleased with.

Describes being told off in class when her teachers were unaware of her epilepsy.

Anyway time went by, until in the end, and I was probably about 8, 9 or even 10, when I could be in class at school and the teacher would say "I want you all to do your English and what you don't finish in class today I want you to do it at home and then you bring it into school tomorrow." Well I had obviously had a seizure but I wasn't aware of it, the teacher wasn't aware of it, my parents weren't aware of it because I can remember her saying "Do your English and what you don't finish today," but the rest was completely, like I just didn't hear it, it was as if I'd gone deaf you know, I just didn't hear it at all.

So I would get told off for something in school for something I didn't even know I'd done wrong. And then by about the age of I'd say 12 and 13, I started to probably have worse seizures because I started to push things away that were in front of me. So if I'm at school and we're doing a really boring history lesson or something I would have a seizure, not knowing I was having it. I had no lead up to it at all, apart from this funny smell of seaweed, but after all my sisters told me I was daft so therefore I had to ignore it. And I would push everything off the desk in front of me you know the pens, the paper, the books. And I was told that I used to say "Yeah I know, I know," but I didn't know I'd said that and I didn't know I'd pushed the books off the desk. And it was probably only a couple of minutes would pass and I would be sitting there in class, the teacher would be standing next to me giving me a good telling off for messing the class up, and I would be thinking who's pushed all those books off the desk. So that to me was a very, very weird sensation. 

Recalls having an absence seizure on a bus and missing her stop.

Well I, because you know when my husband was at work I had no choice but to use general public transport, but I don't keep hold of the fear that I might have one [seizure] on the bus. And I have come home before now and I've got the bus, and got on the bus and I'm actually talking to the person I'm with on the bus, and then I come over feeling really, really peculiar. And I know that I'm  going to have a fit and I obviously don't fall down and the person I'm with don't know me that well, we know each other because we travel on the same bus and I've gone way past my bus stop. And the next thing I know I'm up in the middle of ? Square which is far from here and I'm thinking oh my goodness what am I doing here? And then I'm trying to think how do I get from here to where I live and it's that can be worrying. But you mustn't let it get on top of you because if we all let it take over, we wouldn't go out in the end would we? 

She had problems with her second child which might have been caused by her drugs.

Anyway I fell pregnant quite quickly and our daughter was expected, it was 1974. As far as I'm aware I only had these blank moments, it didn't do me any harm. And when she was born she was perfectly well, perfectly healthy baby.

Two years passed and we decided yes, we'd like another child. And I went to see my GP. Because I remember what the consultant had said to me in [hospital].And my particular GP was on holiday so I saw another one and he said "Oh because you say about the medication, perhaps you ought to stop taking it, I think it was Epanutin (phenytoin), continue taking the Mysoline (primidone) but stop taking that one. Of course your doctor will be back in about 2 weeks time and then you make an appointment to come back and see him, and he could put everything straight." Well I didn't realise it but I was already 2 months pregnant and by the time I got to see the GP I was registered with, I was well and truly 3 months pregnant. Anyway he stopped the medication again and he said "Prepare yourself to have more seizures." I don't think I did. 

Anyway our son and he was born and he was very ill at birth. He couldn't breathe properly and he was eventually sent up to [hospital] where they operated on him. 

And we decided that because of that, we were told that [anti-epileptic drug] could have been the reason that [my son's] got these problems, but the more likely, the heart problem, perhaps the lungs could have been one of those that's going to happen anyway, we don't know but probably the heart problem. 

Recommends asking questions and getting explanations from doctors.

Well I think if you've just been diagnosed, depending upon your age of course, you might be a youngster but if you were someone who's around 15 years old , as I was, it's something you mustn't feel frightened of. And you certainly mustn't feel you're second best because you're not. We're all equal, it doesn't matter what disability you have, but I think what you should do is you should speak more on an even with the GP or with your doctor and you should say to him "Well explain that to me because I don't understand it. And why are you saying to me to take this tablet, you know I don't understand, and why are you saying to me to have this MRI, what will that explain to you?" And I think that they should try to be a little more open than I was because it helps them in the long run.