Interview EP11

Age at interview: 53

Age at diagnosis: 51

Brief Outline: Diagnosed with epilepsy in 2000. Tried various drugs which did not control seizures and caused severe side effects. At the time of interview, participant had stopped taking all medication. Current medication' none.

Recalls that she had symptoms of epilepsy a long time before she was actually diagnosed.

I have apparently had very, very mild petit mal for a very long time. I've been having very odd little episodes for years and I didn't know what they were. I did try asking my GP and basically I got told I was doing too much and I was just suffering from exhaustion. My daughter's first memories are of me unconscious on the sofa not being able to rouse me after she'd been frightened by a cartoon. After these little episodes I would always be exhausted. As I said I went to the GP, asked questions. I had other health problems at the time which probably made it worse. Then two years ago, nearly three years ago, I managed to hit myself on the head moving the furniture around and concussed myself. And after this episode I was having very peculiar things happen to me, not understanding what was going on, walking down the street not knowing where I was, er crossing, walking, I'd be walking down the street and the next thing I knew I'd be standing in the middle of the Euston Road with great big lorries going past me hooting and shouting and I didn't know where I was. I could tell I was in the middle of a road but I didn't know which road. I couldn't even have told you what country I was in or anything. 

Eventually I landed up at the Hospital and discussing things with the lady, having scans and other tests, at the end of which they told me I had petit mal.  

Recalls her experience of having an EEG.

One of them was very strange, I had this, I was, I had I think a head pan thing on, I can't remember, with probes and whatever and I had to look at this light and I was exposed to this light for different lengths of time. And during the whole experiment, or test rather it, felt like an experiment, I felt like something in a Frankenstein movie. I was having this normal conversation with this tester, who was a nice young man, chat, chat, chat while he pressed all the buttons, flashed all the lights. I think that was the idea to keep one calm and you know relaxed and you know and as a result of this test the consultant wasn't quite sure what they meant. She took them to some epilepsy expert and he just turned round and said epileptic brain waves or something. I can't remember what the official word for it is, epileptic brain, I can't remember I'm sorry what the proper word is. And she said "Oh right." So that was really the diagnostic point I suppose, was that particular test with its flashing lights. Now I didn't feel anything peculiar or odd because I'm used to having lights flashed at me because I've had you know eye operations and all this sort of stuff, you know.

Explains that she was happy to have a label for her symptoms but was concerned about other...

And how did you feel then when you?

What when I was diagnosed, shocked because I didn't consider these weird episodes to be epilepsy, I didn't know what they were, to be honest I thought I was going mad. I was wondering if I'd got some brain disease but I am a bit neurotic. Then when they told me I had epilepsy I was shocked and I didn't believe it because I always thought of epilepsy like the people I've seen having fits in the street. And in the end the doctor said to me you know that's, I said "How can I have petit mal?" And he said "Well these things you are doing that's the petit mal." And I sort of went "Oh," and I felt really stupid.  But in a way I was relieved because I hadn't got a brain disease, touch wood. I hadn't got senile dementia or anything like that so I was relieved, I was happy to have a label, I was happy at the thought that there was treatment available that could help so, you know. I was worried about some people's reactions because it is a stigmatised disease but I didn't keep it secret, I just didn't advertise it.  I was quite open about it because I have this belief that the best way to keep a secret is to keep it in the open, because then people aren't interested in it.

So yes you know I have not kept it secret although at first my initial reactions were, you know, how are people going to react to me. It's stigmatised, am I going to get worse, am I going to end up having proper fits, no, no, no, highly unlikely. So it was a confusing period but in the end I thought right I know what it is, it's better than what I thought it might have been, I can get tablets and I've not kept it a secret at all. 

Describes the severe side effects she had with various anti-epileptic drugs.

So anyway the doctor at the [hospital] put me on some medication, phenytoin. It was absolutely wonderful. It's stopped me having absences, I felt like myself, my brain worked properly, my vision worked properly it was absolutely wonderful. The only problem was that it also set my arthritis off, it was very painful but I really didn't care. I mean it was just so wonderful to have me back and not have the absences, not to be worried when I went out, it was just, and I really didn't care. I thought if this is the price I pay, I'm going to pay it. Unfortunately after a month or two it upset my liver, so I had to stop taking them. And I was a bit upset but I was perfectly confident that the next lot they gave me would be fine, I had no worries. Took the next lot and they didn't seem to do much good at all. And after a few short weeks they did something weird to my circulation system, so I had to stop those. 

What were they? 

I'd have to look that up. The next lot made me suicidal, I just wanted to end it all, life was so awful. So I gave them up. Er after this time I was, you know, anxious, worried, I'd had, I'd had a cure if you like, I wanted to get back there. I still want to get back there.''.

Er so after three failures I was not depressed but disappointed, you know.  I've since tried two more, one, I remember the consultant saying to me "This one might take your skin off," and I thought he meant like sunburn 

Silly me, what it actually does is separate, is separate the skin from the tissue, it is actually quite painful, so I gave up that one. I've been prescribed a sixth drug for months but because of the after effects of the last one I haven't got round to taking it yet. 

Explains that she found some of the information on the internet frightening.

Did you look for information on epilepsy at that time?

Yes, yes I looked for information on the internet, I found the site of the British Epilepsy Society and to be honest I found their site quite scary. Er it dealt with some very heavy topics, I felt, far too heavy for little moi with my mild petit mal er so I didn't get very far with that. I did look for support groups on the internet and I didn't find any, at least not anywhere near me. I suppose I ought to look again. Er but basically I found a lot of information on the net very frightening. I didn't find it very relevant to me at all. I didn't find that much information on what I have got which is apparently called atypical partial seizures. My sister, who is a doctor, also looked on the internet and she also looked on those sites which are available for doctors. And she didn't come up with much either, not much that she felt was useful. She printed me off two or three papers but apparently most of the work on atypical partial seizures is done on children er so she found me some stuff on that. But no I didn't find it very, and I'm quite good at finding things on the internet, I mean I spend a lot of time on the internet so I was a bit disappointed.  

Explains how her epilepsy affected friendships.

Did it effect your friendships?

Yes it did because a lot of people didn't understand what was going on. It began affecting my friendships before I was diagnosed because my behaviour was getting a bit erratic if you like. Not that I noticed but they apparently did, so I wasn't considered socially reliable if you like or reliable to behave, you know, appropriately. Well I didn't do anything drastically wrong. I just said the wrong things and didn't follow the conversations and I always seemed about three or four steps behind or whatever. So it did have a serious effect on my friendships because no one knew what was going on and I retreated, they retreated, you know, that's about it really. 

Recalls being declared 'unfit to work' and how this affected her.

I had been looking forward to going back to work that's perfectly true though I was a bit apprehensive as I haven't worked for a long time. And all this accident with my head happened at exactly the wrong time because I didn't have any option but to go back to work because [my daughter] hit 16. At this point I was in no fit state to work and you know though I went along and I tried to do things and whatever, and in the end the doctor wrote me a certificate, writing me off I think for four months I think it was. And then he sent me another, the DHSS another form for another few months. The next thing I know I get a letter from the DHSS telling me that I'm disabled. This arrived on 2nd January 2001 and I thought what a lovely way to start the new millennium. I was a bit upset, you know I was angry. But anyway it's been useful because no one no longer is hassling me to go to work. The fact that I've been written off is depressing, the fact that I know that there are jobs out there that I could do perfectly easily but I can't because I can't rely on being able to remember things, you cannot go and work as a secretary for example and be in a situation where one minute you can't remember how to use the phone, you know. Or you don't even know what a phone is for sometimes, you cannot go out to work and be in that situation.