Interview EP26

Age at interview: 42

Age at diagnosis: 6

Brief Outline: Diagnosed with epilepsy in 1966. Has poorly controlled epilepsy and has tried various drug treatments over the years. Current medication' Slow-release carbamazepine (Tegretol Retard), gabapentin (Neurontin) and levetiracetam (Keppra).

Background: Voluntary charity work; single, no children.

Explains that she was diagnosed as a child and has grown up with having epilepsy.

Well to begin with I suppose I would consider myself to be very lucky because I've had epilepsy since I was 6 years old so from my own point of view it's just something that's just always been there. I've always had epilepsy therefore I haven't had to adapt my life style to suit the seizures, its grown up around it anyway.

When I started meeting others who'd had far more extreme problems with school attitudes and lack of help in schools, ignorance about the condition itself was completely in schools, I was quite amazed. I hadn't realised there's an awful lot I took for granted as being everybody got that sort of help, but when I found out it didn't happen like that and the world was not quite as nice as my world had been I felt I think, I think I felt guilty that maybe I'd had so much help and so much support. It didn't seem right that everyone else should be suffering this kind of ignorance.

Recalls that her parents tended to be very protective of her.

So there aren't any great problems that stick in my mind from the beginning. It was as I got older that it became a problem because I think independence is the main thing that was, that you are restricted with, if you have got uncontrolled epilepsy, it is that restriction, it's a nuisance. So for example when I was in my teens and after a very caring, over-protective mother not wanting me to go and ride on friends' motorbikes or go to discos or do anything like that, I tended to think well I've got to struggle to show I can do it and I can do it safely, whereas my little sister gets it handed to her on a plate because she's safe. And things like that went through my mind then. And again as I got older it was more difficult to, to give her peace of mind with the idea of me leaving home at all.  She had to be confident that I was put in the polytechnic - as was - housing scheme rather than just go and find a house like a lot of my friends did.

Explains what happens during her complex partial seizures.

Apparently not long after that I was doing a ballet dance in front of my mum and I did a very involved twisty movement, fell down on the floor and started shaking around, and she said she thought for a while that was still part of the dance (laughs). She didn't realise there was something happening. That amuses me, to remember because the first time my GP actually saw me have a seizure in his presence he said I sort of got up and looked like I was moving and dancing and he wasn't quite sure if I was taking the Mickey or having a seizure because he hadn't seen one himself in all his working life (laughs). 

Yes I mean the majority of them are complex partial seizures where I will cut out for a moment or two, come round maybe with a bit of a sore head and feeling tired and think 'oh did I have another seizure?' And sometimes again according to my tiredness, my level of down at the time it can be two maybe three minutes even in which case I will come round with quite a sore head, feeling a bit dizzy. And then I know I've had a seizure. 
 

Describes what happens before she has a tonic-clonic seizure.

So when you have been having the seizures, have they always been the same type of seizures or does it vary?

Oh no I've got to be awkward, they do vary quite a bit. When I was younger they used to be, or the ones that were immediately recognised were the major type, tonic-clonic seizures, again I get plenty of warning for those. I've always had this opportunity to be able to say 'Oh Mummy I've got my lights,' which always meant I was going to have a seizure, because I had a sort of prismatic perception in front of me and I was never able to describe that to a doctor until somebody flicked a bit of light under a television screen and I realised then it sort of clicked in my head that's what I've been seeing all these years. 

And the idea as well about a dying man seeing his life flashing before him is something I can conceive. I can understand that idea because when you're going through that sensation its like having a lot of memories running past your mind really quickly and you get the feeling, and if you could just freeze-frame that you could identify with something that's going through your mind. But it's going through your mind too quickly for you to stop it and recognise anything and that can be frustrating but exciting at the same time, it's a funny sensation. 

And how long does this warning last? 

Well to me it seems like a couple of minutes but people observing me say it's more like one minute than two. And again the length of the warning will determine or not determine, that will depend upon I suppose the type of severity of the seizure I'm going to have at that moment in time. If I'm under a lot of stress it could be a very, very long seizure in which case the warning will be long.

Expresses her concerns about an anti-epileptic drug and the risks of osteoporosis.

It was only when I changed my doctor and got to see the consultant I'm seeing now, who I've got great respect for, did anyone bother telling me then that actually phenobarbitone withdraws calcium from the bloodstream, you carry on taking it, especially after the menopause, there's a strong risk of osteoporosis. And to be quite honest I was furious that this information hadn't been given to me sooner. 

I mean for example I feel that even if they couldn't have withdrawn the barbiturate at an earlier stage I could have done more to work against the osteoporosis by checking my diet, doing more exercise. I'd have been a far, far more active person if I'd known that this risk of osteoporosis was hanging over me. And this is why I think it is very, very important that doctors, consultants or GPs, at any level, give the patient as much information as they possibly can, not necessarily just what they think the patient can deal with at that moment in time. They've got to allow the patient a bit more space and freedom than many doctors do. Because the feedback, the after effect could be worse than not telling them at all. 

Discusses the impacts of different anti-epileptic drugs.

Apparently there were several different ones I tried and after a while a combination of phenobarbitone and phenytoin were found to be the most successful. 

Yes.  And you've been on those ever since? 

Well I was on those for oh, I should really have made a note of the drug dates for you. I was on those for most of my teenage life, my early years. Mid-20s I was tried on Epilim and that was found to be reasonably successful in controlling the seizures but it made me a bitch, it really got to my emotions more than anything else had done and I said 'I just can't carry on taking this, or my friends can't bear me taking it.' 

Carbamazepine was added some time before that, that has been fairly successful as well in controlling the major seizures.  When the 'Gaba' drugs came out several times the doctor I was seeing at the time, the consultant I was seeing then, tried to withdraw the Phenobarbitone and found they could only get it down to a certain limit after which I started going into worse seizures than I had been having, or could cope with. That went on for some time and I understood the reason for stopping phenobarbitone then was simply that it was an old drug with numerous minor side-effects and the only one that you became tolerant of, the only one that was really dangerous in the addictive sense. 

Explains that some consultants were much more informative than others.

Well certainly when I was younger from the time I was a child to the time I left home when I was what 19, the consultant who was treating me then was somebody who spoke to me as an individual.  He didn't speak through my mother, he didn't speak to my mother and ignore me or anything like that. He spoke to me. And he gave, I felt my understanding of epilepsy was complete as a result of that. He fed me all the information that I felt I needed. I felt perfectly confident in his hands. Any questions I did have he answered on my terms and gave me a good feel and understanding of anything that was worrying me. And so there were no questions at all really then because even my GP he was a family friend, he was somebody in the locality whose children I played with and he understood every aspect of it and again was very easy to talk to, very easy to explain things to me and it was very easy for him to understand some of the social issues which again a lot of GPs, even though they're well meaning, can't really. 

From the time I was sort of early 20s to mid-30s I had a consultant then I'm afraid I had no patience with.  His attitude was well 'you shouldn't ask questions, you're just the patient, you wouldn't understand, you do whatever you're told,' sort of thing, and that frustrated me. Because there were times, I think now looking back certainly I knew more than he did about the condition. He saw me sort of once a month, or at least every twelve months rather for maybe half an hour at the most so what the hell does he know about my situation. If I asked questions because I got no answers I finally went through a relative who was quite high up in the medical world, she got me to see a doctor in Harley Street who was very highly respected in the field, he answered all the questions that I'd been asking for years. And I think when my own consultant realised this had happened his attitude to me changed immediately and suddenly he was very polite and respectful and as a result of that basically I just changed my consultant. I'm now with one who I feel is very straight all the time; gives me all the information I want. 

Advises against blaming everything on the epilepsy and letting depression overwhelm you.

But really, yes, people spend a lot of time telling you what you shouldn't do, what you can't do, how to be safe, and I think if you follow that too often you end up feeling you're worthless. Put that together with a lack of independence if you're in a position where you can't drive, or it's not maybe safe for you to live at home by yourself, it can be very frustrating, that would create a lot of depression. The depression will just bring you down and down and make you far more likely then to have seizures. You're less resistant to anything then aren't you, if you're at a low ebb it's far more likely that you'll have seizures.

...You can very easily fall into the trap of feeling sorry for yourself and then blaming everything on epilepsy because it covers so many aspects of life. If one thing happens at one end you can blame something at the other end and say it's epilepsy and use it as a tool against yourself. That's something you've got to be very careful of I think and that's a reason why you do need good friends around you. They don't necessarily need to be friends who have an understanding of epilepsy, just good friends.  And most people have at least one or two good friends.

Discusses her concerns about the stigma and ignorance around epilepsy.

And yes so the stigma does hang over, you've got to persuade people that there isn't a reason to be frightened, there's nothing to be scared of. And of course when you see somebody having a major seizure the instinct is to go forward and do something, its very hard for people to understand they've just got to let it go with the flow and there's nothing they can do.  So that confuses people as well about the nature of what a seizure is. 

And this stigma, there are still too many silly myths that are connected not necessarily in people's conscious awareness but in the background of their minds, this idea of witchcraft etc., is still there floating around in the atmosphere, in the air you know. The idea that because it is something affected by the central nervous system, affected by something in the brain, therefore there's a connection with mental illness.  

And this is happening even now, time after time, I'm coming across either cultural taboos or social attitudes which put pressure on people that just don't need to be there. You don't need to be a medical specialist to understand the basic social rights and values which are just not allowed, and as I say that surprises me still.

Recalls that her teachers were understanding but that stress brought on seizures.

School was always very useful, very helpful and then again, so it's not something that's stuck in my personal memory as being a problem when I was younger. Looking back I know that it was because it means I missed a lot of my primary school years. And certain things I wasn't allowed to do like going swimming with the class. You know the worst thing I can remember about school was having to do hockey twice instead of having to have that once a week. 

'I suppose education was, the big restriction was round about exam times, because most of those I got quite literally carried out of. And by the time it came to doing things like 'O' Levels and 'A' Levels the school had been kind enough to work out a system whereby I was taken out of the alphabetical order of people, put at the door that was nearest the back of the class, nearest to the door and the three male teachers who existed in the school were always just outside the gym room door ready to come in, grab me and drag me out again as soon as the seizures started you know. 

Which meant that you know I had to repeat quite a few exams. I missed quite a lot of them. Even the ones I repeated I had seizures during and so my qualifications I feel could have been better but for that. And I always used to have a strong feeling about, in the same way continual assessment would have been a better idea for many people like myself, I still think it would be.

Discusses some of the difficulties with finding work and the benefits of doing charity work.

But you say 'epilepsy' and that just sends most people completely awry because they can't identify with that unlike many illnesses, they're not quite sure what would happen. 

And to be fair to employers I can't even tell them. I can't predict when I'm going to have a seizure, what kind of seizure it may be, how severe that seizure may be, whether it will provoke another one within the next two hours. And I can't even tell them that yes I will do a certain amount of work within a certain period of time. So I can see the employer's point of view. Together with the fact that you may be an insurance liability in certain areas as well. But I think that is only due again to a lack of information. Since I've been doing more charity work I've found far more value in my own self as a result, I've realised there are jobs maybe I can do. Maybe I'm not so worthless because actually in the charity sense I'm probably doing far more work than many of the people I know who are employed in the care area, you know I don't, I'm working hard and I'm not getting paid for it is the only difference, so maybe I can consider that as an idea.  

Identifies some of the activities she can't do alone because of safety.

That's the sort of thing I think people don't understand about epilepsy as well, it's that it isn't possible for me to have a job, to jump into my car, drive home, leap into the bath, get out of the bath and iron my favourite clothing, then drive over to my friend's house to go to a disco and have a few drinks. Because none of these can I do by myself. I've got to wait an hour for the local bus and in this country we're dependent on the worst public transport in Europe. I don't have a job because people are frightened to employ me and yet I've proven I can work by the charity work I'm doing, even only to myself.

So I don't have a job, I can't drive, I don't know how much alcohol I can safely take with the tablets I'm on at the moment, mainly because one doctor was a bit wary a while ago of telling me what to take so I just thought it was safer not to use alcohol. And now I've been without alcohol for so long I think if I did have a drink it would go straight to my head, so it's probably not worth the risk. You know I can't drive home, I can't do the ironing by myself, it's only sensible to make sure there's another adult around when I get into a bath, so most of the time its quick strip washes with several bowlful's of water if I'm alone. It's this sort of minor restriction that is irritable to somebody who has epilepsy but not even thought of by someone who doesn't because it is comparatively trivial. But when it happens day after day after day that trivia tends to waste away and it becomes sometimes a nuisance and sometimes a big irritation.

Explains the risks involved if she works, and suggests that benefits should go towards future...

Nevertheless I'm still scared to do so [take up paid employment] because if I stop the benefits I'm receiving now, go and do a job and I fail, if I can't keep up with my employer's requirements, I've lost everything. I've got to go through the humiliation of trying to explain to somebody yes I do need those benefits, yes I am disabled, and it gets harder and harder to do that at the moment, benefits are harder and harder to receive. So it's a bit of a risk me even taking that. 

I wish there were some kind of system whereby someone, there must be thousands like me, if I lived an intelligent life now I can do what the government wants me to do, I could save what money I've got and use it in my old age. There must be some way of covering that gap whereby it all falls through when you get '8000 and use it all. I feel like I'm living too high a life now.  You know I could buy expensive food, I can use taxis, I can go out to pay for entertainment, I would rather use that money for my old age, for my medical security but nobody minds if I spend it on cigarettes, alcohol or whatever. And that doesn't seem right! (laughs) 

I would be quite happy if the state for example built up some kind of token scheme where I'm not spending the money, I'm not having to have savings but I've got that insurance there for the future and I don't think it would be too difficult to build up a certain token scheme whereby at the end of the week I could use what money I've got to buy however many state tokens I want that could be used for health and health only or for housing and housing only.