Interview EP21

Age at interview: 45

Age at diagnosis: 26

Brief Outline: Diagnosed with epilepsy in 1984, although had the condition throughout childhood as well. Has been seizure free since 1986, though had a status epilepticus episode in 1999 when medication was missed. Current medication' carbamazepine retard (Tegretol Retard) and clobazam (Frisium).

Background: Quality assurance manager; married, 2 children.

Discusses some of the difficulties with diagnosing epilepsy.

Yes, that was, it was one of those things where with epilepsy the most important aspect or the first things that neurologists have to do is um, diagnose you, diagnose the exact type of epilepsy you have. When there's about forty different types of seizure, its obviously a very difficult condition to diagnose because unless you have a witness then the problem is that most patients who go to their doctors expect to know what they've got, what to have for it and how long its going to take to get rid of it. Unless the doctor actually or there's a witness there, then the diagnosis stage can be a long drawn out process in itself. That's one of the biggest problems with the condition, the fact that it does take a long time with some people to diagnose exactly what form they have. 

So really in the future, in the next five or ten years, there has got to be a push of not only more neurologists available but also help from people like nursing staff.

Explains that his brother had epilepsy, and how he felt calm when he was later diagnosed...

Um, it was interesting from, in my experience because at the time my brother also had epilepsy itself, so during the next few months I was very fortunate in that I didn't have to go through the usual stigma phase that a lot of patients go through. When people usually get diagnosed with epilepsy, unless they know someone with the condition, then their usual questions are 'Why me?'  They can be very frightened, withdrawn etc. 

But when you know someone so close that you've known so long then you, I also as I said earlier thought I may have the condition, then it didn't come as all that much of a surprise to me. So even my doctor, when he spoke to me about it, said I was quite laid back about it. I said all I know now is the name so what's the problem. And he was quite surprised, which I presume would be quite normal really because a lot of people do get quite upset, which I've actually seen myself.

So you didn't feel upset in any way or disappointed in any way? 

Not at all because I realised immediately that I'd gone throughout my life until the age of 26 having epilepsy but it hadn't affected me in any shape or form because of the seizures being so mild. After then I was obviously diagnosed. 
 

Explains that his epilepsy might have been caused by febrile convulsions but that this has never...

Have you wondered about the causes of your epilepsy?

That's an interesting question because when, when I was diagnosed and one of the reasons why I had this inkling that I may have had epilepsy was because I had febrile convulsions as a baby, when I was about 18 months old. And its not very common but it can act as a trigger towards future epilepsy. So when I was diagnosed at 26 and realising that these strange little ten second feelings, these sensations were actually simple partial seizures, and I realised it was probably from the febriles, from the febrile convulsions that they may have been caused from that or started then. I did ask a neurologist about it once, one of the top neurologists in the country, and they said that its, its not necessarily true that one will start the other, it may be a gradual process, and it just happens to be that some people develop the type of epilepsy from having febrile convulsions as a child. 

Discusses the drug treatments that led to control of his seizures.

That's one of the biggest problems with the condition, the fact that it does take a long time with some people to diagnose exactly what form they have. But for eighteen months I was put on a combination of carbamazepine and phenytoin to the extent where I got up to very, very high levels and it wasn't getting rid of the simple partial seizures, although I never had another tonic-clonic. And the problem is that I went through the usual problems that most people face in that the higher the drug dosage then the more it affects the quality of life,  making me extremely tired, so I then went back to my neurologist who changed my medication, changed it on to a drug called clobazam and mixed that with Tegretol, and that worked fine. It was very fortunate that it worked, there are many people I do know who have gone throughout many years of their life trying different combinations and they're still struggling for the quality of life and they're still having the seizures. So I was very fortunate.

Explains how missing one tablet led to a status epilepticus episode.

I'd taken my early morning tablets extremely early that morning, at five. Forgot the midday medication so by the time I was driving home at six o'clock that night, I'd gone thirteen hours without drugs. And I was in the car and I gradually started to lose consciousness while I was behind the wheel. 

The aura that I had, because you're not thinking logically, lasted I would say for the equivalent of driving about eight miles. And I was just getting tireder and more tired behind the wheel, and I realised after swerving the car several times - fortunately not hitting anybody or anything - I knew I had to stop the car. Fortunately a lay-by was close so I managed to get into the lay-by, and it was like your defences go down as soon as the hand brake's put on. The last thing I remember is somebody opening the car door and saying 'Have you been drinking mate?' And the next thing I knew I woke up in hospital late that night, sort of one in the morning, and I'd gone into something they call status epilepticus which lasted forty-five minutes.  Which in my case lasted that long and its basically something where you have to have medical attention. 

In hospital they kept me in for three days under observation and the good thing was, from my point of view is that I knew the reason why I had the seizure.  

It was purely missing the medication and its something that is, its something that angers me a little bit when people just say you mustn't forget your tablets. They don't tell you why, they should tell you why. 

Explains why he is wary of coming off medication.

Would you, if you've been seizure free for a long time would you ever consider stopping your medication or would you feel much more confident continuing to take your medication? 

I don't think I would take, I don't think I would take the risk. I do know some people who, and I know the statistics that some people do after a certain number of years decide to reduce their medication. I can understand why, but from the point of view of driving I, because I'm fortunate enough to be on a mild dosage of both drugs and because my quality of life isn't really that affected, I wouldn't take the risk at all because a) of driving and b) of bringing it back again. I'm very fortunate in that respect. 

Explains that he left decisions about drug treatments to his doctor.

Did you feel that you had much choice in terms of the medications that you tried out or did you leave that mostly to your neurologist and GP?

At the time it was, as I say, in the mid '80s I left it totally to my neurologist. Looking back on it now, now I've studied the condition quite a bit, yes I probably would have something to do with the choice of medication, but, but at that time it was one of those things where the neurologist changed me from one to another and I accepted totally what they said. Fortunately it worked.

Discusses the need for more information on and research into SUDEP.

Sadly in the mid '90s my brother died from epilepsy, from SUDEP. I was fully controlled then and driving and that was quite a shock because I'd, although I'd heard of the word SUDEP, it's one of those things where a) you think it never happens to yourself or anyone you know or it hadn't, it wasn't talked about much anyway. 

Looking back on it now, even though the recent audit has shown that a certain amount of people can die from the condition if they're not controlled, I still think that compliance with medication and lifestyle and quality of life, if they are looked after more, if the patient actually takes a bit more notice and the doctors work in unison with them, there's less chance of them actually dying from this condition.

Are there any questions that you have about SUDEP that you feel have never been answered or? 

I think the recent audit showed more the actual numbers of people who have died from the, from that part of the condition.  There is still a long, there's still a lot of research to go on because they're still not sure even nowadays whether it causes the heart to collapse, sorry the, they're still not sure even today whether its to do with it causing the breathing to stop, whether it's the heart or whatever. A  lot, lot of clinical research has to take place to actually find out the reason why a perfectly healthy person can actually die from the condition in terms of SUDEP itself, definitely. 

In terms of SUDEP I think I would agree with the 'Epilepsy Bereaved' charity where the subject obviously has to be handled in a very sensitive manner.  I think with people who have uncontrolled epilepsy and they've been uncontrolled for a long time, I think they ought to be told about SUDEP, most definitely. One of the things that's, that's been spoken about on the radio and in the audit recently that was published, is that very few people were told about that it can happen and one of the most common reactions from bereaved relatives is 'why weren't we told about it?'  

Discusses his interest in promoting public awareness of epilepsy.

What did you explore in your dissertation?  What kinds of things?

The raising of public awareness, how much people know, how much they don't know, the way [my brother] and I reacted to epilepsy in different ways, mainly due to the different ways we came across it. As I say, I had a tremendous advantage in knowing about the condition when I was diagnosed, which I do think makes a vast difference.  

I think one of the most important aspects is getting knowledge across to the general public so that that in turn will affect the way in which people with epilepsy are actually treated by, whether it's employers, whether it's people in general, and I do feel that the vast majority sometimes rely on the organisations too much. I don't think the organisations are big enough and strong enough to actually be able to tap in to the whole of the general public. They haven't got the resources, they haven't got the famous person behind them at the moment for instance. They haven't got an Ian Botham or an Elton John or someone like that at the moment, I hope they get somebody pretty famous to actually talk about the condition in a more open way, and that's why I feel that people with epilepsy have got to be encouraged to talk more openly about their condition. Because unless they do that, then I don't think the understanding of the condition will ever be achieved.

Explains that his epilepsy has not led to any discrimination.

I haven't yet come across anybody showing any discrimination against me. My wife said an interesting point to me a while ago' 'I wonder what people's attitude would be like if they actually saw you having a seizure?' Which was quite an interesting point, but no I haven't had any problems with people at all. Maybe its because I'm quite open about it and relaxed, then that certainly helps when you bring the subject up, and its quite interesting dropping the subject into a conversation to watch people's reactions, its very interesting.

Because of the stigma subject, the first thing I did actually when I was diagnosed was I actually went round everybody at work and actually told them about it. I wanted them to know what to do if I had another seizure. I certainly wasn't frightened of telling people because at the end of the day it was in my interest, its one of those things where you want people to know what to do. The people who I work with are professional people, they are not people who would, who I would think would be critical of people just because of a certain type of health. They were very supportive, very supportive indeed.

Discusses the support he received from colleagues, and the ways employers can discriminate...

In terms of work, I don't think it's really affected me. I was, the second company I worked for which I'm presently employed by now, it wasn't even an issue when they approached me, which was great that a few of the people who worked there knew that I had epilepsy and it wasn't something that was questioned. The company car was part of the package and that was it. They knew I had a driving licence, so the question of epilepsy never came even into it 

So again, even when I had the status seizure, the company's attitude was extremely positive, so much so that when I had to take a year out of driving and living twenty miles from work, they felt it was their responsibility to get me to work, which is a pretty amazing attitude. Now I did, one of the colleagues helped me and there wasn't really a problem. But their attitude still was even if, even if I was, they would let me work from home for two or three days a week, set me up with a laptop computer.  And even to the point where a couple of the lads from work would come and get me from the garage themselves as part of the company that I worked for, and come and pick me up in the morning and get me to work.

That's fantastic.

Their approach was extremely good. But a lot of people were quite surprised by that and they said most employers wouldn't be like that, which is actually true. Most people wouldn't be like that, but I find that kind of attitude quite interesting when I remind, I do contradict them slightly when I say to them well if you add up the number of days lost in the workplace from conditions such as if people drink too much and things like that, then that is far higher than people who have epilepsy and have recurrent seizures. The important point is that people with say a drink problem or anything like that, a lot of the time stand a lot more chance of getting the job in the first place which comes down to the discrimination side, which is obviously very unfair. 

Discusses his brother's death from SUDEP.

In terms of  SUDEP I first came across it when my brother sadly died in 1995 from it. First time I'd seen it actually published was in 1997/'98 when I realised it was actually SUDEP that [my brother] had died from.

He'd had the condition since the early '70s and I think that one of the main questions that people ask me is 'Do you think it would have made a difference to him if he'd know about it?' My comment to that would be, because he was a very strong character, that if I'd gone to him in 1994 and said 'Do you know about this thing called SUDEP and it says, as the epilepsy charity states, better control means you know there's less chance of you dying from the condition.' I think his answer to that probably have been 'Well I've had it this long, i.e., 20 years, the chances of it happening to me now would be virtually non existent.'

How old was he?  

[My brother] was 41 when he actually died, he developed the condition after an accident as I say in the early '70s, so he was in his first or second year at university.

Highlights the need for more epilepsy specialists, and the importance of talking about the...

So really in the future, in the next five or ten years, there has got to be a push of not only more neurologists available but also help from people like nursing staff. And they must, I think we ought to go really towards having more talk about the psycho-social side of epilepsy, how it affects people on a day to day basis rather than just clinical diagnosis and talking about the stigma effects and things like that. I think more, I think more advice ought to be given on how to run your life with the condition as opposed to the outdated sort of perceptions that people have.