Alistair - Interview 14

Age at interview: 18

Age at diagnosis: 16

Brief Outline: Alistair has temporal lobe epilepsy and is on lamotrogine 200 mgs twice a day. He hasn't had a seizure for a year.

Background: Alistair is 18 and works as fulltime administrator. He is single and lives at home with his parents. Ethnic background / nationality' White British.

More about me...

Alistair is 18 and works full-time as a health care assistant. At 15 he started having blackouts and his GP referred him to a neurologist who diagnosed temporal lobe epilepsy at the age of 16. He's had both tonic clonic and absence seizures. 

Epilepsy affected him in school and he even had a seizure during his mock GCSE exam. Also, aggression was a side effect from his medication which caused problems in school; some people would wind him up about his epilepsy. School offered him help to manage his anger and frustrations which really helped Alistair. The next medication caused him to lose weight very rapidly so he was taken off that. Now he is on lamotrogine 200 mg twice a day and at the moment seizures are well controlled.

Alistair wanted to join the RAF, armed forces or the ambulance service but had to give up these plans because of his epilepsy. At first, it got to him but then he realised he could still do similar things, and achieve his goals, by being a paramedic or a nurse. He joined St John Ambulance charity as a volunteer, and is also in the scouts which he enjoys. Alistair used to play rugby for a local club but after being diagnosed, and having a few knocks on his head which triggered a seizure, he decided to stop playing.

He's had a few seizures in public places when on his own and now always wears medical tags with his personal and medical details. He emphasises how useful these are for people with epilepsy. For example, he once had a seizure when ice-skating on his own and his parents could be contacted through the contact details on his tags.

The year before the interview Alistair had gone 50 weeks without a seizure. He was just coming up to getting his driving licence but just 2 weeks before he had a seizure. At the time of the interview, Alistair had gone another 50 weeks without a seizure and was counting the days! Alistair he says he takes things day by day' “a step at a time and try not get too stressed out”.

Alistair felt aggressive and had a 'short fuse' when he started his medication. He went to anger...

The first medication I was on was Tegretol Retard (carbamazepine). This medication was alright but I was on a very small dosage of it. I took it on a regular basis and it was making me very aggressive, but the next time I went to see the consultant, he decided to move me. Well, first of all he decided to put up the dosage so I was on 50 mg twice daily, but then still wasn't working. I was then moved on from that medication to another medication. This medication made me lose quite a bit of weight. Now I am on the third medication which is lamotrogine 200 mg twice daily. But I've been told by the consultant and the epilepsy nurse that later on in life if I feel I want to put the dosage up just let them know and then, because at the moment I think I am only on 400 mg a day but that can go up to a total of 800.

Yeah. Can you tell me more about the aggression that you experienced with Tegretol, what was that like?

Yeah, the school was getting worried because me temper was getting very bad. But after sitting down, and letters being wrote to the school by the GP, saying that after new research the side-effects for the medication can be aggression. At school it did bother me, because people found out that I were epileptic and they were winding me up when I wasn't able to like let it go past me. And it did cause a few troubles. But school were aware of that and the appropriate people were informed in case anything did happen. Otherwise I'm on new set of medication, on lamotrogine it doesn't bother me.

So would you sort of get into fights with people or be easily irritable?

A few times if anyone had touched me or anything it would wind me up very easily, or at school called it a short fuse. That's what they said I had. But no, times have gone on and I've got over that. It's a matter of being mature as well. But school thought 'oh he could be bit immature', but then after realising it was medication problem then that's what they put it down to.

Yes. And how was the school in supporting you with having epilepsy?

They set up an anger management class. I had to do anger management with a special teacher what was able to sit down for an hour or two every week. We used to sit down and talk about things. We did a diary of what I was eating on a daily basis. The school thought it could be something that I'm eating at school. Or see what lessons, see if there was chain line. If it was certain lessons that were causing seizures, stress at school that was another big thing. If I were going through quite a bit of stress with teachers and lessons and subjects, I was worried about me exams but I was all right. But going to anger management through school was pretty helpful. And if I require that now I've been told I can contact the epilepsy nurse, she can organise classes for me whenever.

Alistair had wanted to join the armed forces or the ambulance service but had to give that up...

Well the RAF and Army. I was looking at joining them, but if you are epileptic you can't join them. I was looking at joining the ambulance service. But you've got to be able to drive, but then again though later on in life I'm able to, I may be able to do that. There's no point worrying about it about the moment. But instead of doing like ambulance service, you've gotta be able to drive, I looked to doing nursing straight away. It was something that you know caught me eye as well. Driving is not needed. But I don't think, in some jobs, I don't understand that being epileptic can affect your actual jobs. But then in some jobs I don't think they can say, oh you're epileptic then you can't have the job. So far the ones that I've applied for I've wrote down on the application that I've got epilepsy and they have been okay in the last two jobs. But obviously in the Army and the Navy, the Army and the RAF I was taken off the list straight away.

How do you feel about that?

It did upset me a little bit. Because I thought I want to work in the Army, follow me uncle's steps but like I say I got over it. I looked into it more and I thought I could do this job instead. Instead of going into Army to be a nurse or to be a paramedic I can do it in the local hospital. So that has been okay. But sometimes when I do look back I think oh I could be doing this job if I didn't have epilepsy, so but otherwise now I've got over it. I've got more targets to do.

And maybe something kind of in a similar area you can do.

Yeah, same job. You might see more people working in hospital than working in Army. You might be meeting different people each day.
 

Alistair takes it slow with alcohol and sometimes just has soft drinks on a night out with mates.

The consultant said, and nurse, you can drink but you need to make sure that you know your limits. You see people on medication and having a drink at same time, it don't go together. A couple of times I've, you know, had one too many to drink luckily it hasn't bothered me. You know, at one point I did have a panic attack and people thought it was a seizure but luckily it was a panic attack and not a seizure. But I would recommend people to make sure that they know their limits. Because you don't want to have too much drink and then, it can of course affect your medication. So my social life hasn't really bothered me with going out with friends for a drink.

So you can go to the pub?

I just tend to, you know, take it slow. There's no need. Sometimes I can go out and not have a drink. I don't think you need to have a drink to go out, you can just enjoy yourself as much. People just think that it's something that comes to mind, having a drink, but with me it don't really bother me, I could go out and have a glass of coke at night and still enjoy the night. And social life otherwise has been okay.

Do you find ever difficult not to have a drink, do you feel like there is a bit of pressure?

I think there is a bit of pressure when you go out with your friends and they are stood around you and you can smell alcohol and you think oh I wish I could have one. So a few times I've had one but when they've started to have a few many, that's when I look at it and think should I or shouldn't I and I've actually stopped myself sometimes from having a drink. So it's down to the individual. Do they want to have one more drink and affect them. Touch wood I've always thought on bright side and not had an extra drink.

Alistair has been counting the weeks before he can drive again. The previous year, he was seizure...

When I turned 17 straight away able to drive, legal age for driving. I knew I couldn't drive straight away then because I'd had a seizure not lot before. And then, going on 50 weeks clear, thinking that I'll apply for my license. I thought, just around the corner, I just had two weeks to go and I can start driving and then a pretty serious situation happened, ended having a seizure and it did upset me. Then I had to wait another year. But now time is going on. Two more weeks to go, fingers crossed, as long as I take my medication and things like that. Not let things get on top of me, try not to get too stressed out. And just think about what caused them in past. Like stress was main one so I've got work and I've taken it easy, and make sure me tablets are taken on time. And touch wood me license will come through the door one day soon.

Alistair has always made it clear in job applications that he has epilepsy. He says it's...

On all the application forms I've filled in, I've made it clear and informed them what the actual situation is like. When I first started a job I was, I informed I was having them on a regular basis and they were aware of that. I don't think it's good not putting it on, in case I've one at work and they don't know what's going on. So I gave them all the family details and what to do in case of emergency. I think that everyone should do that instead of hiding it. Because at the end of the day employment can't discriminate against disabilities like that.

Alistair said his diagnosis was 'a shock to the system' but processing it over time with family...

But the GP did say it could be epilepsy, but he didn't actually specialise in that until I went to see the consultant and I was told that it was epilepsy. It was a shock to me system but I was expecting it. It wasn't as if I went in one day and he said you are epileptic. You know it was over a gradual period. Family had been able to support me as well. Family has helped me through it so far.

Do you remember more about those feelings at that time when you got diagnosed. You said it was a shock to the system?

Yes. When I was first found out. I didn't know what to do. I thought if I go out with me friends, what happens if I've one. So I thought straight away what do I do. So I told friends. Friends were informed straight away. I sat down and had a talk with them, the same with school. They were informed straight away. And it were, like I say it was shock to my system, but over a period of time it did come out of my mind. Some days I would forget that I had got epilepsy and then some days, like now, time is getting on because of being able to drive and I sit there thinking sometimes in work just thinking what happens, just making sure that me tablets are taken on time.

Alistair's teachers were helpful and knew what to do if he had a seizure at school. They also...

Teachers were aware, posters were up in staff room for teachers with a photograph of myself saying that I've epilepsy and cards, teachers were given cards of what to do in a first aid situation. Because we only had a couple of main first aiders who were in the school, but teachers were informed and told what to do in case of a seizure was to happen in class. And they understood that if I ever wanted to leave class I could do it at any time. And the teachers were very helpful. And some of my good friends at school, they were as well. But otherwise it was okay at school. And I would say thank you to them again.

You said you experienced some seizures in class? What would happen?

When I was at school mainly the main seizures I were having were just normal blackouts. I tend to be in a world of my own. The teacher would notice this straight away as they would say that I was a main student in class. The teacher always noticed that I were doing good work. So they would notice it if I was going downhill. So the teacher did actually realise that I was having seizures. I was always sat with friends during class. And none of my blackouts were falling onto table, falling forward. Luckily I wasn't have seizures where jerking of the body was happening. That was lucky. In some subjects I were told just to take it easy. Like science. If I'm holding chemicals in me hand, you know, just to be careful. So I had a member of staff with me most times in science and lessons like that.

Alistair got a lot of information from epilepsy charities' websites and explains why he prefers...

I did actually look on the internet. I thought it's easy, instead of reading a book, if there's quick bullet points that could tell me straight away. Because I think sitting there reading a booklet everything might not sink in. Whereas if you go in there and find the top ten bullet points, websites can be good. And I did. I went on the Epilepsy Action, organisations that help with epilepsy were useful sites. I became a member of one of them and every so often information leaflets, new updates and stuff sent out to me. So and that can be a good source for information.

Do you feel now that you have enough information about epilepsy?

I don't think you'll ever have enough information. I think you can get more than one information weekly, daily, stuff like that. So every so often I tend to go on websites and read me books more. See if I find out any different. Information does get passed on to friends and so they find out what epilepsy is as well.