Interview EP08

Age at interview: 26

Age at diagnosis: 18

Brief Outline: Diagnosed with epilepsy in 1994, caused by a benign tumour that was found in 2001. At the time of interview, brain surgery was a possibility and would depend on test results. Current medication' carbamazepine retard (Tegretol Retard) and lamotrigine (Lamictal).

Background: Temping in office admin posts; single, no children.

Discusses how he felt after leaving the hospital, support from others and having a sense of humour.

From the point when it was diagnosed, I remember laughing about it. But when you have the opportunity to actually sit down and realise that you fall into the category of being disabled, slowly your smile wears off. You realise that there will be new challenges, people will perceive you in a different way.

But there are emotional spells, you have your ups and downs. You aim to control those but I am just so grateful that I've a supportive family and supportive friends who take a great interest in the problem itself and my progress.  

...Provided you inform people, the sensation of the experience when you have an attack and what they should expect if and when you do have an attack, it generally tends to help. You have to have a sense of humour so despite the fact that they are sympathetic, they can't really appreciate what you're going through. It does help a great deal and its not always the case, that you do have an attack in someone else's presence.  

Explains that certain food additives and exercise can trigger his seizures.

I always look for particular links prior to ever taking the medication. About a year ago I noticed there was a definite link between food colourings and also particular ingredients within medication. For instance there was a, there was a medication called Amoxicillin and that has specific food colourings in it. 

So did you make this link yourself or did?

I did, that's right. I've always had to report back to the actual consultant, I did make this link, I pursued this particular link, read into it and  because I've noticed there's a pattern, there was a specific correlation that when I'd eat particular foods, I thought that I just had a reaction to these particular additives. And I'd say that without the medication that I would continue to have these attacks. And as a consequence I can still carry on eating the same foods because the medication controls it these days. However, I do avoid amoxicillin as medication. And I just wonder if anyone else has had the same experience.    

Have you ever tried any complementary therapies or alternative treatments?

No, no. I've always been one for exercise, I thought that exercise would say prevent attacks if anything, but it has interfered to a point, not really with say strength training but with the aerobic training such as running and rowing in particular I've experienced problems say towards the end of my, my workout or the activity. So its, its quite de-motivating. You hope the exercise will actually improve your motivation. However, when you have attacks whilst exercising, it can damage your enthusiasm. 

Discusses the effects of work on seizures as well as on his confidence.

It certainly does damage your confidence, particularly at work. However, I'm looking at alternative employment, working for myself perhaps. There's work which I've originally been interested in which I know would perhaps you know increase the likelihood of attacks, so I know now that I need to try and find something which if possible is more relaxed. Although I'm prepared to actually work at anything, just work hard, I do need to just consider the fact that any stressful job will actually bring on attacks and I've experienced that this week, one intense day, where so much was expected of me resulted in an attack that evening. 
 

His epilepsy affects the work he can do and his finances.

Have there been any financial limitations because of the epilepsy?

I feel that there has been, without a doubt. The job that I've been doing previously, and the choice of jobs, a) because of the limitation on the type of jobs you can do and b) the change in your ability to deliver yourself, say when we talked about sentencing [problems with speech and remembering words]. I feel that that does actually interfere and it would actually hinder my progression in the job that I would hope to do, or had hoped to do in the past. The job that I've been doing recently wasn't the most financially rewarding, so although there have been other jobs that I could have done which would have paid more, I did feel that there was a direct link in the job that I went on to do following my diagnosis and the salary I received.

Discusses how family and friends support him.

They're [family] really keen to help me in any way they can, they're just extremely supportive and I am just so grateful. And I just hope that any other people in a similar situation have the same support that I do. It's just so important they actually have someone to turn to, whether it's friends or other sufferers or specialists. 

You mentioned that your family have been interested in finding out more about epilepsy and they've always been quite supportive. Have you found friends to be supportive as well or has it varied? 

I have yes, the majority of them are compassionate. But, like I said before, you do need a sense of humour. It could be they mock particular things but both of you know it's a serious issue and they're aware. The effect it has actually had or does actually have. They're aware that in a social sense you find the attacks embarrassing. So, you know, they are certainly compassionate. Some people are interested as well in finding out about the experience, exactly what happens to you, but I've found yeah the majority of people to be very compassionate, which has helped a great deal.

Discusses the need to make some changes but to remain focused and pursue new interests.

I think just to appreciate that it's not the end of the world, you know your life does go on. There will be changes to your life, there will be minor changes. I think that's dependent on your type of epilepsy but provided your friends and your family are understanding and you explain to people without keeping it bottled up, your side effects and your feelings, then there's no reason why you can't progress with your future, I live my life. I feel that I've progressed and succeeded academically, the epilepsy hasn't necessarily interfered with this. I lead a healthy life style and it doesn't interfere with your health in that sense. You can pursue other things. I'm continuing to pursue new interests, alternative interests. Just remain focused, just maintain your focus upon the objectives you had prior to your diagnosis. There will be changes physically, mentally, just continue to remain balanced and career focused.