Interview EP09

Age at interview: 33

Age at diagnosis: 21

Brief Outline: Diagnosed with epilepsy in 1990. Tried various drugs which did not control seizures. Had neurosurgery in 1998 in the USA. Experienced having seizures for 2 years after the surgery, but has been seizure free since November 2000. Current medication' carbamazepine retard (Tegretol Retard).

Background: Deputy manager in an off-licence; single, no children.

Discusses how her epilepsy affected her work and independence.

I saw about two or three doctors and they all sort of kept changing saying "Well let's just increase it [the drugs]," and it was just ruling my life. I couldn't, I didn't have the independence that I was used to doing, because I was driving just before that happened, so I was having to stay at home most of the time. My confidence had gone out the window with doing anything. I lost one job because of having this medical problem but I managed to get another one with the help of a friend of mine, she was working in a business.

...So most of the time I wasn't  going out, I was losing my independence, depending to be taken door to door by you know cars, my parents or my brother would take me. It is really since I'm no longer having them [seizures] I've got more independence. I suppose I'm lucky with getting the travel pass as well, which it's easier for the over 60s to get it but if you have a medical condition you can also apply for the travel pass as well, which enables you to go from door to door on your own which makes you feel a bit stronger.

Explains why she had surgery in the USA rather than in the UK and her feelings before the operation.

I was getting nowhere with the doctors in this country. They just kept saying medication and that's it. And because it was ruling my life I wanted to go on and be able to do things with it, and so I was lucky that I could go and do it elsewhere. 

I was frightened going in for major surgery. But the doctors and the nurses made me feel comfortable. They kept you know coming to see me two or three times a day, so that was the nurses, the doctors I saw once or twice a day. If I had any questions I wanted to ask him, the nurses would contact him and he'd be down like a shot. Which made me feel more and more at ease with what I was going through. The day of the surgery I went actually deathly white, mum thought oh God now what's happening. But gradually I got to thinking things will, I'm going to expect in the future, not what I've been through now.  It was frightening for myself and my parents who were there ready to support me. It was just nice having people round you when you came out of the surgery, you felt more at ease.  

Explains that she became seizure free two years after surgery and why she does not want to stop taking medication.

Well I kept having seizures until sort of November, the year 2000, that's when they finally decided to calm down a little. In November I had like two seizures on one day and then I've been seizure free since then. So it's been four years since I had the surgery. But two years seizure free since then. I had been told it would take a while for the system to calm down, but you can never understand what doctors say. 

Yes and are you on medication now?

I'm just on the Tegretol Retard, I was on others but my doctor I see in this country had just said "Let's leave it on the Tegretol and see what happens." I'm not on a high dosage but if I want to ever reduce it I can do. He's left it up to me to making that decision. 

And do you think you'll reduce it over time? 

May be over time or may be I'll just stay put like it is because I feel happy with it, because you can get very stressed out changing your medication dosage, everything about it.

I'm still on medication, I'm not going to come off it because it frightens me the minute I stop medication that I'll have a major seizure. And the doctor that I see he's willing to leave me on the medication for as long as I want to. I could decrease it if I want to, but I can get my independence with driving round if I want to. And I'm feeling stronger in myself. 
 

Explains that she is slowly regaining more of her memory after having surgery.

Okay I lost a bit of memory after the operation, gradually I'm getting sort of memory back. I can remember things of when I was a child more than I can say yesterday, but because I'm not having the seizures so much now I've got more of the memory back there. But they say we can always go through further tests to see how much memory loss you have. But I think I'll just leave it and let it calm down on its own.

...I had problems with the speech which I'd been warned about and memory which they did tests on, they said it will take time for it to calm down. I'm certainly seeing more now, I can remember things of when I was two, three years old more than I can the things yesterday. But it doesn't bother me, it's nice to think of things when you're that size. 

Explains that epilepsy can be frightening to people who do not know much about it.

It's difficult to know whether you should tell people, especially with the kind of seizures I had. I could be standing talking with a customer or a member of a support, you know people and just black out for a minute, you think what's that going to cause.  It varies what kind of sort of job you're doing. I mean the first group, first job that I had I was in a leisure centre. They made me feel I was the wrong person there. I had somebody, one of my bosses watching me every time I was in the building which made me very edgy. So I stuck it out for about three or four months and then I gave up, I thought I can't do this. So she got what she wanted was for me to leave. But this second job that I managed to get, he was frightened with me having the seizures because he'd never actually seen them before but gradually he accepted them. He made me feel welcome. 

Explains that she has always worked and her epilepsy has not affected her financially.

In terms of, for example work, have there been any financial implications because of having epilepsy or not in your case?

I've just been sort of working, I stopped for a couple of months, then I got into working and I've been working since. Some people no they give up working, it depends on the person, whether you can get help from the Council that way. But I have worked actually all the way through my condition and I'm glad I have. But other people they think no they can't, it depends on whether their seizures are controlled by medication or what.

Praises the support she received from counsellors.

How did the counsellors help?

It was nice to be able to bring out all your problems with somebody out of your house. You know you can talk to a limit with your parents, who don't really know about it. The counsellors are different people again. I think I'm lucky with the Support Group Leader that we go to, she's a counsellor but she doesn't specialise in this medical condition, but she knows how to talk to people, she makes you feel welcome.

Advises seeking information about epilepsy and learning more about the condition.

It's always useful for doctors to get to know what your sort of patterns are for your seizures. A way is to carry around a diary where you can write down if you're having a mixture of the seizures, say the complex partial or the grand mal you have, put into your diary, a pattern. When sort of say the time of the month or when they should be happening. And another good thing to carry around is an ID card where if you're out on your own and you have a seizure, you can sort of produce this card and people relax, they know who to contact then. 

Is there anything else that you want to add at the moment?  What advice or message would you give to someone who's been newly diagnosed, from your experiences? 

If a person has been newly diagnosed I'd pick up information from the National Society or the British Society, whichever you feel at ease with, or both of them. And then when you're seeing your doctor you can sort of ask his advice on what to do next.  But with the Societies you can get information about groups to help you understand the condition more.