Interview EP23

Age at interview: 46

Age at diagnosis: 15

Brief Outline: Diagnosed with epilepsy in 1971, which has been well controlled from the beginning. Was diagnosed with meningitis in 1994 and had a number of seizures as a result. Has been seizure free since then, and is currently taking phenobarbitone (Gardenal) and carbamazepine (Tegretol).

Background: Complementary therapist; single, no children.

Explains that the causes of her epilepsy are not an important concern to her.

Have you ever wondered, or its not been something that's been a concern? 

No, its not really been a, that much of a concern. 

Because it's been very well controlled.

Yes.

I think it may have been, I mean I've read in places that you can have a little scar tissue, I mean it might be that. I might have had a fall as a child, who knows, children tend to have falls. But no I'm not going out on a quest to find out why I developed epilepsy. 

Explains that excessive alcohol was a trigger for her seizures.

Now I went through a period between the time I was 18 and late 20s, mid to late 20s, when I had a fit on average about every year, one fit per year. And that, I look back on and well I know at the time that was connected with being a teenager, drinking too much and going out and going to discos, late nights, early mornings and drinking. And that combination, the early nights uh, the late nights, early mornings, and drinking too much, that would induce a fit. 

So whenever you kept away from alcohol you didn't have any? 

Yeah, yeah well, I mean I drink but one or two glasses of wine at a time, that's me these days! (laughs).

Recalls that her seizures were controlled as soon as drug treatment was started.

But since then I've had no fits. And this was in 1994. As I said the medication has been reduced and in fact I'm on phenobarbitone which I've been on since I was 15 and I've even reduced that, the level of that. So, I, I've never felt that epilepsy has been an issue in my life, ever. 

Did you, well you started on the phenobarbitone straight away? 

Yes, I was prescribed three drugs. Epilim, phenobarbitone and another one - which I cannot remember - but I know I was on three different drugs.    

And you went on to Tegretol later? 

Yes, I went on to Tegretol when I came to Bristol which was in er, the 19, in 1980, and the doctor at the time, because the drugs hadn't been altered, the doctor was saying to me that these drugs were more for a child than, they're, the dosage was more for a child rather than adult. But he also wanted to change the drug, particularly - I can't remember which one it was - but he wanted to change a drug and have me move on to Tegretol because he thought it was more effective. And it has been. 

Yeah, so your epilepsy has been pretty much well controlled over the years hasn't it? 

It has yes, its well controlled through me and it's well controlled, I think I've just got a very low level of epilepsy, I'm a borderline.

Mentions the benefits of aromatherapy oils, reflexology and group counselling.

So during the time that you'd had epilepsy and ovarian cancer, had you tried any complementary therapies with those conditions?

Not specifically with the epilepsy because that had been so well controlled but certainly with the ovarian cancer. I think things like oils and I did have some reflexology, even now. And also just general counselling, group therapy work.

And how did you find all of these beneficial? 

I'm a great believer in that if you're, if you're not stressed, if you're relaxed, the immune system is working more effectively and if the immune system's working more effectively then problems like cancer may never develop. Now I'm not saying won't but I'm sure that, I personally think that there's a link between emotional problems and problems that are developed in late, later on, so many years later. 

Anything you want to add in terms of the complementary therapies?

Uh, no, but I do think, not, I do think that using essential oils at a low level for massage can help, can be very relaxing. And also having reflexology as a form of treatment. But there are lots of other therapies out there that I'm sure help with epilepsy and cancer and meningitis just as much.

Recalls making changes to her drugs in order to be on a lower dose.

And then unfortunately though the chemotherapy affected my immune system, I went into hospital because I had meningitis and resulting from that I had a number of fits in hospital. This was in 1994. So they altered the treatment I was on, and they altered the dosage quite radically. And when I left hospital in 1994 I was on a much higher dose 

of Tegretol, I was on Tegretol and Phenobarbitone by then. 

And I, I was, well I noticed the side effects, blurred vision, sleepiness, very, very tired. And I said to the consultant that I needed to come down a level. I was on 1,000 milligrams, I had been on 400 milligrams prior to the meningitis and then I was on 1,000 milligrams after the meningitis.

...And I started to reduce the levels and then the consultant or senior registrar agreed that I would be fine with reduced levels.  And I just slowly recovered uh, reduced them and they're back to the level that they were ten years ago. 

And you're not having any seizures now? 

No.