Interview EP24

Age at interview: 28

Age at diagnosis: 19

Brief Outline:

Diagnosed with epilepsy in 1993. Has tried various different drug treatments, and has been seizure free for a year. Current medication' vigabatrin (Sabril), lamotrigine (Lamictal) and levetiracetam (Keppra).

Background:

Project manager; married, no children.

Explains that she was diagnosed with epilepsy as a young adult.

When I first starting noticing symptoms I got, I was 19 and at university. It was my, it was my first year at university, I had gone to university in the country. 

In which country? 

Back in Australia, to a country university. And I started noticing that I had extreme symptoms of what I recognised at the time to be d'j' vu, it felt like d'j' vu but it wasn't just, 'oh I think that's happened to me before or I feel like this is a moment I've had before', it was so strong that it almost lifted me out of the world and sort of stopped me in my tracks. Because I had such a sensation that I was hearing something that I'd heard before or seeing something that I'd heard before, or seeing something that I'd seen before like that. 

...So anyway the GP said 'Yes you're stressed,' and I went away and thought well I'd better not be so stressed and three days later while I was at a friend's house I actually had the extreme d'j' vu while I was on the front lawn. It was as if things turned blue, I don't know if that, its really difficult to describe but my vision sort of changed and I had that extreme sensation. And then I went back inside and I had my first seizure which was described to me by the people around me that I sort of, I turned blue and convulsed slightly and was unconscious.

And they called an ambulance, they were all in a very huge panic and I woke up while they were calling the ambulance so it couldn't have been a very long time that I was unconscious for. And then an ambulance turned up, they took me up to hospital and there, I mean I spoke with them about the symptoms and things like that while I was up there.

Recalls the medical history she had as part of her diagnosis.

And its actually, thinking back on it, its not that bad a system because what the registrar did was take a really, really comprehensive medical history and they did all that leg work that the, you know that the overseeing doctor would have ordinarily had to spend his time doing. And you know she was, she was really good, she was really thorough. I just didn't realise how much I didn't know about.

What kind of questions did she ask?

She went through the history you know, 'When did it start?' 'How did you feel?' 'Did you have this kind of symptom, did you have that kind of symptom?' I've kept all my doctors' letters and things like that so I gave her all of those so she could read through the history and see what drugs I'd been taking and that sort of thing. But basically we took it step by step as we went through. I tried to remember dates and things like that as best I could but a lot of it you just, you don't remember. And it is significant when you change your medication and you probably should pay attention to when you did things and what you did, when you did them. So she actually just took a really thorough history and then she did the standard neurological tests' look at my finger here, look at my finger there, and scratch the bottom of your feet with a little sharp pointy thing (laughs). She did all of that and then left me to, she said 'Hang out here,' and she went and had ten minutes with the overseeing doctor, the overseeing specialist, and gave him the history that she'd just taken, which took her forty-five or so minutes with me. She gave that to him in ten minutes.

Explains that she would like to come off a drug because of its effects on her vision.

When I left Australia the last time I saw my neurologist I was very, very remiss in going back for my appointment, but the last time I saw him he was saying that he'd like to try and take me off the vigabatrin because 25% of people actually lose their sight in their peripheral vision and that was, you know. I was put on that five or so years ago and they didn't know that then, and they know that now. 

And yeah I had, just going back to the doctor experiences, the registrar reacted in the same way as the GP when I said 'I'm taking vigabatrin.' She said 'Oh that is not a good drug.' I have to go home and take this you know, I have to go home and keep on taking something which is making specialists and doctors go 'Oh'. So you know that reinforced the fact that I wanted to not take that drug any more. But again you know when I 

think about it. 

Are you taking it now? 

Yeah I'm in the stage at the moment that I'm in is, I'm reducing that cautiously. I've increased the lamotrigine and I'm reducing the Sabril cautiously at the moment. But they're also, where we got to with my current drugs is they, the specialist wanted to reduce the Sabril and get me off that completely, increase the lamotrigine to make sure that I was OK. 

Discusses making treatment choices and being involved in making decisions with doctors.

My main concern was that I wanted to get off the Vigabatrin because the other thing, when I went to see the GP to get some prescriptions, he said 'What drugs are you taking?' I told him and I said Vigabatrin,' and he looked at me and said' 'Oh God, are you sure you want to be taking that?' I think that was astonishing. I mean who says that to somebody? 

And yeah we just talked through what I wanted to do and what was concerning me and you know I wanted to get off the Sabril and I wanted to either you know get - my dream would be to get on to one drug' monotherapy. That would be fantastic.  Because if you want to have children you've got less risk of birth defects or anything like that. And I think its just, you don't want to be on a cocktail, if I could get on to one drug that would be super. 

'And I, you know I would say to anyone who is dealing with doctors is just know as much as you possibly can, learn as much as you possibly can, learn as much jargon as you can, learn about your drugs as much as you can and go in there and, in an appointment, be an equal with the doctor and work with them to manage your condition. And don't just allow them to talk at you, know what they're talking about. Question them rigorously on why they're choosing to do what they're choosing to do and just be, yeah be a thinking patient. I didn't start out like that, I started out just as a little you know 19 year old person who didn't know what was going on, and now I'll make them tell me exactly why they're doing what they're doing. 

Describes seeking information on epilepsy when she wanted to change drugs, and recommends...

You mentioned that you found the Internet really helpful in terms of finding information. 

Yeah. 

Did you find any information from books or leaflets at the hospital or anything else as well, or mainly the Internet? 

Mainly the Internet and also some things that the doctors gave me as well. But to my own surprise I never really started looking into it thoroughly until this year when I decided I'm gonna get off this Vigabatrin, and then I started really researching, really looking into the drugs, looking into all the drugs and reading on the Internet sites about what people's experiences were with the drugs that they'd taken. There's a lot of message boards around, associations, and just generally you know message boards about epilepsy and people saying 'Yeah I've taken this drug and this is what it did to me.'  And people asking questions' 'My doctor wants to put me on this drug.  What do you, whose had experiences with it?'  And its brilliant for that, its really, really good. 

'So yeah that's what I, I'd definitely say to anybody whose embarking on any kind of medical adventure, you know, know what you are talking about and the Internet is brilliant for that. There's so much information, there's so much misinformation as well, so you've got to have your questions and ask the questions. And get the doctor's opinion, so he'd say, the doctor says 'I want to do this, this and this.' And you say 'Well that's your opinion, why is that your opinion, why do you want to do that.' Just always ask the 'why' question. And that, that works out, you end up being treated differently by the doctor. They treat you like you're, they don't talk down to you, they don't condescend to you; don't allow them to, you know that sort of thing.

Explains that, although she can't go diving, she does not let her epilepsy affect other activities.

Well the only thing that I would have really liked to have done and I can't do is dive. I would liked to have dived because my husband is really into diving and I feel that he gets a lot out of that and I would have liked to have done that as well. But there's absolutely no way that anybody will licence me to dive because of my epilepsy and my husband has got medical clearance to do it because his epilepsy is so controlled. So he can do it and that's all very nice but I can't and that's a shame.

'But I've never let it affect my social life or going out and dancing all night or anything like that, which is probably not the most sensible thing to do but you know I have a bit of a personal policy about it which is that I won't let it rule my life and I won't be subject to it if you see what I mean.

Voices her concerns about drugs and pregnancy, and the need for more information.

Well the only thing I'd say that it really affects is whether or not you know I go ahead and have children because there's so many things to think about' with the defects from drugs, you know that you can have or that have been documented; with managing an incredible body change like pregnancy throughout it with the drugs and whether or not the way that your body changes will affect the way that the drugs work for you, and whether your drugs still work for you when you're in that new state of being. 

So that would be one long term thing that I'd have to think really hard and get a lot of advice about if we were gonna go ahead with it. Because it's a really serious decision to make, there's a lot that goes into making that kind of decision and obviously because both of us have epilepsy there's, you know, whether or not a child is more likely to have it and whether or not we would want that for a child.            

And have you read a lot about this on the Internet?                      

Yeah I've read a lot about it and I've asked a lot of questions and the hospital's given me a lot of information. And basically the chorus out there on the Internet from most women is that we need better treatment for women who are pregnant. We need a better drug, we need to feel safe in making these decisions. And I've read a lot of women's experiences about how they've been on these drugs and this is what they did and they ended up with a normal healthy child and that's all, you know that's all worked out for the best. But you know there's a lot to think about and I think there's a lot of women out there who don't feel like they're getting the support from drug companies or their doctors or things like that, or getting the right kind of counselling. There was a definitely a chorus of dissatisfaction in everything that I read, yeah.   

Talks about the support she had from an epilepsy nurse.

I think that's an excellent service, I was so impressed with that. Because you've got somebody you can ring, she'll [epilepsy nurse] find out your answers and they'll ring back to you, which is the thing that I've been most impressed with the level of care by the specialists.

...So when I sent that fax, when I was having problems with the Keppra (levetiracetam) she then rang me back and said 'You know you can ring me up don't you?' 'Oh no I didn't.' And they just said 'OK I understand what's going on, so in the meantime this is what I think you should do.' Which is what I was doing, I just changed the dose because I was starting with the dose in the morning and I just changed it to the night so I didn't have to take it before I went to work. But I slept like the dead. And she said 'OK well just do that and then next week just play with it, see if you can introduce it in the day.' And so I tried that again and I was just this space cadet at work, I just couldn't, I couldn't work, and I just rang up and said 'I can't, I can't do it.'  And she said 'All right.'