In terms of my own personal sort of situation, one of the things I found with the tablets very early on was that the carbamazepine was a tremendous sleeping pill if you like. One of my biggest problems is that I can’t sleep at night, I mean that’s nothing to do with the epilepsy, that’s just the way I am. It’s a family trait and so when I first got the epilepsy and I started taking the tablets and building my resistance up to them, I spent most of the first three months asleep because it was, you know I would take a tablet and it would make me very, very drowsy. But over time obviously that stables out, has balanced out and now I really don’t feel that effect at all.

…Now it doesn’t have any effect at all. In fact taking the Epilim, other than control, other than adding on to the Tegretol and helping to control me, I’ve never really felt any side effects from that. In fact throughout the whole period of this like 17 years, the only side effect I can remember is that very drowsy state in the early days.

Have you continued on the same medication since then?

No you see, not the same dosage. I’ve been on the same tablet, you know type of tablets but not the dose. I was on the combination of Epilim and lamotrigine and I was on a few more Epilim than that I was and only a little lamotrigine. That was after the operation and that’s when I was well and we thought well just a little of the lamotrigine is fine. But then they increased the dosage of the lamotrigine and lowered the dosage slightly of the Epilim, and I was still OK for a while. And then of course last year, early last year I think it was, when he changed the medication again, he took me off Epilim altogether, just kept me on lamotrigine. And then that was also when I was told I was looking terrible, I was really pale, I looked tired and ill, just not you know, not myself at all. As soon as I went back on to the Epilim again I’m looking brighter, even though like I’m tired and I don’t feel too great, I’m told that my eyes are so much brighter and I’m more sort of you know with it.

And I, whereas before I was on 400 milligrams of sodium valproate twice a day, now it’s a case of 500 milligrams twice a day. Understandably that’s not a lot because theres a lot of people out there that are on extortionate amounts, incredible amounts of that drug. Also I’m on another drug that’s being mixed into it as well but that’s, that’s also giving me some other side-effects which is, has been stuff like muscle jerks which is very, very annoying because for example you’re sitting down eating something, you get a muscle jerk and your fork goes flying off across the room for example and your food just goes flying on to the floor, for example! (laughs).

But something else for example, you’re trying to think of words, you’re having a conversation with somebody, you’re trying to think of a word to express a point that you are trying to put across, and you can’t think of the word. And you’re sitting there trying to process this word and you’ve got the image of the word in your head and you can’t actually say it. And you’re trying and trying to process this word in your head but you just can’t get it out.

And then one evening at work I had another seizure, and I got admitted to hospital. And then they started me on a new drug which was Epilim;

And that was all right. But just before I was about to see the neurologist, about two weeks after coming out of hospital to see how I was getting on, I noticed I had a tremor. My hands were going (shakes her hands). And I thought OK it wasn’t that bad, I can cope with that. But as soon as the neurologist saw, I thought I might have imagined it, so when I showed him straight away he said ‘Oh no, you can’t take Epilim. So he stopped that and then he put me on lamotrigine. And that’s what I take now;

So you started taking the Tegretol straight away? Did you feel any side-effects;

No, not initially but after about eighteen months I was working as a trainee solicitor and I felt that I couldn’t concentrate very well, and that my memory wasn’t very good. And I found it quite frustrating. And I thought that was to do with the Tegretol and I raised that with the neurologist. And in the end he did say that it could possibly b; connected but he still wanted me to take it;

Then they put me on Epilim and the side-effects started straight away. I put on about two stones in a year and they said ‘Oh that can’t, that’s not the Epilim, its just because shes just overweight, shes just eating too much. And mum was saying ‘No I’m sure it’s the Epilim. And my fits changed as well, instead of being complex partial seizures I was having tonic clonic seizures. I was just dropping to the floor. And every time this happened they upped the dose of Epilim. Then afterwards they said ‘Oh it’s a side-effect. And this was when I was on the 2000 milligrams a day, and well I shouldn’t be on that dose. I had loads of problems as well.

Then they changed it to Lamictal and when I came off the Epilim I lost a stone and half in about six months. So it was definitely the Epilim. I was having terrible, terrible period problems, which they now say that was the Epilim as well.

When I was on the Epilim I was sleeping all the time. I could go to sleep at six o’clock in the evening and wake up at ten o’clock in the morning and still need a nap in the afternoon. It was terrible. And mum was speaking to the doctor about the side-effects and everything and they said ‘Well we could try you on Lamictal. And the difference to me was brilliant. I had so much more energy and I lost a lot of weight, you know it was good.

Apparently there were several different ones I tried and after a while a combination of phenobarbitone and phenytoin were found to be the most successful.

Yes. And you’ve been on those ever since?

Well I was on those for oh, I should really have made a note of the drug dates for you. I was on those for most of my teenage life, my early years. Mid-20s I was tried on Epilim and that was found to be reasonably successful in controlling the seizures but it made me a bitch, it really got to my emotions more than anything else had done and I said ‘I just can’t carry on taking this, or my friends can’t bear me taking it.

Carbamazepine was added some time before that, that has been fairly successful as well in controlling the major seizures. When the ‘Gaba’ drugs came out several times the doctor I was seeing at the time, the consultant I was seeing then, tried to withdraw the Phenobarbitone and found they could only get it down to a certain limit after which I started going into worse seizures than I had been having, or could cope with. That went on for some time and I understood the reason for stopping phenobarbitone then was simply that it was an old drug with numerous minor side-effects and the only one that you became tolerant of, the only one that was really dangerous in the addictive sense.

Well one was lamotrigine and one was Keppra, I did take one other but I haven’t got that name readily available. But I seemed to lose all my feelings, my senses, I was unable to taste things, to hear like I used to, to see like I used to. I used to cry all the time. I got terribly, terribly depressed. I still had seizures. One of the drugs did help with the photosensitivity but I think that was Lamotrigine but the side effects were so dreadful, I was just, I became a non-person. I couldn’t converse, I couldn’t do anything, except cry. So after three years, I gave them a good try, and after three years I’m off now, the Keppra, that was the last drug I tried and it’s a year exactly since I last took my last pill, anti-convulsant drug. And I do feel so much better. It’s taken a year really to recover completely and to regain my confidence.

So anyway the doctor at the [hospital] put me on some medication, phenytoin. It was absolutely wonderful. It’s stopped me having absences, I felt like myself, my brain worked properly, my vision worked properly it was absolutely wonderful. The only problem was that it also set my arthritis off, it was very painful but I really didn’t care. I mean it was just so wonderful to have me back and not have the absences, not to be worried when I went out, it was just, and I really didn’t care. I thought if this is the price I pay, I’m going to pay it. Unfortunately after a month or two it upset my liver, so I had to stop taking them. And I was a bit upset but I was perfectly confident that the next lot they gave me would be fine, I had no worries. Took the next lot and they didn’t seem to do much good at all. And after a few short weeks they did something weird to my circulation system, so I had to stop those.

What were they?

I’d have to look that up. The next lot made me suicidal, I just wanted to end it all, life was so awful. So I gave them up. Er after this time I was, you know, anxious, worried, I’d had, I’d had a cure if you like, I wanted to get back there. I still want to get back there..

Er so after three failures I was not depressed but disappointed, you know. I’ve since tried two more, one, I remember the consultant saying to me “This one might take your skin off,” and I thought he meant like sunburn

Silly me, what it actually does is separate, is separate the skin from the tissue, it is actually quite painful, so I gave up that one. I’ve been prescribed a sixth drug for months but because of the after effects of the last one I haven’t got round to taking it yet.

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 hed 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.

I had with the Keppra, I’d been on it a while and it was OK, it wasn’t foolproof. And then about five months after I started taking it, I had a terrible rash, like big nettle welts really all over me, terribly itchy. And a dermatologist said it looked like a drug reaction but there have apparently had been no other, somebody doing research into Keppra had not seen it before. So who knows, but the decision was made that we would come off it and it did clear up so.

So you lowered the dosage and came off quite slowly;

Yes, very slowly.