And you were put on gabapentin straight away?

Yeah

Do you take that in the morning and in the evening?

I take three a day, one in the morning, one about 3 and one just before I go to bed.

And it’s always been gabapentin?

Yeah. It’s the only drug I’ve taken.

The tablets have been great, they’ve controlled it. After a while you do get used to taking them. You don’t really think about it, it just becomes a normal habit to take them. I mean if it is controlled after a while it, it really doesn’t affect you that much. You really just get used to it. It’s not, it doesn’t become, I mean if it is controlled it’s not really life threatening or anything. It’s not the end of the world. I mean theres worse things out there.

That’s one of the biggest problems with the condition, the fact that it does take a long time with some people to diagnose exactly what form they have. But for eighteen months I was put on a combination of carbamazepine and phenytoin to the extent where I got up to very, very high levels and it wasn’t getting rid of the simple partial seizures, although I never had another tonic-clonic. And the problem is that I went through the usual problems that most people face in that the higher the drug dosage then the more it affects the quality of life; making me extremely tired, so I then went back to my neurologist who changed my medication, changed it on to a drug called clobazam and mixed that with Tegretol, and that worked fine. It was very fortunate that it worked, there are many people I do know who have gone throughout many years of their life trying different combinations and they’re still struggling for the quality of life and they’re still having the seizures. So I was very fortunate.

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.

Yes I was on, basically phenobarbitone, they tried different strengths of phenobarbitone. And it wasn’t until my late 20s, until I had finished my Tokyo job, finished going round the world and so forth with the import/export company, it wasn’t until some time. It wasn’t until an expert epilepsy, the GP said ‘This is a condition, I’m no specialist, I can give you a specialist and he can deal with it. So, it was much nicer than that but he was really, really supportive. And the [doctor], who is sadly retiring, he tried one or two different kinds of medication and eventually they found the right balance and I was pretty much fit free

It was three drugs. Um, carbamazepine, diazepam and Epanutin and they tried them at different strengths and the carbamazepine, Tegretol I think, the doctor said apparently that its got a very short half life. And I was taking it in one form and then he gave me the slow releasing one, or the one that, that was the most significant change and that was some years ago.

So you took the tablets every day’ morning, evening?

Four times a day.

Can you remember all the different drugs that you’ve tried over the years?

The first one I can remember was Mysoline and then they I started taking Epanutin with that. And then I took a third drug, Tegretol, so I was taking three drugs for quite a while. Obviously I needed three drugs and it’s been, I’ve been changing to other drugs, Epilim I was taking, I didn’t like that because I was putting on weight, that was Epilim. As I say I’m taking Tegretol and gabapentin and I’ve also taken Sabril, that’s another drug which I started taking before it got on the market. I can’t remember any of the others;

So the drugs that you’re on now are working well for you;

Yeah;

Are they controlling the seizures or making them less frequent;

They make them less frequent yes and because I’m off work that’s taken the pressure off as well;

Yes. So how long did it take, what, you know, you took different drugs or different combinations, how long did it take before you found the ones that were suitable for you?

It took quite a long time, over ten years. I was having treatment for quite a while at the epilepsy centre and it took quite a lot of time to find the right drug. So its just a case of sitting back and waiting to just find the right drug, and it will come, you’ll find that you’ll get the treatment eventually, just wait, it’s a long wait;

And have you always been quite positive while you’ve been waiting;

I think so, yeah I know I’ll get there in the end. Its been a long wait as I said but I just overcome it. I’ve not worried about it even though I’m a worrier, but I’ve always tried to forget it, this is why I tell people forget it and just get on with life. Don’t just think about epilepsy because I think if you forget it you won’t get so many attacks.

And when I realised that I was having more seizures and they were now grand mal seizures I thought well I’m not really happy with this, I must do something about it. Because I couldn’t go out on my own with the fear of probably not getting to work or probably not getting to the shops. I can’t have this you know, we must do something about it

‘So I went and saw my GP who was a very good support to me and he said “What we need to do is we need to have a complete change of medication, perhaps, and there are far, far more different tablets on the market now that perhaps you could be introduced to.

…Anyway I’m now on a drug that I was told was a new drug and it’s Keppra. I can’t say the proper name, it’s a long name, it begins with L and I can’t say that. But I’m quite happy with it now, I wasn’t when I started taking it, excuse me (coughs), because it made me feel really, really drowsy and really, really tearful. And I thought I can’t go to work like this because I can’t do the job that I’m employed to do if I’m like this. So I thought I’ll have to go back and see my GP again, I’m not happy with the way I feel and I went back to see him and he immediately got me a soon appointment back up at the hospital where I went and again they were very, very good up there. They understood and the tablets were chopped and changed around a bit, still taking the same drug which is fairly new but altering the way I was taking it. And so now I’m fortunate enough to probably have not had another seizure, during the day that is, for getting on for 6 months, which I’m really pleased with.

[My son] started going to school at 3. He went to a special needs nursery but he, the seizure activity was still the same. He tried various different drugs, latmotrigine, nitrazepam. Nitrazepam was quite a good drug because that made him seizure free from the ages of 6 to 7, but he started to get his second teeth at the age of 8 and then it all started again. Hes been on every medication on the, on the chart. At the age of, of 15 he started to get very aggressive and he was put on vigabatrin and Tegretol and, but the vigabatrin, every time we tried to increase it to stop his seizures from happening, it just made him more aggressive. Prior to that he was having just absence seizures and myoclonic jerks.

After the age of 15 he started to have tonic-clonic seizures, what used to be called grand mal attacks, and they increased in severity. At the ages, at the age of 17 he had another EEG and he was diagnosed with Lennox-Gastaut syndrome. This is when he, when he had periods of non-convulsive stasis seizures, so he was having seizures all the time. And at the age of 18 he went on to topirimate which made him very poorly. He, he became really inactive and lost a lot of weight. So we came off topirimate and just was on Tegretol, and he was on tiagabine but his seizures didn’t really help. And between the ages of 18 and 21 he, he became virtually inactive. He didn’t do anything, didn’t say anything, didn’t want to eat and slowly went down hill.

At the end of the, of 19, end of 2000 he presented with ulcerative colitis so he became even more ill than he was before. And so this year we tried him on levetiracetam (Keppra) and that’s improved his behaviour and how he feels about himself a lot. He can talk a lot better now and his seizures don’t seem to be so out of control. Hes also still taking Tegretol. I put him on, on the gluten free and dairy free diet and that seems to, also to be helping his seizures at the moment.

Now this, this has gone on and as I said there are so many, at the moment theres a new drug, I’ve gone on to it and I think what’s happening, I think, I do not know I’ve got no evidence – if that’s the word – is that it goes for, I try a drug and it works and then slowly I become immune to it and therefore I have to stop and try another drug.

And what medications are you on now for the epilepsy?

I am on this latest one – Keppra, and also Epanutin and right down to 5 milligrams of clobazam I was as much as 10.

I just, I had, when we were at [the hospital] and we were seeing one of the consultants, things were getting far worse with [my husband] who was having seizures three or four times a week, a night, and that was three or four seizures at a time, coming out of one, going in to another.

All at night?

All at night. And some during the day, it was getting progressively worse that he was having them during the day and this was on, he was on Tegretol, Epilim and basically he tried most of the drugs and they were still not controlling him. And his behaviour problems were getting far worse, he was getting worse. In fact to the stage that I was embarrassed to go anywhere with him ’cause the attitude he had to people and things, you know it wasn’t him, it was a complete change of personality. A person that I’ve got to say I was embarrassed to be with because of how he was reacting.

‘So now they’ve decided, on top of all his other medications, to put him on Keppra which as I understand has only been licensed for about a year. And they’re now monitoring him on that. So he has now been on that for about nine months I suppose.

But hes still going, it is about six weeks between so that’s better than it was. But he did say the next visit which, we go up again in September, he was going to try and cut down maybe some of the Epilim or Tegretol, whichever, to see if he can up the Keppra and take out some of the other ones because obviously the Keppra is suiting him.

No, I mean he [the consultant] plans to reduce it, the vigabatrin by 250 mil a month so you know I’ll see how that pans out. If that’s, you know and see if I can, you know see if reducing it in a much more gradual way will have a better effect. I mean last time I tried to reduce them I don’t think it was having a very uh, it wasn’t a particularly good time seizure-wise. And it tended to bring them on. And consequently as soon as I took them off, I started to have more seizures quite quickly. Whereas initially the first time I tried to reduce my medication it worked really well until I got down to 1000 milligrams a day, and then when I tried to go down to, this is just with the vigabatrin, when I went down to 500 a day then I started to have seizures. So I pushed it back up again. And they didn’t sort of stop until I went up to 2000 so that’s what its at the moment.

The, I had been at the same time, I had been helped by the introduction of a new drug in the early 90s. I was pretty zombified as I said before with various different drugs, and Lamictal came on the scene. This drug was the one that changed my life, although it hasn’t stopped the fits, I have about, a fit every two weeks, it has made life much more bearable in between fits and I am not a zombie anymore.

Ten years ago I would not have been able to speak as I am speaking now, I could only string a few sentences together. So keep, if you are suffering with drugs, keep hammering at the doctors so that hopefully one drug will suit you. Lamictal doesn’t suit everybody but it certainly helped me. It still helps me, so its now the only drug I’m on and I still need to be on it, but it does, it has certainly helped me carry on with life.

It was only when I changed my doctor and got to see the consultant I’m seeing now, who I’ve got great respect for, did anyone bother telling me then that actually phenobarbitone withdraws calcium from the bloodstream, you carry on taking it, especially after the menopause, theres a strong risk of osteoporosis. And to be quite honest I was furious that this information hadn’t been given to me sooner.

I mean for example I feel that even if they couldn’t have withdrawn the barbiturate at an earlier stage I could have done more to work against the osteoporosis by checking my diet, doing more exercise. I’d have been a far, far more active person if I’d known that this risk of osteoporosis was hanging over me. And this is why I think it is very, very important that doctors, consultants or GPs, at any level, give the patient as much information as they possibly can, not necessarily just what they think the patient can deal with at that moment in time. They’ve got to allow the patient a bit more space and freedom than many doctors do. Because the feedback, the after effect could be worse than not telling them at all.