Epilepsy

Making epilepsy treatment choices

Many of the people we interviewed said that they did not know enough about anti-epileptic drugs to make informed choices about medication. People often left decisions about drug treatments to their doctors. One woman whose husband had epilepsy reported that, although they were offered choices about drugs, they often wanted the consultant to make these decisions. She also discussed problems with changing from one consultant to another.

Explains that he left decisions about drug treatments to his doctor.

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Age at interview: 45

Sex: Male

Age at diagnosis: 26

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Did you feel that you had much choice in terms of the medications that you tried out or did you leave that mostly to your neurologist and GP?

At the time it was, as I say, in the mid '80s I left it totally to my neurologist. Looking back on it now, now I've studied the condition quite a bit, yes I probably would have something to do with the choice of medication, but, but at that time it was one of those things where the neurologist changed me from one to another and I accepted totally what they said. Fortunately it worked.

Discusses wanting the consultant to make treatment decisions and problems with changing consultants.

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Age at interview: 54

Sex: Female

Age at diagnosis: 42

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So when it got to that stage I said to the Professor at [the hospital] 'Look,' 'cause we used to go up there and he used to say 'Right, you know, I don't wanna change your medication because obviously you don't want anymore seizures, I don't want to do this.' And his words used to be 'What do you think I should do?' And you know [my husband] used to sit there and say 'Well I'm sorry but you're the doctor, you tell me, I don't know. All I know is I don't want to be feeling like this.'

And so I said to the doctor, I said 'Look I have been told about Professor [name], is there any possibility that we can get to see him. And he was a little bit put out that I'd asked and I said 'Well its not reflecting on what you've done for him but I just, but I just feel that I want a second opinion basically to see if we can help [my husband].' And he said 'Well its not up to me, its up to your GP,' he said 'I'll write a letter to your GP,' which he did. I mean he wrote a lovely letter saying that you know he was unable to control [husband] and would the Professor have a look into the situation. And then obviously the doctor, my local GP she, because of her budget she was a little bit 'Aw I don't know,' you know and she said it should come from the hospital. And because she was in this area, in the Kent area, she said that she couldn't put us to another hospital in the London area, the London hospital had to put in for it.

Anyway this was going backwards and forwards, I was ringing the hospital, I was ringing the surgery and in the end I went down to my local doctor and I said 'Well look someone has got to do it and it's [husband] we're talking about at the moment.' So she was very good, she wrote to the Kent Authority and asked if they would give permission for her to refer him. And they said 'Yes,' so that's when we got referral to Professor X, but that wasn't easy, that was a battle.

How long did this all take?

Oh I'd say a good six months maybe more, of backwards and forwards and not giving up. And this is what I've got to say you can't give up, you've got to keep on pushing hospitals and doctors, do everything you can, your own research, your own evidence.

One man explained how he had read an article about a particular anti-epileptic drug and requested a change in medication. Other people, who had had neurosurgery for epilepsy, recalled making decisions to go ahead with the operation after weighing up the pros and cons. One woman praised the information and care she was given by consultants, but wondered why she was not offered neurosurgery sooner.

Praised the information and care she received from the consultant, but wondered why she was not...

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Age at interview: 39

Sex: Female

Age at diagnosis: 25

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But they went through it so many times and I was given, right up to the very last, the morning of the operation, like [the surgeon] came and sat on my bed and said 'OK, we're just going to give you some Diazepam,' popped me in a wheelchair, 'whip you up to the scan, give you a MRI.' He made it sound as though he was changing a car tyre.

He was so matter of fact about it, brilliant, he really put me at ease, right up to the last minute, given the most incredible care and attention.

'You know and it wasn't because of them that I got the surgery, it was because of my mum, you know made a point of finding out if there was an alternative. But it certainly wasn't handed to me, and that's another thing, people must try and find out if their epilepsy can be operated on you know.

But it's a shame that then they didn't say right lets put her through and see if she's got a problem we can operate on. I'm not really sure, I'm not really sure what lengths mum went to, to find out whether I could have the op because it seems so long ago now. But I'm sure she'd know, if she was here she'd tell you. But she had to, she had to sort of get up and go and find out, nobody ever said lets send her to so and so and find out if she can you know. So that concerns me and whenever anybody says to me' 'Oh I know somebody with epilepsy'. I always say 'What causes it?' 'I don't know.' 'Well go and find out, there might be a chance you could have this op.' you know, that's quite concerning that there's probably a large percentage of people with epilepsy now this minute who could have what I had. You know, and if my mum hadn't made a point of finding out, I'd still have it.

Several people we interviewed said that, as they became more informed about epilepsy, they were better able to make choices, decisions and to ask questions. One woman discussed the changes she wanted to make to her medications, and recommended that patients make treatment decisions with doctors (see 'Finding information on epilepsy').

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

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Age at interview: 28

Sex: Female

Age at diagnosis: 19

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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.

Some people recalled choosing to alter the dosages of drugs in order to be on the lowest effective dose. One man explained his decision to reduce as much of his anti-epileptic medication as possible under the doctor's supervision. One woman, who was disappointed with taking several anti-epileptic drugs, discussed how she lowered the dosages herself, although this is not recommended.

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

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Age at interview: 46

Sex: Female

Age at diagnosis: 15

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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.

Explains why he wants to come off medications.

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Explains why he wants to come off medications.

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Age at interview: 35

Sex: Male

Age at diagnosis: 13

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My interest now is to get off as much of the medication as possible because I'd rather be having seizures but know who I am and be myself. There are some people who are quite happy having lobotomies but that means there's no way back, they can't change that. If my seizures were controlled for a period of time there's nothing saying they can't be controlled again, it's just a case of finding out - is there a social/psychological balance in my life required or was that the medicine working.

At the moment again reducing it [phenytoin] hasn't changed the frequency of my seizures, so I intend to continue doing that. So ultimately I can just be on one medication and take as little of that as possible and once I'm in that situation I can then maybe try another one. But what's the point of being on medication if it's having no change or effect on you. Or more important the side effects are actually impairing your various abilities, so I would like to overcome that.

Yeah, have you felt that you've had a lot of a say in your treatments in deciding how, what you want to do, you know how have you felt about that side of things?

At first no - obviously - that's when I changed doctor, so the neurologist I go to now is more understanding but obviously with my interest in the subject, I arrived and she asked me what I want to do next. I'm judging her, she doesn't have time to read my notes and she doesn't have time to notice about the psycho/social problems that people have to deal with. She's a neurologist and she focuses, she specialises in a different area. What I've learnt from that is that when I was young, I would look up in awe at these doctors but all they're doing is trying different medication and shoving it in the cauldron and seeing what works.

So I have now got an interest in wanting to make people far more aware of those things, that medication isn't a solution to everything, it certainly may help in some ways but you are taking that medicine and you will have a strong involvement in that decision. Which in many instances means you have to understand a wee bit more about the condition and being able to do that psychologically actually improves your self-confidence. That again is something which is not given out in medicine at the moment, but that's personally why I would like to get involved in this field.

Discusses how she lowered the dosages of her drugs herself.

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Discusses how she lowered the dosages of her drugs herself.

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Age at interview: 27

Sex: Female

Age at diagnosis: 26

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And I was taking my medication on time, I was doing everything like I should and still had these bad major fits. And I thought these medications aren't helping me. And then I went to the new neurologist and he said to me 'Do you want,' and I told him about you know what was happening to me, and he said to me 'Do you want me to increase,' no he said 'Do you want me to give you another medication?' I said 'No, no. I've been through so many anti-epileptic medication drugs and dosages and nothing has helped, I don't want to try anything else.'

Do you feel that you've had much choice in terms of the drugs that they've given you? Like now you said you've lowered the dosage haven't you? Who gave you that advice?

No I haven't had any well relevant information about the drugs that I was taking and how it would affect me, about the side effects. I haven't had that kind of information. So what I've done now is, as I said, my dosage was 3000 of Keppra [levetiracetam] before, a day, and 20 milligrams of clobazam. Now I've lowered the dosage slowly to 1000 of Keppra in the morning and 1000 of Keppra in the evening; and 10 milligram of clobazam in the evening, I don't take 20 milligram of clobazam a day, I just take 10 milligram of clobazam.

Each day?

At night, in the evening, before I go to sleep.

You, you've changed this by yourself, you haven't told anyone else?

No, I haven't told anyone else and I've noticed that since I've changed this my mind feels much less heavy and I feel much better. My body feels much better. I gained so much weight before, I feel like I'm losing weight now as well. And I think because I was taking so many drugs and so many medications, this dosage that I was taking was making me gain weight although I wasn't eating that much food. But I'm eating more food now than I did before, but I'm not gaining that much weight, instead I'm losing weight.

Some women discussed how they and their doctors decided to change drugs or dosages because of pregnancy (see 'Women and epilepsy'). One woman explained how she monitored her husband's drugs and how they made treatment decisions together with doctors.

Explains how she monitored her husband's drugs, and discusses being involved in making treatment...

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Age at interview: 54

Sex: Female

Age at diagnosis: 42

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And the last visit we went to see Professor X , he said 'Right,' to up the dose. Because originally they did give him a plan right for two weeks, take 250 [mg] then go up to 1 twice a day and go, but I noticed that when we started to up the medication he [husband] was too zombified. So I said to him 'Well lets do it in our own stages. Go on it, up it for however long, see how long it takes you to have a seizure in that time. When you have a seizure we'll then up it.' And he did go quite a few weeks between seizures, it was about six weeks between seizures. So then we upped them but we found that when we did that he was very zombified. And so I said right 'Go back to the initial dose that you was OK at, and if it means only six weeks in between [seizures] that's better than what you was having.'

So then he, like we went back to see Professor X and he suggested then that because it had been quite a while in his system, that we should try and up it again which, we're in the stages where he has upped it, but he's still a little bit zombified. So we're gonna give it a month and if he's too zombified we'll go back, take the day time dose out and go back to it just being taking it morning and evening.

With the epilepsy drugs at the moment do you feel you have the choice, you have as much choice as you can or...?

Well you still tend to listen to what the GPs have to tell you, you've still got to go along with these guidelines. I wouldn't sort of say 'Now you stop taking Epilim because you've got to have all the toxin levels done and all that so we wouldn't do that. But when they put you on to another drug clearly you can see if one is making you into a zombie, so you don't carry on upping it and upping it if you are gonna be like a zombie. You just stop and you ring the hospital and say 'Right', in many cases we say 'Right we've stopped this and gone back to this,' and they'll say 'yeah that's the right way to go. 'But you don't do anything that's going to be life threatening and silly you know.

Last reviewed May 2016.
Last updated March 2014.