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BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CHECK UP 1. - Epilepsy
RADIO 4
THURSDAY 25/11/04 1500-1530
PRESENTER:
BARBARA MYERS
CONTRIBUTORS:
DR HANNAH COCK
PRODUCER:
ANNA BUCKLEY
NOT CHECKED AS BROADCAST
MYERS
Hello. Falling to the floor, writhing, jerking, foaming at the mouth - a full on epileptic seizure is easier to describe than it is to define epilepsy the condition because the severity and frequency of seizures vary considerably. Some people have many minor episodes, sometimes nothing more than a few moments lapse of consciousness. Other people have fits so severe and regular that they can put the patient at risk of injury and even death. Response to medication varies too - what controls symptoms completely in one doesn't work for another. Though taking the right drugs in the right combination and dosage can change the outlook dramatically.
Now though epilepsy is the most common serious neurological condition, it affects up to 400,000 people in this country, it's still often misunderstood. Would you know what to do if someone had a fit or if someone with epilepsy applied to you for a job?
Well if you've got questions about any aspect of epilepsy call us now to speak to our expert today, she's Dr Hannah Cock, a consultant neurologist at St George's Hospital Medical School. We've a number of people waiting to speak to you Hannah, let's get the first up on the line. It's Gill Warren and she's in Leicester. Hello Gill.
WARREN
Hello.
MYERS
And your question please.
WARREN
I've recently been diagnosed as suffering from epilepsy, a bit of a shock and I'm wondering if I can expect more fits, just a bit more information to be quite honest.
MYERS
Yes I'm sorry to hear you've had diagnosis but at least you know that you've got the problem and I guess you're being treated for that?
WARREN
Yes.
MYERS
So can you expect more of these fits - I mean do they follow on fast one from the other? Hannah.
COCK
Hello Gill. The good news is that for the majority of people with epilepsy we are able to control the seizures and prevent it from happening. So for around 6 or 7 out of 10 people, once they're on the right treatment, the answer is no you won't have any fits, anymore attacks.
WARREN
Right.
COCK
I'm afraid there's no test that we can do now to predict that, it's a question of waiting and seeing and continuing on the medication but for most people we can control the seizures and if anything people in the older age groups do a little bit better than younger patients.
WARREN
Oh well there's some compensations for getting old then.
COCK
Certainly, certainly.
WARREN
Not many.
MYERS
Thanks very much for that call and stay listening of course because I'm sure that there'll be a lot more questions that will have some relevance to those who have been diagnosed - perhaps recently diagnosed as Gill has. Let's talk - our next caller on the line is - let's see who we're going to next. I think it's - yeah okay we're going to Diana in Birmingham.
DIANA
Hello.
MYERS
Hello Diana, what's your question?
DIANA
I wanted to ask about something that happens to my husband when he's had a seizure, he has them in the middle of the night. I can deal with the seizure but afterwards he gets up and starts to wander around the house in a very alarming way, trying to dismantle things and get out of doors, that type of thing, it lasts for about half an hour and I can't get him to respond to me at all, it's quite scary.
MYERS
Well I can imagine that is very distressing. So what can Diana do to help her husband in this situation?
COCK
Diana, I'm sorry to hear about that. This situation after - particularly after bigger seizures is very common - a lot of people report episodes of confusion lasting up to sometimes hours after convulsions in particular. There isn't anything very clever medically that we can do to prevent the confusion, the primary aim is to try and prevent the convulsions or seizures happening at all in the first place and that would prevent this confusion afterwards. The best you can do during it is probably what you're already doing - is just try your best to prevent him injuring himself or putting himself at risk in any way. He won't be aware or able to respond to you normally though, as you've probably already experienced.
DIANA
No, no he isn't and he seems to be very, very strong.
MYERS
So is he being controlled for his epilepsy?
DIANA
Yes, yes well he was and then he suddenly had two seizures because the medication was changed because he was having side effects, so he's having different medication now, so hopefully that'll fix it. I wondered what I should do actually.
MYERS
Well I think it's a question wider perhaps for people who may come across someone who is indeed having a fit, a seizure or is recovering from one - if this happens in the street is there some good practice that we could all - need to know about perhaps Hannah?
COCK
The standard practice in the confused state after a seizure would be to try and stay calm yourself, which is often very hard to do. But although your husband may not be responsive people will pick up on the situation around them subconsciously and if you're frightened and agitated then that can be communicated and not help the situation. Really it's just a question of trying to, if possible, guide them to a place of safety, just try and keep them - stop people wandering across the road, stop them walking on to railway tracks, stop them getting into the kitchen where there might be dangerous equipment and that sort of thing.
MYERS
And what about that old business of trying to stop them biting their tongue - putting something in the mouth, trying to restrain anyone who's having a seizure?
COCK
During the seizure itself trying to put anything in the mouth can actually be dangerous while someone's convulsing, it can cause more problems. And you won't succeed - during the actual convulsion people are extremely strong and you're really not able to do that. In the stage afterwards, as Diana's explaining, when people are wandering around, again you won't be able to physically overcome people, you need to try and just stay calm and talk to them, even though they may not seem to be responding, continue to reassure them that things are going to be alright and try and walk them or just guide them gently to a safer environment.
MYERS
And in particular perhaps in response to Diana's question - it's a matter of making sure that the changing of the drug prescription really is being closely monitored because it sounds as though it's causing problems that were not there before - is that right Diana?
DIANA
He hadn't had any seizures for a very long time, in fact I hadn't seen him have one at all since we were married and a couple of years ago he had the first one - he has them in the night, so I'm always by myself with him in the house.
MYERS
So it's back to the specialist is it would you say Hannah?
COCK
Yes, I mean ultimately the aim here is going to be to try and improve his seizure control and it is something in someone who's seizure free but getting side effects you do need to discuss with them that there is a possibility that in making changes to improve side effects you might choose a drug that doesn't control their seizures as well and there is a small risk of occurrence as seems to have happened here.
MYERS
Diana thank you very much for sharing that with us. And we will move to another caller now - David Cross who's waiting for us. Hello David.
CROSS
Hello.
MYERS
And your question or comment please.
CROSS
My daughter had her first fit when she was 14 - a grand mal - she died from a SUDEP when she was 22½.
MYERS
So she died from a SUDEP - what do you mean by that?
CROSS
Sudden unexpected death in epilepsy.
MYERS
Okay. I'm sorry to hear that.
CROSS
Sorry?
MYERS
I'm very sorry to hear that.
CROSS
Yes. Why are parents and the sufferers - the victims - never told of the dangers of sudden unexpected deaths? I understand that over a thousand people a year die from epilepsy, which is more than the cot deaths and AIDS put together in this country.
MYERS
Well that is - is a shocking statistic isn't it and Hannah is David right there that people don't know that this can happen and perhaps are not therefore able to take the necessary precautions?
COCK
Well firstly let me offer my condolences as well - I'm very sorry to hear that David. He's right - about a thousand people a year die in this country because of epilepsy related deaths, some of whom are in this category called SUDEP. The most recent data suggests that SUDEP and the risk of death in epilepsy is only discussed with about 8% of patients who have epilepsy - that's been the current state of play.
MYERS
Is that so as not to scare people?
COCK
I think it's a mixture of things. The research that that figure comes from is a few years out of date and I think the situation is changing and the specialists certainly are much more aware of the need to discuss this with - in certain situations. There is a difficult balance to be struck between advising people who are particularly at risk or in situations where you know that they're at risk and they do need to know and balancing that against not wanting to cause enormous anxiety for many people with epilepsy out there for whom the chances of this happening are far smaller than the chances of them being killed in a motor accident for instance. So there is quite a difficult balance to strike. Certainly at the moment we are - specialist practice is very much towards informing patients of the risks where it's appropriate.
MYERS
Can you identify perhaps higher than average risk groups of people with epilepsy then?
COCK
We are able to. I mean as far as SUDEP goes we know that younger patients, in particular, exactly as David's daughter sounds, patients with learning disability, patients with frequent convulsive seizures as opposed to minor attacks, patients who live or sleep alone and might have unwitnessed nocturnal attacks seem to be particularly at higher risk. And those are groups that you would wish to discuss this with. Similarly it's something you need to raise as an albeit small possibility in patients who are wishing to come off medication because they're seizure free, because there's always the small possibility that changes in their drugs will result in seizure recurrence and if you're very unlucky that could be catastrophic.
MYERS
David thank you for telling us about your sad loss and alerting people to the fact that this is a very serious problem. Actually it brings in an e-mail here which is about changing drugs and the possible risks of that because if you're well controlled on a particular drug regime then of course it's quite a risky business. And John Hearson has said that he's been on a particular drug for a long time - I think nearly 20 years - and he's wondering whether he can now change that drug, come off it perhaps, because he hasn't had any occurrence I think for about 14 years. So is it a good idea to change drugs if the drugs are actually controlling the symptoms?
COCK
Well in this situation when someone's been seizure free for a long time and is presumably tolerating it quite well, having been taking it for 20 years, there'd be very little point in changing him to another drug. There might be a point in coming off the medication but even in the best of cases there's always going to be a small risk that that will entail a risk of seizure recurrence and there's no way that we can predict that with a hundred per cent certainty.
MYERS
So the fact that there are newer drugs that have come along doesn't necessarily mean that you should stop the old tried and tested drugs - at least tried, tested in your case - if they're working?
COCK
Absolutely not and I mean the recent NICE guidelines make that very clear. There are circumstances where the newer drugs have definite advantages over the older ones but if you're someone who's well controlled on one of the more - the older medications there's really no reason to change by and large.
MYERS
Thank you. We'll go to June who's calling from Bromley and has concerns about her daughter - what's the issue for your daughter June?
JUNE
Hello, yes, she's 25, she has epilepsy, she suffers from complex partial seizures. She's on three lots of medication - Tegretol, Keppra which is a new one and the third one is Vigabatrin and she's coming off that. But she's always been concerned with finding a drug that's okay to take should she become pregnant and it's been quite difficult to establish whether there is any such drug.
MYERS
Okay well you mentioned a couple of drugs there - I mean there a whole variety of them with various trade names and various generic drugs but without going into any detail about the particular drugs can say, Hannah, in general how someone wanting to become pregnant or indeed perhaps knowing they're pregnant should deal with the issue - the balance, if you like, between taking any drugs during pregnancy and of course their own safety and the need to control their seizures?
COCK
Well that's exactly the balance that needs to be struck. The first key message is that any woman who's planning pregnancy or thinks they might ever want to be pregnant in the future who has epilepsy should try and seek out this information before they become pregnant, as it sounds as though your daughter is doing. All of the anti-epileptic drugs do seem to be associated with small risks to the pregnancy, in terms of an increased risk of foetal malformations - things like a hole in the heart or spina bifida. However, the risks are actually very small and for the vast majority of women, well over 90%, their pregnancies will have essentially normal outcomes, even if they are continuing to take medication through the pregnancy, as most women will. The general rules are that the fewer numbers of drugs an individual is taking the lower the risk - so if possible we would try and reduce women down to one or two drugs at most prior to pregnancy, ideally one drug. We do have some evidence that one or two of the drugs seem to be a little bit safer than some of the others - so Carbamazepine, one of the drugs you mentioned, and Lamotrigine, one of the newer drugs, look to be a little bit safer in pregnancy than perhaps some of the other drugs. For the other new drugs we simply don't have enough information yet in terms of the numbers of pregnancies.
MYERS
So that said is there any reason why someone with controlled epilepsy should not try to start a family, I mean is, for example, is it going to be something that they may pass on to a child?
COCK
For most women with epilepsy they should - if they want a family - they should go ahead and have it, it's not a reason not to have a family. And for most women with epilepsy, I say most of them even on drugs will have normal pregnancy outcomes. There are some types of epilepsy - do carry a slight genetic risk, but it's a very small risk and it's certainly not of a level that should dissuade people from having children.
MYERS
So we're saying good luck. Thank you very much June and we hope that all goes well with your daughter and your grandchildren in due course.
We'll go to Devon now though if we may where Peter Mitchell wants to talk to us. Hello Peter.
MITCHELL
Hi.
MYERS
Hi there.
MITCHELL
I'm interested in focal epilepsy, which I've only just recently become aware. This epilepsy, the principle symptom is progressively worsening trembling, a secondary symptom might be insomnia. It's being treated by drugs at the moment which have had an effect but I don't understand the difference between focal epilepsy and grand and petit mal.
MYERS
I'm glad you mentioned it because I think it was mentioned earlier and we didn't get chance to explain what it is. And are you speaking on your own behalf or is this a family member?
MITCHELL
A family member.
MYERS
Okay, so can you fill us in as to what we mean by focal epilepsy?
COCK
Okay. Well firstly epilepsy or indeed focal epilepsy is not one disease, it's still hundreds of different types. But broadly speaking when we talk about a focal epilepsy what we mean is that the seizures are starting in one particular small part of the brain. It can be a different part of the brain in different patients but it's coming from one small area. That contrasts with the generalised epilepsies where the seizures start all over the brain all at once - it's a more generalised short circuit. But within those classifications there are still hundreds of sub-classifications, so there are lots of different type of focal epilepsy. But the distinction between focal and generalised is important and it really relates to whether you think it's the whole brain that's got a short circuit or whether it's just a small part of the brain that's damaged or got scarring or got some abnormality that's causing the epilepsy.
MYERS
Does that help answer your question Peter?
MITCHELL
It does. It's been suggested that this could have started in puberty, which is also when the insomnia started. Could you comment on that?
COCK
The relationship between sleep and epilepsy is quite complex and I don't think there's - there's probably not enough time to go into that today. Epilepsy coming on in puberty is not uncommon, it does have quite a high incidence in children and in young adults but beyond that I think there probably isn't time to discuss that further today.
MYERS
And Peter do you feel that you're getting the right sort of help for your family member?
MITCHELL
I think so, it's very early days and we live in hope. Can you just mention the implications of focal epilepsy on driving?
COCK
The rules for driving are the same for all types of epilepsy actually and the basic principle is that you need to have been free of seizures for at least one year in order to get an ordinary driving licence - whether you're taking medication or not doesn't matter but you need to have had no attacks for one year.
MITCHELL
And if the symptom is purely trembling that is an attack is it?
COCK
It doesn't matter what the symptom of the epilepsy is - it can be a really minor fit or a much bigger fit - but if you've had a single seizure of any type you're not allowed to drive for a year.
MITCHELL
I see.
MYERS
Okay Peter thanks for those questions. North Manchester now to Kelvin, Kelvin your question please for Dr Hannah Cock, our expert today.
KELVIN
Hello.
MYERS
Hello there.
KELVIN
I've had epilepsy since 1980 when I was 18. It only - the fits only lasted till 1985 when I was 23 and since then I've been free of fits but still on exactly the same medication. There's two questions about this: one of my drugs has a warning of dependency to it called Frisium, so I've been thinking it's such a long time how are my risks of actually considering withdrawing from the drugs?
MYERS
Can I jump in early Kelvin, I know you're trying to get two for the price of one there but I think that's quite an interesting question you're asking and it has been raised about this business of getting off your drugs and not being dependent on drugs forever more. You say you've been seizure free for more than 10 years now so let's get Hannah to comment on that for you in particular but for people generally about coming off drugs.
COCK
Well in general in anyone who's been seizure free for a number of years it's certainly worth having a specialist referral to discuss what the risks or benefits to you might be. These do vary enormously depending on the type of epilepsy. But certainly some epilepsies that come on at the sort of age that you describe - 18 - some of those epilepsies people do effectively grow out of and within 10 or 15 years they're really no longer at risk of seizures, even if they come off their medication. We can't predict with a hundred per cent certainty on an individual basis but we are able to give some guidance to individuals by taking a detailed history and getting information about the type of epilepsy. In general if you're coming off medication there's always going to be a small risk - at best a 5 or 10% risk that you might have recurrent seizures and then it becomes a very personal decision for you as to whether that's a risk you want to take. For example, while you're coming off medication it's advised that you don't drive for that period and for six months afterwards, it might have implications on employment or on your sort of psychological wellbeing if you were to have another - even one further fit after so long seizure free. So it becomes a very personal decision that you need to think about and discuss with a specialist in terms of the risks for you.
MYERS
And can I off the back of that mention a couple more e-mails, which take us a little bit more into that wider area of what the implications may be for you if you're suffering from epilepsy, controlled or not so well controlled, and that's - one of them is a comment from Noddy who's saying that he wants to mention the discrimination that he has found on several occasions - he actually lost his job, though he says: "My epilepsy did not affect my ability to do the job." That's one point and perhaps you can just comment on that, I mean people are very - if they declare they have epilepsy they may suffer from discrimination, if they don't declare they have epilepsy then if there is a problem at work they may not be understood and they may not get the right help - another balancing act for people isn't it.
COCK
It is difficult. I mean as a general principle I of course don't advise people to lie on their application forms. I think this is where education of patients, of their employers and of the public in general and from shows like this is very, very important. For the vast majority of people with epilepsy if they're well controlled it really has no impact on their day-to-day life and should not affect their employment with the exception of obvious things like being an airline pilot or you know there are some jobs where it wouldn't be acceptable. Even for patients with ongoing seizures most of the time when they're not having the actual seizure they will be functioning normally. So other than taking simple safety precautions, so there are some career options that maybe closed, but for most people it shouldn't be as limiting as it certainly is in some cases.
MYERS
And could I ask about another e-mail question which is - it's from Gill who's talking about her daughter who had a seizure when she was 16, she's now older, but increasingly is now suffering from panic attacks and wondering therefore whether the - perhaps that shock of how she had to cope in the outside world with her seizures and the apparent inability to deal with that could be at the root of these panic attacks. In other words there's a psychological overlay now to the actual medical problem.
COCK
Yeah I mean this is certainly well recognised and patients with epilepsy are at higher risk of psychiatric problems as well and this may well be the case. The - it's one of the reasons that epilepsy care needs to be multidisciplinary and so we work very closely with behavioural therapists, with epilepsy nurse specialists, with psychologists to help deal with this sort of situation where people have developed secondary problems. So yes it's quite possible they are related.
MYERS
Okay we'll go to another caller. Steven has been waiting very patiently, Steven your question please for our expert today.
STEVEN
Yes, hello Hannah. My wife has seizures but she gets - one of the things that trigger it is if she gets hot flushes in the night because she has a thermometer problem sometimes and I'd like to know if there's any kind of treatment to try and regularise her thermometer.
COCK
That's sort of outside the epilepsy scope to some extent. It's certainly recognised that patients ...
STEVEN
Well it is and it isn't because you see it's one of the triggers.
COCK
Sure, as I say it's certainly recognised that some epilepsy patients do have clear triggers - have sort of reflex epilepsies. Very often it's impossible to get rid of the trigger. I mean it may be worth exploring whether this is a perimenopausal phenomenon, whether there are any hormonal manipulations that might help. But ultimately for most people with triggered epilepsy the answer is still to treat the epilepsy rather than try and treat the triggers.
MYERS
Just a question again off the back of that: If you feel that there is an attack coming on, whether or not you've got sort of controlling medication in the background, is there actually some sort of emergency medicine you can take, something that's going to help?
COCK
There are a few emergency preparations but they're really only useful for people who have a long enough warning that's at least a minute or two before the seizure but there's a variety of medications, some as oral solutions into the mouth, there are tablets but the problem with tablets is they tend not to be absorbed quick enough, so usually it's either a liquid medication into the mouth or sometimes rectal medication which is rapidly absorbed. But that only applies to quite a small number of patients who have sufficient warning.
MYERS
I mean I think Steve you mentioned sort of hormonal changes and perhaps that comes into play at the menopause. Finally and very quickly is there anything you can say about whether epilepsy has a hormonal connection, whether therefore things might change at the menopause?
COCK
It certainly does have a hormonal connection but it's quite complex. Some women get better in pregnancy or better post-menopausally, others get worse, so there's no clear pattern. But there certainly is a complex relationship that's being quite heavily researched at the moment.
MYERS
There we must leave it. Thanks Steve for your call. Thank you indeed to everyone who has phoned in today and those who have e-mailed us. There is more information on our topic, you can go to our website, that's bbc.co.uk, you can follow the trail to Check Up or you can telephone our free and confidential help line is 0800 044 044.
And just before I go today I'd like you also to contact us if you have suggestions for the chronic health conditions that you'd particularly like us to tackle later on in this series, especially if it's a common problem - you know the sort of thing that affects some people most of the time or perhaps most people some of the time. We'll be tackling your top 10 medical complaints later in the series. But join me next week, if you will, when we'll be tackling memory loss.
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