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Thursday 23 November 2006, 3.00-3.30pm
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BRITISH BROADCASTING CORPORATION

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Programme 1. - Epilepsy

RADIO 4

THURSDAY 23/11/06 1500-1530

PRESENTER:

BARBARA MYERS

CONTRIBUTORS:

MATTHEW WALKER

PRODUCER:

ERIKA WRIGHT

NOT CHECKED AS BROADCAST


MYERS

Hello and welcome. And today it's your chance to ask your questions about epilepsy, the neurological condition that affects nearly 1 in 30 people at some time in their lives. Young Romeo Beckham being the most recent to attract public attention.

Now the good news about epilepsy is that three out of four people find that their seizures are well controlled with medication. Eventually they may be well enough to come off their drugs and children with epilepsy can often grow out of it. On the downside poorly controlled epilepsy can result in sudden death. While even the possibility of the mild, occasional attack can, understandably I think, spoil people's enjoyment of life, making them a little bit cautious about going swimming, for example, or playing video games.

So if you or someone you know is affected how are you coping? Are you getting the best medical care? Do you feel that your questions and your concerns are being answered? Well call us now, the number 08700 100 444. You can e-mail: checkup@bbc.co.uk.

And here with me to answer your questions is Dr Matthew Walker, he's a consultant neurologist at the National Hospital, that's the brain hospital that was featured on BBC television last night I think?

WALKER

Yes that's right.

MYERS

The very same place. Let's go to our first caller and it's Alexandra Stevens, who's in Bournemouth and has got a bit of a story to tell about epilepsy. Alexandra, it's over to you.

STEVENS

Yes, thank you very much. I'm phoning about my husband really who is a fit, healthy, active man of 43 years but last Christmas holidays he had his first epileptic seizure in the night, although we didn't call it epilepsy at the time. It was a complete shock to us, there'd been no warning that anything like this was going to happen.

MYERS

And what did happen Alexandra - what did happen?

STEVENS

We had a family day and then we got back quite late in the evening, went bed to as usual and about half past five in the morning I was woken up by him calling out extremely loudly. I tried to reassure him, thinking he was having a nightmare. Then his body went completely rigid - his limbs were completely rigid - and then after a while the shaking started and he was foaming at the mouth.

MYERS

You must have been very shocked.



STEVENS

It was very distressing, yes, very worrying.

MYERS

And what's happened since - that was a year ago?

STEVENS

Yes, we then had a break of six months, then he had another seizure similar to that and then in September and again about 10 days ago he had his fourth seizure. Those two last ones were shorter in duration, the first one lasted about five minutes.

MYERS

Okay and has he now had some investigations and a diagnosis then?

STEVENS

He's had various scans and EEGs, none of which have been very conclusive, he had a sleep deprivation EEG, which suggested that he had a tendency towards temporal epilepsy. He hasn't yet seen an epileptic consultant, we've got an appointment in February.

MYERS

Okay well look I'm going to hand you over to our expert here today, who's going to give you some - hopefully some advice before then because I'm sure it's a very worrying situation to live with. Matthew, what would you say about this, I mean it's interesting in the first place that someone at the age of 44 would have a first attack or is that what happens - it can be at any age?

WALKER

It can be at any age and Alexandra I mean it is very shocking and I often see this and I can understand the shock that you must have felt. But I mean epilepsy is a very common condition - 1 in 30 people developing it sometime during their lives. And it usually starts in children or in the elderly but it can start at any age. And the other thing is it can affect anyone - whether people are fit or unfit. We all have within us this sort of threshold where we could have seizures - I mean if we took enough alcohol or the right combinations of drugs ...

MYERS

Or the wrong combination of drugs.

WALKER

Or the wrong combinations of drugs, yes, we can all have a seizure. So we're all prone to having seizures and just some people the thresholds are lower than others. The other thing is that sometimes tiny bits of scar tissue that may have been present since birth can cause this sort of electrical storm in the brain that results in the seizure. Now what you saw is probably the maximal expression - the most extreme type of seizure, the convulsion and they're very frightening to see. But there's a whole host of other types of seizures, sometimes people just get in temporal epilepsy, for example, just sort of butterflies in their stomach or sometimes very strong deja vu and I don't know if he gets anything like that Alexandra?

STEVENS

He has said that he's had the occasional feeling during the day of deja vu, where he feels if he doesn't snap out of it soon he will be physically sick, that's happened on a few occasions I think.

WALKER

Yes well that's quite typical for very small seizures, little electrical storms, where people don't lose consciousness and what you describe is very typical for temporal lobe epilepsy. I mean we can all experience deja vu and if you have an episode of deja vu that doesn't mean you're having seizures. But if you have these little electrical storms and people get this very intense deja vu that tends to happen repeatedly during a day or many times during a week. Now the investigations that he's had, you said he had an EEG and that didn't initially show anything, that's not uncommon. It's not uncommon between seizures for the brain activity to be absolutely normal and only to occur during the seizures. And he's had a scan I understand, is that right, or...?

STEVENS

He had an MRI scan yes.

WALKER

Yes and that's important to try and find out exactly what the cause is. In many instances we don't actually identify the precise course and just assume that there's just a bit of bad wiring in the brain that's led to this. But sometimes we do, sometimes we find little bits of scar tissue or other things in the brain that may cause the seizures and indeed the way we think about epilepsy is as a sort of symptom of something that's going on in the brain but sometimes we don't always identify that.

MYERS

I mean to jump to the case or the chase in this example, what's the sort of likely outcome, what's the next step? I mean there's going to be another visit to the hospital and a specialist opinion but seeing someone like Alexandra's husband, is it a question of getting him on to the right sort of drug treatment?

WALKER

Yes and if people have a single seizure then we often decide not to treat because often people don't go on to have further seizures. But your husband's had a number of seizures and we would treat and we would expect about three quarters of people to have the episodes completely stopped with medication and we'd expect the majority of those people to eventually to be able to come off medication. So it doesn't have to be a lifelong condition and many people it's a sort of transient condition during their lives.

MYERS

Well I know we're getting a lot of calls and e-mails about taking medication long term. But let me go to our next caller on the air, we've got someone who'd prefer not to be named whose daughter has had two seizures and I think your concern is about her memory, what's happened?

ANON

She had one seizure six years ago when she was 35, never had anything before, and then she was quite clear for six years and she had another one last year. And this is what's bothering us, she has quite a responsible job and she's finding that her short term memory has been affected.

MYERS

Is she being treated for the epilepsy?

ANON

She is yes.

MYERS

So let me put you over to Matthew, Matthew could this be the drugs that would be causing memory loss or could it be the fact that she's had these two attacks?

WALKER

Well if I can just reassure really. For most seizures, brief seizures, they don't have any permanent effect on the brain, so most brief seizures it's not a problem. If people have very prolonged seizures, lasting over half an hour, then that's a different matter. I don't know if either of her seizures lasted longer than that.

ANON

No, no, only a minute or so I believe.

WALKER

Right, so usually those very brief seizures don't result in permanent memory problems. If people have - if we aren't able to control their epilepsy and they have repeated seizures over the years then we do see that memory can decline. The other aspect are the drugs. What often happens is the drugs - it's a balance of side effects against stopping the seizures and it's a very fine balance. And the drugs do affect concentration or can affect concentration and often people complain of memory problems, probably more because of problems with concentration than actually their memory. And the other thing is that there are other issues as well, I mean when people are diagnosed with epilepsy it's often quite a shock, it has quite an impact upon their lives and I think people become, can become depressed or withdrawn and sometimes they interpret that as problems with their memory. And if I can reassure you that usually those very brief seizures don't have an effect upon the memory.

ANON

So she can look forward to her memory returning then?

WALKER

Well I would hope so yes, I mean if the seizures are completely controlled and provided she's on satisfactory medication without too many side effects then I would hope that her memory should be fine.

MYERS

Pass on the good news to her in that case.

ANON

Yes thank you very much indeed.

MYERS

Thank you for calling in.

ANON

She's not depressed or anything like that really.

MYERS

Oh that's good news because I was just going to ...

ANON

She's just looking forward to being able to drive again.

MYERS

I was going to raise that with Matthew. Yes it is a bit of a hit isn't it if you are told that you have epilepsy because certain things such as driving you may have to relinquish your driving licence for example.

WALKER

Yes, I mean I think there are two aspects to being diagnosed with epilepsy that do have a great impact. First of all I think people often are very fearful of the diagnosis and certainly if people have seen seizures, and our first caller did see the seizures, they are frightening things to see and people are terrified that about things like possession and so forth. But the other aspect is that it has an enormous impact on people's lives on especially the ability to drive. The other things that it can have impacts upon are people's work and the drugs themselves, as I've said, can affect concentration, those have an impact.

MYERS

Well there's an impact when it comes to thinking about starting a family. Anna has e-mailed to say that she has epilepsy, it is controlled but in the next couple of years she would like to have a child. She's worried about the risk of spina bifida. So are there any risks on her medication, should she consider coming off medication and in fact she says - and losing my driving licence?

WALKER

Right, well they're very good - very good questions indeed. I mean obviously the best thing when you're pregnant is not to be on any medication at all and if you've been very well controlled with medication, certainly for two or three years, then consideration has to be given about coming off medication but that should be done before pregnancy, rather than during pregnancy. The - if you're still having seizures or if there's still significant chance of having seizures then it's important to remain on medication during pregnancy.

MYERS

Then what about the risk to the foetus?

WALKER

Well there are risks but they tend to be quite small. So to put it into context - in the general population there's about a sort of 1 to 2% risk of a major sort of malformation of the foetus, of the unborn child. And on medication that goes up to about 3-4%. Now the question here was specifically about spina bifida and there are a couple of drugs that are associated with spina bifida, in particular one has a risk of about 1-2% chance of spina bifida during pregnancy. And because of that and the small increase in risk associated with these drugs we do recommend that women go on to folic acid before pregnancy and during pregnancy and a slightly higher dose than is recommended for most women.

MYERS

But the top line is really you take a very small extra risk and you wouldn't recommend not starting a family - you wouldn't say that?

WALKER

No, no not at all. You're completely right there - I would not recommend not starting a family. And as I say the risk even with the worst of the drugs that we have, and the drugs do have slightly different risks, so it may be better being on one drug rather than another, but even with the worst drug that we have at the moment the risk is only about 6% of a major malformation, so it's a sort of 94% chance of the baby being absolutely fine.

MYERS

Now Anna doesn't ask this question but I wonder if what's behind this is whether you might stand a chance of passing on the epilepsy or the tendency to epilepsy to your child?

WALKER

That's another very good question. For most people with epilepsy the chance of passing on are very small and the child will have a lifetime risk that's slightly increased - about double that of the general population. So it goes from about a 3% lifetime risk to about 6%. So it only increases by a very small amount. Now if there's a very strong family history, many people in the family have had epilepsy, then that risk is increased. But for most people with epilepsy the increase in risk for the children to develop epilepsy is either marginal or just - or minor.

MYERS

We'll go to Helen Buckworth who's waiting patiently in Buntingford, Hertford. Is - she's asking about taking medication long term - is this you who's taking medication long term Helen?

BUCKWORTH

Yes it is.

MYERS

What's your concern?

BUCKWORTH

Well I've been taking medication now for about 10 years. I had one major fit when I was four months pregnant with my daughter, having had what I think now were very minor seizures for a period of five years which got worse and worse and worse. Epilepsy's never actually been diagnosed specifically but I do know that if on occasion if I don't keep up with my medication I go back to having these tiny little - it's like a deja vu feeling that the doctor was describing. But now I've been on the drugs for 10 years and I can't really ever see a way of coming off them and I just wondered really whether or not that is a problem or whether you can stay on these drugs forever, as long as there are no side effects?

WALKER

Well Helen I'd like to reassure you, I mean the - you're quite right in a way that we'd all rather not be on any medication at all and ideally if people aren't having seizures for long periods of time then there is a substantial chance of coming off medication. But in your instance when you're getting recurrence of these little seizures when you come off medication it's probably right that you stay on it. Now some of the medications that we're using we've had for over 50 years and people have been on it for that length of time without any long term adverse effects. The one that we are beginning to realise may be a problem is that osteoporosis, so thinning of the bones, may be a long term problem on many of the anti-epileptic medication. And it's certainly sensible to have your bones checked as you get older. But in terms of other aspects of your wellbeing they shouldn't have a long term effect.

MYERS

Would you be satisfied to accept that that's probably the sensible thing to do or is there anything more going on here?

BUCKWORTH

Well this is it, you feel slightly at a loss because there's no sort of recall really or - if you go for a repeat prescription month on month you simply pick them up, there's no recall to see whether or not - as long as everything's alright - that you should be changing what you're doing.

MYERS

Yes particularly as things move on, maybe there are different drugs available, you'd rather like someone to pay a little bit more attention to your continuing use of medication, I can understand that. Matthew, is it time for a visit to a specialist?

WALKER

I often think it is, I mean certainly if you've been seizure free for a long time then it is worth seeing a specialist, just so that you know what the chances of actually coming off medication are. And there's surprising things - I've seen people who haven't had seizures for 60 years almost, in fact I saw someone the other day who hadn't had them for 60 years who's remained on medication for that time because nobody had ever thought of reviewing it and he's been able to come off medication quite happily. So it is something that does need reviewing. There are downsides, I mean there is this risk that even if you have very small seizures that you'd lose your driving licence and wouldn't be able to get it back for a year until you'd been a year seizure free, so there is that aspect. And the other thing is the recommendation is that if you're coming off medication that you shouldn't drive whilst coming off and for six months after you've come off. So there are right times in life to do it and wrong times to do it and I don't know how important driving is to you but if it were substantially important then my experience is often people even when I give them a high chance of coming off medication would rather not take that risk and would rather wait until some other time in their life when that would seem more appropriate.

MYERS

A fine balance of judgement but one that perhaps would be helped by having a specialist actually rehearse some of the arguments with you. Okay thanks for that call. We'll go to Herefordshire and Linda Tandler is waiting to talk to us. Linda, your question please for our specialist today, Dr Matthew Walker.

WALKER

Hello Linda.

TANDLER

Thank you hello. My daughter Amy, who's now 17, started having epileptic fits when she was 11. She was put on medication and monitored every six months, very good care from Hereford Hospital. And gradually was taken off the medication because she didn't have any more and now suddenly three years later at the weekend, funnily enough, coinciding with the programme, she has had another fit. And I'd like to know what you feel about outside stresses. The first indication, when she had her first fit, her granddad had just died, she'd started a new school and we'd moved house. This time, within a few weeks of her granddad dying, it's come again. Also we've had an ongoing battle with the computer and her sitting for hours in front of the computer screen.

MYERS

This will ring bells with a lot of people won't it, sitting in front of ...

TANDLER

Yes, so I wondered what you felt about that and also whether the fact that she had febrile convulsions when she was a child from a small baby, up until the age of nine. They kept telling her she'd grow out of it and she never did, whether that's connected as well.

MYERS

So Linda, as usual, these things are never always entirely straightforward but let's pick out particularly that point about stress as a possible trigger factor. What's your view on that Matthew?

WALKER

Well undoubtedly there are certain factors that do seem to be able to trigger seizures in people who are prone to them or if people have a tendency to have seizures then they will have a tendency to have more seizures during those particular things. And certainly stress is one of those things, in fact sometimes it's not the stressful period itself, sometimes it's just after the stressful period that people notice their seizures getting worse or the occurrence of seizures. And there are other aspects as well, I mean she's 17 years old and there are things such as missing sleep can often precipitate seizures, bring seizures on. And alcohol is another factor, I mean the occasional glass of wine or something is fine but my experience of teenagers is that they often don't just restrict themselves to one glass of wine.

MYERS

Let's be honest a lot binge drink, not saying your daughter does but plenty do.

TANDLER

No I don't think - we live in a very rural area she can't really get about by herself so we nearly always know where she is.

WALKER

I mean there's certain other things - it must be very upsetting again to have been seizure free for that time and think that you're rid of the condition and then for it to come back and I'm sure it's very upsetting for her.

TANDLER

And she's just beginning to gain her independence, going to visit universities etc. etc.

WALKER

No I know very upsetting time for it to occur. I mean you asked about computers, in fact there are very few people with epilepsy who are sensitive to flashing lights, so about 5%, about 1 in 20 people are. And I don't know precisely what type of epilepsy your daughter has but the chances are that she probably doesn't respond to flashing lights by having seizures. I think the problems with the computers usually aren't the flashing lights usually it's that people play with them until the early hours of the morning and sleep deprive themselves. And the last thing you asked about was the febrile convulsions. Now these are fits with fever that occur between the ages of about six months and five years and they're actually very common. And in most people who have them they don't lead to epilepsy, so they - if I can reassure people or parents who've had a child who's had one - most times they don't. But rarely they can and in particular they can lead to temporal lobe epilepsy. And I don't - is your daughter being investigated at the moment or - in fact she's just had the seizure back...

TANDLER

I mean we just saw the doctor yesterday and we've been put on the list for the hospital visit again now, so she hasn't seen a specialist yet this time.

WALKER

Right and she had scans and things before did she?

TANDLER

She had an MRI scan, it was all clear.

WALKER

Yes, I mean I think the specialist may well consider doing another MRI scan and this is just because our scans have advanced enormously even in the last five or six years and sometimes it's possible then to identify tiny bits of scar tissue that may predispose her to seizures and if that were identified then it may be that she's have to be on medication longer term. But I think really what she needs is to see obviously a specialist and be further investigated.

MYERS

I hope that's been helpful, I think we have to leave it there but thanks for the question. We've got someone again who would prefer not to give a name but is concerned about temporal lobe epilepsy. Matthew, you just actually mentioned that I think, can you just say briefly what we mean by temporal lobe epilepsy and how that's different from general epilepsy and then we'll take the call?

WALKER

Right certainly. So as I said the seizures themselves are these little electrical storms that can begin anywhere in the brain or in the whole brain at once. And the brain's divided into different areas and the area that's to do with memory and memory formation are the temporal lobes and the commonest sort of place for seizures to start or one of the commonest places is in the temporal lobes. And often people then get very little seizures that begin with sensations of things like deju vu or memory flashbacks or sometimes fear.

MYERS

Okay that's a helpful explanation. Now over to our caller. With that in mind what is it you needed to know about this?

ANON

Oh good afternoon Dr Walker.

WALKER

Good afternoon.

ANON

To keep it absolutely brief is it possible to stop the development of a temporal lobe epilepsy attack if one senses, as you've described, fear or butterflies or whatever, by changing one's breathing into just sort of deep breathing for a few seconds, if it is possible to stop the attack coming on by doing that are you actually suffering from temporal lobe epilepsy or is it more likely to be a panic attack or breathing, what shall we say, irregularity?

WALKER

Right, well that's an excellent question, thank you very much for that. I mean there are two issues that we need to address, the first is this idea of can people stop their seizures from progressing and indeed people can and people sometimes, mostly with relaxation exercises or relaxational concentrating at the time when they get that little initial start of the seizure can stop the seizure from progressing. So that can occur and it's sometimes a good idea for people to look into that as a way of controlling their epilepsy. The other issue is that a significant number of people are misdiagnosed with epilepsy unfortunately and in my specialist clinic where I see people referred with very difficult to control epilepsy I would say about 20-30% of the people don't have epilepsy at all and have things such as panic attacks that have been misdiagnosed.

MYERS

There we'll have to leave it, time as usual has run out on us. Thanks very much Matthew Walker, thanks for all our calls today. There is more information about our topic today, you can get that on our website if you go to bbc.co.uk. You can always phone our free and confidential helpline, that's 0800 044 044.

I hope you will join us again at the same time, Thursday afternoon at 3 o'clock, next week when we'll be taking your questions then on the subject of unexplained tiredness. Take care till then.

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