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听BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CASE NOTES
Programme 1. - Manic Depression
RADIO 4
TUESDAY 19/09/06 2100-2130
PRESENTER:
MARK PORTER
CONTRIBUTORS:
JAN SCOTT
JOHN GEDDES
PRODUCER:
KATY HICKMAN
NOT CHECKED AS BROADCAST
PORTER
Hello. In today's programme I'll be meeting a few of the half million or so people in the UK living with bipolar disorder - better known as manic depression. People like author Jeremy Thomas who developed delusions of grandeur during his first manic episode on a business trip to New York.
THOMAS
It kicked off really with me elevating myself, I think, to the peerage and becoming Lord Thomas that led me to end up staying in the best suite in the best hotel in New York and naturally to have two armed body guards with me 24 hours a day and two stretched limousines with me 24 hours a day for a period of a week. This was when I was earning - I think my monthly salary was 拢750.
PORTER
But back home, Jeremy went on to experience the other end of the mood spectrum when he entered a depressive phase.
THOMAS
I went into a complete and utter gloom like I have never ever experienced before. But you know this is the terrifying thing - to me I didn't know that anything was wrong, I thought it was all me in fact and there was this complete feeling of hopelessness and you know you're completely useless at your job. And at the time there were a lot of suicidal thoughts. I got as close as to, you know, the edge of the platform.
PORTER
My guest today is Professor Jan Scott from the Institute of Psychiatry.
Jan, the two classic extremes of manic depression there?
SCOTT
Yes and very clearly described. I think if we take the depression end first. You've got that consistent awful feeling of sadness, which is greater than is normal in day-to-day life and persists for much longer. And then you've got this pattern of changes in people's thinking, how they behave and their physical functioning - often can't sleep, wake up early, feeling particularly bad early in the morning, very hopeless, can't see a way forward, very down on themselves and frequently can't find things to enjoy that normally would have cheered them up. And the process then starts - they lose appetite, lose weight. The difference between this though and what people sometimes call unipolar disorder, which is the recurrent depressions, is that in bipolar disorder or manic depression you then get this other end of the spectrum - you get people who become what we call manic, so you've got elated sort of over-optimistic people who describe what we call euphoric mania. And then you get a group of people who although they are overactive, don't need sleep, seem very energetic are actually quite impatient and agitated and irritable and that's a very common type of mania and it's important to think about that because not everybody who's manic is feeling happy.
PORTER
Jeremy was smiling when he was telling his story, recounting his tales of New York, but actually you know although they are quite funny sometimes, what you do when you're manic, but the implications can be pretty serious for both you and the people around you.
SCOTT
Yes, devastating I think is often one of the problems because actually people become disinhibited, they lack judgement, they get themselves into slight precarious situations, they spend more money than they've actually got available to them. We see people who can be bankrupted by this whole process and lots of social, psychological and financial difficulties is the baggage of this.
PORTER
What happens in between - are these people, in inverted commas, completely normal?
SCOTT
Well history used to tell us that people between episodes were very high functioning, in fact they often suggested to us that they were above average and coping a lot better than many of the rest of the population. In fact as research has progressed what we've found is the more and more intensely the follow up is done on people with bipolar or manic depressive disorder that we find that between episodes, about 50% of the time, they've actually got some low grade symptoms, often depression, and about 30-60% of people are not really functioning at the previous level they did socially.
PORTER
We've been slipping between the terms - manic depression and bipolar disorder - does it matter what we call it?
SCOTT
I think it's a complicated issue. I think bipolar disorder has become very common because in the American literature we talk about unipolar depression, which is recurrent depression, and then bipolar is people who get these two different ends of the spectrum. The difficulty with that is that not everybody has these sort of symptoms that fit into polar opposites, as I mentioned there's this kind of dysphoric state, so people often can get symptoms of mania and depression simultaneously.
PORTER
Well we'll call it manic depression today for clarity's sake, so we don't go back 'twixt the two. And who's at risk of developing the condition and when?
SCOTT
Well the first thing to say it's no respecter of status or class, it's about equally likely to affect both males and females. The bit that perhaps we don't always notice so much though is that the first real peak in the age of onset is somewhere between about 15 and 19, the difficulty though is that's sometimes difficult to pick out from people who are having troubles at school, people who are having other difficulties, people who maybe start to use drugs or alcohol. And what we sometimes find out is afterwards that in fact they were doing that because they were having these quite extreme mood swings and all these other sorts of symptoms. And we often find that it's been about 6 or 10 years before people finally get to the diagnosis. Now that's not psychiatrists being bad at their practice, sometimes many people have two or three episodes of depression before they go on to have a manic episode.
PORTER
Well later on we'll look at the treatments available but first what about self help?
Well, understanding manic depression, and how it affects you and your family, friends and work mates, is a vital step in coping with the condition, as I found out when I joined Lisa, Phil, and Wayne, and Wayne's wife and carer Jane, at a support group meeting organised by MDF - The Bipolar Organisation
ACTUALITY - MDF MEETING
I just seemed to go from the high into the low and this sort of last week's been typical of that - not sleeping well, panic attacks still ...
... rapid cycle of that, the two go quickly from one to the other.
Bit more depression, a lot more depression.
We can't actually find anything that's triggered Wayne's ...
Either mania or depression.
But what about Lisa then, because you seem to be able to recognise some of these?
Yeah I'd say trigger wise you can normally just start recognising things that -mainly my biggest one is failure, if I'm not doing things right, things aren't getting done and the house isn't clean and the kids didn't have this for breakfast or someone didn't achieve that.
Beat yourself up about everything. And every single little thing.
And it's the same as everybody, everybody goes through that - all my friends go through it but for me it just goes on and on and if I don't try and stop it, don't pip it before it gets too far then that's when it starts ...
So you can nip it, you can ...
I can I'm really lucky.
PORTER
Phil, what's the idea behind the MDF meetings?
PHIL
The basic idea is that it's good to be with other people who've had the same condition as yourself and similar experiences and to learn from them. I suppose it's a bit like the AA but for people with manic depression really. We encourage carers to come along as well - family and friends are equally welcome.
JANE
I'm a carer and to go along ...
PORTER
Often forgotten.
JANE
Yes and to actually go and to hear how other people are, how they are with the illness, and to talk to the carers - wives, husbands, whoever - that actually go along and if anyone's not feeling particularly well then everyone's there to give advice and help.
PHIL
And of course carers are living with us, they recognise our early warning signs, the things that might trigger us, they have a very important part to play in meetings, just as well as people with the condition.
PORTER
Does the label - I mean has the label made any difference for you?
WAYNE
Yeah the actual GP who diagnosed me he said you've got manic depression.
JANE
Which was just a relief, it was just a relief to have a name to go back to have a look at.
WAYNE
Everything made sense and you can do something about it or you can understand it more, which helps.
PORTER
You first noticed the problem when you were in your late teens.
WAYNE
I just remember going very paranoid, people were out to get me, following me, checking on my family members etc., I had no idea what was happening to me. I was admitted into hospital where the diagnosis was a breakdown. And I went 12 years - no medication ...
JANE
Nothing.
WAYNE
Not being ill. In the space of a week I went from being normal self to being sectioned.
JANE
Yeah within a week.
PORTER
What did you notice as a partner, how was he behaving?
JANE
Very erratically. He talked a lot, he moved around quickly, he did everything in fast forward, everything was just very, very quick.
WAYNE
I couldn't understand why people were worried because the confidence was like - was superb and what's wrong with me getting up at 2 o'clock in the morning and wanting to go out to the pub on me own.
PORTER
When you're - during one of these manic phases I mean does it get you into trouble with other people? What about your wife for starters, I mean it must put a lot of strain on the relationship?
JANE
Well yes because normally Wayne doesn't go out on his own, he doesn't go - doesn't go off with his mates to the pub and things like that, we do everything together. But when he's high and he's manic he doesn't consider anything else. Let's climb that tree because it's a good idea, you know.
PORTER
Phil, that story of this mania is that something that's familiar to you?
PHIL
Yes indeed and like Wayne I go high very quickly, when it happens I can be happily at work on a Wednesday evening, maybe a little bit boisterous and a bit jokey perhaps, but on a Friday I'll be in hospital under a section, heavily sedated because it just happened so fast.
PORTER
And what sort of things do you do when you become manic?
PHIL
I think I'm becoming very productive - I have lots of ideas for books, poems, projects, I ring people up, I start typing away on my computer all times of day and night - it feels as if I have a great insight into the problems of the world, in fact I begin to think I'm a superior person, I wonder why people don't do homage to me.
PORTER
That must be quite a nice feeling in a way?
PHIL
For me it's very nice, not for those around me, although it's often tinged with lots of irritability because everybody is driving at 5 miles an hour, people are getting in my way, people don't understand my ideas and there's a lot of anger and frustration at the world.
LISA
I spent 23 years before I got diagnosed because my parents didn't know what the symptoms were, and hadn't a clue - knew there was something very wrong with me because of my behaviour, the school knew there was something wrong with me but they could not work out what the problem was.
PORTER
Were you getting into trouble a lot at school?
LISA
Oh yeah I had my first, what I would call, a psychotic episode at eight and knew that I was completely unstable. I would be extremely manic for weeks and then extremely depressed and not be able to go to school. But nobody at that time knew what that was. I will take mediation for the rest of my life, there's absolutely no doubt about it that if I missed two lots of medication in the evening I would have symptoms straightaway.
PORTER
Like what?
LISA
Normally mania - perhaps I want to go out more, perhaps have more to drink, perhaps have more to drink, perhaps I want to dress differently, perhaps I'm much more social, perhaps I talk too much.
PORTER
The dress differently - how do you dress?
LISA
I would say that I'm much more provocative when I'm high because I think I'm much better looking and that I'm skinnier and that I'm much more attractive to everybody.
PORTER
But how do you differentiate from those days when we all naturally feel great about ourselves, we have bad hair days where we feel terrible ourselves and we have days where you feel naturally great, how do you know you're just not - or do you worry all the time that you're on the edge of teetering on ...?
LISA
No. I think that experience - I mean it's been 10 years, so it's experience and I think a lot of it is, is that it's okay sometimes to wear a short skirt and go out thinking that you're really cool and have a great night but I think it's how many times you're doing it a week is when you notice and whether you're actually putting - for me it's when I'm not putting everybody else first or I'm not thinking about a partner or my children and then hold on a minute, what's happening with this.
PORTER
I want to talk about the treatment, you said you were going to be on medication lifelong, taking lithium everyday, how does that make you feel?
LISA
I think you get so used to living with it, it's like if you - I don't know if you take a vitamin tablet everyday and it makes you feel a little bit sick when you take it but you carry on because it makes you feel better.
PORTER
If I was to take one of your lithium tablets how might it make me feel, what would I notice do you think?
LISA
Probably very thirsty, you might put on a bit of weight, you might have a tremor - which tends to be one of the ones that I think people find is the most annoying ...
PORTER
That's shaking hands.
LISA
Yes you can have shaking hands. It tends to go away after a time. I'd rather not take it but I wouldn't be without it.
PORTER
Wayne, do you take medication daily?
WAYNE
I do yeah, four years ago, with me being well for 12 years, put me on sodium valproate which is an epileptic based drug but ...
PORTER
Designed to be a stabiliser isn't it, to stop you going up and down.
WAYNE
And as these last four and a half years have gone on we've had antidepressants introduced, sleeping tablets, anti-psychotic.
PORTER
So you're on a mood stabiliser, whatever that might be, whether it be lithium or the valproate or the lamotrigine but then you have tablets to stop you going too high and tablets to stop you going too low, tablets to help you sleep. I mean it's quite a - how does that make you feel, there's a cocktail of medicines ...?
WAYNE
The consultant I've got is absolutely brilliant and we work as a team, but I seem very resistant to a lot of medication.
PORTER
One of the things about medicines of course is you need to take them, some of the patients I've looked after over the years one of the problems has been, for instance when the mood starts to lift a little bit at the beginning of a cycle of mania the first thing to go out the window are the pills.
PHIL
During manic phases I have thrown all my medication out of the window, including that for mental health and for my asthma and everything because ...
PORTER
You don't need it anymore.
PHIL
I've no need for it. But I have complied within the last 15 years and as well as the lithium I have an agreement with my psychiatrist to be able to medicate myself to a certain extent by taking a little bit of extra antipsychotic as I need it. There's still a warning bell even despite being on lithium and I do just take something to knock myself out, just to calm things down for a couple of days.
PORTER
And as far as you're concerned taking the medication in terms of side effects?
PHIL
I used to feel a little bit grey, a little bit dissociated from the world, a little bit damped down mentally, more so than I felt comfortable with...
PORTER
Emotionally blunted?
PHIL
Yeah, just kind of life wasn't interesting. But I've been working with my psychiatrist to find a dose that still damps the behaviour down enough but still allows me to have enough kind of interest in life and to get on with my life.
PORTER
Thanks to Phil, Lisa, Wayne and Jane. You are listening to Case Notes, I'm Dr Mark Porter and I am discussing manic depression with my guest psychiatrist Professor Jan Scott.
Jan, we heard a number of different drugs mentioned there - take me through what's available, perhaps if we could classify them. How do you treat a manic episode, how do you treat a depressive episode, and how do you keep people's mood stable to stop them cycling between the two?
SCOTT
The mainstay of treatment for people with manic depression is first of all the mood stabiliser. Now we've got lithium, which has been around since the 1950s and probably is the best known of all the medications. And in recent years we've found that some other medications, previously used for people with epilepsy, anticonvulsants, can also have a mood stabilising effect.
PORTER
And the idea of these treatments is that it stops people both going high and low.
SCOTT
And the other important aspect of that is the reason that's a particularly important part of the mainstay is if you're going to try and treat depression in people who have a risk of mania and getting depressed you want a mood stabiliser as well as an antidepressant because if you give them an antidepressant on its own although the risk is probably lower than we used to think you could actually obviously start to send them high, as you start to treat their depression you could start to push them in the opposite direction. So the mainstay is a mood stabiliser, then if they become depressed we would add an antidepressant. If people start to develop the symptoms of mania then usually we would add another medication as well. Classically that's a drug called an antipsychotic but it's used predominantly because of its sedating effect, it helps them sleep, it takes away the edge of all this extra energy activation.
PORTER
One thing you haven't mentioned is the overall long term prognosis - how likely are people to get recurrent attacks and how often are they likely to come?
SCOTT
Well the first thing to say is that if people do seem to have absolute classic manic depression then the reality is that 90% of them will probably have another episode at some point in their lives. Now as my patients often point out to me that means that 10% don't and that's very important to bear in mind as well. On average probably people would have about four or five episodes over a period of 10 years, if it wasn't carefully controlled with other treatment.
PORTER
What about the role of talking therapies, psychotherapy, does that help?
SCOTT
It's not a substitute for medication but if we can help people stabilise their mood on medication then we've often got a window of opportunity to try and help them do other things that can improve their quality of life. And there's now been research - over the last 10 years there's been a great deal of development in this area and the therapies that appear to work have four key components. First of all they help people understand the disorder and they help them adjust to what's happening to them, this is a major life changing event for many people. So there's a lot of issues around self-esteem, how they view what's going to happen to them. The second thing they do is they help people think about what they can do to reduce the risk of getting lots of symptoms, and that's often around things like good sleep hygiene, getting into regular patterns of day-to-day living, avoiding stimulants - drugs, alcohol, cigarettes, coffee, tea - whatever it might be that might just slightly tip them over to the edge. But at the same time a balance - not asking people to live in some sort of psychological straightjacket. Then there's the whole issue of helping people stick with long-term treatment - a lot of people are very tempted to come off medication if they're feeling well. And then finally, if people can self-monitor and do that type of self-management then hopefully we can teach them to recognise life events that might be triggers or the symptoms that come in a certain sequence that say they're going to start to become unwell again. So those four components together in about 22 sessions of about six months seem to be the sort of profile of interventions that the talking therapies that work seem to add.
PORTER
Well one of the particular challenges facing health professionals and carers responsible for people with manic depression is the high risk of suicide. John Geddes is Professor of Epidemiological Psychiatry at the University of Oxford.
It is a very real risk as well isn't it suicide?
GEDDES
Oh yes absolutely, it's obviously particularly during the more acute phases of the illness but overall the evidence is that about 2% of people with bipolar disorder will commit suicide - that's 1 in 50 - during the course of their illness and lives.
PORTER
And are there groups that are at particular risk?
GEDDES
Well the evidence is usually that obviously males and older males that that's consistent risk for suicide but the key risk, clinical risk, is always those people who've previously had some attempt at taking their own lives, that's by far the most reliable predictor of future successful suicide and it's the same for bipolar disorder. Otherwise severity of illness - if people have had bad manic episodes followed by subsequent depression, that's often the phase of illness during which people kill themselves because obviously if they've got into trouble during a manic episode - financial, relationship or ...
PORTER
Dwelling on the repercussions of ...
GEDDES
Absolutely. And clinically - a very, very risky time when people are going down following a manic episode.
PORTER
What about delays in diagnosis - we've heard that often the diagnosis is made with hindsight in the early stages, does that make a big difference?
GEDDES
With a lot of the severe mental illnesses the initial episodes are very severe and often recognised late and treated late and therefore the potential for harm is much greater. Also the person it's affecting isn't as familiar with the disorder at that time so the way they respond to it is different. Obviously they don't know what's going on ...
PORTER
Or the people around them - their friends and family.
GEDDES
Family- definitely don't know what's going on. People tend to look for other explanations rather than a mental illness and these all are factors that delay access to care and getting effective treatments.
PORTER
Jan, do you think we should be doing more to identify these people earlier?
SCOTT
I think we should but I think it's also quite difficult to be absolutely certain who's going to be at risk, we know obviously people with family history of bipolar disorder may be more at risk. And then a lot of the rest of the ways in which we'd identify that is about raising awareness of this disorder, I think people don't go to their GP necessarily when they're hypermanic but they might go when they're depressed and getting GPs to try and check out for symptoms as well, because they may be the first port of call, and also in the secondary care services.
PORTER
John, of course one of the key benefits of having a correct diagnosis is more like to be on mood stabilising like lithium, what impact does that have on suicide risk?
GEDDES
There is reasonably good evidence, it's never as good as you'd want it to be, that people who take lithium the risk of suicide is reduced by about 70% over the course of those trials, but it's based on rather few numbers.
PORTER
Professor John Geddes, thank you very much..
One life event that has been shown to trigger problems is pregnancy and childbirth and that's exactly what happened to mother of four Lisa who we heard from earlier in the programme. Lisa became depressed and paranoid after the birth of her first baby. I asked her how long it took her to recover.
LISA
Completely, probably a good two years, I'd say, from being that low and that paranoid and to actually to be able to function. I was really lucky because I stayed at home with my parents and they care for me and if I hadn't had mum and dad I definitely would have been admitted with the baby.
PORTER
When you were "better" (in inverted commas) what happened then?
LISA
I had another child when my daughter was two and a half and I would say that accidental pregnancy, probably wasn't very well at the time, but obviously I was on medication, so this completely changed the whole spectrum of what was going on. I went to see the psychiatrist, who was really supportive, fantastic man, and he said if you're going to continue with the pregnancy we need to look at what you're going to do on medication. And we had a long chat about that and the medication I take is lithium carbonate and there wasn't any way realistically that it would be safe for me to come off that, if I did I would have been very, very poorly and probably been a danger to the unborn baby and the child I already had. So the decision was made by me to stay on medication.
PORTER
So it's a matter of balancing the potential risk, which is a bit unclear of what they might be to babies being on a drug against your health and therefore indirectly the baby's welfare as well I suppose.
LISA
Yes definitely.
PORTER
So the decision was to stay on the medicine?
LISA
Yes I did, I stayed on lithium throughout that pregnancy, I had blood tests every two weeks throughout every pregnancy to make sure that my lithium level was safe for both me and the baby, which was really important as well. So it has to be carefully monitored. And I was induced, so that I could come off the medication, I had my baby and then returned on to it 24 hours after delivery.
PORTER
And everything's been fine?
LISA
Absolutely fine.
PORTER
And you've had two more since then haven't you?
LISA
Yes.
PORTER
And do your children notice when things aren't quite right?
LISA
Yeah, I mean certainly my older daughter is coming up to 10, we haven't put a label on it, they know mummy's got some sort of mood disorder, we don't talk about it in proper terms. But we have what's called an itchy, scratchy day in our house, which means that if I get up and I am irritable, I'm not coping particularly well that day and I'm a bit bitey, I will say mummy's having an itchy, scratchy day today. And in fact the whole family have adopted that so if she's having a bad day she'll say I'm having an itchy, scratchy day.
PORTER
I think we need that in my house too.
LISA
But I do think it makes you a lot more honest with your family and your children because you have to talk about things, if they're not happy and you're not happy, there again if you haven't got this sort of thing in your life then you don't tend to be quite as honest and open.
PORTER
Talking about families, looking back across your family now is there any history in any other family members of anything similar?
LISA
We've definitely got a genetic link from my dad's side that's there and is definitely - we're not sure bipolar because of the age and the different diagnosis that used to be around but we're pretty sure on it that it's there.
PORTER
And do you worry about that in regard to your own four children?
LISA
I thought about that a lot I must admit and I think my main point would be is that I lead a really happy productive life, I'm in a good relationship, I have fantastic children, I'm doing a lot of training and voluntary work and I've got a lot in my life and I think that if, you know, they would have a diagnosis like that that it wouldn't be the best thing in the world for them, I'd rather they didn't, but if they did it is something that's liveable with and something they can move on from.
PORTER
Lisa talking to me at a support group meeting.
Jan, manic depression is an early onset disease that affects as many women as men, we've already said that, so pregnancy and childbirth must be issues you regularly deal with?
SCOTT
Absolutely and one of the first and most important things when we offer a mood stabiliser to a female patient is to warn them about that issue and talk to them about the notion of either thinking about contraception and/or thinking about trying to plan pregnancies.
PORTER
And this is because of the possible side effects to the developing baby?
SCOTT
Well the difficulty here is obviously you have to weigh up the risks to the mother of another episode - a very severe episode of the illness.
PORTER
By stopping the medication?
SCOTT
By stopping the medication. And particularly with lithium because really she shouldn't come off lithium very quickly, so you normally would take four to six weeks to come off it and that would be quick in terms of coming off lithium, versus any risk that there might be to the baby. And we know, for example, one of the specific things one's described with lithium was some heart defects. Now the reality is this is a very, very rare condition but it's increased about four fold in women on lithium but it's still a very low risk overall.
PORTER
So plan, plan, plan, you hope.
SCOTT
If possible but don't panic ...
PORTER
If you haven't.
SCOTT
Go talk to people and I think Lisa described very nicely the collaboration with the clinician about how to handle the situation as it arose.
PORTER
One of the things Lisa mentioned was that her children may be at risk of developing problems later in terms of manic depression, how big is that risk, can you quantify that?
SCOTT
Well if one parent has manic depression then a child of that person would probably have about a one in seven chance of getting ...
PORTER
So roughly 10 times or more than ...
SCOTT
Yeah possibly 10 times but you're still again talking ...
PORTER
Most will not.
SCOTT
Most will not and if both parents then you might again be increasing the risk. What people inherit is the risk not the disorder, you don't automatically get it.
PORTER
And talking of the long term future is or are there any exciting developments in the pipeline?
SCOTT
Well I think there's several, I mean I think first of all we are learning more about the nature of what would be useful medications in terms of mood stabilisers, the psychological treatments research literature is evolving and evolving and there's some very good programmes coming through there. And groups such as the manic depression bipolar organisation developing self-management programmes where they take a lot of the responsibility for helping other sufferers and individuals with the disorder to develop ways to deal with it and there's some very interesting research coming through in the field of genetics and people at risk - there's fascinating twins studies going on.
PORTER
Jan we must leave it there. Professor Jan Scott, thank you very much. If you'd like more information about MDF - The Bipolar Organisation, or any of the other issues we have discussed today, then please call the action line on 0800 044 044 or visit the website at bbc.co.uk/radio4 - where you can also listen to any part of the programme again. Next week I'll be revisiting my past as a young hospital doctor and finding out what's happening at the cutting edge of modern medicine in a busy intensive care unit.
ENDS
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