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Programme 3. - Essential Tremor
RADIO 4
THURSDAY 11/08/05 1500-1530
PRESENTER:
BARBARA MYERS
CONTRIBUTORS:
LESLIE FINDLEY
PRODUCER:
ERIKA WRIGHT
NOT CHECKED AS BROADCAST
MYERS
Hello. Getting the shakes is understandable if you're especially nervous or if you've been stacking up on the caffeine. But some people, maybe two or three in a hundred, have a medical condition which causes them to shake or tremble much of the time for no apparent reason. You may have noticed someone whose head nods and shakes either side to side or up and down in a no, no or yes, yes rhythm. But it could be the hands or the voice that tremble and oscillate. The condition which is known as essential tremor is disconcerting at best and it can be disabling, yet it often goes unrecognised and sometimes misdiagnosed.
So today it's your chance to ask about essential tremor. What causes it? Does it run in families? What treatments are available and how can you manage the condition yourself? Call us now with your questions - 08700 100 444 - or you can e-mail checkup - that's one word - @bbc.co.uk - and put your questions to Dr Leslie Findley, who's a professor of neurology and the medical advisor to the National Tremor Foundation.
We've got our first caller ready, willing and able, so let's go to Vivien Green in Beaconsfield, whose son has benign tremor, with shaking in the head. Your question please for the Professor Vivien.
GREEN
Oh good afternoon. I've got a son who's now in his early 30s and has had since childhood a benign tremor of the head. It was diagnosed as a benign tremor when he was about 19, 20. And it happens when he's concentrating hard on something and I just wondered if this would be likely to develop into anything worse as he gets older...
MYERS
Very fair question, something that must worry you and I guess others. Do these things lead on to something else Professor?
FINDLEY
Well the tremor that's just been described almost certainly will not. He will obviously - it will not go into remission, he will have his head tremor, but it won't develop into any other disorder.
MYERS
I mean how's he coping with it, is that an issue Vivien?
GREEN
Well he copes with it fine now. When he was a child I think it bothered him and as he grew up through his adolescence I think it bothered him a bit. But he just copes with it now.
MYERS
And so it's reassuring then to hear that it's not going to get any worse and nor is it the sign of anything else, I think that's something we should try to point out.
FINDLEY
No tremors can arise from all sorts of reasons - from dysfunction of the nervous system. But the tremors that are being described - these long term mono symptomatic tremors - are unfortunately given the word benign, it's not benign for many people because they're disconcerted by it. But it doesn't lead to anything else.
MYERS
That's good news. Thank you very much, I hope that has been reassuring. Let's go to another caller, in Birmingham it's Jackie whose husband has essential tremor, has had this condition for a number of years. Taking tablets but not very happy on them, what's the problem Jackie?
WEST
Well he's not taking any tablets in fact. I managed to persuade him to go to the doctor who prescribed him beta-blockers but they took, he said, all the energy out of his legs and he's a keen cyclist and he said he'd rather have his hands shake than lose the energy to cycle, so he refused to take them. And his belief is that anything that he might take would have the same effect and so he's refused to go back to the doctor or to try anything else.
MYERS
Is there a problem with that, does he think that's a problem?
WEST
Well it's probably more my problem than his. It does embarrass other people, I know that, and it does embarrass him socially - if we go out he won't drink and he's reluctant to eat because his hands shake so much.
MYERS
Okay, over to Professor Findley.
FINDLEY
Well non-selective beta-blockers, such as Propranolol, can be very effective in suppressing tremor. What he has noticed is common and that is that they produce fatigue as a side effect in many patients. But these drugs can be used intermittently. If an individual knows their tremor is going to be troublesome or get worse in specific predictable situations then they can take the drugs before they go into that situation. A lot of people find that's a much preferable way of using the drug and avoids the side effect which he has noted.
MYERS
So he could perhaps take these drugs when he's not cycling - I mean is that a possible way forward or would he not countenance that, do you think, you know him well Jackie?
WEST
It depends on how long the drug takes to work its way out of the system - he cycles three or four times a week.
FINDLEY
Well he's certainly got his priorities right in life and he knows what he likes and I think that means he's well adapted to his tremor and it's obviously for him not as troublesome as it is for others. But it would take about three to five hours for the effect of the drug to wear off. And many surgeons will use beta-blockers during the week and come off them at the weekend when they're indulging in more physical activities.
MYERS
Okay I hope that helps, thanks very much for the call. We'll go to Wales and to Liam Martin, 16-year-old I think, Liam are you there and what's your question about essential tremor?
MARTIN
Yeah hi. I've been - I was diagnosed about two years ago with an essential tremor and every now and again periodically my tremor will get worse and I also get a sort of dizzy spell where I get the sensation that I'm falling off the edge of a cliff and I can't stop myself and I lose concentration, I lose balance, and this can happen for eight to nine hours at a time. And I was wondering is this something that often happens with essential tremor?
MYERS
Well let's hope not because I've been saying all along this is not a dangerous or - it maybe troublesome but it's not a dangerous thing - but it would be dangerous if people had dizzy spells, so Professor Findley?
FINDLEY
The symptoms that this young man describes are not related to essential tremor directly. I note that he's taking beta-blockers, again beta-blockers can lower blood pressure and some people find they produce dizziness and I think it would be wise for him to be properly assessed by a neurologist to see just why he's having these episodes.
MYERS
Are you seeing your doctor Liam?
MARTIN
Yeah I've been to - I've had tests and I've had an MRI scan, I'm waiting for an EEG, I think it is. I've had - I am - as you said - I am on beta-blockers. What I found, when I first went on these, the dizzy spells did seem to wear off and so it wasn't the beta-blockers that brought them on. But as the months have gone on with me on these beta-blockers they've come back, even worse - as if they're getting used to it.
FINDLEY
There are many causes for the symptoms you complain of. It does require proper evaluation, which you're clearly having, and I'm sure at the end of your investigations you'll be given a definitive answer. Beta-blockers can produce some bizarre effects in the nervous system but for most people they're very well tolerated.
MYERS
And perhaps I could just ask, for the benefit of others, if you are not getting on well with beta-blockers, if they do cause dizziness or as we heard earlier they make your legs feel tired if you want to go cycling, are there any other obvious alternative drugs that the doctor could offer that can be effective without the side effects?
FINDLEY
Well the - there are no specific drugs for essential tremor, unlike other disorders of the nervous system. And so all the drugs have a wide spectrum of effects. Beta-blockers, used properly, particularly intermittently, for many patients are a great salvation. The second drug would be Primadone, which is an anticonvulsant and works in a different way. Some patients are sensitive but if it's introduced and built up slowly it can produce very good effects without side effects. Again the individual should really be under the care of someone who's used to managing tremors.
MYERS
And it sounds as though Liam is in good hands, we wish you well with that. Thanks very much for coming on the programme and telling us about it. And just picking up that a little bit further. Would the right person be first your GP, then a neurologist?
FINDLEY
Well the general practitioner is ultimately responsible for all of us but he has a wide brief ...
MYERS
He or she.
FINDLEY
Sorry he or she has a wide brief, more she now I guess. But he or she would almost certainly want to refer the individual to a specialist at least once in their history for a proper - for a more detailed evaluation. And it should really be a neurologist and specifically a neurologist with an expertise in movement disorders because as neurologists we're all becoming ultra-specialised and I think it's important that it's horses for courses - the right person to assess this sort of problem.
MYERS
Okay thanks. We'll go to an e-mail which has come in from Mary, who's happy that we're giving this condition an airing, obviously not really much talked about, and she's talking about having this - well she calls it "benign familial tremor", as does her father, who's 90, and she's 63 - so we can see it's not life threatening. But she is a lecturer and has been advised by her consultant - she doesn't say if it's a neurologist - but advised that an alcoholic drink before lecturing might help her with her shakes. She thinks that's a bit risky, what do you think?
FINDLEY
First of all I dislike the word benign, but everyone - many people use it because it's not benign for many of us. Alcohol will suppress tremor, this type of tremor, in about 70% of patients - a small quantity. The problem is, as it wears off, there's often a rebound tremor, in other words the tremor gets worse. There's also the problem that alcohol has other effects in the nervous system - it affects on cognitive function and so on. So yes in a social situation a sensible individual could take a small quantity of alcohol before starting an event but I would use it with caution. There are many descriptions of patients who have had to take more and more alcohol to get the effect they want on the tremor and then of course they'll develop tremors for other causes as a consequence of alcohol.
MYERS
Okay, that seems like fair advice. Let's move to another caller, who's waiting, prefers not to give her name but has got essential tremor, thinks it connects with the death of her husband, so could you say a little bit more about that?
ANON
Yes good afternoon.
MYERS
Hello.
ANON
I - my husband died just over three years ago and unfortunately after that I rather went downhill, after a year or so, and I now am at a stage where I have had a diagnosis of essential tremor which has totally changed my life. I can't write, I can scarcely sign my name, I find it appallingly embarrassing and very difficult to live with.
MYERS
I'm very sorry to hear that. How might we be able to help this caller?
FINDLEY
Well I would hope that she's been evaluated with - by a specialist and the cause of the tremor properly ascertained and appropriate medication and advice given. It may be for instance stress of any sort will exacerbate and make worse any movement disorder, particularly tremor and the stress of bereavement is well recognised as upsetting people with tremor and making their tremors worse.
MYERS
Is that to say that the stress of the bereavement might cause the tremor?
FINDLEY
No I don't - we don't think that, we think that the person may - we all have an inherent natural tremor and it may be that there was a sub-clinical tremor ongoing and then the stress of - long term stress of bereavement has brought it out but it didn't cause it. Stress itself will not cause essential tremor. And I think the management that's required is not only diagnosis and medication but probably more in the form of psychological support . Bereavement is a difficult time and has all sorts of impacts on the nervous system.
MYERS
So you're rather suggesting that psychological support might be helpful in general with this lady's bereavement, the fact that the essential tremor is there and is causing the embarrassment, is there any specific psychological support for that, because I think you did say that didn't you, that it causes you to lose your confidence when you're out and about?
ANON
Yes totally.
MYERS
Is that because people stare?
ANON
Well no but I've become - I've turned in on myself, to some extent, in that I'm just so worried about being asked to write anything down or to write my name and address or to do any of the normal things that one does.
MYERS
And is anyone helping you or are you struggling?
ANON
Oh I have a very helpful family. And I've also seen a consultant and the Propranolol and the beta-blockers are part of what I've been given. But as I say it has made not one whit of difference.
FINDLEY
I think you've diagnosed yourself in the sense that you've changed and you've turned in on yourself and all these aspects could be helped professionally. Families are very important and we can't survive without their support but professional input's going to be required.
MYERS
Some psychological counselling perhaps. Talk to your GP about that and see if anything can be arranged and thank you anyway for coming on the programme. We'll go to another e-mail which is from Ray - Raymond - and he's got the problem. He's interested in causes. In his case he says he has ECT, electroconvulsive therapy, he had depression at the time, back in the 1970s and he's suspicious because he thinks this may have caused the development of the shakes - could that be right?
FINDLEY
No, we don't think that sustained tremor can arise from causes of ECT. However, patients who have ECT are often taking other medications and many medications working through the nervous system can produce tremor as a side effect.
MYERS
And Ray goes on to ask whether hypnosis might be helpful.
FINDLEY
Well unfortunately not in the long term, if you hypnotise someone with a tremor you will get rid of their tremor during the hypnotic trance. When they come out of the hypnotic trance the tremor will return.
MYERS
What about auto-hypnosis though, isn't there something you could learn and perhaps practise?
FINDLEY
Well certainly - certainly relaxation techniques of any type will help patients, particularly those that are of a nervous disposition and the nervousness is exacerbating their background tremors.
MYERS
So there's an interesting area here of overlap isn't there, because people do shake when they're nervous and perhaps they confuse sometimes the fact that they're nervous about doing something with the fact that they've got essential tremor and vice versa.
FINDLEY
The mechanisms that will make you and I shake will also upset and exacerbate the tremors of those patients with essential tremor, it's the same mechanism that makes it worse.
MYERS
And because in some ways if you are nervous you get used to perhaps making public presentations you can't train yourself out of the shakes can you if it's essential tremor?
FINDLEY
If it's essential tremor, no. Obviously if you're a seasoned campaigner like yourself your tremor probably wouldn't get worse if you were in front of a camera. But for the average person it would get worse. And again the medications we use to suppress tremor may be useful, in particular beta-blockers, which are widely used by professionals.
MYERS
Okay, we'll go to another caller now and someone again who doesn't want to give her name but her doctor thinks that she has Parkinson's Disease. You don't think you have, you think it is essential tremor. Can you tell us a little bit more about that before we get Professor Findley to advise you?
ANON
Yes, hello?
MYERS
Hello. yes.
ANON
Yes certainly. Back in April I was preparing for an examination, I noticed I was unable to write - I'm left handed - and I was shaking. I went to my GP, I managed to see a neurologist privately, who felt that I had idiopathic Parkinson's. But there are anomalies. For example, I don't have an [indistinct word] tremor, I shake when lifting cups, drinking, eating soup - the typical symptoms of essential tremor. And in fact I've done a lot of research and I feel my symptoms are more in line with essential tremor. My GP, in fact, has said that I know more about this than he does.
MYERS
It sounds like it, you've used quite a lot of long words including "idiopathic" in relationship to Parkinson's, perhaps we could start there - what is idiopathic Parkinson's and then what is Parkinson's and what is the difference between Parkinson's and essential tremor? I'm asking the Professor at this point.
ANON
Oh I'm sorry.
FINDLEY
Idiopathic means we don't know and it's a word we like to use when we don't know the cause. So idiopathic Parkinson's Disease is Parkinson's Disease and we don't know the cause of Parkinson's Disease. Yes the differential diagnosis between Parkinson's Disease and essential tremor can be difficult, hence the need to see a specialist.
ANON
What's bothering me is in fact - I'm sorry to interrupt - is in fact that no one has yet mentioned essential tremor and yes many of my symptoms are more in line with essential tremor than Parkinson's.
FINDLEY
I take your point but on the radio it's impossible for us to give a comment on your tremor. You have been seen by a specialist whose given you an unequivocal diagnosis. I gather you're going to be assessed again ...
ANON
It wasn't an unequivocal - I beg your pardon - it wasn't unequivocal, he said he was almost sure but he refused to give a diagnosis, which is why I'm now waiting for - to see another neurologist - he wouldn't confirm a diagnosis.
FINDLEY
Well let me say that you're doing the correct thing - you're going to an expert, you're going to be properly evaluated and eventually the correct diagnosis will come out. But to make the general point - the differential diagnosis between essential tremor and Parkinson's Disease can be very difficult, at the diagnostic phase of Parkinson's Disease. So the fact you're seeing a specialist is all to the good and it will resolve your difficulties.
MYERS
Should we be entirely clear here though that there isn't any real connection, there are some obviously symptoms that can perhaps seem that one would mimic the other, but for example essential tremor doesn't lead to or imply Parkinson's.
FINDLEY
Hereditary essential tremor and the associated conditions of essential tremor do not lead to Parkinson's Disease. But they share phenomenology, in particular tremor, and it's understandable why an older person who may be a bit slowed up for other reasons and develops an essential tremor may be misdiagnosed as Parkinson's Disease.
ANON
Yes, I also feel that I don't fit the profile. I'm 51 and that's fairly young to have Parkinson's. And also female, which ...
FINDLEY
My strong advice is to keep away from the internet and to go to this doctor that you're going to see, this specialist, and put yourself in his hands and say - Tell me what it is - and if he can't tell you there and then he may want to observe you over time. But if you treat yourself and diagnose yourself you have a fool as a patient and a fool as a doctor.
ANON
Thank you. Is there anything I can do for myself in the meantime?
FINDLEY
I think wait for it - wait for the evaluation.
ANON
Okay, thank you very much.
MYERS
Thanks for the call. We'll go to Yorkshire and Andrew Barclay is on the line, who has ET, I think, and has had it for a long time.
BARCLAY
I have indeed, ever since I was born.
MYERS
Oh really.
BARCLAY
And you know it's been a plague and a worry to me for all my life really.
MYERS
What's been the worst bit of it then for you?
BARCLAY
Meeting new people. But I've found that I always - when I met anybody knew I always said I've got essential tremor, it's like a stammer, only it comes out in my hands. So I - you know everybody knew where they stood with me.
MYERS
So that's quite a good way of putting it, it's like a stammer that comes out physically in your hands. So you managed to at least be up front about it.
BARCLAY
Indeed, indeed and it's not only done that but it's helped me in many ways because there are lot of people who have said - Oh well I had an aunt - or - I had an uncle - or some relation who's got that problem and you immediately meet them at a different level than you would just as an occasional ...
MYERS
So are you saying Andrew in the end you've turned what might have been a sort of negative situation into quite a positive one in your life?
BARCLAY
Well yes and no. I mean I can't write or draw but I can write with very great difficulty. But I have been design manager for Samuel Websters for 25 years or had been, you know, thanks to the alcohol, I find a slug of alcohol before a meeting or anything like that is tremendously helpful to me because it does relieve the shakes to a degree.
MYERS
Okay, look I'm going to stop you only to say thank you very much for letting us know that and just again - again just rehearse that argument about alcohol, if we may, for people listening in, because it's plus and minus.
FINDLEY
Alcohol will suppress tremor temporarily but there tends to be a rebound afterwards and if one gets used to alcohol to control tremor that you're liable to require increasing amounts and then you'll lose the effect.
MYERS
And Andrew was trying to make something very positive but I've got an e-mail that I'd like to finish with, which is from Patricia who says she's from a family of sufferers, we haven't said too much about that, but it does tend to run in families or can do. The tremor is not hugely apparent, she says, but her concern is that people treat you as if you're nervous when actually you're not and she does find that it's a stigmatising condition and there's a lot of prejudice out there. Would you comment on that?
FINDLEY
I would absolutely agree with that. I think our last speaker summed it up very well when he used "be up front" as a way of actually dealing with the problem, telling people immediately I've got an essential tremor and that immediately cuts the ice and stops the thoughts that this person may just have nerves or some other psychological problem as a cause of their symptoms.
MYERS
Okay, thank you very much, that's all we have time for. Thank you to neurologist Professor Leslie Findley for his expertise today. And thank you for all your questions, which have come in, in e-mails and by phone. You can listen to this programme again, if you've missed it, you can go to our website bbc.co.uk. And you can get more information if you would like to call our free and confidential help line, that number is 0800 044 044. And I hope you'll join me again next Thursday afternoon at 3 o'clock for Check Up when we'll be taking your questions on haemophilia and other bleeding disorders.
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