TN feature on BBC Radio programme

Maybe nothing new to learn but nice to know that TN was discussed on the BBC Radio 4 health programme.

http://www.bbc.co.uk/programmes/b019dl1b is the link if you would like to read a transcript of the programme and I think it might be available on the BBC i player

I saw this, but I live in the US, so I could not pick it up.

Sorry I didn't realise the BBC site was unavailable over there. I have copied and pasted the item below:

Amanda e-mailed us to ask about trigeminal neuralgia. She was diagnosed with this comparatively rare but nasty condition that causes severe shooting pains across the side of the face back in February. Her GP’s put her on the standard treatment - carbamazepine - to help but, while it helps the pain, it has left her feeling sick and wobbly. And if she stops the drug the pains come back.

An all too familiar story to Ann Eastman who developed trigeminal neuralgia a few years ago:

Eastman

I was brushing my teeth and I suddenly had this absolutely unbelievable pain, it was a combination of an electric shock and an electric drill going into my head. And I was just standing there screaming and screaming because the pain was so unbelievable. And then it subsided and I had no idea what it was. The next morning at breakfast it started again.

Zakrzewska

My name is Professor Joanna Zakrzewska, they all know me as Zak for short because it’s too difficult to pronounce and my area of particular expertise is the facial pain. Trigeminal neuralgia, luckily, is a rare disease that causes an electric shock to go through one half of your face. In most of the patients it’s due to a vessel pressing on the nerve and this causes the myelin sheath, which is the protective cover of nerves of different types, to get worn away and as a result of that you get cross talk between a nerve that transmits light touch and one that transmits sharp pain. And then as the myelin tries to heal itself so the nerve can regenerate and therefore get a period of pain remission.

Porter

And are the changes in the outside covering of the nerve – I mean is that age related, is that why it’s something that happens generally to slightly older people?

Zakrzewska

It could be, it’s also that the brain tends to shrink with time, we also develop high blood pressure with time so the vessels can become more tortuous and the relationship between the blood vessels and the nerves may change with time. But we still are struggling with trying to find out what really causes this dreadful condition.

Porter

What’s the natural history of this disease – I mean looking at our listener who’s had it for six months now, what can you tell her about her likely future?

Zakrzewska

This is something that all patients ask us and it’s very difficult because we have no cohort studies, that is studies that are looking at patients over a period of time. I have started one and some patients get long remission periods and have no pain for quite a long time, get short episodes of recurrence of pain and it goes away and they can go on like this for 10, 20 years. Others it gets very severe very quickly and within five years we’re already doing operations on them.

Porter

In your experience as a specialist in this field, looking at the patients that you’ve seen come in, what are the common mistakes that are made by GPs or maybe dentists that are seeing patients with this condition?

Zakrzewska

Very often in fact the patient first goes to the dentist because the pain presents more typically in the lower part of the face rather than the upper part of the face and of course both the patient and the dentist feel convinced it’s a dental pain. And then when they go to the medical practitioners then they’re at a loss as well, they will often send their patients to the dentist, also thinking it’s a dental problem. In fact quite a high proportion of patients will lose teeth as a result of misdiagnosis.

Eastman

I rang up my dentist and said I’ve got the most terrible pain and it seems to be manifesting itself from my temple down to my lower jaw. And so he said come in straightaway. And he couldn’t see anything wrong but he said it looked to him as though the nerves were beginning to – in that tooth – were beginning to fuse and he said I think you’ll probably have to have that out. The effect of the injections wore away and then the pain was still there, there was no tooth but the pain was still there in that exact spot. You dread cleaning your face because when you clean your face it triggers it off. You dread cleaning your teeth, so you end up just sort of giving them a quick rinse with mouthwash. It seriously impedes your life and it’s not because you’re thinking about it because you think every time it goes away you think oh it’s gone, it’s gone and then it comes back.

Zakrzewska

They can become quite socially isolated because they can’t talk, can’t socialise, can’t go out anywhere, can’t eat and drink, can lose weight. In a very rare proportion of cases it could be due to a tumour sitting there as well and so we need to do MRI scans on patients to pick up any of these tumours. But to begin with we start with treatment straight away.

Porter

And that treatment is?

Zakrzewska

An anticonvulsant called carbamazepine and there’s no doubt that this drug just turns off this diseases immediately, at least at the start on the first episode.

Porter

Our listener who e-mailed us in has been on carbamazepine for six months and is struggling – two fold really – with quite a few side effects and not got good control of her pain. When she’s been on the drug for that long what happens next?

Zakrzewska

Well firstly we have to find out how responsive they’ve been to it and therefore potentially rethink the diagnosis because there could be variations on this condition. And of course we know that this drug causes significant side effects. So the next drug of choice is a daughter drug of this drug called oxcarbazepine, which works very well and seems to have fewer side effects. I think once we’ve tried one or two drugs, to which they have initially been responsive but now are no longer responsive because they’ve had to increase the dose and the side effects are stopping it and the quality of life has significantly impaired then we will consider surgical options.

Eastman

My dentist rang me up and he said I’ve just tracked down somebody in the Eastman Dental Clinic, who is a specialist in facial pain and might be able to help. Just as I walk through the door I had the most terrible episode and I just sat there whimpering as she was sitting there holding my hand and she said classic case, classic case. I was put on the drug and pretty much 12 months afterwards it came back again but this time I knew what it was, I had the medication at the ready so I wasn’t frightened anymore.

Zakrzewska

Fear is a big driver and some studies done in France at the moment have shown that patients with trigeminal neuralgia may be triggering their fear centres in the brain. And so we’re running a programme just exclusively for patients with trigeminal neuralgia to help them cope with flare ups, decide on some strategies, looking at other ways of relaxing, mindfulness – as ways of trying to manage some of these fears of pain.

Porter

So are you saying that fear and anticipation of this awful pain coming can actually fuel it?

Zakrzewska

We think that that might be true and some early studies in France are suggesting that this could be a factor as well.

Porter

Professor Joanna Zakrzewska talking to me at the Eastman Dental Hospital in London.

Thanks for posting this, it is great for me to show my friends and family so that they can understand better. As I say on twitter #awareness.