Trigeminal Neuralgia

[Pigeon]

Hi

Does anyone have any experience of this? My 39 year old son has had a history of facial pain for the past three or so years and has been ping-ponged between his Gp/dentist during that time. Last week it intensified quite dramatically (unbearably) and during a phone consultation the GP told him he had it and prescribed some medication with nasty side-effects.

She told him there was a six month waiting list to see a consultant , so he went private. After a thorough examination the consultant said it was too early to consider TN and he’s now booked in for a CT scan. he said consultant didn’t seem too concerned and thinks it may be salivary gland problems.

I’m a long term HA sufferer and my worry is that it’s TN. Dr Google says that it’s ‘the worst pain known to man’ and that it’s nicknamed the suicide disease.! It gets progressively worse and although can be treated in some case, it doesn't work for everyone.

when I’m being rational, I remember that it’s extremely rare (12 people in 100,000) affects women more than men and usually those over 50. Also, he can sometimes reduce the pain by applying pressure to his salivary gland - so maybe it’s that?

when I’m not being rational, I’ll I can think about us that he’s doomed to a lifetime of agony.

I can’t stop thinking about it and I’m driving myself mad.

[nomorepanic]

I know a bit about this but just popping out so will reply more later.

[Pigeon]

That’s so kind, thanks ��

[nomorepanic]

My sister had had this for over 20 years and it comes and goes - she hasn't had an attack for over a year now but when she gets them the pain is unbearable she said.

I am also working with a 25 year old male who has been going through this for over a month now and he is screaming out in pain when he gets the attacks which can happen up to 15 times a day.

He has seen a private neurologist and has an MRI on 12th Dec.

He has been given some anti-epilepsy medication as that is how they treat it.

I think if your son had this he would be in absolute agony when he gets the pain.

I am pretty sure the consultant would know if it was TN or not with basic examinations etc so he may not even have it.

[Pamplemousse]

One of my aunts suffered with this for years. In the end surgery was carried out as nothing else worked and as Nic said in the post above, it is a severe and debilitating pain.

[Pigeon]

Thanks to both of you for replying.

My son is having up to twice-hourly attacks throughout the day and night and says the pain is excruciating. Having said that he quickly recovers very quickly after each one. What gives me a little comfort is that I read that those with TN usually don’t get it whilst asleep, but he does. Also he’s able to reduce the pain slightly if he presses his tongue against his tooth or presses his salivary gland.

we may know more next week after the CT scan, so here’s hoping everything goes well.

thanks again for taking the time to reply x

[nomorepanic]

The lad I work with has the attacks all night as well.

[Pigeon]

Well it sounds grim. I can’t bear to think he has to live like this for the rest of his life. How on Earth do people cope?

[nomorepanic]

I think it is one of those things you learn to live with like with any long term illness. He hasn't been officially diagnosed yet though has he?

[Pigeon]

His GP said it was that but the Consultant said it was too early to say. Whatever it is, it’s horrendous. I’ve just been to visit him - he had several attacks whilst I was there and it was horrible to see him in so much pain

[nomorepanic]

Hopefully the medication will work soon - what did they prescribe?

[Pigeon]

Carbamazepine I think. He won’t take it until he is certain of his diagnosis as he’s worried about side effects.
I don't know how to help him and he seems so angry.

[nomorepanic]

That is what my sister takes. If he starts it now though the pain would ease up in a few days.

[Pigeon]

Yes hopefully it will work once he starts to take it but it’s persuading him to do it. I think as well as worry about side effects, he thinks it’s just masking an underlying problem. He says he thinks he can cope with TN diagnosis as long as it’s nothing sinister that’s causing it. I think the pain is making him irrational as that should be no reason to not take something that will help.

I really do appreciate you taking the time to answer. I’ve been quite upset and it helps to talk.

can I ask if your sister manages a reasonable quality of life?

[nomorepanic]

My sister usually knows when she is getting an attack coming on so starts on the medication. She has learnt to accept it will happen sometimes but the episodes can be years apart.

[Pigeon]

I thought I’d already updated this but it seems I didn’t.

Anyhow, just thought I’d say thanks to those who replied and let you know the outcome. Apparently the horrendous pain was caused by a bad infection under his tooth and not TN! Apparently he has had several x rays previously where this was missed so his GP ruled out tooth problems and jumped straight to the TN conclusion.

Obviously there needs to be an explanation from the dentist about why this was missed - especially as it’s been very costly and the root canal treatment will add significantly to this.
Also, without wanting to criticise the GP, I do think it doesn’t help that they are under so much ( pressure and face-to-face consultations are rare at present.

Still, all’s well that ends well . Thanks again for being so kind 😀👍

[nomorepanic]

Oh sort of good news then.

The young lad I work with has still got problems and they have found a cyst on his brain so he is waiting for brain surgery!