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Thread: Trigeminal Neuralgia

  1. #1
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    Aug 2011
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    Trigeminal Neuralgia

    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.

  2. #2
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    Re: Trigeminal Neuralgia

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

    “Don't be afraid of death; be afraid of an unlived life. You don't have to live forever, you just have to live.” - Natalie Babbitt

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  3. #3
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    Re: Trigeminal Neuralgia

    That’s so kind, thanks ��

  4. #4
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    Re: Trigeminal Neuralgia

    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.
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    Nicola

    “Don't be afraid of death; be afraid of an unlived life. You don't have to live forever, you just have to live.” - Natalie Babbitt

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  5. #5
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    Re: Trigeminal Neuralgia

    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.

  6. #6
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    Re: Trigeminal Neuralgia

    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

  7. #7
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    Re: Trigeminal Neuralgia

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

    “Don't be afraid of death; be afraid of an unlived life. You don't have to live forever, you just have to live.” - Natalie Babbitt

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  8. #8
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    Re: Trigeminal Neuralgia

    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?

  9. #9
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    Re: Trigeminal Neuralgia

    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?
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    Nicola

    “Don't be afraid of death; be afraid of an unlived life. You don't have to live forever, you just have to live.” - Natalie Babbitt

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  10. #10
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    Re: Trigeminal Neuralgia

    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

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