Too young!!

Posted , 4 users are following.

Hi there, I guess if you are reading this you have or know someone who has been diagnosed with TN - I can only describe it as hell - and as no-one has really heard of it there is a tendancy to feel very isolated and almost as if you are imagining it - when you are not!!

I am only just 30 and too young to have this I have 2 boys 9 and 10 and at the moment I must admit I am not coping at all well - have tried to continue working - but it is difficult.

I have been prescibed amitriptyline and gabapentin but am not getting on well with them.

Hope your experience is better.


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5 Replies

  • Posted

    hi just thought id let u know that i also thought i was too young, im 34 have 4 children 12, 11, 8, 4 im married and also have a job which im just about holding down. I ws diagnosed about 4 mnths ago, i have been having attacks 3-4 times out of a week of which last on average 3-4 hours of excrutiating pain sad I have been going to my doctors every week im on 1200mg of carbamazepien, i have recently been given diazepan, i have also been given numerous other pain killers including oramorph and nothing touches the pain. I also think how im going to cope for much longer ! Im begining 2 come to the point were i dont want to leave the house as im scared an attack will happen. I really do hope things work out for us all it is totaly unfair. take care now.
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  • Posted

    hi i suffered with server pain in my left side of face for 7 years i was passed from 1 doctor to the nxt i went to a&e many times and they kept saying they didnt know what it is ...i had all my back teeth out i had many eye texts ...i was even told i was having mild strokes had cat scans ,brain scans and they still couldnt find nothink untill 4months ago when i seen a new doctor and he diagnosed ..TN.. the pain has gone from my left side to my right side and i now live in agony .....IM ONLY 27 NOW SO I WAS ONLY 20 WHEN IT CAME ON ME .....and the doctors told me nothink can be done about it only medication( BUT THEY DONT SEEM TO WORK)...IV GOT 5 KIDS AND WHEN THE PAIN STARTS I JUST DONT FEEL LIKE CARRYING ...I CAN ONLY DESCRIBE THE PAIN AS WHEN YOUR IN LABOUR( LIKE CONTRACTION....i never relised others was suffering the same as me untill i done my resurch on here...xxxxxx
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  • Posted

    Hi everyone

    I've just been reading through your experieces and feel your pain - literaly! I've had TN on top of another Neuro condition since I was 25 - 15 years now and well, not sure what to still hurts, yes it gets you down for sure, and if tears running down my cheek didn't hurt I'm sure there would be more of them!!! I'm not sure if there's any proven connection, but I've found slight relief from acupuncture and taken vit B12 on top of the 'lovely' (?) Tegretol and it's side effects! - might be worth a try for some of you?

    Hang in there - someone somewhere will come up with a helpful soluton - in the meantime, it's great to have somewhere to share your pain and experiences. I came on this website just to see if I could find some information to show my new husband as he struggles to understand why this pain is so debilitating - and I found sound fab info and also you fellow sufferers. It's great to know I'm not alone.

    Good luck.

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  • Posted

    I'm pretty sure I have TN. There's nothing else even similar I can relate to. I've had this pain since I was 20. It's sort of like more aggresive pins and needles in one side of my face, just above my lip.

    Anything can trigger it. I've really started fearing getting colds, as sneezes are such a problem.

    It's gotten so bad that I can't wear make up in that area, blow my nose, eat on one side. I grit and bare whilst brushing my teeth and washing. Even smiling sets it off!

    But what's strange is, that it will last in sportatic attacks for about a week to a month, then I won't have it for at least a few months even a year. This just makes it all the worse when it comes back.

    I've been to the doctors and they've just shrugged or said it was a muscle spasm or head ache. I know for sure it's not those.

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  • Posted

    Hey Guys,

    Yeah i was diagnosed with it too. I am only 23 and had it since 22. my eye takes the worst of it. It becomes very tender and watery, but the headaches, my god they are painful.

    I was perscribed Tegretol however, this only seems to be a temporary fix and i have no pain for about a month or two after a box. Then it just comes straight back again.


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