My TN pain has me at breaking point

Posted , 5 users are following.

So I was told by my dr last year I have TN. After taking over a year to be diagnosed the pain I could handle to start with but now it's just so unbearable the dr had me on tegritol for 6 months the took me off them and told me take paracetamol and if the pain gets bad return I returned and was told he didn't want to put me back on them just now. Are there any alternatives out there? 

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  • Posted

    Get back on Tegretol and see a Neurologyst as soon as possible. Contact TN association they re people that are sufferas. I've had it since 2005 .     I know your pain. Also a sight called OUCH.    Good luck.

     

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  • Posted

    Agree with Angie

    Get back on Carbamazepine as soon as you can, especially if you found it to be effective before. Paracetamol does absolutely nothing.  Can’t believe your GP thinks he “doesn’t want to put you back on Carbamazepine just now” - what on earth is he doing? He’s certainly not looking after your welfare. 

    Get a referral to a neuro Team and they’ll do an MRI or CT to confirm diagnosis. Then they’ll offer you several choices based on your own findings including likely success/outcome. 

    Yes, the UK TNA site is very good for advice and they have loads of very useful literature and an active and effective helpline 

    Good luck

    Keep us informed of progress 

    Cheers

    Big D

    Are you in UK, 

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  • Posted

    Hi,you need to get back on Tegretol as soon as possible .You should always wean yourself off such a drug slowly,especially if you've been on it some time.My daughter has been taking it for years.If she misses a dose,she gets breakthrough pain-because we have worked up the dose to be effective,but no more .She is taking gabapentin (or Pregabalin,the modern version of Gabapentin) as well,but it makes her brain foggy,so we cut down the gabapentin and upped the Tegretol.Works well.Paracetamol does nothing for nerve pain like TGN.Your doc is simply trying to save money at your expense.Not nice.You need a referral to a specialist unit.My daughter went to The Walton Centre,next to (and part of) Aintree Hospital in Liverpool.She saw a neurologist there who arranged an MRI scan.It showed a vein looping over the nerve,The neurologist will explain all the options open to you that they can do there-including working out the right dose of painkillers.Good luck.X Beth

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  • Posted

    UPDATE.     

    Just been to doctors and was put back on tegretol he also mentioned surgery. What would you do with the option of surgery?

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    • Posted

      glad you've been put back on Tegretol.Now what you n ed to do is look through a lot of the personal "case histories" and experiences you will find on this site.There are quite a lot of different types of surgery and only you can work out which is best for you.Don't be afraid to ask people what they experienced.Those with TGN are a kind bunch,as they know how nasty the pain is.There will be a few along to help you here, with better info: than me ,I'm sure.Good luck.X Beth

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  • Posted

    Hi Patrick,

    I had Microvascular Decompression surgery back in June of this year. Best thing I ever did. Was out of the hospital the next day.

    The Carbamazepine was losing effectiveness and I was at maximum dosage with the pain still coming on. I was lucky to find a surgeon with a lot of experience in this field so if they have that option for you, I'd suggest looking into it because TN just isn't going to go away.

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