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Newly diagnosed with TN

Posted , 4 users are following.

dawn56052
dawn56052

Hi I'm 46 and have been suffering with what I have been told by gp is TN. I'm currently taking 600mg of tegretol and have been for last three months . It has stopped the terrible pain but I  still have the numb patches around jaw and left side of head very sensitive . I have a  MRI booked for this Saturday finally and hoping this will give me some answers to what's going on and what can be done. My gp has told me that I'm taking quite a high dose but as I'm still feeling things going on there is no way I can reduce them and go through what I can say was the worse pain I've ever experienced in my life and that's after having two children. What I want to know once you have been referred to a specialist do they try to godown the route of medication first to solve it or do they consider straight away the surgical route ? Any advice would be great 

1 like, 6 replies

6 Replies

  • lee12629
    lee12629 dawn56052

    Posted

    I have a friend with tn,with her the medical route was used for years,and kept it under control,i believe she was up to a 800 mg dose
    • dawn56052
      dawn56052 lee12629

      Posted

      Hi lee, 

      I did try going up to 800mg but couldn't tolerate it . I had really bad hives and was falling asleep all the time I just couldn't function on it and it still didn't take away the symptoms I was having . Let's just hope the mri gives me some answers but just hope I don't have to carry on like this forever. 

  • mallory22442
    mallory22442 dawn56052

    Posted

    My experience was as follows: My MRI showed that the trigeminal nerve was  being compressed in places by the cerebellar artery > this is what seemed to give me the go ahead for surgery as far as my doctor was concerned In the end the surgeon found the artery had wrapped around the nerve in 3 different places which is why I had pain that was so severe that all I could do was scream!!!! Good Luck to you and God Bless!! 

    • dawn56052
      dawn56052 mallory22442

      Posted

      Hello Malory

      Thank you for replying. Just hope it's not to long before I have some answers. Will keep you posted . Hope your feeling okay now . 

  • wavedancer
    wavedancer dawn56052

    Posted

    Hi Dawn,

    I had a MRI which showed up the nerve wrapped around blood vessels. However, not everyone has a positive MRI, but that doesn't mean they don't have TN. Once you see a neurologist he will take a history and then decide what he thinks is the best option for you. Tegratol wasn't helping me very much even though I was taking 1200mg daily. It did take the edge off at first but over time it wasn't enough. I couldn't take any of the other medications that sometime help because they made me feel suicidal. The side effects from Tegratol were horrendous at such high doses. I think people who haven't experienced TN pain themselves can't understand how bad it is. Childbirth was a doddle compared to TN!

    I was offered an MVD and was talked through the other options available too. I decided that the surgery was the right thing for me. I waited from the end of November last year to the middle of February this year for my MVD. Seven months on I know I did the right thing for me. Waking up pain free from the op was amazing. I couldn't believe the pain was gone. I kept tapping my face to make sure I wasn't dreaming. Seven months on I know I did the right thing. If/when it comes back again I would have no hesitation in going down the same route. I've got my life back and without the Tegratol I'm back to my old self again and am able to enjoy it.

    When you see the neurologist talk through the options. If you opt for an MVD ask how many he has performed. My consultant had done lots before so I felt confident about him doing it right. Don't be afraid to ask questions. At the end of the day you have to make the right decision for you. Read up about other options too so you understand how they all work. Ask questions here too. It's a very supportive group and everyone is here for the same/simular reasons. There is a wealth of knowledge and experiences so someone is sure to be able to reply.

    Take care and let us know how you get on.

    Best Wishes,

    Chris

    • dawn56052
      dawn56052 wavedancer

      Posted

      Hi Chris,

      Thank you for sharing your experience with this. Yes your right I don't think people really understand how painful this can be . The thought of ever having an attack like that again is something you never want to experience again but at the same time to also have the constant feelings that side of your head and face is not something you want to live with either is it. Eating on my other side also gives you pain and I worry sometimes that the pain is staring there too, but I'm sure it's just the extra stress with eating on that side more . Just have to be positive there is a  good outcome to it . Will update with results . It's nice to  share with other people that understand . 

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