Neurologist

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I've had tn for two years is it right that i haven't been refferred to a Neurologist? I'm on carbamazepine they work well most of the time. But before i was on the medication it was horrific pain. I do have flare ups but not so much of the electric shock type that i find to be unbearable. I just read that so many of you talk about their Neurologist but it hasn't even been mentioned that i see one

Many thanks

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6 Replies

  • Posted

    Hi Alfie.

    I've just started with this pain I'm not sure if mine is AO or TN yet but the first thing they've done is start me on medication and refer me to the oral department at a hospital I've been told to see a neurologist and discuss a facial scan to diagnose me properly.

    This is all knew to me but I'm sure u would need referring to a specialist or how can they diagnose you?

    Sorry if I'm not much help

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  • Posted

    Yes, your practitioner should refer you to a neurologist or another specialist. My first one was an ENT specialist who did a facial scan and confirmed there was "nothing untoward" which meant no tumours etc. Then I was referred to neurosurgeon specialist. You can't have a diagnosis if you don't have these specialists see you.

    Are you in U.K.? If so ask your GP for a referral.

    Cheers

    Big D

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    • Posted

      Thank you Amy. My gp refused to make the referral so I had to go back to my dentist who has referred me to an oral dentist at the hospital think it's called max fax she said I'll have a consultation and then maybe offered a facial scan in the mean time it's trying to manage the pain as all these referrals take so long.

      There's just no immediate pain releif it's a nightmare.

      It's really bringing me down effecting me going to work and it's just waiting for the referral to come through that takes so long.

      I am slowly increasing my medication but am not seeing a huge relief yet.

      Thank you for your reply

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    • Posted

      Hey yes I'm in the u.k i originally went to the dentist because i thought it was a dental problem. Couple of my teath were hurting and i have pain in my lower gum the dentist done an ex ray and said my teeth and gums were healthy. He then said it could be TN so i took this information to the doctor who then said its possible so he put me on amytiptaline so i went away and started taking it. But over the next few days the pain got worse and worse and started spreading to my ear and my eye the side of my head the electric shock pain was horrendous. Couldn't brush my teath touch my face couldn't sleep so went bk to the docters and he swapped my medication to carbamazepine and after a few days it started working ive had to gradually up the dose over the last two years I'm now on upto 1600mg when i have bad flare ups but when it calms down for a while i drop down to about 600mg because I'm worried about getting amunne too quick. But the docter has never mentioned being reffered to a specialist.

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    • Posted

      Hey Alie

      Being on Carbamazepine for such a long time should be reason enough to get referred to a neurology department. You are on the same regime that I have been and although the drug probably works not too bad, I have found it to be less effective over time. TN doesn't go away and probably gets word over lifetime. You need a referral and an MRI to confirm the vascular compression

      I'm having the MVD op tomorrow, because can't keep taking Carbamazepine all the time.

      Good luck with your referral.

      Cheers

      Big D

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    • Posted

      Hey. Thank you so much i will speak with the docter and ask for a referral. Good luck with you op. Let me know how you are when your feeling up ro it.

      Xxxxx

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