How does one sort through the mess of treatment

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Been suffering TN for over two years. Lyrica and ox carbamazapine ended up being my salvation. started on 200Mg of Lyrica and ended up a zombie. Now down to 50Mg three times a day and I can walk a straight line. The otner is still 600Mg 3 times a day. Tried 300Mg and that wasn't enough.

So now the treatment. So far the neurologists have been looking at the most common base of the skull but now they have brought up MACKELS CAVE which is half way up the cheek and the same nerves travle through there as well.

Has anyone had this raised as a possible treatment arae and if so what results have there been?

I start researching these things and get so confused with all of the mecial technical terms my brain hurts!

I hope someone has been there and can offer some advice

Cheers

Ray

 

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7 Replies

  • Posted

    Hi there. Too much stress over these treatments not good for mental health.There are many different options you can add to what you already have . I had acupuncture 10times in a month and in remission 2 weeks later. That was 7 months ago. Previously my TN disappeared when I broke my hip and had a replacement, tho I don't recommend this. Lol. Maybe roll down a grassy hill!  Supplements of all the B vitamins,fish,Krill,Cod liver ,and flaxseed oils and specially magnesium. Keep a diary so you know what helps. Best wishes.
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    • Posted

      Tell me about it!

      The Neuro team has moved again to the PAROTID Gland and I am off to have Ultra Sound and if necessary a Biopsy next monday.

      This their THIRD 'guess' about where to look and what to do!

      Nothing like feeling like a 'guinea pig' for the NHS but should I decline I go back to the bottom of the barrell and wait to climb to the top again

      There are so many 'terms' associated with this malaise and so little ACTUAL valid diagnosis data available one just has to go through the mill till someone hits the right ball from the lotto results

      I try not to be too critical but it is hard at times.

      All the best to you as well

       

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  • Posted

    There is some other conditions that are so close to TN and effect he Trigeminal Nerve in the same sort of way. The medication is almost the same. I have one of these conditions it's called SUNA for short (look it up) sorry but it's to late at night for me to spell it all correctly for you.   It takes a highly knowledgeable person to tell it from TN.    I was diagnosed with TN about "10years ago then I was referred to the UCLH in London about 6years largo where it was re diagnosed as SUNA. Same sort of pain.  I take Lamotridgene, Carbamazapine and Gabapentine.    You are so right about trying to help ourselves by doing some reaserch that after about a couple of hours you are totally confused and lost in a minefield of technical words and terms.       Back to Mackles Cave  -  I'm afraid I have not come across this area of TN.   But I am sure somebody will be able to help.      Take Care.
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  • Posted

    There is some other conditions that are so close to TN and effect he Trigeminal Nerve in the same sort of way. The medication is almost the same. I have one of these conditions it's called SUNA for short (look it up) sorry but it's to late at night for me to spell it all correctly for you.   It takes a highly knowledgeable person to tell it from TN.    I was diagnosed with TN about "10years ago then I was referred to the UCLH in London about 6years largo where it was re diagnosed as SUNA. Same sort of pain.  I take Lamotridgene, Carbamazapine and Gabapentine.    You are so right about trying to help ourselves by doing some reaserch that after about a couple of hours you are totally confused and lost in a minefield of technical words and terms.       Back to Mackles Cave  -  I'm afraid I have not come across this area of TN.   But I am sure somebody will be able to help.      Take Care.
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    • Posted

      Hi Angie

      Things change so fast these days. They dropped the MACKESL CAVE route and went for the PAROTID GLAND just under the ear. Did the bad side - no problems - went to the good side - EXACTLY the same so another guess gone bad.

      Haven't seen them since so can't update you in their latest guess!!.

      For some reason mine is slowly receding. Dropped the Lyrica altogether and just on the ox carbamazipine now. No doubt it will come back with a bigger baseball bat in hand at some time. The pill draw is staying full "in case"

      Just think once the after effects wear off I can walk a straight line again and maybe my word recall will improve as well

      Just show how fickle this rotten TN can be and part of why it is so hard to diagnose and treat unless you actually suffer from it

      Good Luck with your treatment

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