Might be TN, not totally sure.

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I have seen a Neurologist recently after suffering months of head and face pain and being prescribed Tegretol - carbamazepine, and then Gabapentin, without much success. The Neurologist thought I possibly have Trigeminal autonomic cephalgia (TAC), and started me on a course of  Indometacin tablets, increasing the dose over 3 weeks, to see if that worked at all.  The nature of my pain seems to have changed since this, as I  have less pain on the left hand side of my head - it used to be very bad all over - behind eye, cheek, forehead, ear, jaw - and now seems to be mainly in the jaw, but on both sides of my face.  Now the symptoms seem more like Trigeminal Neuraalgia than anything else. I am very disappointed - I was really hoping this new prescription would work, but no luck after ten days on it now. I was told it should start working after a week, maybe a few days.   I am seeing the Neurologist again this Wednesday.  Is this likely to be TN after all?

Perhaps I should try the Tegretol again but get to a higher dose? Or discuss possible surgical procedures.  I am - obviously - sick and tired of this awful pain. I have had to give up a PostGrad course I was starting, and not been able to attend job interviews because of it, and my life is getting more and more insular. 

What dose of Tegretol have others found to be effective?      

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  • Posted

    Cigs not unusual for TN to take a while to settle when you start taking Carbamazepine try and stick with it , you may need a higher dose as you said. There real so several other conditions that are very similar to TN and it is hard to tell them apart.  Hope you get on ok with the Neurologyst  
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  • Posted

    My answer is the same as always..... Get a MRI and if it is TN this will show up if the doc tells the radiologist to specifically look closely to see if an artery or blood vessel is putting any pressure on the trigeminal nerve. That is proof that it is TN pain !!!!
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  • Posted

    i used to take one in he morning two at night any more i could not think straight ride a bike and not drive but its 5 weeks since i have had the op and no more pain just a frozen side of my face which is getting better and hopefully will go 
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    • Posted

      Thanks Chris and the other responders.  I have taken 4 X 100 mg Tegretol so far today and I think the jaw pain - which came back a couple of hours ago is starting to subside.  I also took 2 x 300mg Gabapentin. I was prescribed these two meds together a couple of months back, and I thought I'd give them another go as the Indomethacin was doing nothing to help.  I know I might not be sticking closely to the recommended doses - as I stopped both drugs a while back thinking they didnt work - but my pain relief from the Tegretol yesterday felt so great that I've got to the point where I would risk unpleasant side effects if the TN pain is helped.

      I think I probably need the nerve block op, so will press the Neurologist on Wednesday about this. I get bad pain on both sides of my face which is quite rare, but there you go.   I have had the MRI and CT scan, and everything looks normal, so it looks like nerve damage in my case.

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