as i said im only takeing 1/2 tab of carbamazepine twice a day and the pain has almost gone away almost, but i can live with the pain i get so what do i do carry on or stop takeing the carbamazepine if i carry on with the carbamazepine how long do i take them for thankyou everybody for your help

Hi Chris, that is a very difficult thing to answer, for a lot of reasons, but mainly because it is a personal thing, when I started taking the meds I was on a very low dose too, and it kept me undercontrol, but very quickly I had to increase the dose, and add in additional meds ( personally I think the meds I was taking other than the tegretol were making my pain worse but that is another story) but sometimes your tollerance increases and you have to up your meds, it however boils down to how much pain you are willing to trade against what quantity of meds in your system

I know a lot of people get long spells of remission, some continue to keep a low dose of meds in their system to be on the safe side. I havent been in that position so I keep taking them, but it is a very personal, very painful desicion to make, I am thinking about you, and if you have any questions just ask.

Lots of love Gracie

x x x x

Hi Chris,

With Carbamazapine you have to continue taking it. If you stop the pain will return. I was told to slowly increase my dose until the pain had gone and then continue at that dose.

Kind regards,


thanks for that i wont increase the dose unless the pain gets worse

when I was first diagnosed and in intolerable pain (and i have a high thresh hold for pain!) I was taking about 800mg/day. There were times when I had remissions and completly got off the drug for up to a year however in most all cases TN is a progressive disorder and in the past 7 or 8 years i have had to remain on the drug. I am not willing to suffer the pain as I would not be able to live a pleasant life, work, socialize etc…so I will endure the mild side effects of the tegretol and pray that it continues to do the job for me.
I agree with Jo that you should not discontinue the drug especially in the early phase of your diagnosis until you see where this condition is going for you. we are all so very different.
Take care, Judy

thanks for that

Yes Chris…not to be repetitive but what Maeve mentioned about the drug building up in your system is absoloutly true and you should also have regular blood tests for a “Tegretol Level”. this will ensure that you are at a good level and that the tegretol is not causing any problems with your liver function. My Dr. recommends 3x/ year but I do it every 3 months since i have been on it for so long.

thanks ill check that out

Good morning, what do ya all mean this is a progressive disorder? I have really been having a time with mine, however I already take 1500 mgs of tegratol and 600 mgs of ultram daily. It just seems to be getting worse daily and my husband has definately noticed even though I try real hard to hide it. I can not take any more meds any time soon because I am looking for work and I got a call late Sunday night for an interview Tuesday with a drug test, this really scares me because I will have to tell them what meds I am on and then you guessed it, I will probably not be hired. Any help, I am verrrrrrrrry miserable and really tired of all this!! Wanda

If your pain is under control with the amount that you take…I would keep taking it. You have a level in your system and once you stop that level drops it takes a few days to go back to that level.

chris hi…i am very familiar with this drug and what i say is just advise not instruction…I would start to ween urself off the drug as it can cause drowsiness n many more side effects that can effect day to day living. ur face pain wil trigger off no matter what…and in my experience 1/2 a carbamazipine will certainly not help any…its sometimes a mind over matter situation…sometimes popping all these pills makes us reliant on them and we tell our selfs we can not go anywhere without them cos they help…mmm…im not a great believer that any of them help…but they must do something ?? I hope ur pain goes totally n u take away some good advise from all these comments above too.

well i have no pain at all nothing but this happened before and i stopped takeing them and TN came back with a vengence im seeing the doctor in the morning see what he says

did you get the job