Finally an answer.....only to have more questions!

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1

I have just recently, in the last week, had it confirmed that I have TN…after more than 6yrs.
I have been put on tegretol and I cant help but feel it is not working as good as it should. Noq I know there are people that are on a way higher dose than me, im on abut 250ml a day, and that there are people suffering more than me. I hope I can be of help and support for you.
I have one question, and I have my fingers crossed someone can help. Since being put on tegretol, my brain function is sooo slow. I knew this would happen…but no mention of my speech was mentioned. I am really nervous to talk now as I have to talk really slow dor things to come out properly…otherwise it ends up coming out in baby talk. Has anyone else experienced this?? Is it normal??

2

Hi,welcome to the Group,
Tegretol is usually the first anti convulsant they try. However you need to know that it takes some time to work up to an adequate dose that works for you. The first 48hrs of taking it when I was diagnosed, I felt a difference in the pain and frequency. However, it took almost 6 weeks (for me) to get to a therapeutic dose. During that time I experienced many side effects, drowsiness, fatigue, difficult speech, but in time those went away…
Now I’m on a much higher dose 1600mg and the side effects don’t really go away…
But give it time, hopefully you’ll find a dose that works for you with minimal side effects
((( hugs )))

3

I have no problems with it other than being a little forgetful and have trouble thinking of the right words for things sometimes.

4

Hi, i'm on 600 mg and the side effects you mentioned are pretty much normal and do settle down, almost back to normal or pretty close. I'm 55 years old anyway so when i forget things i'm not sure if it is my ageing neurons or the tegretol. Also remember that everyone reacts a little different to these meds

5

250 ml per day is a pretty low dose

6

Thanks everyone for the comments. dmy apologies, I read things wrong and im actually on 500ml/day which I understand is still a small done. I am jsy frightened of what im going to be like in the long ter. I am off to see another neurologist on the 18th so hopefully I get some more answers and help :slight_smile: thinking of everyone who is going thru it all as well xo