Thank you to all of you who have been helpful and supportive to me as I struggle with the new diagnosis of TN.
For those of you who take Tegretol, how long after starting it did you begin to find relief? How long before your body experienced less side effects, my worse being losing my balance and feeling like I’m in a fog? What doses do you take to maintain some pain control?
Has anyone had surgery? If so, what kind and did it help?
Thanks again for your help and support.
Hi Donna,
I was initially prescribed 100mg Tegretol which I found didn’t help the pain at all.
This was increased to 300mg which after a matter of days reduced the pain immensley. Though I did suffer with the side effects exactly as you describe. I felt as if I was in a fog and was off balance and very forgetful.
I nearly gave up taking it as I felt pretty rotten but I’m glad I didn’t as after about a week I began to feel better. I have frequently had to increase the dosage and currently take 1400mg. With each increase I felt the usual side effects but they pass with time.
TN affects everyone differently. I know of people here who have good pain control on much lower doses than I take. There are many different medications if one doesn’t help or agree with you. I am seeing a Neurologist tomorrow to discuss changing mine as I still have quite a few zaps.
I hope you get some relief soon,
Kind regards,
Jo X x
Thanks Jo for your info. It sure is a comfort to feel I’m not alone out there with TN and someone really knows what hell we go through and can offer support and helpful info.
Hope all goes well at neurologist and will be interested to know what you find out.