CJ is pain free for now, and the side effects have decreased since the doc lowered his Tegretol dosage to 600mg/day (he couldn’t see for a couple of days when he reached 800mg/day)!
We are so thankful because he is a grade school teacher and he went back to work this week; summer vacation is over for him! I told him he needs to have a talk wth his principal to tell him about his TN, in case he were to go back out of remission soon.
Which leads me to my question: how long, if any, do some of you experience remission for? I know some people can go months, or even years, and some go only weeks or days.
Let us know your name.
I’ve never been able to be totally free of meds. I have had months of very little pain but always required at least a low dose of medicine. And I followed a somewhat typical course of shorter times of low pain and longer times of inreased pain until the severe episode started. That episode led to a MVD. I was never med free after that either. And now I am taking just as much medicine as I did before the MVD but the meds do control the pain and I’m able to do most anything. I can’t dance or do anything real strenuous or drive distances because the meds make me so sleepy but most anything. I haven’t tried flying and I want to take a trip. But I’'m scared to try because I’ve heard stories about that. Maybe he won’t get any worse than he is now. Also remember that this site probably has a higher percentage of those looking for answers because their TN is not well controlled. There are many whose pain is under control and they are not looking for answers. So I like to think that most are doing well with their TN. I hope he is one of those.
Liz
I was diagnosed about the same time as your husband. I’ve only reached partial remission. That is, my symptoms are tolerable to me and I don’t want to go any higher on the Tegretol for fear of increasing the side effects. I have an ear ache, sore throat and headache on the affected side that come and go and - just today - bearable tooth and gum pain. Since I was at the dentist in June and had complete dental xrays, I’m certain it’s the TN.
My remissions were like clockwork. My TN pain would start around November 5 or 6th and last until March 15th-ish. After having TN for about 4 years, the pain became more year-round, but during my usual remission times, pain would pop up in different branches of the nerve. A lot of sufferers have weather-related remissions and I know of several people whose pain was eased when they moved to warmer climates.