Do you make commitments or do you make plans for 2 or 3 months ahead when you have TN? I have had TN for only 5 months. It has been rough, both with the pain and the meds. I am currently on only 200 mg of gabapentin and 10 mg of nortripyline. This seems to be working for me for the past 3 weeks. I have some pain but it is bearable. I do not want this disease to control my life but is it realistic to book plane tickets for 3 months from now?
The way I see this is if you allow TN to dictate your far future, you've lost the battle. I've made plans ahead of time, many of them winter time plans when the pain was the worst, and carried through with them. It's one aspect of my life that I maintained control over so others did not slip away too.
Karen, that's a tough one to answer because the intensity of the pain each person experiences is different. I can tell you that for me, i could not make plans even from a morning to evening time span, let alone a few months. My pain intensity was so high that i can't imagine any more intensity on the pain scale. You are also on fairly low dose of meds, so if that's working, i would say stay on it and you can even go a little higher. I had to go up to 800 mg of Tegretol and even with that i would have intense pain probably every other day so after suffering for a little over a year and a half, i chose to go through MVD which has turned out to be the right decision with many side effects and drawbacks (hardly perfect but i guess better than that TN pain)
You might ask your doctor for her opinion. Maybe there is something strong you can take temporarily to get you through your travel period.
I know what you mean. I have been fortunate enough to have had no pain since Mid April but I am still hesitating to make plans for our holiday in New Zealand. Still not sure what to do.