When have others increased their meds-- how long do you live with increasing tn pain before you decide to increase your dose? Mines been worse for a couple days ( never completly gone). Do I increase tegretol nos? Wait a week?

What are your thoughts?

First time around I usually waited to see if I really would need to increase the meds. And I put up with a lot of pain to do that. Then my doctor convinced me that it was much better to "get ahead of the pain." The way the meds work, it is harder and may take even more meds to take the pain away if you let the pain escalate before you increase the meds. The second and third time I had to go on the meds I was quicker to increase them.

For me once the pain escalates, it keeps going until I can't stand the meds and have some procedure done. So twice I had pain escalate, and kept increasing the meds till I couldn't stand the side effects, then had a procedure, got off the meds. Then sooner or later the pain returned and I tried meds again... After the third time the pain started and I got to where I couldn't stand the meds, I had an MVD. That was 3-1/2 years ago and so far so good. No pain, no meds.

So in my experience, there isn't much to gain by not increasing meds if you are still having pain.

Thank you for the advice. I was hoping that it was more of a flare and would calm down ...not so much. Seems like when I increase the tegretol it helps for a while but the pain gets worse again.

Pain stresses your body and will make your health worse.
Nobody wants to take more meds than they need.
But pain will wear you down and out. Take what you need.
The less stress you have, the healthier you will stay for a longer stretch.
Good luck to you.

That was my experience, too. If it really was just a flare (and sometimes that is the case), once you have been stable for awhile, you can try decreasing and see what happens. Early in my experience with TN I had a period of escalation, I maybe got up to 600 mg of Tegretol. After awhile my doc had me decrease and I got down to 200 for awhile. But after it flared a second time, I never had a time when it didn't keep escalating.

I got up to 1200 mg of Tegretol once and felt like it changed my whole personality. And I still had pain, that's when I had a radio frequency rhyzotomy, the first of three procedures/operations.

I hope you can get the pain under control and maybe you will be able to decrease the meds later on.