Good stuff and debates
The default medication for trigeminal neuralgia is Tegretol (R), aka carbamazepine: for good reason. It works. Maybe a third of patients who present with TN actually achieve an indefinite remission. It has some benefits for most of the others.
Like most wonder drugs, it has down sides. The first is that it has a discouragingly long learning curve, so to speak. That is, it takes a lot of time to develop tolerance and find the right dose. The maximum dose most often cited is 1200 mg daily, although some clinicians take it to 1600. Most physicians would like their patients on less than the maximum because of the second down side: it can cause permanent liver damage. To find the sweet spot, the dose that works but causes the fewest side effects, the patient must willingly reduce the dose, knowing that the outcome will be breakthrough pain, the increase it until you find the dose that contains the pain. That is not a fun exercise.
I've been on a maintenance dose of 700mg for years, increasing to 900 during breakthrough periods. As an "involved patient," I have licence from my PCP to experiment when things don't work. During the latest breakthrough, neither the 900mg nor the crisis dose of 1mg of clonazepam got the job done. However, 1000mg will, along with the clonazepam. I also have taken a maintenance dose of 1500mg of gabapentin daily for some years. My PCP wanted it to be 1800mg, but at first I found that gave me the trots, so we cut it back. I guess I've been on it long enough, because I've found that I can tolerate the 1800mg dose now.
Experimentation means that I don't have to run to potentially addictive doses of clonazepam, but can put the burden back on the safer anticonvulsants. It also shows that the maintenance doses likely need to increase by these relatively small increments permanently: at least until that doesn't work any more.
The debate part of the title lies ahead. There's a clear connection (at least to me) between the worst breakthroughs and dental work. To the clinical people I work with, the mechanism is obvious. Dental work = severe stimulation of the trigeminal branches innervating the jaws=breakthrough. My dentist's hygenist did her best, knowing the problem, but it still happened.
There is medical debate about whether major dental work can initiate TN, so here's where the involve patient may have to administer a dope slap to a neurologist. We're not talking about initiating TN. It's been there for 13 years, and this year it's been hanging around at a barely tolerable level since October. We're talking about the likelihood that messing around the teeth has caused the current outbreaks, which are, objectively, intolerable until the various jolts of medication take effect. In treatment of any chronic pain, it's important for the patient to be patient, to make sure that you and the physician are not talking past each other. Physicians are busy people and often accept the easiest explanation. I doubt I'll have trouble with my PCP, who has been on this case for a long time, but I'll have to be on my A game if a new neurologist comes on board.
Ah, tis an adventure!