Re: Anyone have Persistent Idiopathic Facial Pain
You are luck you got the diagnosis. I kind of lucked out in getting mine. In the beginning the pain felt most like it was dental with tooth pain and shooting pains that seem to be a result of a bad tooth with possible TMJ involvement. Medications did nothing to help.
I was later diagnosed separately with a prolactinoma, a small tumor that affects the hypothalamus. It wasn't causing any problems but the treatment was a medication called Dostinex or generically, cabergoline. This completely resolved my facial pain. I don't believe it is merely coincidence since I have not taken Dostinex for a couple of weeks and my facial pain is returning. Dostinex is a dopamine agonist, and there are some studies showing that PIFP is a result of problems with dopamie receptors, so I think this is why it helps. I don't know if it is specific to me, but since there are very few negative side effects of Dostinex I would certainly try it. It is very expensive in the US but I get it from overseas cheaply. Good luck, when I was having the facial pain it was hard to just get through the day and sleeping was next to impossible.