Dear KM,
You know, I really don't worry too much about what they call it, as long as they are taking the right treament path. I have studied this condition backwards and forwards, so I've learned what all of my treatment options are. I sure wish that there were more. The only one that was new and a surprise to me was the one where they use one of those spinal pumps to deliver a snail venom directly into the CSF. Possible side effect: Psychosis.
I am so sorry to hear what you are suffering through. I have that unrelelting pain as well (I think that that is probably why they are calling it a neuropathy instead of a neuralgia, in your case). It can be torturous. I know. I have it on the upper two nerve paths, and I thought is was bad enough, but now the teeth and upper palate are starting to chime in, and it is a whole new level. I cannot stand to get my teeth cleaned - the last time landed me in the ER for Dilaudid shots. In my opinion, and this is only in my personal experience, I think that the TN2 is worse that the TN1. I had TN1, but at least it would let up after a minute or so. This constant pain is often crippling. I find it to be innapropriate for the articles and published info to state that it is somehow less.
This is what I take: Anti-seizures: Neurontin, Trileptal, Lamictal. Antidepressants: Nortriptyline. Pain Meds: Dilaudid. Muscle relaxants: Valium. I think that's all of them.
I hope that you are able to find relief in some manner - that you have the neuropathies elsewhere must be difficult. I wish you a pain free or reduced -pain day as well. Thank you for sharing your story.
Lily