Nik-key,
I am sorry that you are hurting! It can be so discouraging when your condition changes. The good thing about this message board is that you can come here and vent all you want, because we sure as heck know what you are talking about.
I use lidocaine patches often - my V1/V2 branches are affected, so by the time that I have the patch all cut and pasted on, I look like I am wearing the mask from "The Phantom of the Opera".
I often acheive pretty good pain control this way, in conjunction with narcotics, when I get a flare. I would encourage you to try them.
It sounds like you talked to a great neuro, who actually knew a thing or two about this condition.
Good luck with the patches!!
Lily