I'll try and work my way through your questions and answer them to the best of my ability! It is very possible that the scar tissue has built up and is causing a compression against the nerves there, and it may be as the scaring goes down that the pain subsides, we can but hope!
The gabapentin, for me it did give me pain but within my trigeminal nerve and that really confused my diagnosis, I was crippled with pain in my face for months, but I guess looking back that it was just an assumption that the condition was progressing and not that the very drugs I was taking for the neuralgia were giving me more problems, hindsight is a wonderful thing, but on stopping it ( after a horriffic withdrawal) and after stopping the lyrica too that element of the pain I was getting dissappeared entirely, it was as though all the anticonvulsive meds I was taking were almost working against each other or putting my t- nerve into over drive, so stopping it, for me was the BEST thing I EVER did, in saying that it is a very useful drug for a lot of folks, everyone reacts differently to these things.
GPN well now everyone on this board will probably tell you a different story as to how their pain manifests and for how long or if its one side or billateral, the literature will tell you that some people may only ever have one attack, while others it comes and goes into remission again like with trigeminal neuralgia, for me, I've not had a remission in 4 years I've had it daily, ( but given both sides are affected I guess one side could be in remission as the other stayed active, I've never thought about it, its been there daily so I just assume its here to stay)
My pain comes in attacks, like lightening bolts deep deep in my ears, my throat is very rarely affected since taking the tegretol its fairly settled. ( I did have throat pain going back a long time, and I think that was down to the eagles syndrome, but thats another story entirely!) but there are others on the board who suffer from atypical pain, which would be more similar to what you're describing.
The meds are something that can settle in your system, some better than others, when I started on them I had to have 6 weeks off work because I was so damned wasted, bouncing off walls, not seeing straight, balance, vision,speech were all affected and that was on 100mg of teg twice a day, right now, I am up to 1600mg daily, it does settle, or at least it did for me, but in saying that, some teg I tollerate, others I don't.
There are topical anaesthetics that work for some but because of it being in my ears I've never pursued that, and yeah, I've read about the coke and the ket getting used to numb it.
I believe one of the diagnostics is to try a GPN nerve block- ( I asked about this but my pain doc about feinted at the mere suggestion, I beliieve its a lot more common to offer that in the states as a diagnostic, there are also MRIs or with contrast that could show a compression against the nerve
I have tried accupuncture, but that was before I knew it was the glosso and not the trigeminal, so I think we were maybe focussing our attentions in the wrong place, that being said it was genuinely relaxing ( which is quite a statement from a needle-phobe!)
Staying positive is hard, believe me I know that and I still have dark days, I believe wholeheartedly that there's a grieving process for a condition like this, because there are many implications of it for us, and in many aspects of our lives that you wouldn't give a second thought to normally...... Pain is not just a matter of mind over matter, if it were do you think there would be so many people willing to risk their lives multiple brain surgeries? I wish I could believe it but unfortunatley it certainly hasn't been the case in my experience.
I'm not sure why it feels better when you push on it, I would imagine that the pressure is confusing the nerve paths in such a way that the pain is disrupted? Thats just a guess though!
Glad to have met you too hun, just sorry it';s under such cr*ppy circumstances, I really hope that you do well at your appointment though and that they can find you some answers soon.
Gracie x x x