Hi Bassetcase! I agree with BMW--It's nice to hear from people no matter what their condition is. Regardless, your's sounds pretty rough and I wish you all the best. I have no doubt that your neurogenic pain is as horrible for you as anyone else's is for them. It is such a random, uncontrollable thing that it really beats away at one's mental defences.
BMW, I decided to hold off on adding the Dilantin. I saw a non-practicing neurolgoist as a favour to a colleague and he confirmed clinically the TN diagnosis and said to adjust the neurontin doseage a little by taking an extra pill here and there throughout my waking hours. He expects it to kick in and says I should achieve pain free status (here's hoping...).
Fortunately, I haven't had any "attacks" since Wednesday which I can safely say was the absolute WORST day I've had since the condition reared its ugly head. I'm just having the stabbing pain occasionally when talking, brushing, eating, etc.; just enough to remind me it is still there.
I picked up the Striking Back (2004) book from my local library and I really like the fact that it cites real clinical studies on the effectiveness of alternative treatments such as acupuncture and the like. My conclusion was that it might work and might not.
The neurologist I saw said "nobody knows the cause" of the TN contrary to the leading theory espoused in Striking Back about nerve root compression. I didn't say, "well I've read that it's caused by..." but hopefully the other neurologist I see next month will be more up to date on the condition.
I tried the acupuncture on Thursday and since then I've had this weird sensation in my left cheek, somewhere between mild numbness and mild tension; it's difficult to describe. I think I'll try it twice a week for a month even though they charge an arm and a leg and even though it will complicate the picture--Are the drugs working or is it the acupuncture??
But desperate times call for desperate measures, or something like that.
I sent an e-mail to that Dr. Kaufmann in Winnipeg asking about that microcompression surgery. I'd like to consult with someone about having it earlier than later if it is indicated in my case. I have no idea if he'll actually respond. I live in Toronto, but my tiny little home town is only 3.5 hours drive from Winnipeg and I actually went to University there so it would actually be quite convenient for me to see him if he'll let me. Otherwise, hopefully he'll recommend someone down here in Toronto that knows what they're doing in that respect.
Well that's my story so far--long and boring, but I find it helpful for some reason just to write out what is happening. Maybe someone else can find some use in things I am trying as I have from reading about others.
Anyway, here's to another day of hopefully attack-freeness and peace and well wishes to you BMW and Basset and you too Corky!!!