07-27-2010, 03:37 PM
Yes, the meds are really helping. Great news! :)
I did order the book - it is on its way. I have read a lot of the available excerpts online and a lot of the stuff on that website you sent.
My prescription is currently "as needed," and I had a nice long natural break from the severe pain from Thursday morning to Friday evening so the Dr. told me I could wait and take it when it came back. I was still feeling it a little, but it was much less frequent and more like a pin prick than an electroshock. I can take the pin prick especially when it is like 2-3 times every hour or two instead of every 10 seconds. When I felt a couple of strong jabs in quick succession on Friday late afternoon/evening I took it, and the jabbing stopped in a few hours. Which could have been just natural or it could have been the meds starting to work. I tried just taking it once a day instead of twice, and that worked till Monday afternoon when the jabbing broke through again so I am going with twice a day right now to give myself time for it to calm down.
Based on what I have read so far TGN affects everyone differently - it depends on how tightly the vein is wrapped around the nerve and it depends on where the pain is located. People can have breaks from the pain for hours, days, even years and then it can come back usually stronger the next time if the vein tightens. Also, lots of people feel the pain in the eye socket, teeth, or cheek while mine is behind/under my ear at the jaw line. I felt a couple of isolated jolts to the eye before this started (likely a warning sign) and believe me, that would be much more disruptive to life and just plain old freaky than the pain behind my ear. So I'll consider myself lucky if it stays where it is.
Because I am not an epileptic, I am free to cut back or stop using the med to see if the pain is still unbearable or not. Knowing me, I will forget to take it, so we will see what happens then. If this "as needed" med stops working, I may need to use the same med continuously. If I use it continuously, the doctor will likely need to increase the dose over time, but of course that increases the chance of side effects. If it stops working altogether, there are several other meds to try. And then several surgical procedures ranging from less invasive methods of deadening the nerve to drilling a hole in the skull to try to move the vein away from the nerve and put a little cushion in between to stop the rubbing/pressure. I am not sure that I would elect to kill the nerve and would need to do a lot more research on that, but we are a long way away from that.
Anyway, it is a lifelong condition, but some people have had 5 year breaks from it. Maybe I will get lucky.
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