I'm so sorry for your pain, Charlie. There is nothing worse than nerve pain.

I hope you can find the right med to help you and please feel better soon..

Just an update...

The higher dose of trileptal seemed like it helped for a while, then didn't any more. This seems like it's what has happened with various medications I've tried, they help for a while, then they don't.

I have now had an MRI and an MRI-A, and it seems like my deal is sorta like this: I have a blood vessel which is sitting very close to the trigeminal nerve on the left side of my face, and there seems to be general agreement that, yeah, if that vessel was rubbing against the nerve, that would indeed hurt like heck. It would also be one of those things that would "come and go," again, typical of neuralgia.

I am scheduled for surgery at Barrows Neurological Institute here in Phoenix on February 23rd. Basically, they're going to move the blood vessel aside and then put some sort of a teflon pad between the vessel and the nerve. Word is that about 80% of people who have this surgery (meaning they have this "cause" for their TN) find pretty much instant and permanent relief. So I've got my hopes up. It's not quite "brain surgery," but it's still pretty cool :-)

By the way, for anyone using trileptal, in some poeple it can cause your "blood sodium" level to go pretty low... one of my doctors had this tested, and it turns out I'm a little below what's considered "low." So that's been another reason for backing off the trileptal and adding the lyrica. I was also on a blood pressure medicine that included a "water pill" (lisinoprene-HCTZ) and this water pill stuff apparently makes the low sodium level problem worse, so I'm now on just plain lisinoprene. Not sure yet whether this is helping the blood sodium problem and whether it is helping the blood pressure as much or not. As far as I can figure out, when you drink lots of water, and then get rid of lots of water, it washes the sodium out of your system... so in this case the doctor actually suggested NOT being quite so diligent about drinking lots of water..

In any case, hoping that the surgery does the trick for me... of late, the face pain has been sort of constant, worse at times... bearable, I guess, but bad enough that it interferes with most normal activities. Hangin' in as best I can...

Good wishes for your surgery at the end of the month. Please let us know how it goes..