Hi, I'm doing trileptal for trigeminal neuralgia, currently up to 1800/day, will be going up to 2100 shortly. Maybe a little confusion / tiredness, and it hasn't entirely relieved the pain, but anything that helps is good... tried gabapentin at first and it didn't seem to do anything, or at least enough. I've been fighting with this stuff for 2 1/2 years now, believe it was set off by an exam following a root canal in a left side molar.

Just took a 900 evening dose about half an hour ago, and it seems like it started helping in about half an hour, but we'll see. O thoml a typical dose works for maybe 8-10 hours, and there are periods (up to a couple months) where the pain goes away altogether. The Mrs. has become pretty frustrated with this going on for so long, and we're about ready to find out what comes next after pills and try that. Most frustrating thing about this whole neuralgia business is that my pain doctor doesn't do anything dental (even though he's a DDS), my dentist keeps sending me to endodontists, and I wind up going to all sorts of different doctors... apparently even my dentist doesn't do extractions anymore, there's a whole separate doctor for that.

Anyway, I seem to be tolerating the 1500-1800 doses okay, I'm also doing tramadol (pain medication) sometimes, haven't quite figured out if that's helping or not.

Charles16

Well, I may be giving up on the trileptal and trying a different medication pretty soon. The doctor is trying moving me up to a higher dose, and taking four pills in the morning (1200 mg at once) just seems like it's too much for me. I've been too drowsy to drive and certainly confused and not a good judge of what's going on... the Mrs. has stepped in and is going to be coordinating my care because I'm just making bad decisions (and not just about my neuralgia, either).

One of my ongoing things has been wondering whether this really is neuralgia or a "root canal gone bad" problem, but we just got back from another dentist consultation this morning, who came to the same conclusion - this really is a neuralgia problem, even if it feels like a terrible toothache sometimes. This has been one of the things that I've been back and forth on way too much, just hoping that there is a dental solution that will provide a quick relief from the pain... but the general opinion of the experts seems to be that this really is neuralgia, and needs to be treated as such; pulling a tooth isn't going to fix it and could make it worth.

Sorry if this is kinda confused, the trileptal seems to be doing that to me...

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..