Originally Posted by Rum River (Post 274126)

I'm brand new here.

I was originally diagnosed with TN by a TMJ specialist my dentist referred me to when I saw him for what I thought was tooth pain.

My dentist correctly realized I had no tooth issues, but suspected TMJ. The TMJ specialist recognized TN from the journal I provided detailing my symptoms over a 4-5 week period. He suggested I see a neurologist, so I went to the same one who had diagnosed my Charcot-Marie-Tooth fifteen years ago.

My neurologist confirmed the TN diagnosis, and I've been on Gabapentin since mid-April. I started out slow at 300mg daily, and plateaued at 900mg daily. The side effects weren't bad, and I got significant relief.

In the last week though, the symptoms have returned, and I've gone up to 1800mg daily. (The max my prescription allows.) The gabapentin doesn't seem to offer any relief, and the side effects are more noticeable.

What is the experience of others here? How often do your symptoms ease when taking 1800mg Gabapentin? Have your doctors said why the medication doesn't seem as effective?

Another thing, how fast does TN manifest itself? My first twinge of "tooth pain" was in late February. Here it's only May and I can't remember the last good night's sleep I had.

Sorry if I've repeated what is common knowledge to the rest of you, but I figure I have to start somewhere.

Originally Posted by leejcaroll (Post 285068)

I have been on 3200/day for years. I rarely have breakthorugh twinges (of what we think are from anaesthesia dolorosa (painful numbness left from sa rhizolysis procedure,) When I get them I add an extra half or whole pill and that usually will take care of it for me.
leej

Originally Posted by Rum River (Post 292728)

Well, got the results of the MRI. Nothing earth shaking or out of the ordinary. Spoke with my Doc regarding my dosage, he wants to keep it at 1800mg daily. Some days my side effects aren't bad, other days they can be a problem. (Yesterday I had to leave work early and finish the day from home. A couple of times I "came to" with the mouse still in my hand. In one episode I had been sitting like that for 30 minutes.) Oh well, time will tell.

Originally Posted by Rum River (Post 314324)

Back again, still struggling a bit.

Currently am not able to chew, PERIOD. Only liquid or everything mashed.

Have to be careful in the shower, no direct streams of water on the right side of my scalp or on the right side of my face.

Have shaved my beard for the first time in 15 years, checking to see if shaving is less painful than shampooing.

The doc has bumped my Gabapentin to 3000mg, this is the second day and there's no improvement. I'm scheduled to try for a total of three before getting back to him with the results.

We're camping over the 4th, but I won't be able to eat burgers from the campfire, THAT's for sure.

Nuts.............

Originally Posted by Rum River (Post 314847)

Okay, just spoke with my Dr. at Mayo.

The next step is to try 200mg Tegretol (Carbamazepine) in addition to the 3000mg Gapapentin (Neurontin).

Additional lethargic side effects, here I come!