New here and need help!

General General TN & GPN (Old Site)
1

My facial pain used to just be the mandibular, but now it’s also the maxillary as well. Has this happened to any of you? Where it was only one branch for about a year and then as it progressed, it then also included a new branch with it?
My neurologist isn’t the brightest, and I’ve been doing most of my own research (I can’t switch to a new one because I am low-income from not being able to work from my pain) – you all seem to be so bright and knowledgeable! I would love any input/advice you have!
Thank you so much!

Katie

2

Hi,

Yes the same thing happened to me. A year and a half ago it started in one bottom tooth on the left side. Within a few months it was the entire two bottom branches on the left side. Then six months ago the right side started--entire bottom two branches on it as well.

I'm sorry that you are going through this. There is a wealth of information here amongst all of us. A lot of us have difficulty receiving proper care from the medical system. Ask anything you want :)

Jane

3

Thank you Jane! What have you found most helpful? I’m on tegretol, and topamax now.

4

I was on Amitriptyline for a year and switched to Nortriptyline a month ago. My pain is well controlled right now. I hope that your medication is helping you.

5

Hi Katie,

I’ve only had the pain for just over 2 months now, and was diagnosed about a month and a half ago.

My pain began as cheekbone pain - GP thought it was a sinus infection initially - before spreading into the jaw. My upper branch is numb - which I’m fine with, given the other option seems to be pain.

My neuro is awesome, but he is very expensive. I look at my medical bills and just shudder. But at least there’s some degree of governmental help here (Aussie) which I don’t believe happens in the us system.

Best of luck.

6

Yes, I started with one branch, quickly went bilateral on that one (cheek), and then the bottom two started. This went on for a couple a years until the top two started as well. Then it went to TN+ATN, then including the ears, teeth/gums/tongue and throat. Sometimes it even shoots down to my chest from my jaw. The jolts are well managed with Tegretol. Trying to find something for the ATN at the moment.

7

TN is progressive.

Have you read the book

Striking Back by Dr. Ken Casey?

Thats how most of us got up to speed to pick whats best for our own treatments…and we share…ALOT,!