Hi,
I just joined this forum today.
I have been sufferring from TN like pain for several years.
I had an acoustic neuroma (Benign tumor on the hearing nerve) surgically removed 5 years ago. Prior to the diagnosis, I had pain sporatically on my teeth and jaw. When I went to the dentist, I was told that I needed a root canal. This pain usually occurred around my period or ovulation. It did not look like classic TN so I dismissed it, especially after my AN diagnosis and surgery. With the removal of the AN which was 4cm, my facial nerve was stretched leaving me with weakness on one side of my face. I figured that that may have caused the pain.

Anyway, flash forward. I've been a part of this AN support group and many of us suffer from TN like pain. Mine occurs on both my left and right side of the face. (not at the same time) This week, I was at the dentist with my mouth opened for an hour having a cavity filled.. That night, pain on that side. It lasted 2 days and then I had a brief break for a day and then WHAM, it hit the other side.

I take imitrex which as of late does not help very much. I've been on Neurontin and topomax as well with very little relief. On average these aches appear 1 -2 times per month depending. I have 2 small sons so they really make it difficult to care for expecially since my almost 4 year old has autism.
I feel fortunate that I don't have the "electric" shocks that others report but I tell you what, I can't function when I have one of these episodes.

I want to learn to manage this illness. My neurosurgeon suggested I get an MRI to view the nerve. I've read from others that this TN does not necessarily show up on the scan. I've been to the Diamond Headache clinic in Chicago and they diagnosed me with Atypical migraine. That is where I was put on Topomax.

I recently got an NT1 device from my dentist to help with grinding and clenching. It seemed to help prior to my last episode. It fits over my top 2 teeth and prevents me from clenching.

Thank you for listening.
MaryLynn