Newly diagnosed, first real appointment need held with formulating questions

I was diagnosed in the ER a week ago yesterday. I had an ER doctor take a look at me, then listen to my history (thought it was TMJ for years). He then consulted with a neurologist that was there for another case who agreed to come in. Low and behold, TN. They believe it might be Atypical TN.

I was immediately put on Tegretol and vicodin. The first couple of days were the most painful of my life. I wanted to die. By Wednesday, the pain was there, uncomfortable, but liveable. However, I can't eat. My trigger point is in my mouth. No food, no liquids, no talking, no laughing, no brushing my teeth... nada. I think I laughed too much today and it caused breakthrough pain.

Anyway, on Wednesday, I still had so much pain I was crying at night. So I called my doctor (I have an appt for Monday anyway, but he was out for the holidays). I got a FNP who I was begging to prescribe something stronger for the pain. She instead called in gabapentin. I don't mind taking the gabapentin with the Tegretol because it takes away my nasty sleepiness I was having (hence why I am awake at 3:30 in the morning). Anyway, the pain is tolerable. I have about 1 breakthrough episode a day that requires a vicodin. I still feel it, but not as much and I can relax after the pain killer sets in.

So, I have a follow up appointment with my regular doctor. Keeping in mind that I have no health insurance... what should be my plan? What should I be asking him? What should I be pushing for with medications? What should he be asking/referring me to do? I am worried about what tegretol is going to do to my body/liver most of all. I would really like him to give me a much stronger pain killer considering the vicodin is working a little bit. Vicodin has never been effective for pain for me. When I have needed past pain meds, percocet or nothing.

I just want a game plan. Something I can go in to the office and know and ask the right questions. Also, hopefully come up with a good short term plan.


although I lack the training to give all the answers to these questions I have just checked the Face Pain Info tab and it has now been beautifully broken down into bite size chunks to give you the answer you need to all these questions. I commend you for working out a plan to help yourself and wish you all the best. Jackie

This page is tailored for people like you who don't have health insurance and need help to get appropriate care.


I used lidocane cream for breakthru pain -- cheap!

I'm on Tegretol and Neurontin now for TN. I was given Stadol NS(an opiate nasal spray) for my TN and I became quickly addicted to it and used it up before I could get more. Whatever you do, don't go on that nasal spray!!! It sucks having TN.......I wouldn't wish this on my worst enemy. It changes your life totally. I can sympathize with you!!! I ask "WHY ME????"