Hi all. I'm so glad I found you. I just started this journey last Wednesday and have already had two dental appointments, two doctors appointments, and two ER visits. I was diagnosed by my doctor on Monday and just saw him again today. Lucky for me he has TN and was able to recocnize my symptoms. He is going to try to call in a favor to get me into a neurologist right away. I started on Tegretol on Monday and had a high dose steroid infusion at the ER Tuesday night, along with Toradol and Dilaudid, both of which I am now taking at home. I had some relief yesterday and then it came back last evening and all night. I have constant pain in my jaw, under my jaw, across my cheekbone, and into my ear and mouth. (Left sided) Tuesday the lower part of the left side of my mouth and chin went numb. Any tips for those of us just starting this journey? Does ice or heat seem to help? I read through some posts and did ask my doc for lidocaine patches and oral solution today since the Dilaudid does not seem to help. Should the Tegretol be helping yet? I feel like I am going to lose my mind! Thank you for reading my rant :)
Hi there!
Weird, but for me, lidocaine patches worked or more hous than Dilaudid! Narcotics are not the best helper for some people… Your tegretol might take a few more days.
For newbies…
There is no cure and is rare to have.
Get the book. STRIKING BACK. By dr ken Casey
Read and learn all you can. You will have to make decisions on what works for you.
Some meds burn out fast,
Make sure your neurologist is …TN up to date… And is your partner…
many of us are able to go and get meds lowered or eliminated by MVD surgery…newest stats are high percent in the 90s… If top TN surgeon…within the first 3 to 5 years. Not brain surgery, cranial.!
I could not live with the meds, took my IQ away… I am two years out of MVD and pain free.
but only in remission…not cured forever.
Keep posting!
Kimberly also!
At times I find a heating pad to help, especially when it is in my jaw or cheek bone. Tegritol may or may not help, you should have a good idea if it is doing anything in a week or so. I know that sounds like an eternity right now.....
Welcome Kimberly!
For me tegretol worked within about 24 hours. I have tried using other meds when effectiveness of tegretol wore off- but nothing else has worked- so now I take high dose of extended release tegretol. I should say that due to multiple other medical problems I am also on a high dose of neurontin, plus lamectil, Norco, methadone,( and others that that are not pain or seizure meds) but these meds probably also help the TN. When I am having flare ups and pain I find that ice on my face helps. And, no worries, we are here to listen to each other’s rants 
blessings!