Advice on Medication

I am going to see a neurosurgeon Jan 25.

I was diagnosed with TN 2009. I have used Gabapentin, Lamictal, Depakote, Tegretal, Triliptal, Lyrica to no avail. It just did not work for me. I stopped all the medication and just tried to relax and not think about it but now it is just beginning to get to painful. What I did was rinse my mouth with the yellow Listerine...(that took my mind off the pain), rinse with scotch or vodka (that also took my mind off the pain). My triggers are warm foods, chewing and sometime talking. Cold water alleviates it. I have constant pain on the inside of my mouth....lower back gums and upper back gums on the right side. I do not have the facial pain. My pain is inside my mouth.

Has anyone used Topamax with success for TN?

how did it start? maybe bms (burning mouth syndrome) Do you have headaches at all with it? Can you describe the pain in your mouth?

My mom takes Trileptal 600 2x a day. She also takes an anti-depressant as part of her pain management. The thinking is that if you elevate your serotonin levels, they help the trileptal work better at a lower dosage. Her pain runs from the top of her head down the one half of her face.

Have you tried meditation? My mom is 73 and started taking Tai Chi classes. Practicing her Tai-Chi moves (it's not as easy as it looks!) also helps her take her mind off her pain. She's not in any pain, but she fears having a flare up since it goes from 0 to 100 with her. I hope this forum is able to bring you information that helps.

I've not used topamax, but just wanted to say i can relate. Most of my pain is inside my mouth as well, and i also find that cool water held in my mouth helps some.

I really don't have anything to add...i just wanted to comment and let you know you're not alone.

~Wishing you info and relief


To jstagrl29…I thought it was BMW. I do not have headaches. It feel like my gums are being cut with a thin knife…more like scraping with a thin knife. Then it pulsates and feels like it is burning

BMW thats a car lol did u have any dental work done around the time it started hurting?

No I did not. I have no teeth in that far back of my mouth…lol. I meant burning mouth syndrome. My tongue also burns on that side which is the right side

do you think bms is a possibility for you? i havn't done to much research on that condition i don't know if its localized like that have you ever been on the facial pain association they have good info on there as well

oh what i was guna say is all the drugs u have taken i know that 3 of those are antisezure meds...try tricylic anti depressents they are better for 24/7 pain if the pain is unbearable..

Have you thought about trying some magic mouthwash? It may numb you mouth up and help give you some relief better than listerine and vodka. It’s a prescription but I believe your doctor can call it in. You can do a sreach on it here just type in magic mouthwash in the search box that is right above all the discussions and you can also google it to find some more info. There is also lidocaine gels (for the inside of your mouth, lidocaine creams and patches for putting on your face as well too. All can be called in by your doctor. The last thing to say is it is important to take some type of medication to help the nerve from firing off so much. Over time this can get much worse. I know Red explained this awhile back and if I can remember the thread where he explained this I post a link on this thread. Lastly I’m sorry to say I don’t have any info for you on topamax, but I hope the above might help you some and give some more options for you. Hope you have a great day that is pain free.

Hey Kari …id be interested in that article u spoke of about taking something because I went 6 months on no meds fighting extreme pains thinking it would just go away but it seemed to just get worse if yah find it leme know!

Topamax did not help my TN. I also was put on Elavil, Cymbalta, Lyrica, Lamictal, Nucynta, Tizanidine, Botox, Indomethacin and more that I just can’t remember. They didn’t help me either. The only one that ever made a difference was Tegretol. But that was ME. I have Type 1 and 2 on the left side.