I have had MRI and it showed that
I didn't have ms and I didn't have rumors. They are not sure what is causing mine and I am awaiting a high resolution MRI so that I can have surgery with the gamma radiation. But that is months out. I need help now for the break through pain
All I know is that the only pain relief I got from a drug was oxcarbazepine. I tried gabapentin but only worked for a month.
The drugs made me crazy anyway so opted for radio frequency surgery. It worked tho there are some irritating side effects, numbness mostly, where the nerve has been fried. Once the nerve grows back I may have to do it again. Could be 3-7 years. But no drugs, no TN pain. I had the usual electric shock pain that had me on the floor screaming in the middle of the night. But all gone for now.
I vote for any of the surgeries, there are about 5 or 6. Drugs can work too if you find one that lasts and you can stand the side effects. In any case, do the homework and get your health back!
Find the TN expert in your area...makes a difference. Neurologists here, I found, were only good for getting
drugs. I found a TN surgeon, specialist. He knew what to do and has done it thousands of times.
The hospital with tn specialists is on two hours away but u am in a long waiting list as they are the only hospital in the state with gamma radiation therapy. I guess I also have massive swelling from a tooth infection which is what triggered my attack. All the doc could do is give me hydro's and tell me go to dentist for panoramic X-ra. I had appt already for tomorrow so I guess it works out. He can give me strong antibiotic and I can suffer with horribly swollen jaw. :-((
I. Have had TN for 17months confirmed by an MRI scan.been on numerous drugs and 2 days ago had Percutaneous glycerol rhizome under general anaesethic. I am so numb on my right side of my face affecting my ear & my mouth.just want to know if anyone has had this procedure & if so how long can I expect these symptoms to last.
I had a procedure that left my face numb and with a case of amnesia d... Forgot the full name but couldn't touch my face. All that ended after 3 or so months. The numbness won't go away until the nerve grows back and you have TN pain again and have to repeat the procedure or do another kind. Most leave your face numb and kind of messed up. I figure it is a trade off until someone truly finds a cure. The weird face stuff is still better than TN pain or those drugs. The drugs for me either didn't work or made me unable to function. So a numb part of my face? I 'll take it! Thanks for no TN pain! I am glad we have options...
Thank you Alicot for your response can you remember the procedure you had was it the glycerol injection? The numbness affects my mouth, teeth, ear & head.finding it difficult to eat.yes I agree TN is worse however didn'expect this extent of numbness,my face is very swollen on the right and I find it difficult to lie down. A bit anxious about it all and need to get back to work.still on the drugs as well 
You are very welcome, Sharon. We are dealing with something quite unpleasant.
I had the radial thermal frequency surgery. They put a needle in your face onto the nerve that is causing the problem and burn it (fry it). And NO they don't tell you the real effete of any of these treatments. I think all but one causes problems to your face but no one tells you much about that it seems. Everything I read about it, left that part out. I have numbness all along my jaw where the nerve is and my lower lip.
procedure but there are still problems and imagine there will always be some numbness and troubles eating. I even have trouble talking sometimes.So here we are in the land of either go crazy with TN pain or deal with numbness and troubles from the treatments. I also have itching inside where the nerve is. That i also annoying.
Glad you are out of TN pain. That IS the worst pain I even encountered. I know why they call it the suicide disease. UG!
Alice
I am happy to report my flare up is coming to an end and I am finally able to eat solid food again. What an awful experience. So glad my medicine normally takes care of the pain.
Yay!
Thanks for all the responses,so appreciate sharing with folk who are /have experienced similar symptoms. Feeling pretty down like to read the weekend papers & do the crosswords but too much pressure on my right eye. Going back to work tomorrow & feel quite anxious as my job involves a lot of paperwork & computing
Hi Sharon,
I totally understand how you are feeling. I teach and have to be active and ready to communicate with my kds. I have had to cut back on my job because I just can't keep up with it anymore. But love it so much
I found a way to keep doing it. Work for a smaller outfit, smaller classes of home schoolers for about 5 to 6hours a week. I prep for classes a bunch too, so I am busy without the added stress of having to get up early and getting home late plus oversized classes and lots of crazy kids. Now it is wonderful.
It does get better. You will heal from the glycerol "surgery" and do well, not perfect, for years.
Alice
Hi Alicott,
Thank you so much for your encouraging words. Went back to work yesterday and although coming home exhausted managed ok 
Hi Sharon,
I am so glad you are improving. I haven't stopped improving from my radio frequency surgery and it has been months. Tho I dread the day the TN might come back, I am enjoying being free of it. I guess we are now people with face issues until they find a non invasive cure.
Best of luck to you in your glycerol recovery!
Alice
Thank you Alicott seeing the neurosurgeon this afternoon,really suffered yesterday hopefully get some definitive answers. Have a good day.
Has any one I here had the gamma radiation knife surgery? I am curious about the experience as I am looking into having it.
Oh my I am having a serious problem. My tri gen seems to be affecting both sides now. And yes this is brand new. I am going to my doctor today. But my meds are not helping at all. I am on 900mg of carbamazipine and 900mg of gabapentin everyday. Oh I hope my doctor can help, I am in so much pain. Didn't know I could handle this much pain.
This is horrible! Ask for the surgery so you can end this pain!
I did. I have been on the waiting list for a year.
Why so long? Where are you?!
I am in arkansas USA.