I had to fire six neurologist before I could find one that was willing and able to help me. Some just don’t have a clue. Keep on trying
Hay, It's wheel again how you doing? I worry about any one I meet here. TN is tough. I had to go to ER several times. I was told that an injection of Dylantin (hope that's the right spelling????)> Anyway it has to be done in hosp. is supposed to stop the pain. I never tried it but I would have if not for this CK I had. That was my 20th operation because of the accident so I know how tough it can be. Don't give up. Tell the doctor that you want refurs to a nuro that will listen, and don't let them talk you into denistry SH&*99. Keep on keeping on
Wheels said it
Jennifer, so sorry you are in so much pain. Please see my post about my experience with Tens therapy for TN.
Sally
Well I’m still in daily pain that is unbearable. Saw a Dr I had seen previously when this all first began. She added trileptal to my already gabapentin kolonopin and lexapro. I see my go tomorrow and the 28th I see the maxiofacial oral surgeon the neurosurgeon wanted me to go see. I don’t know what to do NOTHING gives me relief. What the hell do I have to do?? The neurosurgeon basically scared me telling me since I’m atypical no procedures would work and high chance it could make it worse. I can’t live like this. He said going to Ohio ( I’m in fl) to get a PNS installed could be an option but I just don’t know BC my pain is ONLY inside my mouth left side burning and I want to rip teeth out one in particular. Any advice please. Should I go see a different neurosurgeon?? Mine now scares me telling me it will make me worse as the surgeries are for typical not atypical. He wouldn’t even try a simple nerve block.
Gp *
Hi, YES go see a different Nuro. If you can't get one to help go to one that will. I want through three before I got the help I needed. Don't let them tell you what you feel you need they don't have this stuff and can't even emphasize with you, They can at best sympathize with you. I don't think any that has not had this stuff can know what it's like. My Nuro told me that one thing that might work when I was in such pain was an IV of dylantin(sp) but it has to be done in the hosp. He told me to go to the ER and tell them I had TN and this is what would help.
I didn't have to do it because I had the CK and that stopped my pain. I've been pain free for three months now and that is a real blessing. Hang tough girl you can make it just don't let them buffalo you.