I have had Atypical for 6 years now. Have been on every drug. All of which left me in another world. Presently on Trileptal. Neuro prescribed 150 Mg but I half it. Maybe I shouldn’t but I do. Two weeks ago I began having tooth pain. Not on the TN side. Pain will not go away. On my third round of antibiotics. Stronger dosage that make my stomach upset. Dentist said there was infection but that he could not see anything wrong with tooth.
This is how my TN started 6 years ago. First infection in tooth, then root canal , then pulled the tooth. Two more root canals. My neuro sent me to a neuro surgeon here in Oklahoma City. Very young rude surgeon who said he would not operate because " you cannot get TN from dental work". I tried to tell him of all the cases that I have heard to the contrary.
I did find a neurosurgeon that performed the Gamma Knife. Did more harm than good. Left side of face is numb. Pain never stops. The only drug that helps is Loratab. Now that is not working.
I went to the Mayo in Jacksonville three years ago. I expected more. The good- All test’s are done in a two day period instead of making appointments and going back in two weeks. The neurologist told me the only way that he can be sure of TN is in a process of elimination or exploratory surgery. I choose to not have the surgery. At this writing I called Mayo back and made an appointment in hopes that something has changed. I am not sure I will go because of the air fare and hotels. I would if I thought there was something new.
My 70th birthday is coming up and I was hoping that my retirement years would be so much better. I am in pain every day and guess I will carry it to my grave.
Just wanted to vent.
Sorry
Janis Wilton
I’m sorry to hear about your experiences Janis. Vent all you want, we all feel your pain. Literally. I too have atypical. Practically constant. There are times I had wished that I had the usual kind, occasional strong pains but at least it would leave us be when it was done.
Have you tried the combination of Trileptal with Cymbalta? I swear by this combination. Nothing had helped me as much as these two together has (other than the first time I was diagnosed and they put me on tegredol and when it worked, then they confirmed it). My uncle is a neurologist (in another country) and he was the one who suggested it which I passed on to my Neurologist who gladly prescribed it for me as we had run out of options.
I do hope things get better for you.
Hi Janis,
I feel ya girl. I have been through alot of the same things you have described. AT one appointment I was told that I didn’t have TN because I had it on both sides of my face. You keep looking for a new doctor. You have a right to be heard. I guess I am a very stubborn woman. I refuse to live this way for the rest of my life. I’m going to scream and yell until enough people get tired of listening about TN that they figure out how to fix this. There is just not enough of us for people to really see it as a problem. I will be praying for you Janis. Let me know how you are doing. 