Atypical tn and procedures?
Posted , 4 users are following.
Have anyone with atypical TN tried nerve blocks, balloon compression or something else?
Only people with atypical one please answer.
Pills are not 100% working for me as I still have a lot of pain many days(have tried all the pills and many combinations, Neurontin so far best one) and MVA didn't work either. I am only 26 so I am really scared that my life is over now. Have suffered 8 months already. Can atypical one go to remission? How people live with that horrible diseas?!?
0 likes, 3 replies
sam_90350 dona40912
Posted
My question to you is do the neurotin help take pain away.im in the same boat as you I feel my is over soon
Thanks
dona40912 sam_90350
Posted
Sam I know how you feel. Do you know why your pain started? How it started? Have you tried any procedures like MVA or something else? Did doctors see anything on x-rays etc?
I had MVA and they found 3 blood vessels touching the nerve. Also I had one blood vessel broken and scar tissue on the nerve. They fixed this mess with MVA 2 months ago. Now I have better days and worse days. Neurontin is only medicine that has worked so far. I tired it before MVA also but then I was so full of medicines that I didn't understand did it help or not. Before MVA I was staying 5 weeks in hospital and they pushed different drugs in me to find something that helps, but nothing helped. Now after MVA I first ate 1400 mg Tegretol and 75 mg amitriptylin, but these didn't work at all. So I decided to try Neurontin and that has worked so far! Today I had horrible pain in day time, but then I took 1200 mg Neurontin and after a hour pain was much better!
I do feel like drug addict as I eat so many pills, but until they work I'm happy to eat them. And if I eat too many then at least overdose will get me out of this hell.
saaz79347 dona40912
Posted
Dona, I haven't had atypical TN but i have had TN of the 3rd cranial nerve and i know how bad the pain is. Be strong and fight. I felt the same way you did, but you need to focus on people around you when you have negative thoughts. That's how i was able to cope with each day. There are only a few surgeons who are experts in this condition and unfortunately i did not go to one so i won't recommend mine, but i have heard Dr.Mishra in India handles a lot of TN cases from all over Asia and also Dr. Adil Chagla in India. This is a rare condition and unfortunately, we have to travel far sometimes to get the proper advise and solution. I like you had tried a lot of pills as well, and the one that worked the best was Tegretol ( in hgh doses ). With Tegretol, i still had pain occur but it wasn't as frequent. Hope this helps. Good luck to you. Feel free to ask me more if you need to.