My name is Kelly, and I've had face pain since February of 2010. It is extremely sharp and bilateral. It is mainly in my face but occasionally goes into my scalp. It prefers to be in my temples, eyes, mouth, sinuses. I am fortunate that it doesn't become aggravated by touch or chewing as with the usual TN, but it is pretty constant. It just varies as to whether it is a tolerable 4 or I'm crying on the couch rocking back and forth at an 8. Just thought I would give a little more information about what I'm going through on a daily basis. I look forward to talking to you!
Hi Kelly, my name is Donna. I know what you're going through. I've had this thing for 15 yrs. now. Mine was in the lower jaw, now its in the upper. I had been able to control the pain with meds for awhile, but now the pain is more intense and meds aren't helping anymore. If I can just keep my mouth closed it doesn't hurt as much. And I know what you mean by how the pain varies. The intensity changes, and will get worse if you're under stress, so it really helps to talk with others who know what you are going through. Family members and friends are supportive but it helps knowing someone else who understands and has the same thing. This is a really good place to be for that support.
Hi Donna,
I am so sorry that you are part of the suffering that doesn't let you move or speak without awful pain. My pain is bilateral and just about everywhere in my face, but I'm not subject to the pain being aggravated by touch/chewing/speaking. Sometimes my pain varies because of stress or a loud, sudden noise, but sometimes because of nothing at all. I find that my family is much more supportive and tries to understand...but other people and friends you try to explain it to...sometimes it's pointless. I hope that this finds you having less pain at the moment.
I know how you feel. I was diagnosed with TN but it isnt the norm. I also have constant pain in my lips, sinus, forhead but I also get sharp stapping pain coming from my ear. Are you on meds if so what are you taking. I got off all mine nothing was helping and most made me depressed more or I couldnt get out of bed. Now I am just using a bean bag heating and like you sometimes the pain is so bad but it never really goes away. Hope things get better for you. I got mine reight after I had Bells Palsy. It took 11 months for them to fiqure out what I had. What type of TN do you have?
Hi Daisy,
I'm on Savella 50mg 2x/day and Depakote 500mg 2x/day. It doesn't seem to be helping but we keep changing the meds up every so often. Neither heat nor ice help my face, even though I've tried. It is so very easy to be depressed with facial pain. No one can see your illness but it's killing you. Mine came from shingles in my shoulder, the rash went away and the pain just moved up my neck and into my face - and stayed. I've been diagnosed with "atypical facial pain", not even really a type of TN since they're just shooting stuff around. They don't know what's going on.