I have had TN/Atypical for six years. I seldom have “episodes” as mentioned in so many of the blogs. My pain is constant. My Neurologist said it is more Atypical. On Lyrica and Trileptal. Neurologist also stated that one cannot see from a MRI or MRA the blocked TN nerve.
In the last two weeks I have a new problem. Unrelenting facial burning. I went to my PCP. He prescribed a steroid. That is not working. Oklahoma City had the worst Blizzard in history so I am homebound until I can get back to the Neurologist. My husband has MS. We are a pair!!! Anyway has anyone in this group had the facial burning. I have pain pills which are really not cutting the pain. How did I get so lucky? I ask myself that all the time. What have I done in life to have this pain? Most people have episodes and go into remission. I do not. As mentioned before, I had the Gamma Knife which left me with partial nerve damage on one side of my face. Now I think this facial burning is another result from the Gamma Knife even though it was three years ago.
I did have the Boniva Infusion two weeks ago. Side effects do not mention facial burning. Anyway, I pray that each of you in pain may live a pain free life one day.
Janis,
I’m sorry you are having so much pain. I have MVD in April. Most of the pain that I still have is the atypical but I do get relief with medicine. I am considering the Reclast infusion. I hope that that is not a side effect of that. Did you check with the doctor who gave you the infusion? I do pray that all of us can have a pain free life. I am so thankful for the relief I have had since so many have not or either are not candidates for surgery. Keep us posted.
Liz K.
hi,i have just read your post with interest,i have had aytipical facial pain for 5yrs ,a couple of wks ago i started getting the electric shock type pains as well so my neuro said i also have tn,lucky me , anyway like u i have the constant pain,no remision or a break from pain at all,over the last yr ive been getting facial burning on a regular basis,sometimes once a day for about an hour or sometimes several times aday,when i get it ,it feels like my face is on fire and its literaly burning me,im fair skinned and it looks like ive either been sunburnt badly or burnt,its so red and really really hot to touch,a cold flannel doesnt even seem to help either,i just have to sit it out till it goes,ive mentioned this to the neuro and my gp and theyve never heard of this before,you r the only other person i no who also gets this,it cant be the cold weather thats causing this ,not in my case anyway,as i also get this in the summer,funny this is as well i also have extremely cold hands,so while my face feels like its on fire my hands r like ice blocks,
anyway ,thats my story ,my face is burning as i write this now,im definatley going to mention it again to my gp as its really unpleasant,if u hear of anything that helps could u please let me no and vice versa
take care
liz xxxxx
yes i do have facial burning have had tn since July 2009 . I take Tegratol only 600 mg a day . tried higher mgs but cannot tolerate side effects . My burning today is unsightly drives me crazy . iI have pain meds but try not to take them . My daughter is 13 and i just cant be strung out in front of her . completely understand your pain hope we can soon get some relief susan
Thanks for your comments. The facial burning just doesnt’ STOP. There is no way I can stand the pain without a pain pill. Like you Liz, I stay in La La land because of my husband. So I put up with a lot of pain. This pain is like what people describe as shingles pain. But I have no sores. I wish there was a doctor who just wouldn’t shake his head and say we will try another pill. Oh well. I wish all of you will get well in 2010.
I am having dental work done and a few weeks ago after coming home from the dentist and the novicaine wore off my mouth and lips burn constantly like I gargle with jalapeño juice and it is driving me crazy. The dentist said he did not do that to me. I am going crazy with it.
janis,
sorry about your pain! I too have the facial burning. It is unrelenting at times and makes me feel like I am just going to go crazy. 
Pain pills take the edge of, but don’t really take the burning pain away.
I am sorry you don’t really go into remission or get relief. I sometimes go through periods where it doesn’t bother me on certain days. Then out of nowhere it comes back full force!
I hope you are a little better today.
Went to the dentist yesterday and the burning is worse, so it is the dentist doing it and he said he was not. No more dentist for awhile for me!
Hi everyone! This is my first post. I was first diagnosed in 1995 but have never had any surgeries and done nothing other than tried pain pills and Toradol from time to time…usually does little good. I am going to a new neurologist in 29 hours and 29 minutes (can you tell I am more than ready?). I spoke with him today on the phone and he told me he would most likely start me out on Tegretol and possible Baclofen. I never had burning before until recently. It is always in my lips or near my cheek. I have always been a chapstickaholic but after using it twice yesterday and having an attack within five minutes both times…to heck with chapped lips. I don’t plan on touching chapstick again anytime soon. I have always been able to cope with the pain and make my way through it until my next remission…but this time it’s come back with a vengeance. It is much worse now than it was 15 years ago. I wish you all the best and hope you are able to find comfort!