It is currently "assumed" that I have TN2. I have yet to receive the results of the MRI I had a few weeks ago, but my neurologist believes that this is the case for me. I, on the other hand, do not feel this is my problem and hoping for a much simpler diagnosis, with a definite and quick repair. I was hoping that some of you could offer your thoughts on whether you think my symptoms fit the bill.
If I really think about it, the possibility is that the pain started five years ago in a tooth. I had a root canal. A year later the pain was still there, dull and aching, like any other toothache. So I was sent to an endodontist. Who drilled back into the root canal, hoping to clean it out more. The pain still persisted, and a few months later a root canal was done on the tooth next to the original. The pain has lingered since. Fast forward to almost two years ago. I started getting a burning feeling in my face. Sort of in the right corner or my mouth, extending to the center of my lower lip a little of my chin and a small portion of my right cheek. I thought that my lips might be chapped but then this went on every day for weeks, then months. When I first went to the doctor they said that maybe I had a vitamin deficiency. (I had been the lucky recipient of food poisoning a few months prior, and although the timing didn't fit, I was willing to consider that). My vitamin B12 levels were a little low, so they gave me a few months of injections, but the pain persists. My blood tests show nothing abnormal. To the onlooker, I am a healthy 40 year old woman. I feel as though no one believes me....if you can't see it it must not be there...
My symptoms really are burning on the right hand lower side of my face. There is almost a "creepy crawly" sensation in the area as well. I realize that I am almost constantly pursing my lips and tensing my cheeks, maybe in response to the discomfort, but I have no control over it. It seems that it just happens. If I smile, which does not happen often any more sadly, it feels as though the flesh under my skin is ripping. It is so painful. If I want to eat a big juicy cheeseburger, (yes I know...bad for me) I can't on most days, because I can't open my mouth wide enough. If my hair gets stuck to my face it makes me cringe. I feel like I have jaw/tooth pain on the lower right hand jaw bone. Cold and hot feel horrible IN my mouth, but If I put a cold bag of vegetables on my face, it feels better. If I have a few alcoholic drinks, (I know...another no-no), it appears that the pain subsides, but I pay for it twice as much the next few days. The pain is almost every day. I do get maybe a day and a half of minimal discomfort where I think that the problem may be going away, then bam...it returns. It does not hurt when I sleep....which is great...if only I slept always. I wake up and am ok for maybe an hour. After a little while it begins again, and then progressively gets worse throughout the day. I was put on gabapentin for a month. This just caused me dizzy spells, a and the desire to sleep all of the time. I work in a dangerous environment so that needed to be changed. Yesterday they gave me cymbalta. I reluctantly accepted, but am terrified of the side effects and of being on meds for the rest of my life.
I have spent at least a thousand dollars in the past month on herbal remedies, and inversion tables, and acupuncture and books. And the time I have spent trying to fix this on my own ....hours of my life I can't get back. I love to talk and eat, and I LOVE going to the dentist for cleanings...all things I have a hard time doing now on most days. I feel horrible often, mostly because I am sad about the pain and it is taking a toll on my marriage. I can rarely kiss my husband because it is grating. If the dog rubs his head against mine I panic because it might tear at me. I am not myself because of this discomfort. Again...no one understands, because to them I look fine.
I keep hoping that they will consider the fact that I have some weird infection or heart burn that is causing super acidic saliva, or a pinched nerve in my neck. But they tell me that is rare. Correct me if I am wrong, but isn't the onset of TN2 pretty rare?
I guess I just see all of your posts and realize that I can't feel like this every day for the next 20+ years like some of you have. You all show amazing strength to deal and I am impressed by your stamina...but I don't want to be part of the club.....(not that you do) I want a direct reason for the pain, and a plan to fix it permanently.
So tell me, with my symptoms, do you think it is TN2?
Thank you all so much for reading my ramblings, and considering my concerns!