We are patients living with Trigeminal Neuralgia, here for your support.

Denial - Is it really TN?

It has been very enlightening to read about everyone's stories and to learn more about this condition. Thank you for sharing and for the few of you have shared nice comments with me. I continue to have difficulty believing that this is what I have, but deep down I know it's true.

I feel like I self-diagnosed myself, as I discovered this disorder when I was searching on the Internet for something to explain the pain I was having. I had already gone to the local Medical Center complaining of sinus pain. They do the the normal tapping on the sinus cavity and I jumped off the table. Hence, the prescribed the strongest antibiotic and flonase. It was after I started these that the pain worsened. After finishing the 10 days of antibiotics and finding TN on the web, I printed out the medical information and walked into my primary care physician. I told him that I thought I had TN and he said he agreed, without even doing much of an exam. He prescribed Neurontin and referred me to a Neurologist (my appointment is 2/16) - is this typical?

Then, I found this website (thank you, God!) and have been educating myself further. I have been thinking back in my life and have realized that I have had this condition for many years. It may have started when I had 26 cavities filled right after I had my braces removed. Shortly after that I had a root canal performed in my lower left jaw. I thought is was all a dental fear but my mouth would often hurt like I needed another root canal. I was so afraid that I didn't go to the dentist for 7 years. When I returned, I made sure that whoever cleaned my teeth went very slowly, was gentle and never used the laser. Invariably, the work would 'awake' the nerves and would swear to never go to the dentist again. The nerve would quiet down, taking me into blissful remission. Whenever times became stressful, my teeth would start to hurt again. I've been in for more root canals and one double root canal. I think I have 10 capped teeth and 6 root canals.

I live in the mountains where it snows and is cold in the winter. Almost every January, the pain comes back (though it's been a few years this time). This particular January, I could not tell where the pain was originating. It traveled from temple, to my upper sinus, to the side of my nose to above my teeth, between my teeth, to various bottom teeth to my jawbone and my jaw socket. The pain was debilitating and I could do nothing else while it was there. The pain lasted 15-30 minutes, and then suddenly it would leave. On the worst day, there were 7-8 episodes. Is this all typical?

Of all people to get something like this, I am one of the worst. I am a very health-conscious physically fit person who is the worst sick person ever. I am a business owner and cannot afford to be sick let alone be on drugs. I absolutely detest drugs and will go through hell before taking anything. I believe I have extraordinary mental capacity and can control this (does this sound familiar?). I have been focusing on stress reduction and relaxation and the pains have subsided for the most part. I think I have 2-3 in the last week and they have not been as severe as the others. My guess is that I am going into a state of remission, I hope. This time, however, I feel this continual dull ache in my jaw joint and my ears are ringing still. The question I have and the question I will ask my neurologist is whether or not I can expect that the next flare-up to be even worse than the last? Or does it depend on the amount of stress in your life? (This last year was perhaps my most stressful ever after experiencing the deaths of my brother and sister, ages 58 and 57-that is another story. Oh, she thought she had TMJ, wondering if it was really TN.)

Doesn't it seem like we could be imagining all of this? I just don't want to admit to anything.

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Comment by Cleo on March 27, 2012 at 1:47am: Did you feel any electrical type jolts in the areas that hurt now during the injections? I can tell you that there was no way for my nuero to determine my nerve damage by looking in my mouth at my prior dental work. I do not have any soreness in the actual spot of injection. It's my teeth (molar to the canine) feel like they are crushed together and the colder it is the more crush i get. I have a numb tongue that used to feel like a burning electrical wire. I'm positive my nerve it not considered dead.. I do not have any jaw joint problems. TMJ is the jaw joint disorder.. Does your jaw click when you open wide and close? Have you been back to dentist over this? Maybe all you have is TMJ..

Comment by Sally on March 26, 2012 at 12:30am: I think that what happened to you also happened to me. I have had multiple injections in the same place at the back of my jaw.... that is actually where my continual soreness is. Interesting. My neurologist informed that it was the mental 'branch' of the trigeminal nerve that is dead. When I have my attacks the pain travels all over from my temple to my teeth (upper and lower) to my chin and sinuses. I thought that where my soreness is is where the TN originates. Can you shed light on the disorder you mention?

Comment by Cleo on March 25, 2012 at 11:26pm: the mental nerve serves the lower lip, chin and a few teeth and has nothing to do with where the jaw opens and closes. there is trigeminal joint disorder not related to trigeminal nerve disorder...

Comment by elstep on March 25, 2012 at 5:05pm: Its been 10 months since I had the full electric shock attacks. Now I get aches in the teeth, jaw and sometimes cheek. Different parts of my face ache on and off. Today I got a heavy pain whilst eating and I worried this would be it, i had a dull ache for a while but then it settled down again. like you i hope I never experience that first attack again.

Comment by Sally on March 25, 2012 at 3:40pm: Well, yes, I suppose. There is no pain unless I push right where my jaw opens and closes. It is almost like a calm volcano. I can tell that the pain could come back (erupting) at anytime and there are times when I feel pinches between my teeth or in the sinus cavities. Now that I know why that happens, it's both comforting and worrisome. I never ever want to feel the extreme pain of an attack, but I know someday I will. Is that how it is for you?

Comment by elstep on March 24, 2012 at 3:29am: Hi Sally do you have any pain or aches at all? I just wonder what peoples defines remission. i count myself as in remission but have aches, tingles, discomfort each day but it is not 24/7 and it is not pain.

Comment by Sally on March 24, 2012 at 1:54am: Thank you for commenting. Yes, I did have a full CT scan of my sinuses and all came back normal. It's been a month since I met my neurologist (and friend). He tested my the various branches of the trigeminal nerve on the right side of my face and discovered that the 'mental' branch of the nerve was totally dead, and he asked me why I hadn't come in before! We agreed for me not to go on medication as I have been in remission thankfully, but he said I could call him anytime even at him and he'll call it in immediately. When the neurologist looked in my month, he was convinced that it was my extensive dental work, like you, that caused the condition. Again, thanks. It is comforting to know that others have similar experiences as myself.

Comment by typqueen on March 23, 2012 at 5:50pm: This is a tough diagnosis to live with, to not have a "cure", not even had definitive treatments and for some, have pain 24/7 always. And many doctors still don't get it. Did you have a CT scan and endoscopic exam of your sinuses? That would definitely rule out your sinuses if the ENT did that. I have been through a lot of dental and sinus issues with surgery, so it's no wonder mine started. And I was going through the most stressful and full of anxiety time in my life (still am). So the more I learn and read, it's no wonder it started. I think looking back over my life, I probably had other TN pain before, never this severe and constant and LONG.....but I know I have had twinges and tics before. I think it's great you have the appt with the neurologist. Hopefully it's a good one who can shed some light for you and give you some peace of mind at least.

Comment by Cleo on February 5, 2012 at 4:10pm: That is some extensive dental work. Mine all started from a dental injection for ONE tooth to be extracted. I got up and left and never had the tooth out. thank god... Of course my dentist tried to make me think all would be fine in time. but one day about 3 or 4 months later a neurologist changed my mind in a matter of a minute and suggested I seek an oral nerve surgeon opinion... a few months later i had my jaw sawed open to take a look at the nerve damage done. If my dentist had not been such a jerk?? I may have had a better chance at full recovery if my jaw had been sawed open sooner. who really knows... all i know now is that its not just happening from injections. Over the past decade. Ive talked to people who have had every dental procedure known with different types of nerve damage.. It is no ones imagination! It is all very real.....

Comment by Jackie on February 5, 2012 at 5:27am: I share your feelings and attitude. We have a certain way of life and hate the thought of anything disrupting that. Denial is easier than confrontation. It may even be a bit healthier than wallowing in our misery, which I for one have spent a lot of time doing!

My very worst pain periods have coincided with extreme stress. Losing your siblings so young in such a short space of time must have been so very stressful. My heart goes out to you.