Monday, May 16, 2011

May updates addition to the lingual nerve damage, orofacial pain specialist #2 (who I avoided earlier because he doesn't take insurance, and specializes in TMJ) diagnosed me with severe temporal temporalis. There's an explanation of it here

I never thought of myself as having TMJ, or being a teeth clencher, but you'd be surprised what stress does to the muscles in our necks, shoulders, and faces, and how everything is attached all the way back from your mouth to behind the ears to neck.

It became a perfect storm after the initial injury, IMHO, because that initial glass- crunching-like pain in my mouth naturally made me tense, which creates more pain, which makes me anxious, which makes more pain, and...well, you know. A vicious circle. The physical therapist told me my biggest problem is that it is now chronic; but the muscles are in spasm that's not going away; I may never get completely back to what used to be "normal".

Add two root canals to that I had last Spring which were possibly unnecessary and - voila - you get extended, chronic pain that may take years to resolve, if ever. At least I have a diagnosis - after dozens of doctors looking at me like I'm from another planet.

Things are a little better in the last 2 months, since wearing the bite guard at night, doing 2 courses of low dose steroids, and physical therapy, I'm feeling reduced headaches and facial pain. However, the burning continues... I don't know if anyone is going to be able to treat that. Everything -from shoulders to throat to ear to temples -is made worse by stress, when muscles tense up.
FYI - Reducing the number of hours I'm on a computer or in a car commuting has been very helpful.

Being on leave from work has saved my life, given these treatments a chance to actually work and show improvement in my condition; that boss and the stress was absolutely killing me. I wouldn't have made it there - I'd have quit by now. I'm interviewing for other jobs but have hit some speed bumps (I was promised 3 job offers: one company went through a merger so the job disappeared, at another the CEO was fired so there's a hiring freeze; a third wanted to cut my pay 30% and I just couldn't accept it). Even with all this, the economy still looks brighter than at this time last year.

All I can do is focus on deep breathing, relaxing my shoulders and face, and trying to stay distracted when the pain ramps up.
Here's what I still rely on:
  • Viscous Lidocaine applied directly to tongue - numbing for about 20 mins. (use before meetings and other important events)
  • 1/2 Klonopin on the tongue - a good temporary fix but (yawn) makes me drowsy.
  • Pina colada flavored gum - not supposed to chew it, so I try to just let it rest in my mouth... Try being the operative word in that sentence.
  • Biotene mouthwash rinse for dry mouths (won't burn like others) after eating
  • Low doses of painkillers, still almost an every day necessity...but no more Lyrica or Neurontin for nerve pain - too much brain fog, and the blurred vision I experienced never really went away. Or, maybe I'm just OLD! (just had a birthday and now I'm pushing 50 - ackkk!)
  • Avoiding spicy foods, excess sugar, and caffeine

Hope all is well - please be sure to take a minute to post how you are doing :)
- J


  1. Hi Jane, thought I'd check in with you. I'm glad to hear you are off the Lyrica. Brain fog and blurry vision, not a good combo when you are trying to fight the good fight. Also glad to hear you stuck with the mouth guard. Mine also gave me achy teeth for about a week, now I couldn't sleep without it.

    Me, I'm doing well. Minor sensitivity from time to time bit nothing that I can't get my mind off. Have you considered trying biofeedback? it might help to break the pain loop.

    I'm glad to see that you are blogging. It takes a lot of courage to share like you do and I am certain that you have helped many even though few have taken the time to send you a message.

  2. Hey Kev, thanks for that tip about the mouth guard. I haven't tried biofeedback, What is that - does it really work?

    I don't feel courageous, but thank you for saying so. I feel like a big whiner sometimes...on the other hand, I'm stoically silent so much of the time in "real" life, when no one knows I'm in pain, that blogging about it is a great release.

    Being able to discuss with others who can relate to this injury, like you, is a God-send!!

  3. Hi Jane, I have been rading your blog recently as I read Kev's and Imogina's. one linked me to another, I read your comments on Kev's and I found you here. I am very interested in following you as well, and I have you in prayers. My injury seems to be healing faster, but it has put me in such a misery emotionally that I could'n function well for a few weeks and I am terrified to going back to the dentist to finish the job imcompleted. Thanks for opening this blog even it is a very sad story it is a great help to others as it has been for me, I am sure, as far as there not to much help in the medical comunity about this. My GP never heard about it and it will pass, he let felt completly abondoned...I really hope you recover completly as Kev and Imogina. I would like you to contact you as well in FB if don't mind, so I am going to write my email if you would like to contact me. Please do not publish it. ROVLAC@AOL.COM. Thanks and I have you also on my prayers. Raquel.