Sunday, May 30, 2010

And back to burning again...

The pattern continues of 2-3 good days, 2-3 bad -- repeat. Very predictable, though I naively still keep expecting the good days to stay good and not revert back. Call it naivete or call it positive thinking...I haven't given up hope. I can't.

The various aches and pains about the left side of my face and head are getting better, and I can again do little things like apply makeup over my cheek and bend over to put a towel on my head after the shower, with only a little pain. Still have the lingering soreness of the new root canals, but I've even started carefully chewing on the left side at times - very carefully.

The tongue burning still after nearly 6 months drives me crazy because it is so constantly distracting, and nothing seems to make it go away on the bad days. Makes me feel I have no control over this thing. Blogging about it is a good release, that is one thing I can control. To me, this is really important, or else it all starts to feel out of control, scary, and hopeless. That's not a good place to be.


  1. hi jane,

    today i had a really, really painful day, first in a while. can't link it to anything. one thought is barometic pressure. anyway, i am 9 months out and still having random bad days. it's a downer.

    i spoke with a researcher who studies nerve injuries for a living. he said if you don't have numbness then the nerve is intact. this should be a good thing right? yet the aching tonight is monumental. sigh. it is so weird that i never have burning. not that i am complaining.

    sorry to hear the burn is back. does your pain extend up the side of your head near temple and above your ear? the third branch loops around and above the ear; something i did NOT know until i had my nerve block. do you live in the states? there is a scan out now which can show the nerves.

    i'm starting the vitamin c again, once i am all done with antibiotics, which is soon thankfully!


  2. K, I'm so sorry to hear that, and wonder why the pain can back all of a sudden after you'd been doing so well.

    Yes, EXACTLY -my pain, when it was at its worst, traveled right up the nerve line to the ear and around behind it, and to the temple. I even experienced some tinnitus (hi pitch sound in the ear) for the first 3 mos, but that went away.

    I haven't found on any message board anyone who reports being 100% problem-free, even after a year, unless they are one of the lucky ones who healed within the first 3 months. That doesn't necessarily mean everyone deals with the pain forever, maybe they just stop reading and posting because they have recovered. Maybe....
    If you have followed Pierre's story, he was injured about 3 years ago I think; hopefully we find more like him who can project for us what we have to expect in the future, because it's such a mean surprise, isn't it, just when you thought you were all better, and the pain returns like that?

    I'm in quiet rugburn phase today, although yesterday I had to leave a block party because it was so hot and LOUD (with a DJ) I couldn't bare it after an hour. (Yet, 3 months ago, I wouldn't have been able to stand that for 10 minutes.) I never go an entire day with no tongue burning- but if it starts at 9am it's gonna be a rough day, that's a lot of hours of pain, and I can't avoid talking. Some days, like yesterday, the stinging doesn't get bad until 2pm or so.

    What meds are you taking now?

    I hope you feel better today. I went to buy the Vit C you recommended, and the sales associate actually talked me out of it -said the unflavored powder was nasty unless you mix it with orange juice. I don't drink OJ much anymore because of the acid, it's one of those things that stings my tongue too much. Then again, so do strawberries, which I don't really consider acidic, but they hurt, too. :(

  3. hi jane,

    yeah, the mandibular nerve runs up to the temple. something i never knew until after my block...i wondered why my temple and side of head would hurt when the shot went nowhere near that part of me.

    i must have forgotten to mention you need to mix the powder in water. it does taste bitter but you divide the doses over a few bottles and less powder is less bitter tasting. also, you can mix it in anything; iced tea, apple juice, but you do get used to the water approach too. when i was using it regularly, my pain was consistently low.

    my pain is off the charts today. thunderstorms all day so it must be connected. i havent had a setback this badly in months. i take nortriptyline and topamax but i really do not know how well they help. my pain is centered around my back tooth and spreads to my upper back tooth. my cheek aches and tingles as well. my tongue sometimes aches but it is mild.

    i know pierre somewhat but i dont follow his blog. i didnt know he had one. long termers usually have a structural abnormality within the nerve; i am not ruling this out as a possibility. do you still have any numbness?

    we are set to have storms all week. i hope i survive. : )

    better luck to you as well.


  4. K - have lots to say but have to get back to you; will post again soon. Pierre does not have a blog but posts on others, including this one sometimes.