Saturday, August 28, 2010

The pain roller coaster

I have never been a fan of roller coasters, though I love amusement parks in general. Well I'm at the top of the pain cycle roller coaster vs. the bottom this week, and let's just say I'm not raising my arms with glee. So far the meds experiment is a bit of a disappointment- I've weaned down to 300 mg gabapentin a day (basically nothing) and been on anti-inflammatory Mobic 3 days (think: Naproxen, without the nausea)- I'm hurting more since giving up Neruontin after some pretty quiet days prior, but it could just be coincidence.

I'll give it a few more days, when I'm due for some more quiet ones; if they don't come, and the pain continues to build, I'll ramp up the Neurontin again. I was Rx'ed hydrocodone for pain but I take it by half in such small doses, it just gives a little relief and good mood for maybe 2 hrs at at time. I still have to turn to ever-expanding assorted varieties of gums, lozenges, dry mouthwash and, ultimately sucking on Klonopin, to put out the fire in my mouth all day long.

Something unusual and perhaps worth mentioning: the way the pain feels now vs. a few months ago differs. Earlier in this illness, pain jumped around more from one place to another, (ear, throat, head, teeth) now it's kind of all over. The sore cheek/buccal muscle/root canal pain, achey front teeth, sensitivity to sound, touchy temple, and burning tongue seem to now travel together and be related, hurting on the same days. Just milder all over and worse all over, depending on the time of day and the day in general.

At really bad moments I still apply lidocaine/oragel topically, down to 2-3x/wk from 1-2x/DAY, when I could barely speak without slurring like a drunk person due to the razor-like pain in my tongue. (So there is hope for you newbies!)

Unfortunately, after this amount of time, everything I've read indicates that some level of pain is going to be permanent for me. We'll see at the one year mark in December; it's incrementally less now (if you count increments in milenniums) but I haven't given up hope the trend continues.

The megadosing on Vitamin C has been tough because I need to mix the powder with orange juice with is very acidic for my tongue. So I've been sporadic in that. I can now tolerate the coldness of smoothies, so I try and get extra vitamins from my local Jamba Juice store when possible.

I have spoken with several Neurologists who were recommended by friends; problem is, no one has the foggiest what I am talking about with the Lingual Nerve. With the thousands of nerves in our bodies, seems med schools overlook that one. You'd think someone would come up with a continuing ed class to cover this problem.

(Trying to figure out how to add a site traffic checker but the widget failed. Trying again below. For anyone not bored enough to have left already!)


  1. jane,

    you don't need to put the vitamin C in orange juice. you can put it in iced tea; apple juice, diet lemonade, etc. any kind of juice that is not too acidic. orange juice is overkill.

    you are likely having pain because you need the nerve medication. only way to now is to come off the neurontin all the way. good luck.


  2. Thanks K - iced tea usually soothing for me, but the vit C seemed to change the flavor. I tried cranberry juice (still acidic); apple juice good idea, will try that.

    You're right, of course, I do need the nerve meds...I though I'd follow Kev's brave example of going cold turkey, but it was not to be. We all tolerate pain differently, and may have different extent to our injury.

  3. Well..I don't know what to think now. I had a crown put in about 2 months ago. When I was given the anesthetic (sp) I felt so much pain in my jaw but I didn't say anything. Now...I have had a burning sensation in my tongue on that same side, like a sore is there but it isn't. Plus the whole tip of my tongue, dominating on that side, is sore. It gets worse between 10am and 12pm then turns to a more tingling/numb sensation for the rest of the day. I have seen 2 doctors, 2 dentists and an ENT for this. The ENT had no idea what it was. Now...I am thinking I have what you are describing. It's some of the same symptoms. I went back to the dentist twice after the crown because I thought it was too high because my jaw ached. Then the pain moved into my tongue. Question...when my tongue really flairs, its red in the whole area but no sore. Do your areas turn bright red? My ENT said that maybe it Burning Mouth Syndrome. just seems to weird to me that I never felt discomfort in my mouth until I had the crown put it. I am not waiting for blood test results from my ENT. He is testing my zinc. folic acid levels, etc to see if it's related or the burning in my tongue is secondardy to something else. I never thought it could be what I'm reading here...but it kind of makes sense. Sometimes it almost feels numb, sometimes it burns like hell, and sometimes it tingles. Along with my lower lip...any thoughts? did the spots in your mouth turn red with a flair up?

  4. Lisa,
    I agree, the timing is odd and the symptoms familiar. And it hurts only on the side where the crown went in? Again, too coincidental. I actually didn't feel as much pain the first 2 weeks as just tremendous thirst, the pain then started building and peaked at around weeks 9-12, if I recall.

    If you have a lingual nerve injury, your ENT will never find it; mine never did. See if you can find an orofacial pain specialist, try a University that has a school of dentistry.

    Glad to have you here with us, keep us posted. I hope you find this blog helpful as you move through your diagnosis and recovery.

  5. BTW, my tongue does not turn red; but does have telltale "bite marks" on the edges that indicated to my orofacial pain guy that I was compensating for the pain by pressing the tongue into my upper palette, even when I sleep.

    There is something called Geographic Tongue where you get random patches on the tongue, however with your description of numbness and burning, even into the lip area, it sounds spot on lingual nerve. Let me know how it turns out.

  6. Thanks Jane, I think the tip gets red because I push it against the roof of my mouth when I sleep. Like tongue compensate for the pain in my jaw. I will keep you posted!