Tuesday, September 28, 2010

At 9 months, pain spikes are less "spikey"

I'm finding less variation between good days and bad now. (They're all bad) Ok, not really...they're all...medium. The highs and lows are not as high, or as low.

When I was charting my pain a few months ago, well, the bad days were like skiing a double black diamond trail...now it's more like a blue run. Occasionally I'll even get an easy green and marvel at my good luck! And, by occasionally, I mean maybe once every 12 days. I attribute this improvement to the Lyrica.

Lyrica is helping to dull the pain in my face/upper teeth. I was RX'd 150mg/day, but since I am managing to cope at 100mg, I am holding there, hoping to do as little systemic damage to my internal organs as possible. I do notice blurred vision and vivid dreams (a known side effect of pregabalin and gabapentin), but consider those fairly minor side effects.

I don't know when I will feel like I can stop the meds. Not any time soon. Having been to all forms of medical experts and them all saying they can't find anything in my xrays, MRI's, etc, at this point I've resigned myself to just keep taking B vitamins, and hoping the nerve continues to repair itself in time.

I have had temporary crowns over my root canals for 6 months now, too scared to go back in and get permanent ones. No one's coming near these teeth. I haven't had a cleaning in a year, so I'm coming due for that, too. Yeah. Fat chance.

I feel pretty normal and not drugged. My heart is no longer racing nor do I feel faint like on the Pamelor (Nortriptilene).I'm not falling asleep sitting up as much. (And they think texting and driving is bad? Hah! Should see how it feels to drive on some of the drugs I've been prescribed. Not safe!!)

The tongue feels rugburned in a wide area most days; occassionally on a good/quiet day, it's just on the left tip. Klonopin puts the fire out, and, since this is an off-label use of an anxiety drug, I get the double benefit of reducing stress. Pain = stress = anxiety = more pain = more anxiety, and so the cycle goes. Sucking on a Klonopin for a minute, then spitting out, helps a lot, though it does make me sleepy. Wish I could suck on them all day, but I can't. I'd be like Rumplestilskin!

Has anyone found that any foods in particular help or hurt the burning?


  1. Haven't posted for a few months, just wanted to say that I still appreciate your bloging and find it education and inspirational. I am at 4 months now since my injury and will find out in the next few weeks if I will be a candidate for having the surgery to reatach my nerve. I have been seeing a specialist in lingual nerve damage/repair and will have the nerve tests performed again to see if there is anymore progress of healing on its own.

    If it helps, he has told me it can take up to a year and a half (my neuroligist says up to 2 years) to see how much the nerve will repair on its own. So we both are still well within the window of recovery.

    Thanks again for all your bloging. It is very well written and thought out material. Take care.

    1. Hi Dean,
      I hope you are well. I would like to know if you had the surgery and would like to hear your experience. My email is claudiavdeyoung@gmail.com

  2. i went to see bruce donoff. i had to pay cash because he didnt take my insurance. he seemed somewhat wary of me. i think he thought i was trying to implicate him in a lawsuit which doesnt exist. however, he told me since i have no numbness or sensory aberrations, i don't have a nerve injury and that he doesnt think the pain is from the nerve block. he also said 5% lidocaine is routinely used.

    i argued with him, but he said he thinks my pain is coming from my open bite and that i need to address it.

    i dont know if he was fobbing me off because he thought i wanted to get a quote from him for legal reasons or if i am truly that screwed. this guy is supposed to be the bomb. in any event, he said my problem is not one of a surgical nature.

    i still dont know what i think about the visit. however, my pain is now extending up the back of my skull, so something is clearly happening.

    hope you are doing okay.


  3. Kritty,
    I'm sorry - I know how it is to wait weeks or even months to see a Dr. with high expectations, only to have him send you on an entirely different path that feels like a wild goosechase. I'm glad you filled us in...
    How can he say you have no "sensory aberrations"? Was this based on discussion with you or did he do any testing?

    Pain in the back of skull could also be tension headache; does your neck hurt? Re: your bite, is he suggesting TMJ?

    I had electrodes placed on my tongue and face and was asked to indicate when I felt pain; the results clearly showed the left side to be 100% more hypersensitive than the right. It's done in such a way that you can't "cheat". So the diagnosis was clear; unfortunately, the treatment is not, and there is no cure.

    Today is the first "quiet tongue" day I've had in what seems like forever. Every morning the fire has been raging from about 9am til bedtime. Today for some reason, pain is about half the norm, worsening as the day progresses but haven't had a stick of gum or a lozenge yet at 2pm. Only reason I can think of is I finally caught up on sleep last night after getting no more than 6 hrs for the past 10 days; have also been battling a cold.

  4. Dean,
    Glad to hear from you again, sounds like you found a good doctor who understands and is helping you. I'm also thankful you passed along what the doctors said about length of time for recovery - that renews my hope!

    I will say that it is well-documented that when females complain of pain, they are often given anti-depressants, and it is just assumed they are more emotional, or even being hypochondriacs or "hysterical females". So, perhaps your being a man, you'll get more insight and respect than we are being given by the medical community. Please be sure to pass along anything you learn, and let me know how you're doing.

  5. Dean are you completely numb? Most of us don't ever see a specialist who will suggest surgery. I'm at 14 months and have actually had a few days lately where I don't even think about it. The burn is much much less than even a couple of months ago. I still had the raging burn at 4 months and at 9 I was still in constant pain.

    We can all continue to move towards healing. I just started a cleanse to help get the toxins out and get my eating habits back to a healthy pattern.

    I'm not one to give advice anymore as I can clearly see that everyone is affected differently by this both in the severity of the injury and the affect it has on our mental capacities.

    That said, I'll go back to the Lingual Injury Forum to post an update of what I've tried to get over this.

    I still feel I can make a complete recovery.

  6. hi jane,

    ha! the only testing i got was his fingers on each side of my face; "can you feel this? same on each side?" so, because i could feel his touch equally, i had no sensory aberrations or numbness. ridiculous. i did not have any testing with electrodes.

    i'm here to tell you kids that doctors make up their own timelines about recovery; a friend with TN who had a botched surgery was told 18-24 months by a neurosurgeon. i was told 3 months at the pain clinic i went to. the truth is; nobody knows. everyone just hopes you get better with time.

    the people who know the most are the researchers; i spoke to one at duke university; he told me the trigeminal nerve has the possibility to heal very slowly over two years. but it's only a possibility, not a rule. i believe him the most because he actually studies the damn thing in vitro.

    take care,


  7. ps. jane, is your left side injured? what did the test results show?

  8. Kev makes an excellent point; I just assumed Dean had numbness because his Doc is suggesting surgery, I tracked down Dean's original post, but it doesn't specify whether his symptoms are pain, numbness, or both. I don't think one person who's posted has had successful surgery. Which isn't to say it's not possible, but we've seen no evidence of it here. So Dean, if you're still there, please use caution, and get a 2nd opinion.

    Thank you also, Kev, for putting it into perspective in terms of timeline. You are one of the longest suffering on here, and a great reference for those of us wondering what the days ahead will look (feel) like.

    Kritty, you have a great "don't take any crap" spirit and good access to researchers, and for that we are grateful in you sharing your findings. I still believe in the power of many- by putting our theories and experiences together, we can better understand what the heck happened to us, and how to make it better. Because G-d knows the doctors sure aren't figuring it out.

    BTW, yes the pain is entirely on my left side. Of course, my right side feels completely normal, like a different person, because we have two separate trigeminal nerves on each side of our head. My test results show nerve damage "due to needle stick" which could mean a bruise, tear, or nick of the nerve, causing extreme hypersensitivity on the left side of my mouth and face.

    My orofacial pain doc who did the testing is in Florida- a call to his office might not be a bad idea. He's been known to get on the phone and discuss your case personally; he's also a published author. Google "Dr. Paul Bradley Nova dental" to read more about him and find his contact info. Let me know if you do have a chat with him.

  9. be careful with the klonopin..when you stop it, side effects can be burning mouth/tongue, sore gums, tooth/jaw pain...i was googling 'burning tongue' and found your blog, as i'm experiencing it from withdrawing from a drug similar to klonopin. i felt i should let you know this could be a problem for you in the future, and this drug should not be taken daily nor is it intended for long term use.

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  11. Dear Anonymous - Thanks for your post - but this is definitely contrary to everything I've heard. Folks suffering from Burning Mouth Syndrome are also RX'ed Klonopin. What drug similar to Klonopin are you withdrawing from?

    The side effects you describe are the actual effects I'm suffering, and the Klonopin and Lyrica were prescribed to counteract. So this is confusing