Thursday, February 3, 2011

Updates for a new year

My apologies for disappearing for awhile- technical difficulties with Google being buggy. I couldn't publish anyone's comments, nor update my blog. Today I went to comment on one of my own blogs, and -presto- all of a sudden it will accept my login, from the comments screen only, and now lets me post. WTH?
Google doesn't seem to like Macs (and my old, wheezing PC's hard drive is just about dead).

Anyway, enough about my technical issues. Month #13 has been intense; I finally started a regular, full-time job. I spent much of last spring running all over town to various doctors trying to figure out why my mouth was screaming in pain all the time, and lost the temp job I landed.
By fall, I found another temp job, then another, about 6 weeks each - I was medicated, so although I was dealing with the pain better, I became sleepy and forgetful, which doesn't go over real well in the work place. Fast forward two temp assignments lost later, and it's New Years 2011 - I get a job offer.

I've been at the new job a month - long enough to get benefits and disability insurance - YES! Of course, the downside is that the job's very intense, and while it should be a distraction from my pain, seems only to add to it. Much of this is due to being worn down from working long hours and driving long distances, and the stress of not being home with my child.

It seems the Lyrica has stopped working; I have been taking 50mg 2x day, so even tried kicking it back up to 3x/day, but found no change. Meanwhile, I've gained a lot of weigh; I'm now chubby and swollen around the ankles, with brain fog. Very attractive. I read online that sometimes Lyrica does stop working after some months, so am looking for alternatives, yet again.

Cymbalta seems to be the favorite pick with the least side effects. I really don't want to be on an antidepressant, but clearly I'm running out of options.

For those who don't read regularly, here's the rundown:
  1. The pain in my tongue is relieved by chewing gum (Pina Colada being the most helpful flavor), but most readily by Clonazepam tablets allowed to dissolved on the area of burning. That provides about 1/2 hour of relief so I can get through the really tough times, but makes me sleepy (so I spit out the tablet, don't swallow it)
  2. The pain deep in side my cheek/teeth/gum where the root canals went in last year is not helped by Clonazepam. For that, I've been taking Lyrica, which was helping for about 6 months, but just seems to be dwindling of late.
  3. I sadly have to avoid caffeine or anything that might stimulate the nerves; in fact, I find alcohol calms the nerves; that then becomes a balance between being relaxed so the pain's less distracting, but needing to be alert. Oh, the irony.
  4. Finally, I continue taking B vitamins and multi-vitamins. I no longer do acupuncture, though my head still hurts on the left side, and I still can't sleep on the left side.

I'm going to a new orofacial doc next week, someone who said he at least knew what a lingual injury was...will report back after that visit next week. (The neurologist from the orofacial clinic at the dental school I went to last year is good, but only comes in once/mo; I have to wait til March 1st, and take several hours off work to meet with him. Therefore, I'm exploring other options.) Trying to schedule Dr appts when my boss is out of town next week; I feel like such a child. But I can't lose this job; Lingual nerve injury is not the kind of thing they write you a disability note for.

I am wondering if some kind of neuroma formed that is preventing the healing which I should be experiencing by now. Around month 9 I plateaued and stopped improving. The nerve may be compressed/ scar tissue may be around it, further extending this nightmare. That is what I will ask the new doc next week.

How's everybody else doing? Anyone discover any great secret to pain reduction, like the hot pepper rub (but less disgusting)? Do tell!


  1. Hi Jane,

    I'm glad you found a full-time job but sorry about the increase in pain. Stress and doing too many things at a time causes my nerve to go haywire too.

    I'm about the same as a month ago, only my pain has moved from the extraction site (zero pain there now) to my bottom middle teeth. I told my OS about this a few weeks back and he said it's "memory pain" i.e. my brain is sending pain signals which actually no longer exist. He seemed confident that the pain would disappear within the next few months though. I on the other hand, am not too sure about that.

    I've weaned off Nortriptyline and am not on any drugs now. Somedays, I feel I'm getting better and then bam! a bad pain day comes along and I feel hopeless.

    I really hope your new OS has more advice or answers for you.

    Keeping you in my prayers,

  2. Dear M- Thanks for your comment - interesting that you have zero pain at the extraction site. I wonder if your pain just relocated itself along the trigeminal pathway...

    I've also been directed to an oral surgeon at this point to remove the teeth. Hmmm. Isn't this a nerve issue, not a tooth issue? No one's found any cracks, anything to indicate the teeth aren't sound, BUT they had fillings then two root canals - any time a drill hits your teeth it's known to weaken them. I'm afraid of have the teeth removed and still having the pain, plus a bridge to deal with. I don't think that's the answer, but I'm going to see the OMFS anyway, just for, like, a 10th(?!) opinion.

    I don't recall, did your injury start with wisdom teeth removal? Nortriptelen is nasty stuff, glad you are off of that.

  3. My dental story is a rather long one. It all started with a cracked tooth. I was chewing something when there was a flash of pain through my molar. It started hurting on and off after that.

    So I went to a dentist who couldn't find anything wrong with it. I didn't believe him and went to an OS someone recommended. He found a crack and placed a metal steel band (like those in braces) around the tooth. Apparently, sometimes teeth can remineralise and the crack can heal. He took an xray too, but at that time no decay was found. He told me though, to call him if the pain continues.

    Well, it did over the next 2 weeks. So I went back to the OS, he did another xray, found decay had started, and sent me to an endodontist for a root canal. After the RC, pain still continued. Endo referred me back to the OS and the latter suspected nerve damage.

    I didn't believe him though; I had never heard of nerve damage from a dental procedure. He also told me the endo had told him that the roots in my tooth were "curvy and very narrow" and difficult to deal with. OS gave me the choice to either wait and see or remove the tooth. Of course at that point, I thought removing the tooth would get rid of the problem. Sigh! It didn't!

    OS then diagnosed me with nerve damage. I guess I am in a way luckier than others because I was given a certain diagnosis of nerve damage rather quickly. I was devastated though.

    I have no idea when the nerve damage started though. Both the endo and the OS gave me injections, though the endo's one really hurt so maybe it was him.

  4. I actually had a good experience with Nortriptyline. It lessened my pain (somewhat) and didn't give me much side effects. I tried Lyrica too but it was too much for me. I had bad vertigo and was a walking zombie.

    Let us know what your OS says next week!

  5. I am so thankful to have come across this blog! Two years ago my mother received a nerve block injection for a crown at the dentist and heard a pop. Ever sense then she has been in terrible and many times agonizing pain. The right side of her tongue burns continuously and has pain in the top and lower teeth along with sensitivity to the gums. The dentist and an oral surgeon said nothing could be done other than wait to see if it healed on its own. Later one of the dentists had her try an anti epileptic drug that did not help unfortunately and she has tried acupuncture too. I'm having her to start taking the Vit B Complex and read where magnesium may help. She gets through the day somewhat with a piece of peppermint gum stuck in the roof of her mouth and will even sleep with it there as well. She is at her wits end. My sweet mother is 76 years old and I am just sick that she is having this terrible time in her life, but after reading this blog I am just as sick that so many of you have been experiencing this in your younger years. If it can be a good thing my mother didn't have this happen until she was 74. My heart goes out to you for your struggle. I will continue checking your blog for any information you receive and will let you know as well. I have contacted my dentist and he is checking with his colleagues. Unfortunately my mother has led me to believe that it wasn't that bad and since I do not live around her it was easy to believe. Well I have found out differently now and made her tell me everything. It has been so bad for her and I am so mad I didn't catch on. Whew... she can flat cover it up or I'm just blind. Anyway I am trying to help her now all I can and appreciate you all so much.

  6. wow !!!!

    i'm near tears.

    today is the first time i'm reading this blog.
    my english is not very good so forgive me in advanced!

    wow ! i'm reading your first paragraph from april 2010 - and - it's like me writing it. word to word.
    it's amazing .
    like i'm not alone.
    i'm 10 monthes with this horror.
    done a dental procedure (regulare prodcedure) and from than on - my life became a nightmare.
    your first paragraph is so true.
    my injury is on the left side also.
    can't till now sleep on this side.

    your blog isn't very optimistic in the meaning that you are about 2 years with that - and still not cure.

    i fantasiez still about waking tomorrow morning when this nightmare behind me.

    i was a PERFECTLY HEALTHY GUY before that.
    30 yo.
    my whole life in front of me.

    on these month i've come to see so many people that went to a dentaist - and were injured.

    my hell-pains started EXACTLY 2 days after doing a dental procedure - and some doctors DARE to say it's not sure it's from the dental procedure. how dare they .

    anyhow - i wonder - how do you now for sure it's from the injection ?

    i'm sure you,like me, have done CT scan and MRI - that showed NOTHING was wrong.

    i envy people that the MRI does show something !
    these people can be at least taken to do a surgery.

    god ! i'll start reading your blog carefully.

    by the way - i'm taking LYRICA now (400 mg, while the max is 600 mg) . It's not much helping - but it DOES make you sleep better - and maybe it does help. i wouldn't know how it helped till i'll stop it.

    i must admit - my PAIN-DOCTOR gave me the option of medical-marijuana- which i fear (i am a non smoker- and the thought of that makes me depressed).
    BUT -as not healthy as it might be - it also is not healthy taking so many PAIN KILLERS.

    i wish also the insurance here would recognize this "deasise" as something you can get payments about - i don't think i could handle my job ... as you wrote - the person with this needs the least pressure - and my job requires me to SPEAK 8 hours a day - i'm doing damage to myself :(

    my mail -


    thank you for this blog !!!

  7. (oh , now i see if i make a comment it needs to be approved first).

    just wanted to share -
    i see you wrote the word "neuroma " which is a term only last week i've heard of by (one of my) doctors.

    i'm hearing it cant be cured :( i can't accept that.
    i've heard from several doctors - that i can leave the LYRICA - beacuse sometimes - dropping the lyrica might help :( don't know if you've heard of that.

    some doctor suggested that GABAPENTINE (don't know what is the generic name in your country) + VIEPAX (effexor) really helps.

    at first i didn't like the idea - but now i come to think of it.

    i used VIEPAX in my past (for panic attacked) and it helped and i stopped all at once. it was a few years ago.
    maybe my body "needs" the medication again ?
    don't know.
    it sounds wierd - but nothing at this disease doesn't make sense.

    how could this be there is NOTHING , NOTHING to do to make oue lives normal again :(


    (sorry for my bad vocabulary)

  8. I have had same pain for two years from a jaw surgery. After the surgery the pain was so bad it was unbearable. Burnt tongue feeling and felt like teeth were in a vice. I was saved by a great Dr. who put me on huge doses of Gabapentine. 3000mg per day. Yes that is 1000 mg per day. No studies have been done on what happens to you at those doses, but god I have 80% relief. Try it. You go up slowly and I did have tremors for a while but they went away. Having some memory issues lately, so going to Neuro dr in Gainesville in a few weeks. Good luck.