Discussions By Condition: Mouth conditions

sore tongue

Posted In: Mouth conditions 7 Replies
  • Posted By: Anonymous
  • March 21, 2008
  • 02:17 PM

I recently had shingles that involved the trigeminal nerve. It affected my ear, jaw and tongue. Most of the problem has resolved but the tongue is still "sore, burning, numb...can't really describe it and my jaw feels like I have a really bad toothache. Besides that my chin gets a tingling and really bad pain. :confused: I'm taking 200 mg of Ultram in the day and 600 mg gabapentin at night. Yet the soreness persists. Is there a rinse or something else I should be doing to alleviate this persistent problem? I'd appreciate any suggestions. Doctors tell me this is post herpetic neuralgia and it could last for months or years.

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7 Replies:

  • I have TN (trigeminal Neuralgia) now for 11yrs its a nightmare. mine was not caused by shingles so i hope urs doesnt last along ! Nerve pain as u will find out is very difficult to treat, its basically all trial & error, what might work for me wont work for u.........i wish i could tell u what to take but sorry i cant.......ive had those drugs & they didnt work for me. I take Amitriptilyn, it is widely used, also take baclufen, baclufen is a muscle relaxing drug so i dont think it would help u as its herpitic neuralgia. Alot of the drugs they will try u on will themselves cause u alot of side effects & still have the pain..................so i stopped them & stick only with the two named above. Because mines going on so long now, well basically i just try to live with it. This is what i do.......& believe it or not it seems to shorten the length of attack & i recover faster & get on with life......because believe me again it can devastate ur life.....u have to not let it take over....& that is difficult............sorry i was loosing track. Right now this is what i do.........i get as comfortable as i can .....& relax every bone in my body.....i start to breath deep slow calm breaths, & i count in my head, it is difficult to do but if i loose count i start again.... I ride it out & not fight it, when u fight it it gets worse......doing this i have been able to function better & i got back to work......the other way i was loosing the battle & worrying about the next attack....thats no way to live & would take u to the edge ! I wish i could tell u what to take & it would all be better but i cant. I hope this passes very quickly for u ! Good luck :)
    Tootsie 628 Replies Flag this Response
  • Thank you, Tootsie. I'm sorry you have had so much pain for so long a time. I feel like a "wuss" complaining about 2 1/2 months when you've been suffering so long. God bless you.Janq
    Anonymous 42789 Replies Flag this Response
  • Ur not a wuss at all janq......remember it was all new to me at the start too. We kinda expect a cure for all ailments but sadly that doesnt happen....i never knew anyone that had this to direct me so i was stumbling all on my own with it........so if i can help anyone at all i will, even if its only support i can offer...... keep in touch plz:)
    Tootsie 628 Replies Flag this Response
  • Thank you again. I so appreciate your support. Were you ever able to determine what precipitated your problem? You needn't share if you don't care to. :) God bless.Janq
    Anonymous 42789 Replies Flag this Response
  • Thank you again. I so appreciate your support. Were you ever able to determine what precipitated your problem? You needn't share if you don't care to. :) God bless.Janq I dont mind sharing at all, I had a car accident in 1977 when i was 17yrs old, the C4 vertabrea was broke in my neck, then they didnt opperate to stabilize my injury.....i was put in a neck braze for 4months, so it healed in the position it was broken......my neck never fully recovered movement... Anyway 20yrs later, completely out of the blue i went into the worse pain in my life, it was on the 16th aug 1997.....thats how bad it was i will remember it till the day i die.....which at that time i thought it was going to be that night ! Like u i went to doctors/dentists/specialist....brain scans.......anywhere i could go i went, every treatment they offered i took. Was referred to pain management clinic......& it was there that i mentioned my old neck injury, no one had thought of it b4 that........to get an MRI scan done here then was a 3yr waiting list & by this time i wasnt working as it was so bad, i didnt have the money to go private.....3 yrs later got the MRI & low & behold it showed my broken vertabra pressing on my spinal cord.....i thought great now u can help me, but no, they said they would not even consider opperating on it as it was too dangerous....so here i am today ! just had another MRI scan done about 2 mths back but still havent got results.....but i do know from further xrays just b4 this that the disc below the broken one C5 is crumbling & the gap is getting smaller, have ostiophehs & leasion at C5.......lost the use of my left hand last april for 20wks but happily got about 90% use of it again, This is why they are now re-acessing it again........i want to push them into helping me via opperating, dont want to end up in a wheel chair & theres no guarantee even if they do this that it will help the TN but i live in hope......theyve gotta help me. Sorry there was no short way of telling u that !!! lol Im sure ur sorry u asked ........lol:) God bless u too & i hope its not such a long road for u ! Also with all that im a upbeat kinda girl & more than willing to offer support and maybe a bit of advise regarding possible side effects of certain drugs......which really differ from one to another ! support is very important as basically i went down that long road on my own......unless someone knows about it, no one else will know what u are going through or understand it ! they might see it but believe me they will be at a loss what to do !
    Tootsie 628 Replies Flag this Response
  • I'm so sorry you've had to endure such pain over such a long time and face such an uncertain future. Please know that I will keep you in my prayers and will add you to the list of people for whom my rosary group prays daily. We have a very strong group and have had many good results for people with our prayers. I know what you mean about the medications and side effects. My nephrologist is very concerned about the effects of NSAIDS on my kidneys...I was diagnosed with chronic kidney disease about a year ago. So these medications I'm on are not what I want to be taking, but they make the pain almost bearable. So I simply have to pray that won't have too deliterious effect...so far the kidney function has remained the same so I have my fingers crossed. God bless.Janq
    Anonymous 42789 Replies Flag this Response
  • Thanks janp i appreciate that. Please dont think im down about it, been there done that, it doesnt help ! With all things we go through, good & bad, thats what makes us who we are.........I have learnt an awful lot of things i would never have learned had it been different.......And who i am today i wouldnt change for the world.......we all go through things for a reason, it might take a while to find out what that reason is, but we will eventually.....so for that reason alone i have no regrets.......and if it enables me to help one person well then it wont be wasted......what doesn't kill u makes u stronger ! So no need to be sorry for me, yes at times its hard but i bounce back again.....& live a day at a time......it works for me ! hugs :) always keep the faith !
    Tootsie 628 Replies Flag this Response
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