Trigeminal Neuralgia or TMJ?

Carol Community Member December 22, 2007
  • New to this site and just briefly scanned it.  Question? - Who in the group deals with TMJ, and anyone with Atypical Trigeminal Neuralgia?  I'm having the usual constant stabbing pain in side of face,teeth,tongue, but past month have had overall facial pain/weakness, difficulty swallowing, fatigue in facial muscles when chewing, and terrible soreness in facial and anterior neck muscles.  Have "slight" TMJ but dentist says not a major issue.  Can anyone help? - is this either TMJ or Trigeminal Neuralgia?  About ready to go to E.R. Oh, constant headaches until Dr. put me on Prednisone, a week ago.  Was reading about the morphine pump, - is it effective for facial pain syndromes?  I've been on same dose of M.S. Contin for five years.  Thanks so much... p.s. - been reading various articles on M.S. Could it be?

    Carol

13 Comments
  • Carol
    Apr. 05, 2008

    I've written here before about my struggles with oral/facial pain.  Two weeks ago I had an encounter with a "doctor" that I still haven't gotten over. 

    Brief history: facial and jaw pain for 8 years, plus 4 years, before the dentist pulled my 4 front lower teeth and the neuro pain really began.

    Gone to numerous dentists, doctors,...

    RHMLucky777

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    I've written here before about my struggles with oral/facial pain.  Two weeks ago I had an encounter with a "doctor" that I still haven't gotten over. 

    Brief history: facial and jaw pain for 8 years, plus 4 years, before the dentist pulled my 4 front lower teeth and the neuro pain really began.

    Gone to numerous dentists, doctors, chiropractors, with no help.  Had several injections into stylomandibular ligament on left side, temporal tendon, occipital nerves, without relief.  I finally requested an MRI which was done and showed disc displacement bilaterally, flattened condyles, and spurs in left joint.  An oral surgeon ruled out TN with a brain MRI (not sure that really eliminates that diagnosis), and he referred me to an oral surgeon at a teaching hospitial.  I waited 2 months for the appt.  I saw this "doctor" who is the HEAD of the maxillofacial unit at the Unniversity hosp. and thought maybe, finally, I'll get some relief.  This "doctor" (and I put quotes around that word 'cause he should be reported), came into the room after I waited in the exam room and hour, did NOT introduce himself, looked at some papers, then asked me "can you open your mouth?" Not knowing if he wanted me to or was just asking if I could, I said, "do you mean you want me to open it now?"  he said, "yea, like you're eating a Big Mac."  I opened it, and he said, "I have nothing to offer you," and walked out of the room!!!!!!!  No exam, no questions, no anything, he just walked out.  I felt like I'd been kicked in the gutt once again.  I bawled half of the 150 miles home, and still am in shock at this "doctors" arrogance.  When I get the bill for the "exam," I will NOT pay it.  I have no idea where to turn or whom to turn to.  I've pretty much decided to just live the rest of my life like this because I cannot tolerate this frequent emotional abuse from so-called people who care.

     

    Carol

  • Anonymous
    darren finn
    Mar. 31, 2008
    Doctors are worthless when it comes to Tmj.....they take three months of courses on how to sell appliances to people whose jaws lock and don't understand it when a jaw is comprimised and is tweaking the trigenimal nerve. I don't mind talking condenscendingly about doctors bcause I've had Tmj for 12 yrs. I think that its a disgrace to the medical...
    RHMLucky777
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    Doctors are worthless when it comes to Tmj.....they take three months of courses on how to sell appliances to people whose jaws lock and don't understand it when a jaw is comprimised and is tweaking the trigenimal nerve. I don't mind talking condenscendingly about doctors bcause I've had Tmj for 12 yrs. I think that its a disgrace to the medical community that the jaw is treated like some very strange part of the body. Atypical? bullshit. These doctors should stop performing their half-*** operations, selling mouthpieces and study the anotomy......instead of sticking their finger in you ear and mindlessly asking you to open and close (something they never seem to derive any valuable info from anyway)they should feel for any irregularites [in front] of your ear, anything which may indicate an abnormal placement of the jaw could be useful -- secondly they have to develop ways to add or detract bone which are effective and absolute. Yes, 'atypical' means they are useless, short-sighted and don't mind taking your money although they are totally unquailified to get the job done.
  • Anonymous
    LoveyK
    Feb. 28, 2008

     

    Oh, I didn't see your whole post, there are anticonvusants other than neurotin and Lamictal and Lyrica.

    There is Topamax (Topiramate) and Zonagran (zonisamide), to name a couple. 

    Google or search the internet anbout neuropathic pain and TMJ and talk to your doctor. ...

    RHMLucky777

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    Oh, I didn't see your whole post, there are anticonvusants other than neurotin and Lamictal and Lyrica.

    There is Topamax (Topiramate) and Zonagran (zonisamide), to name a couple. 

    Google or search the internet anbout neuropathic pain and TMJ and talk to your doctor. 

    I take anticonvulsants and Vicodin for my TMJ. 

    I do ok, I'm getting ready to have my TMJ implants removed, they've failed. 

    I'll get new implants 6 months later. 

    I'm still in a lot of pain. but with this cocktail I can drive my car.

    I rather have freedom and live with the pain.

     

  • Anonymous
    Lovey K
    Feb. 28, 2008

    You need to take Neurotin and/or Lamictal. Talk to your doctor. Lyrica is a designer version of Neurotin but it has a lot of nasty side effects and is addictive. I don't recommend it in spite of recent advertisments in it's favor.

     ...

    RHMLucky777

    Read More

    You need to take Neurotin and/or Lamictal. Talk to your doctor. Lyrica is a designer version of Neurotin but it has a lot of nasty side effects and is addictive. I don't recommend it in spite of recent advertisments in it's favor.

     

  • Anonymous
    Martha Bush
    Feb. 15, 2008

    Dear Carol,

    I have a client who is taking glyconutrients (Ambrotose) for pain of TN. One week into it, she is having considerable relief. A second client (CFS) found relief after several weeks with the Ambrotose. She reports a return of symptoms if she discontinues this regimen. She suffered with CFS for over 10 years and is now back to work. If you want scientific...

    RHMLucky777

    Read More

    Dear Carol,

    I have a client who is taking glyconutrients (Ambrotose) for pain of TN. One week into it, she is having considerable relief. A second client (CFS) found relief after several weeks with the Ambrotose. She reports a return of symptoms if she discontinues this regimen. She suffered with CFS for over 10 years and is now back to work. If you want scientific information about this product check out www.glycoscience.org or log into www.mannatech.com/mlbush for order information. I would love to talk to you about this new emerging science.

    Martha 

    906-345-9535 

  • Betty Boop Too
    Dec. 27, 2007

    Hello Carol

    Nice to meet you and I hope you can find the information you need to get some help.

    The resident expert on TMJ is stacy and she will probably see your post in the next 24 hours or so.  Hope she can lend you some possible help for your pain issues.

     

    Betty

    • Carol
      Dec. 27, 2007

      Thank you, I'll look for her post...

       

      Carol

    • Carol
      Dec. 27, 2007

      Betty:

      Sorry about not changing the "intro" to your post,  guess I was "talking to myself!"

       

      Carol

    • Betty Boop Too
      Dec. 28, 2007

      Carol

      I'll send Stacy a message and ask her to take a look here too. 

      I'm sure Anne can help you a great deal too though, so I'm really glad that she's talking with you too.

      I hope you can find all your answers for you pain problems.

      Take Care

      Betty

    • Anonymous
      Leigh Thomerson
      Apr. 21, 2008

      I am Leigh Thomerson , I also have TMJ. I have not found much releaf from the pain . If you have some plaese let me know.

  • annebeckett
    Dec. 23, 2007
    Yeah;  I deal with both TMJ and TN.  so, not sure what you're asking there.  IF the nerve bundle is inflamed, then it's TN;  if it's other things related to the disease or dysfunction of the joint, it's TMJ.  Certainly, it can be both.  But, you have to see the doc(s) to make sure of it..  And, sometimes, they...
    RHMLucky777
    Read More
    Yeah;  I deal with both TMJ and TN.  so, not sure what you're asking there.  IF the nerve bundle is inflamed, then it's TN;  if it's other things related to the disease or dysfunction of the joint, it's TMJ.  Certainly, it can be both.  But, you have to see the doc(s) to make sure of it..  And, sometimes, they miss one or the other for a while.  Hard to (impossible to) diagnose online and all, though.  If anyone does, plesae do not take it as fact.  See whatever docs you need to see to get a proper diagnosis..   Oh, and, I had a really hard time in trying to read the OP;  it was really TEENY.. Anne
    • Carol
      Dec. 23, 2007

      Sorry about the font size.  I've been dealing with this facial pain for over 10 years, - happened after having 4 front lower teeth extracted.  Dr. said GAMMA KNIFE or other surgery would possibly make it worse 'cause it's Atypical TN.  Just saw a TMJ dentist.  Said joints aren't "bad."  Have allergies to drugs...

      RHMLucky777

      Read More

      Sorry about the font size.  I've been dealing with this facial pain for over 10 years, - happened after having 4 front lower teeth extracted.  Dr. said GAMMA KNIFE or other surgery would possibly make it worse 'cause it's Atypical TN.  Just saw a TMJ dentist.  Said joints aren't "bad."  Have allergies to drugs like Neurontin, Tegretol, etc.  In constant pain, but this symptom of facial muscle weakness and difficulty swallowing is new.  I have Fibro and CFS.  I'm beginning to think I have something like M.S., but everything gets blamed on the Fibro. and after 30+ years of that in itself, a different Dr. doesn't seem to be the answer as each time I get referred to someone new they ask me "what do you think I can do for you?"

      Thanks for the reply...

      Carol

    • annebeckett
      Dec. 23, 2007
      Yeah  don't you hate that/  what do you think I can do for you??  crazy.  Hmm, how about figure this thing out and try and figure out a way to make it tolerable???  Your neuro or other docs usually can confirm the ATN or the TMJ.. If not, you may want to see someone else.  I generally see a pain doc, neuro, and internist.....
      RHMLucky777
      Read More
      Yeah  don't you hate that/  what do you think I can do for you??  crazy.  Hmm, how about figure this thing out and try and figure out a way to make it tolerable???  Your neuro or other docs usually can confirm the ATN or the TMJ.. If not, you may want to see someone else.  I generally see a pain doc, neuro, and internist.. that's all..  But, now; am in with the surgeons again.  We'll see how that all goes.  So far, surgery has not been the best for me!  Best of luck with it all.. Anne