Strange Tongue/Jaw/Ear Issues

[Purple74]

Not sure exactly what started this whole thing off, but last July (2012) I had an intense sore throat left side only with a minor ear ache.  Enough that it had me worried about the "C".  Went to prompt care a few days later to be told I probably had a virus and they could see nothing in my ear or throat.  They did a strep test - negative.  Suggested I might try OTC allergy or even acid reflux meds.  Imagine my relief.  Well, I got no relief.  I scheduled an appt for a physical.  Three weeks later still having problems...GP says he sees nothing.  I note that I do have a slightly enlarged but non-tender lymph node.  Still biggest complaint (besides fear) is throat and minor ear pain...all left sided.  He suggests more acid reducers.  I do that, have a deep filling done and suddenly the pain is constant and terrible and now includes my tongue...which is by far the worst and scariest.  So far, this is still going on.  I have seen three dentists, an oral surgeon, two ent's and a neurologist besides my gp and the prompt care doctor I started with.  I have had a brain mri, a neck ultrasound, and a neck CT scan.  All unremarkable other than noting several "benign appearing" scattered lymph nodes on the ultrasound and something to the same extent noted on the CT..."no frank adenopathy."  I am at my wits end.  the ear pain and the tongue pain are treacherous...the throat rarely bothers me.  The neuro diagnosed me with trigeminal neuralgia and put me on neurontin...which barely helps (if at all).  And of course, the fear remains even though one would think all the doctors and scans should make me less scared - the fact that the pain persists keeps my fear going.  Not to mention the terrible things I can find on the Internet.  Anyone have anything similar?  I find the trigeminal neuralgia hard to swallow because the tongue and ear are my biggest complaints and that doesn't seem to fit?  Thanks for any help/advice you can offer.  

[SuRa78]

Are any of you still dealing with this and if so, has anyone gotten a diagnosis? Thank you!!

[Purple74]

Hi all...I appreciate the comments.  At least some comfort in knowing I'm not the only one with these strange systems and yet no real answers.  Here I am over 4 years later...about the same.  I am better...as far as less anxious and also pain less intense; but still waiting to find out what the real problem is (although I have given up actively pursuing a diagnosis).  Very thankful no serious or life threatening diagnosis...but do look forward to someday some kind of answers, if not a resolution to the pain.  Hurry up and wait I guess.  Hang in there.  Sorry to keep y'all hanging.  Just always hoping for something better to report.

[MJM1180]

I have the same symptoms, weird tongue sensation on the left side, pain near left tonsil and ear pain. Saw GP twice where they saw nothing, referred to ENT who scoped and saw nothing, had a neck and face MRI where they saw nothing other than a borderline enlarged lymph node which the ENT said was barely enlarged. I also saw a oral surgeon for a TMJ consult but no answer there either. I am currently diagnosing myself with glossopharyngeal neuralgia.

[rollem1976]

Purple74 & Everyone else, pay attention to what Jemma116 references multiple times (steam with an aromatherapy oil (wintergreen oil is awesome) will moisten your airways and allow the blockage to loosen. There are home remedies that will help you get rid of the symptoms. Maybe there is no cure all, but to get rid of that damn pain is well worth trying something that doesn't have a side effect or a copay. Pretty much EVERY antibiotic and prescription has a side effect. Do your research, try some home remedy options, if it don't work it don't work, but TRY something new. The antibiotics do strip out the probiotics as well, creating heartburn. 2 Acidophilus pills daily for 3-5 days will get rid of heartburn for good. A splash of Apple Cider Vinegar in your Water daily will help maintain a healthy level of PH in your body. Gargling with salt water or Hydrogen Peroxide will help with mouth infections. Castor Oil in the ear will ease ear pain and stop an ear infection quickly. Outside of those things, diet, exercise, and a good multivitamin 3 days a week, will do wonders for your short term and long term health.

[jjwiley]

just wondering if any of you are still on this thread?

[ladybug700]

did purple74 have a resolution?

[ladybug700]

did purple74 have a resolution?

[1949wen]

I have had similar complaints for about 15 years. Final diagnosis was arthritis of my jaws. Tingling in tongue, teeth hurt, tingling in face, ear ache. I had jaw surgery 35 years ago. It caused 1 jaw joint to be smaller than the other. So now there is impingment, hence arthritis. The only relief was gotten by orthodontic appliances that slowly realigned the jaws. Took pressure off the impairment. Expensive.  I originally started off taking 3  .5 mg chlonopin throughout the day. Now only take 1. Would feel better on3 a day but makes me too drowsy. Have an orthodontist that also specializes in TMJ  evaluate your bite. I would never have believed that orthodontic appliances would help me but they did.  If any one has any interest in exploring this as a solution to their mouth, jaw, ear issues I don't mind questions. Good luck to all. From what I have read you have all endured some pain. Take care.

[Pepys]

Trigeminal neuropathy is the diagnosis I got..burning tongue, ice pick eye pain and the feeling that I have a congested ear and head..Only on the right side. My neurologist links it to rheumatoid arthritis, which I have had for about 12 years. He put me on 600 mg of oxcarbazepine...which is helping.  Good luck.  The drs cannot "see" the reason for the pain...so the MRI does not help.  I have done enough research to know that if the medication stops working, I will be considering Gamma knife surgery (radiation).