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.  

[Xremona]

I have a swollen lymph node on my  left side. My left ear  felt like an ear infection was imminent. The left side of my face felt slightly warm and somewhat tender. But the worst part was the pain in my jaw and teeth that came in waves.  The only thing that eventually seemed to give me relief was sipping cold water when the pain started.  I went to the doctor, who prescribed antibiotics for the lymph node, but she said that the pain is possibly due to Trigeminal Neuralgia. Which is apparently a virus so there is no medication for it. I'd made an appointment with my dentist the day before and decided to keep it, even though I had the antibiotics and tentative diagnosis. Explained my symptoms to the dentist and, as soon as I mentioned about the cool water giving me immediate relief, he knew what it was. He calls it a blown nerve and explained that one of the nerves in one of my teeth had died and, when this happens, it released a gas which expanded and caused my issues. The cool water helped because it made the gas contract and relieved the surrounding pressure. He's cleaned it out and packed it with medicine pending root canal soon. Hope this helps someone.

[effie54]

Back in Oct of 2012 I had my tonsils and uvula removed. They say the older you are the harder time you will have with everything. I believe that is true and then some. I am now 61 years old. My ent doctor had no bedside manner what so ever. I had a hard time understanding him because of his accent. Two weeks after surgery I think Im going to die. The pain in my left ear is almost unbearable. I am spitting up green gross stuff. So I go back to his office and he wants to argue with me telling me Im a big baby and why I have operation in first place? duh? Go home crying like a baby. I get no sleep have to be up all hours with heating pads and ice packs. Pain med just not doing it. After about two months I am alot better and getting more sleep. The strange thing is my tongue is numb cant feel it hardly at all. So I have been this way all this time.I have had more sinus infections since this surgery and been on more antibiotics than in my entire life time. Just now getting over the worse sinus infection in my life. My family doctor had to put me on 2 different antibiotics to get to this one. Bite my tongue so bad two weeks ago. I went to the dentist because all my teeth are hurting and gums too. Have a earache that is bad but comes only twice or so a day.Dentist says teeth that I have left which isnt many are all fine and no gum infection. Went to ent doctor today and he said theres a good possibility that the doctor who did the tonsils may have damaged a nerve in my tongue. This nerve would affect my throat and ear, gums teeth and all. When I got home this evening i put some ora jel on my tongue and my ear stopped hurting. Also because of the tongue biting I am goiong to have to have all my teeth pulled because I can not feel my tongue.

[Pattypoo47]

Hello. I have been reading your threads with interest and mounting awe! On reading the first thread I had a sudden frightening thought that I wrote it and forgot. You have the same symptoms as I do with the exact course of how it began, the diagnostic tests and treatments, and the number of types of specialists seen. I was trying (hoping) to see that yours resolved. My symptoms ebb and flows but never truly go away. Right now I am having a severe case of the burning tingling left lateral tongue with the jaw angle and neck pain, and have the same fears you do. I have been combing the internet with mounting dread from the dismal diagnosis they suggest. Please keep posting and let us know how you are doing. I am mostly leaning (praying) towards neuropathy of the TMJ as the pain seem to referr from that area. I just cannot fathom why it hurts as and cause so many symptoms as it does. It seems to hurt along the gum/bone/jaw-line on the inside and tender to touch. I am begging for some relief!

[tiger76]

I have exactly the same symptoms. Burning on the left side of my tongue, throat, ear, and eye.  I have had MRI, CT Scan nothing showed up. My blood work is perfect. I have been to my family doctor, a neurologist, I am going to an ENT next week.  It sounds as if no one knows what to do.

[GeeMGee]

I too have the sore dry pain in the left side of my tongue with jaw pain/neck pain & ear fullness BUT this all started after my hearing went in the left ear. they call it Sudden Deafness & keep telling me its probably viral & they have done all they can. I am STILL deaf 1 month later - tongue pain persists along with sore jaw & neck. I do suffer from TMJ but they say that would not cause the sudden deafness. Anyone have the tongue pain with loss of hearing?

[Suescottnh]

I am new to this site and wondering how you are doing. I too have some of the same issues and wondering if they are missing something. It started with dental crown for me an I ended up with burning pain in jaw that radiates to under ear and in my gland...feels like a lump there. Sometimes it goes to my temple and feels like there is something in ear. The pain will go into the Molar tooth that I had the work done on and makes me think it's all related to the tooth, but I hate to pull it if that's not it. I never have clicking or popping, just pain that comes and goes in intensity and where it is at. I also have crazy salt taste on the same side everyday that changes to bitter sometime. Getting very frustrated with no answers but maybe neuropathic pain. I am taking neurontin with not much change. Just started B12 and been on numerous antibiotics. Getting depressed and frustrated! Anyone have any suggestions?