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Strange Tongue/Jaw/Ear Issues
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.
Maybe should add I am 39 yrs old 5'4" 115 lbs and otherwise very healthy...blood work came back normal after physical and blood pressure always within normal range. I had a deep filling done on my right side about a month prior to all this starting...deep filling done on left side (affected side) but a couple months after all this started. dental xrays are fine.
MEDICAL PROFESSIONAL
Hello and hope you are doing well.
Another cause for the pain you are experiencing could be temporomandibular (TMJ) joint arthritis. This is the jaw joint and inflammation of this joint can cause pain on opening the mouth and tenderness on palpating behind the ear. Check with your doctor to rule out this condition. Lymph nodes which are enlarged greater than one cm are significant. However, you can follow up to see how they are progressing.
Hope this helped and do keep us posted.
Another cause for the pain you are experiencing could be temporomandibular (TMJ) joint arthritis. This is the jaw joint and inflammation of this joint can cause pain on opening the mouth and tenderness on palpating behind the ear. Check with your doctor to rule out this condition. Lymph nodes which are enlarged greater than one cm are significant. However, you can follow up to see how they are progressing.
Hope this helped and do keep us posted.
Thank you for your response. My ent has suggested exactly what you have about the tmj artheritis. I have an appt with a dentist to evaluate in a couple of weeks. I am skeptical, but hopeful. As far as the lymph nodes, the only palpable one is 8 mm...and may be even smaller by now. I don't know if there is any connection, but I will say that I do have HSV2 and this is what the pain reminds me of, but in a totally different region... I have wondered of the possiblity of PHN related to shingles and the trigeminal nerve but am told it is unlikely since I did not have a rash. However, the neuro has told me that the treatment would be the same with the gabapentin. I will keep this board posted as I have seen similar types of threads and no one ever seems to stick around and post outcomes or solutions.
Thank you again for your response.
Thank you again for your response.
Just an update...saw an orthodontist regarding TMJ. He did not see anything wrong with my jaw and has suggested I might benefit from massage therapy. Not sure if I'm going to do that or not. I'm just about tired of it all. Hoping it goes away on it's on. I am starting to have some good parts of some days. I wonder if it doesn't have something to do with a herpes virus...maybe PHN and I didn't notice the rash...or at least the doctors didn't. When this first started the pain was localized in my throat and both me and my husband thought we saw yellowish bumps or blisters. I freaked out. My MIL thought I may have strep and about a week later I went to prompt care. By this time the intense sore throat and mild ear ache was becoming tingling/burning pain. the prompt care doc saw nothing but since I had a fever (mild) she thought it was viral and told me to give it a couple weeks. As time went on the burning and tingling spread to ear, tongue, jaw, and ironically - only occasionally the throat where it all started.
Who knows...will try to remember to update for all those people like me who see posts that sound like themselves but never see the resolution.
Just hoping all the docs and tests are right and not missing anything major. This amount of pain scares me even though the doctors say this amount of pain does not necessarily indicate a deadly medical issue...that the biggest concern I have is usually not painful until the point at which we would be able to see the issue for sure.
Who knows...will try to remember to update for all those people like me who see posts that sound like themselves but never see the resolution.
Just hoping all the docs and tests are right and not missing anything major. This amount of pain scares me even though the doctors say this amount of pain does not necessarily indicate a deadly medical issue...that the biggest concern I have is usually not painful until the point at which we would be able to see the issue for sure.
Still nothing definitive, but did begin developing similar pain on right and had tonsil stone (new for me) sticking out on right side. All of my problems had been on left. Got the one on right out and looked behind flap and left side had tons that I could not get all out. Doc helped get out and prescribed antibiotic. However, they tell me this could not be causing my ear, tongue, jaw, swollen lymph node issues....
MEDICAL PROFESSIONAL
Hello and hope you are doing well.
As your doctor has suggested its unlikely that tonsil stones can cause your symptoms. Sometimes canker sores can cause these symptoms. It is very painful and can occur due to stress, vitamin deficiencies or trauma. Also, consider neuropathy. It is a disorder of the nerves which causes numbness, tingling, unusual sensations and sometimes pain. Diabetes Mellitus can cause neuropathy. Other causes like vitamin deficiencies, alcohol consumption and certain medications can cause neuropathy. Discuss these options with your doctor when you happen to meet him next time.
Hope this helped and do keep us posted.
As your doctor has suggested its unlikely that tonsil stones can cause your symptoms. Sometimes canker sores can cause these symptoms. It is very painful and can occur due to stress, vitamin deficiencies or trauma. Also, consider neuropathy. It is a disorder of the nerves which causes numbness, tingling, unusual sensations and sometimes pain. Diabetes Mellitus can cause neuropathy. Other causes like vitamin deficiencies, alcohol consumption and certain medications can cause neuropathy. Discuss these options with your doctor when you happen to meet him next time.
Hope this helped and do keep us posted.
What is new with you? I also had a throat right pain and after that a ear ache,and the ENT doctor did not see anithing.After 2 weeks it past ,but after 3 weeks it came back for 2 hours,past again and came back after 2 weeks,for 30-40 min/day ,for 3 days now.
I also have pain in my ear,tongue, and jaw on the left side. I've been trying to find relief for more years than anyone on a medical help board would want to hear. Have you gotten any help since May?
I wish I could tell you that I have an answer or it went away. But it's still going on. Basically, when I wake up in the morning I think I feel not too bad. But not long after being up it's back to the same. It is ear full, itch, ache mostly directly in front and at the angle of the jaw. I have ache or throb or burning in my upper molar area and also my lower molar area and the area where my wisdom teeth used to be. Then, the most concerning to me is the left sided tongue tingle/burn, occasionally itch sensation. They have me on neurontin (gabapentin) but if it helps, it's not enough. I take 200 mg 3x a day, and they say I can increase...but I don't know why I would since I don't think it is doing much for me. On some occasions I have the sensations on the right side too, but not in the tongue and not as intense. I have discovered that I have tonsil stones (although they are not hard - gross, I know). But the ENT tells me that would not cause all these problems. I have seen a total of about 12 or more doctors/dentists/specialists and been scanned from the top of my head to my lungs and they have found nothing abnormal. At this point I am trying to believe/trust that whatever it is, it is not going to kill me or it would have been found. My ENT says, she has no doubt I have a lot of "nuisance" (her term) issues, but I do not have any infections or tumors. So, there we are.... Would like to hear more about your issues, if you would share?
Have you at any point had your jaw alignment checked out? If you teeth are not aligned properly after a new filling, it can cause extreme pain, dizziness and tingling.
When I had a new cap put in many years ago, it threw my jaw out of alignment and I suffered with extreme pain across my head and felt extremely dizzy.
With the salivary stones, has you been given any advice how to avoid these in the future? If there is any blockage in the Eustachian tube or from stones in your tonsils, no matter how small, as this will cause pressure and discomfort.
With you being told that you may have neuralgia, but no cause can be found, make sure that you are not sitting in any draught, or in a room with doors and windows open opposite each other. I start to suffer from tingling on top of my head, headaches and neck problems if I am caught in a draught or have air blowing on me. Sitting in the car with the air blowing on me makes me feel quite ill.
Have you had your iron and Vitamin B12 checked out? Low levels of this can cause tongue problems.
Best wishes
When I had a new cap put in many years ago, it threw my jaw out of alignment and I suffered with extreme pain across my head and felt extremely dizzy.
With the salivary stones, has you been given any advice how to avoid these in the future? If there is any blockage in the Eustachian tube or from stones in your tonsils, no matter how small, as this will cause pressure and discomfort.
With you being told that you may have neuralgia, but no cause can be found, make sure that you are not sitting in any draught, or in a room with doors and windows open opposite each other. I start to suffer from tingling on top of my head, headaches and neck problems if I am caught in a draught or have air blowing on me. Sitting in the car with the air blowing on me makes me feel quite ill.
Have you had your iron and Vitamin B12 checked out? Low levels of this can cause tongue problems.
Best wishes
My last spring four month jaw-ear-temporal pain has gone away. I felt only hints of it once during last week.
A dentist said that it may not be TMJ pain. Then an ENT doctor suggested me to go to a neurologist. It was not trigeminal pain. The neurologist suggested that it might be muscular dystonia. I have cervical dystonia, and, according to the neurologist, the ear pain may be caused by the dystonia.
I myself am not sure about that. Preferly I could think that it really originates from the ear or throat. During the worst symptoms, I also got tinnitus and vertigo. I have often sore flecks in my oral mucous membrane. My sublingual salivary glands often enlarge, maybe due to sialoliths.
But, I have read that one muscle goes through the inner ear. The symptoms may, however, be caused by tight muscles, either due to dystonia or stress.
A dentist said that it may not be TMJ pain. Then an ENT doctor suggested me to go to a neurologist. It was not trigeminal pain. The neurologist suggested that it might be muscular dystonia. I have cervical dystonia, and, according to the neurologist, the ear pain may be caused by the dystonia.
I myself am not sure about that. Preferly I could think that it really originates from the ear or throat. During the worst symptoms, I also got tinnitus and vertigo. I have often sore flecks in my oral mucous membrane. My sublingual salivary glands often enlarge, maybe due to sialoliths.
But, I have read that one muscle goes through the inner ear. The symptoms may, however, be caused by tight muscles, either due to dystonia or stress.
I cannot believe that you have the same identical symptoms as I. I have been suffering for 10 months now.....after 2 months of acute tonsillitis and antibiotic treatments I am still the same. Feels like something is in my throat every time I swallow, terrible jaw pain, unusual pain, sensation in tongue ear ache...all on the left side! Unbelievable!
Have another physical Dr. Appointment on September 12..... Will update then....how is your feeling now?
Have another physical Dr. Appointment on September 12..... Will update then....how is your feeling now?
I wish so much I could say I'm all better. Still pretty much the same...I think over time I get slightly better just have to think back to remember how it was worse before. Still pretty constant tingly left sided tongue ear jaw pain...very slightly but soft and moveable (painless) lymph node - definitely less than a cm still. I did ask the doctor to let me try elavil...only a week in to that so not ready to say anything about it yet. I do have a physical scheduled 9/17...fingers crossed that they still don't think it's anything worse than some kind of nerve damage from a virus...which is what they've left me with for now. My biggest fear is that they are missing something since they can't really tell me definitely what caused it and how long or if it will heal. The medical professionals feel pretty confident they have ruled out any life threatening issues like tumors/malignancy/serious infections. I just have trouble with trusting them I guess.
Please keep me updated on your situation. Hope you feel better soon.
Please keep me updated on your situation. Hope you feel better soon.
Update - I thought I'd let you know what's up here since I just had a physical and a 6 month dental yesterday. Basically, my condition is the same. The doctor tries to calm my fears about some unknown deadly disease stalking my face and mouth. My doctor checked me over and says that he believes, as the neurologist that this is nerve damage from a virus of some kind (atypical trigeminal neuralgia). He said it does fit with Ramsay Hunt, but that my age (39) does not. Regardless, he said treatment would be the same...and recovery could take years...decades, and may never completely go away. I had him thoroughly inspect my tongue since that is the part that upsets me the most the back left of my tongue feels like it is electrocuted and on fire! He claims (like all the other doctors and tests) that it is normal. Even though I think it looks crazy. I guess that's just because it's a tongue...
Ironically, the dentist found a leaking filling in the exact tooth I have been complaining about...one that was a deep filing that I had done around when all this started...however, it is the front rather than the rear of the tooth. That is going to be taken care of on 10/4. Here's to hoping he opens that sucker up and it's all infected and my problems are discovered... (ha! who wishes for a bad tooth!)
Just wanted to keep anyone who is watching this updated. I can't stand reading a thread and never seeing the outcome... So I don't want to be one of those :)
Ironically, the dentist found a leaking filling in the exact tooth I have been complaining about...one that was a deep filing that I had done around when all this started...however, it is the front rather than the rear of the tooth. That is going to be taken care of on 10/4. Here's to hoping he opens that sucker up and it's all infected and my problems are discovered... (ha! who wishes for a bad tooth!)
Just wanted to keep anyone who is watching this updated. I can't stand reading a thread and never seeing the outcome... So I don't want to be one of those :)
I have been dealing with all of this for the last year or so. Started like a fullness on the left side of my jaw. About 3 months ago my throat started to hurt when I would swallow. The whole time I would get crazy jaw and ear fullness and pain but more off and on. About two months ago my tongue started to go numb on the left side, mostly near the back, but it radiates forward and sometimes affects the taste.
I'm a 28 male and have seen more GP's than I can count. I have also seen 2 ENTs who scoped my nose and throat, and also gave me a CT. No significant findings for me either. I did notice that when I press my finger between my jaw and mastoid, under my ear I can feel a hard mass, which the Dr. has assured me from the CT scan is my "Spinal Process". I can only feel this mass on the left side. I was terrified of C also, but have had every blood test, tangible, and visual inspection possible.
I'm starting to think my neck vertebrae has shifted or twisted, causing all this. I am still on the journey trying to figure it out, but I will keep you updated with what I find. I do know that
I'm a 28 male and have seen more GP's than I can count. I have also seen 2 ENTs who scoped my nose and throat, and also gave me a CT. No significant findings for me either. I did notice that when I press my finger between my jaw and mastoid, under my ear I can feel a hard mass, which the Dr. has assured me from the CT scan is my "Spinal Process". I can only feel this mass on the left side. I was terrified of C also, but have had every blood test, tangible, and visual inspection possible.
I'm starting to think my neck vertebrae has shifted or twisted, causing all this. I am still on the journey trying to figure it out, but I will keep you updated with what I find. I do know that
I have had really bad posture and face left at work at my desk. I also sleep on my stomach with my head turned left. I have corrected my posture for the last week, and have been stretching and massaging, but i just get even more pain.
My gp office called me yesterday and told me that my tsh levels have changed from last year .6 to this year .3184 and below .34 puts me at hyperthyroid and now I need to see an endocrinologist. I have to wait until Nov 14 for just to see a nurse practitioner about that...guess they aren't too concerned. However, my aunt is an RN and said it is unlikely that this is causing my problem and could even be incidental to some of the meds they have put me on or the contract used on the CT. Thanks so much for sharing, and please keep me posted!! Your symptoms sound awfully similar to mine and anyone of us getting a diagnosis could lead a question for the others to ask our doctors. But really, I'd be just fine with it all going away too :)
Has anyone mentioned Shingles to you, I have very similar symptoms and pain and my Dr thinks it may be shingles and am waiting for a rash to appear. On occasions the rash doesn't appear and the symptoms can go on for years. I have also had jaw pain previously and had to wear a gum shield as I had a filing done which caused my jaw to go out of alignment, this pain is different. I have tingling tongue and lip, with ear and jaw pain. Hope you get to the bottom of things as living with constant pain can be so hard to deal with.
Your dentist should smooth down the new filling so that your jaw is aligned properly.
My dentist made by top gold cap too large and I had to have my bottom tooth ground down to compensate. I got severe pain across my head and nearly fainted with the pain due to the wrong alignment of my jaw after the new gold cap was fitted.
I was given a gum shield to wear afterwards because with having a Grade 3 jaw, my tongue was always being aggravated. I did find that taking iron supplements and B12 helped with the sore tongue.
My dentist made by top gold cap too large and I had to have my bottom tooth ground down to compensate. I got severe pain across my head and nearly fainted with the pain due to the wrong alignment of my jaw after the new gold cap was fitted.
I was given a gum shield to wear afterwards because with having a Grade 3 jaw, my tongue was always being aggravated. I did find that taking iron supplements and B12 helped with the sore tongue.
I have the exact same thing going on. Anything new with you Purple? I have Graves' disease as if April this year and since then, I have had a multitude of strange issues. My left jaw and skin where my molar used to be is sore.y jaw itself and eat ache. More so my jaw and teeth. Been to ENTs, PCP , allergist, endocrinologist. Something is wrong. Period. And my sinuses are continuously a mess. Hope you're doing alright. I go next week to dr again and a new endocrinologist. Good luck!
HI! Yes, my wisdom tooth scar area on the left side top and bottom feels crazy - tingly pain. I'm so glad you commented! Graves is hyperthyroid, right? Do they say that has anything to do with all this craziness? I am hyprethyroid and they are sending me to an endo but couldn't get me in until Nov 14. I am pretty much the same as I have been. This is depressing and anxiety causing...I don't exactly need any more anxiety. Sheesh. Thank you for commenting and sharing. Keep me posted if you don't mind and I'll do the same. I'm on a cancel list for the endo...fingers crossed they get me in sooner...and that they've got some answers. Hope you get some answers soon, too!
Wanted to add that over the last 3-4 months I have been getting these crazy migraine headaches that feel like something is being pushed straight through my upper teeth through my jaw into my sinus and ear and into my eye! It's really wild. I've had migraines occasionally my whole life (even as a child of less than 5) and this is like a migraine, only more weird. Anyway...just thought I'd add that since you mentioned sinuses.
Hi. I was wondering if you had any news on what's going on with you? I know it's a few months later but I'm just now reading these posts and I am currently going through what appears to be the same exact thing, also all on my left side. Its been going on for 3 weeks and started with a sore throat and ear pain. The past couple weeks my tongue has been swollen and feels as if I have canker sores only I don't see any. I'm terrified. I've been to the doctor twice already and they keep telling me its a virus. I have another appointment in a week but its driving me crazy. I'm terrified its also some sort of cancer. I'm a 32 year old former smoker. I haven't had a cigarette in about 8 months. I've had blood work done and was told everything looks normal.
Nothing new here. Trying to just accept that this is some kind of wild post viral neuropathy and hoping it'll clear itself up... If that's the case, I think the outlook can be fairly long term...measured in years. Already been over one for me. Here and there I have days I think it's going to go away...then the next day it'll be just the same. If I find anything new out I'll post it. Hope you feel better soon!
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