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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.  
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I have had the exact same symptoms for 6 months.  I have been to 14 different doctors and had both CT and MRI.  Heard a lot of guesses.  Last guess sounds like a winner.  Glossopharyngeal neuralgia.  look it up on google. It appears to match my symptoms.  We shall see.   they are treating me with duloxetine, gabapentin, tramadol.  Ibuprofen at 600 mg level helps for interim.  
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Any answers?
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Ok so a few weeks ago I had the flu took all my meds till the end a few days go by after meds finished the left side of my toungue felt swollen it hurt so bad I was in tears a few times then my left ear and under my jaw on that side was tender but not hot as if it was infected somehow. The pain was on going for that whole day and next morning. This was 2weeks ago! Then 3days ago and today is 1/27/18 the pain is back and it's worse still no fever I don't feel sick my ear just feels weird but hurts and when I try to yawn I can't the pain in my tougue is horrible! When every time I swallow I feel it and that pain ranges I feel it but some times it's not bad a couple swallows but then it gets so bad I try not to swallow and then it goes away and then I feel it AGAIN. No fever no lumps or sores on my toungue no bad breathe no cavities the pain in my toungue feels like something would be there yet I can't see it I'm so lost I don't know what to do i haven't been to my primary yet because I'm afraid il have to go through all of which u ladies had too. I have read and researched my symptoms in Google and on medical websites and all I'm getting is this rare nerve disease (glosso) i can't even spell it! I'm only 27 years old this disease usually starts 40s 50s age and men are more likely to get it. But ALL my symptoms are to a T with this . Please some one give me answers.
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sounds like a tonsil stone
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Has anyone found out the issue yet? I’m having the same issue for the last month. Been trying to get answers, on antibiotics with no relief. Thank you!
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I have had the feeling of ear filling with liquid, numbness to left side of tongue, difficulty swallowing & terrible tinitus, if I poke my tongue out it veers to the left, turns out I have a right side meningioma, a kind of brain tumor, only found after a skull CT scan and MRI.
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Hi there, I've been experiencing similar symptoms and will be having tests done. I'll keep you all posted on how it goes. Thanks.
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I’m also experiencing a weird problem with the left side of my mouth and throat. Started beginning December 2017 seen 4 doctors and my dentist twice all say can’t see anything wrong. It started with a feeling something was stuck just behind back of my tongue on left side then I got sore tongue on left side and feeling ear blocked. Was prescribed Nystatin mouthwash for thrush, no good! Then amoxicillin 500 for 7 days no good. Symptoms go for about 2 days then return just like a cycle! Going on holiday for 2 weeks then doctor ringing to see how I am and if no better sending me to ENT. Anyone else got similar symptoms?
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I've been having similar issues for about a year now. Dull pain and congested feeling in my right ear. The right side of my tongue has discomfort and occasional pain. The right side of my throat has discomfort and pain. Also my throat feels raw at times. The muscles in my neck (right side) are enlarged.
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My ENT initially diagnosed it as silent reflux or lpr and prescribed omeprozal. It helped only slightly. I'll be seeing my GP for a physical in Feb. And I'll ask about my symptoms again.
Epstein Bar?? I have had this for for years. It gets better and worse depending on how I feel. I have cvid, but I think it's stress or viral related;)
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Are any of you still dealing with this and if so, has anyone gotten a diagnosis? Thank you!!
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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.
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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.
Avatar universal
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.
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just wondering if any of you are still on this thread?
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did purple74 have a resolution?
did purple74 have a resolution?
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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.
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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).
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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.
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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.
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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!
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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.
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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?
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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?
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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?
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Since the beginning of september 2014 I have had numerous problems with my face. Like many others my googling the issue led me here. Where do I begin? It all started with a simple ulcer on the inside of my cheek down near my impacted wisdom tooth on the left side of my lower jaw. All of my symptoms are on the LEFT side of my face and are as follows: swollen tonsil, tingling and burning left side of tongue , sensitive inner cheek, ear ache (feels deep), saw jaw, saw masseter muscle, masseter spasms. These all started at the beginning of september 14.

The only health issue I had before was a blocked left nostril and post nasal drip for about a year on and off. I also had h.pylori in june, went on eradication meds and tested negative 4 weeks after treatment. I suffer from heartburn and take 40mg of somac each day along with probiotics and most of the time a good diet. I have suffered from heart burn and indigestion since 2010 and have never had the problems I started to get at the beginning of september.

They have found glandular fever. I got tested for previous infection and current infection and I tested positive for both. I also have a higher than normal white blood cell count. Dr said this is because of the glandular fever.
An icat scan done at my dentist showed an asymmetrical maxillary  sinus. They had no cause for concern but I am lucky I pointed it out and told them I was worried and they said we don't know here's a referral to an ent.
I spent 5 days googling maxillary sinus and what would cause one to be larger than the other. I found my diagnosis in a journal talking about "silent sinus syndrome", my first ever visit to an ent and he agreed with me and gave me the formal diagnosis of silent sinus syndrome. It's a rare condition so not hard to diagnose. I was told I've had this for a long time, it's a chronic disease and rarely has symptoms. It's long term effect on the orbital floor can be bad and cause double vision though.

I went over seas for 4 weeks with the face pain in tow, came back had an mri which showed I have an arachnoid cyst on my brain. However, dr's say I was born with the arachnoid cyst and that it's not related - besides even if I wanted to link it I couldn't as its on the right side. Seeing a neurologist in 2 weeks time.

It's hard to explain the sensation but imagine brushing your teeth, afterwards you get the menthol freshness. Well, with the left side of my mouth, the menthol freshness stays for longer than the right side and can be painful. That pain can be triggered throughout the day for no reason. I don't wake in the night from this pain. The pain is not on the outside.

I thought at first I had a knot in my masseter muscle so I began looking into how to massage it. This seriously made the problem worse and ended up treating it with cold packs after I tried with heat and it didn't work.

Then I diagnosed myself with a blockage in the stensens duct, I even got my dentist to agree with me. But It's not blocked, I am not dry on that side of my mouth. I ended up thinking maybe an infection could be inside the duct.

I don't know how many days I've lost believing I have a cancer somewhere and that I am dealing with gps who just want to diagnose me trigeminal neuralgia. I was under the impression only a neurologist should hand out such an extreme diagnosis and only after they have done a test to rule out tumors on the nerve as that can cause the same symptoms as TN? I read that in a journal.

Basically my health team thinks it's logical to remove the most common causes like the sinus silent syndrome and then my 4 impacted wisdom teeth.

I just had the sinus surgery a week ago, nose is still blocked, got an infection 5 days after surgery and my symptoms in that side of my face have not let up - before the infection or during.

Next is my wisdom teeth surgery in 2015.

The only other noticeable difference from the left to right side of my face is at the angle of my jaw. If you feel the angle of your jaw, not under, just on the edge. I have ridges that go upwards, I think they are tendons? My left is larger the right and sometimes sore - probably because I am always touching it now I've noticed it.

I have read numerous articles about cysts in the masseter muscle, cancer in the jaw, burning mouth syndrome, tumors of the parotid gland, TN, malignant hypothermia, myxomas, hemangioma, hypertrophy, jaw alignment, tendinitis and the lists goes one. I'm at a loss. I seen a mayo facial specialist last week and before he does any tests would prefer to rip all 4 wisdom teeth out, as they are the likely cause in his opinion.

I guess I am happy to be told that cancer isn't the likely cause. But I can't shake the feeling something isn't right. My wisdom tooth has been partially exposed for over 2 years and I've never had these problems. If you asked me where the pain was I wouldn't point to the wisdom tooth.
I must say though, after the sinus surgery my left tonsil did start to go down a little.

Just some food for thought: in mid October 14 I woke up and my tonsil hurt more than usual. I got a qtip and tried to remove the white spot on my tonsil thinking it was food or puss. To my shock horror it was hard and not going anywhere. Back to Google I went. Found out it could be a tonsil stone, watched a youtube video on how to remove it and after battling with it for 3 days I got it out gently with a pair of blunt tweezers. The pain left immediately. I thought I had been given a second chance at life, here I was thinking I had cancer somewhere that nobody could find. You could say my spirits where up until the pain returned the next night. I returned to the mirror with a flash light in tow to remove another possible stone but I couldn't find anymore.

2 weeks later my ent (without me mentioning it) said  that I have tonsil stones. I said I know I had one a few weeks ago but I can't see anymore. The ent said he could! So I have more I just can't see them they must be at the back.
I read somewhere that this lady removed a stone it started bleeding and had to go to the hospital. So if you have a stone I wouldn't remove it like I did. Maybe it's possible that a stone could be pressing on a nerve? And be causing this weird pain in left ear, cheek, tongue and jaw. Also if you Google what causes tonsil stones, post nasal drip is one of them (my ent said the same thing). I did have that from my blocked maxillary sinus and would explain now why after surgery my tonsil has gone down a bit. Although it hasn't anymore but I do have bad post-op infection that caused extreme back of the eye pain(left) and caused it to swell under the eye once the pain went away.

Anyway I am not convinced it's caused from one thing or the other. I just hope I have crossed all my t's and I haven't missed something. I swear my dr's hate me! Any thoughts would be appreciated. Good luck all!

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Avatar universal
I'm going to take your advice and try the digastric muscle exercise. I also have the feeling of someone choking me in the throat.  Currently, my jaws feel like they are twinging on their own and my left ear aches.  I will let you know if I get relief.

From reading the posts, it seems like the symptoms started with a sore throat followed by ear pain.  My symptoms began after I came down with pityriasis rosea and severe sinus problems in May 2014 (I had major surgery 5 months before).  I remember I was constantly trying to clear the thick mucus out of my throat.  I wonder if the constant clearing of the throat is what messes up the digastric muscle? Or maybe from the surgery? Or both? The ENT put me on allergy medicine which caused my pulse to run over 180.  Between the rapid pusle and the ear pain, I ended up in ER and had a CT scan done on my sinuses and neck.  Everything was fine.  All the blood work was good.  Since then the pain has spread to the jaw.  I had some minor popping in the right jaw.  Now the pain is more like arthritis and it is in both jaws.  The pain has gotten so bad that I am afraid to eat solid foods.  

I saw a dentist last week for a growth I recently found on my left gum beyond where my wisdom tooth would have been if I still had it. The dentist said he was 100% positive that it was bone from when the wisdom tooth was extracted and it started protruding due to bone loss. He also noticed a fold in my gum line where he said a nerve was exposed. He said that might be causing the pressure in my ear, jaw and face. I have an appointment this coming Wednesday to get it checked out by another oral surgeon.  

Since then, I had an incident of severe pain across my face that affected my jaw, ears, eyes, and head (both sides of my face was affected this time).  It was extremely painful and lasted a couple of minutes, with the pain subsiding afterwards. It felt like someone jammed a stick into my lower jaw across my mouth and into my other ear.  I was on pain medicines for 12 hours before the pain was bearable.  It is my hunch that I truly suffered from Trigeminal Neuralgia which was a lot more painful than this Mayofacial Pain Syndrome that I was recently diagnosed with by a previous oral surgeon.

I also have a 1" mass of knotted up muscle on my neck under my left ear.  It feels fibrous to the touch (not actually like muscle).  I'm supposed to see a neuro surgeon about it. Still waiting for my doctor to make the appointment.
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I have scanned through the list  of posts and was keeping everything crossed that for moench that the chemo and radiotherapy have gone well.  I truly hope so.  It's going to be a tough time.

I just could not believe the amount of people who have similar symptoms to me, although mine extend up behind my nose and between the eyes, and something is really affecting my vision.  I had infection draining from the gum on the left hand side of my lower jaw 21 months ago and then nothing but problems since.  I can feel something behind the bridge of my nose and in the front of the throat, like pressure and discomfort, cracking jaws, pain and swelling under the chin (which my dentist found but said could not be infection as it is over the midline), pain under the tongue and somewhere behind the tonsils, particularly on the left, pain in the roof of my mouth (the soft palate) and tingling there, also in my forehead on the left,, an awful chemical/metallic bitter taste at times.  Recently I keep smelling something like blood but have no nosebleeds.

I have had so many investigations - MRI of the head, neck and brain, CT venogram, lumbar punctures (because of my vision), blood tests, consultations with neurologists, maxillofacial specialist, ENT, etc.  Nothing doing, all they have found are small cysts on my thyroid and the back of my tongue. Some of the doctors treat you are mad and think that if the tests are normal you should be 'reassured', but when the symptoms don't go away but get worse, how can you be?  I do have advanced glaucoma, but my consultant thinks that my foggy vision, visual disturbances and visual snow are not being caused by the glaucoma.  I can no longer bear the light either.

I still wonder if it is something to do with the original infection in the gum as the face swells from time to time and I have had root canal treatment and two large fillings in the wisdom tooth behind the two root canal treated teeth, and when I had the second filling on the wisdom tooth a couple of months ago I ended up with dreadful toothache, a swollen face and nearly collapsed with a vaso vagal attack with the A&E doctor was convinced was due to infection.  I had a course of antibiotics which took the swelling down and stopped the toothache, but I still have pain under the tongue and in the throat.

Any ideas?  And if

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Avatar universal
I have been having similar symptoms for about a month now.  Feeling that my ears need to be popped, pain behind my throat (which, I guess, would be my tonsils), itching and burning feeling on back of tongue, had a sore jaw, pain under chin/jaw, soreness of gums and teeth, pressure at bridge of nose at times, headaches and pain behind eyes.  I went to the Dr and he prescribed me an antibiotic, diagnosing me with a sinus infection.  Finished the antibiotic - still have symptoms.  Like you, I started worrying about "The C Word", especially because my father had Base of Tongue Squamous cell cancer.  Yesterday I went in for a physical and I'm hoping that if anything severe is wrong, it will show up in the blood work.  At this point, I am so nervous/anxious that I don't even know for sure if my symptoms are "real".  I also have made an appointment with a Spine Rehabilitation doctor to see if maybe this is a nerve compression issue.  I have dealt with neck/shoulder issues for a few years now and when I went to a Chiropractor last year, he said I had bone spurs and could eventually end up with nerve entrapment issues.  I'm amazed how many other people have been experiencing similar issues, but also scared I may never get an answer!!!
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Avatar universal
I, too, had very similar symptoms.  I finally saw an oral surgeon in St. Louis who diagnosed me with Myofascial Pain Syndrome from grinding my teeth to the point where my joints have become arthritic. Apparently, I've been suffering from anxiety because I was told I had Ovarian Cancer over a year ago. There was no cancer but the constant fear of thinking something was wrong made the anxiety worse. Weight bearing physical therapy for my upper body is helping relieve the symptoms. The muscles that run through your under arm and shoulder blade are complexly related to your jaw joints somehow.
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