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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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Pressure between my left tonsil and ear has returned after being away for some three months. I have got long courses of antibiotics. Because they affect, the reason must be an infection. The pain in the ear and its surroundings is referred pain from the tonsil. My tonsils themselves are never sore. The infection must be in the deep crypts or even behind the tonsil.

During the last antibiotic in March 2014 I had Herxheimer reactions, which means that bacteria are being killed. The bacteria in my tonsil crypts have not been identified, but there may even be Borrelia among others. My ELISPOT LTT test for Borrelia came back as positive from Infectolab.
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I am at my wits end. I have read all the comments. The only reassuring thing about it all is that I am not going crazy. The symptoms really do exist. Please keep us posted.
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TO ALL OF YOU SUFFERES PLEASE CONSIDER EAGLE'S SYNDROME AS A POSSIBLE DIGAGNOSIS , I HAVE BEEN HAVING ALL THESE ISSUES AND WAS TODAY DIAGNOSED AFTER A 3D CT SCAN !!!! PLEASE GOOGLE IT !!! HERE ISS A GREAT FORUM  http://www.livingwitheagle.org/
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9436463 tn?1409419956
Have anyone else conclusion of these posts? what was the final treatment of all them. Anyone know?
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9436463 tn?1409419956
Is eagles syndrom couse pain 24/7
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I had exactly the same thing. The burning and tingling would wake me up several times at night. My biopsy also came back as actinomyces.  I am taking amoxicillin 500  three times daily. Can you please reply and tell me about your dosage?  One of the infectionists  I saw told me that is a low dose for the bacteria.  Want to know how you're doing.
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Hello,
Ok the process of all the posts on this thread, I feel so lucky to have found you all.  
I have suffered from a burning/pulling tongue which causes a very tight jaw thaI struggle with all day, this has been going on since 2003.

Just going to read the posts first so I can contribute my experience after.

Cheers
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I think what we should all do is get a biopsy of tongue/jaw/ throat to see if all of our biopsies match. I had tonsillitis in April 2014 and a burning sensation  under the tonsil/ throat area on the right side. I also had bumpy swollen taste buds that I always tried to swallow. Tonsils are now gone (3 months ago) (biopsy showed actinomyces) but stinging/burning sensation in the throat/ jaw remains and radiates into my ear. My whole throat feels even worse after the tonsillectomy. It's swollen, narrow, pharynx is very red and back of tongue feels even more bumpy/ rough. I'm on amoxicillin 1000mg 3 times a day for 3 months for the actinomyces. I started the antibiotics 18 days now but hardly feel any difference (maybe a little?) I am not sure if this is an infection or some pre cancerous indicators. I also have the HPV virus. Do any of you? I am probably going to get another biopsy again to make sure I'm not missing anything. If we don't help each other seems like no one will.
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4851940 tn?1515698193
With you being on a long term of antibiotics, ask your doctor to take a swab of your mouth and throat for thrush.

Antibiotics not only kill off the bad bacteria, but also the good ones too.  What happens then is that we get an overgrowth of yeast which is a fungus and can result in thrush.  Yes, you can get thrush in the mouth as well as the genitals, and on other parts of the body.

Sometimes, the doctor will prescribe an oral anti-fungal medication to take at the same time as the antibiotic.  For mouth thrush only an antifungal for the mouth is Nystatin drops or Daktarin gel.

A swab that is sent to the lab and if there is any bacteria or fungus this would be confirmed.  The swab would also indicate if you are on the correct antibiotic.

At home you can eat/drink yogurt with live cultures.  Also make sure that you drink plenty of water.  About 2 litres per day is fine.  

Wishing you a speedy recovery.
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I cannot believe there are so many people out there with the same frustrating symptoms.  First GP said infected salivary gland.  Swore it was my teeth.  Dentist took x-rays; said all is fine of what he could see.  Next on to ENT. Got a CT scan and he "thinks" its my tonsil, but don't take them out.  Adult tonsillectomy isn't pleasant.  I'll be 57.  On to next GP.  Sends me to a different ENT.  He "advises" to take my tonsil out and schedules for Sept 4.  Says might be a cancer thing, might be a stone thing.  I'm a smoker.  I still swear it's my teeth.  Scheduled an appointment with endodontist for Wednesday.  Can't believe it would be my tonsil and don't want to take the risks in surgery.  My throat isn't sore.  Tonsils don't hurt.  Just right side of everything...jaw line, tongue burning, wisdom tooth area and back teeth area itchy.  Ear itchy.  I don't have wisdom teeth anymore but I have a deep filling in the back molar there and also have had a root canal and crown on the molar beside it.  I've also purchased a night guard because I'm finding I'm grinding/clinching my teeth at night.  Swear it's my teeth......
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You should probably have a biopsy before tonsillectomy. The itchy feeling is driving me crazy as well. Wisdom teeth area, pallet,  and back of tongue.  I feel this through my ear. Recently all my teeth on the right began to hurt. I removed the wisdom teeth (don't know if it was smart considering I had infection in my mouth). Even though I'm on antibiotics I still experience these things but not as strong. Biopsy of a few areas is the smartest way to go.
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Thank you. I'm already doing Nystatin mouthwash and swallow. I began to develop horrific burning of gums and toothaches with long term antibiotics so this week I made a decision to stop and see if my immune system could figure this out on its own. Now I'm stuck with mouth hurting and still have the same throat problem.  Antibiotics just make things worse. The dosage they prescribe 1000th 3 times daily is impossible to take. I felt sick the whole time, couldn't get out of bed to eat, on top of it gum disease. I hope there's an end to this nightmare.
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4851940 tn?1515698193
Unfortunately, antibiotics destroy the good bacterial as well as the bad bacteria and being on antibiotics can bring on fungal problems.

If the Nystatin mouth wash is not helping, go back and see your doctor to get a swab taken from your mouth and throat and get it analysed by the lab.
Nystatin drops may be better rather the mouthwash or the Daktarin oral gel.  I am not familiar with the Nystatin mouth wash and do not know if the strength in that is the same as in the drops.  You may need more than one bottle of Nystatin drops to remedy your fungal mouth problem.

As you have been taking a lot of antibiotics, your doctor may consider prescribing oral anti-fungal medication.  There are a few different ones available and different strengths.  Sometimes some people have to take them for much longer than a once course of the medication.

I too experienced a severe fungal infection in my mouth after I had a tooth repaired and it took me a while to realise that it was a fungal problem.  

To help strengthen your gums and help to rid the infection, floss.  I am surprised that your dentist did not advise you to do this.  
When I had gum disease when I first saw the dentist that I am with now, he refused to repair one of my teeth until my gums were well.  And I was advised to floss.  If you do have gum disease, flossing will make them bleed, but with time, it will get much better and the gums will get stronger.  

Tooth loss (when the teeth just fall out) is due to gum disease.  

If those antibiotics are making you unwell, they may not be suiting you and you should also speak with your doctor about this as he would be able to prescribe a different antibiotic for you or tell you to reduce the amount that you are taking.

Some people are allergic to Amoxicillin.  

If your wisdom tooth was impacted, you did the right thing to getting it removed.  There must be a good reason why the dentist decided to remove your wisdom tooth if you had a mouth infection.

Wishing you a speedy recovery.

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I feel same way as you.... Have been dealing with this right swollen tonsil, right ear and neck ache for 2.5 yrs. Elavil helped me but now that I'm off the pain is back all the time no forgiveness. It's wrecking my life and no one  can find anything wrong with me. I've seen every doctor, got all the scans, pushed hard and now just waiting for my tonsils to come out to try and alleviate the pain. It's along shot but worth the try
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I'm wondering if I have an undetectable type of head and neck cancer...but shouldn't things have shown up in the last 2.5 years if I did. All the docs say nothing looks abnormal and they are clueless as to why I'm having right ear, right neck and right tongue numbness ongoing when not on mediation.... I want to gave another baby so bad but I'm scared I won't be around for them to grow up...Any thoughts anyone about my condition or what should I do?
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I've been having left sided tongue pain for YEARS.  The pain is towards the back, at the back  molars, and on the left "edge" of the tongue.  It feels like it's irritated all the time.  Also have sinus issues and drainage that only seems to affect the left side. Constant feeling of needing to clear my throat, but only on the left side.  Constant feeling of drainage going down the left side of my throat.  Constant dull earache left side, that some days can be a pretty severe pain.  Dentist says nothing he sees causes concern.  GP didn't really do much looking but said "that all sounds like nerve issues" and that was it.  Really starting to worry.  Smokeless tobacco user and fairly heavy beer drinker for over 15 years now.  ANYONE had any relief or positive diagnosis? Also I'm a 37 year old male, in good health other than this.  Been clean eating since Feb and have lost 43 lbs to get back into my ideal weight range, but no relief from above issues.  One thing I've considered is LPRD.  Anyone else considered or been told about that?
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I have similar pain! it went away with upper cervical chiropractic care, but just came back tonight after a year and a half, and I'm scared.

I have heard about something called Eagle Syndrome, tat is very rare, but causes this weird crazy pain that we all seem to share.
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When you have the surgery ask for the tonsils to be biopsied. You should probably biopsy a tissue below or around the tonsil. This sounds like actinomyces to me. Can you please let us know what happens after the tonsillectomy?
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I had pain and numbness from my ear to my eye socket on the right side in 2011. I had a horrible, bitter taste in my mouth for months. My inner ear hurt. My face felt like it had a cold steak on it. This what they did:
1: treated me for Bell's palsy, didn't have it
2. tested me for Multiple Sclerosis
3. Suggested Trigeminal neuralgia
4. threw their hands up in the air
I ended up in the ER with muscle jerks. I had, at that point, done my own research and discovered b12, calcium and potassium deficiences cause those symptoms. I had started taking calcium supplements prior to the muscle jerks. I thought I had tetany. The ER dr thought I had MS, told me to talk to my neurologist. I asked for the electrolytes test (which annoyed her) and she seemed to hate admitting to me that I had very low potassium and moderately low calcium. I was given potassium pills. I felt this was it because Id had severe diarrhea that led to dehydration and multiple bladder infections, dehydration so severe I almost passed out and I lost control of my legs. Thats when I did research. It went away with potassium. It came back and it was low potassium again. I am constantly dehydrated.
Now I have thrush from unrelated problems, complications of surgery, six antibiotics and an inhaler.
Here's what's going on:
1. coated tongue
2. swollen tongue
3. burning tongue, all on right side
4. inner ear pain
5. possibly unrelated high cholesterol (possibly because hypothyroid is implicated though my tests are fine.)
6. dehydration
7. distended uvula, swollen with cyst on tip, ENT said not cancerous
8. heart palpitations
9. some sort of lung scarring
10. Surgery site not completely healed
11. minor boil slow to heal
12. low vitamin D
13. high B12 but may be due to b12 injection given due to presumed b12 deficiency anemia
14. swollen lymph nodes in neck
15. blood and white blood cells in urine
16. suspicious mass in breast
17. morning headaches
18. asthma

These may not all be related.

Possible causes:
1. Chronic thrush due to above treatments, but having taken nystatin and diflucan repeatedly, plus clotrimazole lozenges Im doubtful
2. Suspected diabetes even though blood sugar was normal, ketones in urine


Possible diagnoses:
1. Thrush, hypothyroidism, b12 or other electrolyte or vitamin deficiency
2. amyloidosis or sarcoidosis due to lung scarring as well
3. lupus
4. leukemia
5. Sjogren's (dry eyes, dry mouth, consider Sjogrens)
6. lymphoma
7. oral pharyngeal cancer
I now have 6 specialists. I am 40.

It's not hpv, trigeminal neuralgia, MS or herpes
or bell's palsy

btw, you may want to have electrolytes tested, Sjogrens or amyloidosis looked at, diabetes test, b12, Cytomegalovirus or Epstein Barr considered

Im at a loss. Falling apart. Sick of co-pays. I dont care if they are specialists, no one is looking at the big picture, because they only have their jigsaw piece.
I cannot keep track of it all. My short term memory *****.

Anyone with resolution?

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I had this, it was low potassium and low calcium, one sided. Check electrolytes! It can be caused by dehydration. After its treated the cause of dehydration is the issue.
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Ask about cluster headaches. Theyre horrible and have multiple types of headaches rolled into one
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I am in year 12 of this!  No true diag and have been across SE USA,  started at tongue/jaw on right side and now is from top of head to waistline on right side.  Bless y'all and prayers!  At year 7 I tried to "end it" and even though I live in major pain daily I am glad I failed!  I am 43 without other major medical issues. Unfortunately I woke up this past Monday with Bell's palsy on the opposite side!  I am sad again but at least it is numb and doesn't hurt. I take soma and entirely too many ibuprofen daily, and lortabs, and Xanax prn. IF ANYONE HAS GOTTEN A DEFINITIVE DIAG PLEASE LET ME KNOW!
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Hello all,

I have been experiencing pain on my right upper and lower teeth as well as on the right side of my tongue base and also my ear every now and then, especially when I swallow. This started 2 days ago but i didn't really gave much thought to it as I thought I had accidentally just bit the right side on my tongue chewing or something. Last night I was trying to find the wound of where it was I actually bit my tongue and could not find one and considering that this has been going on for a few days and only getting worse, I turned to google and it lead me here, all my symptoms are just like yours except on the right side. I havent gone to the doctor yet, I thought I'd see what i can find first since going to the doctor where I live takes all day. I am 25 by the way. It might be selfish of me to say that I am slightly releived to find I am not alone in experiencing these symptoms and after reading this thread it seems this is a problem that won't go away so I really only have 2 questions regarding this; 1) Will I infect anyone else with this and do I have to isolate myself from everyone I am currently living with? And 2) Do I need to start typing up my will anytime soon?

Thanks guys
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Don't do the tonsillectomy. You have no idea what an adult recovery is like. It's like have surgery every day for at least 3 weeks with no anesthesia ... I did and will never forget it. Nothing was wrong with my tonsils either. It was a muscle under the chin.

Your digastric muscle is your problem. Wish I had known it was mine years ago.

Do the following exercises as described and recommended at least 3 times a day. You'll soon see your problem go away.

STRETCH YOUR THROAT, THE MUSCLES UNDER YOUR CHIN AND THE FRONT OF YOUR NECK (anterior cervicals, suprahyoid, infrahyoid, digastric, platysma): In a seated position, lean slightly forward and stick your chin out (protrude your jaw), checking the position of your TMJ (temperomandibular joint) as above.  Point your chin up toward the ceiling, tilting your head backward.  Focus on pointing your chin up and be sure you are leaning forward to keep your head from falling back.  It should just tilt at the base of your skull.  Stretch for a few seconds, then lower your chin to relax the muscles.  Repeat 10 times.  To assist the stretch, go as far as you can using the power of your muscles, then press upward on your chin with the fingers of both hands.  Exhale through your nose as  you assist for two seconds. Relax and repeat 10 times.

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Don't do the tonsillectomy. You have no idea what an adult recovery is like. It's like have surgery every day for at least 3 weeks with no anesthesia ... I did and will never forget it. Nothing was wrong with my tonsils either. It was a muscle under the chin.

Your digastric muscle is your problem. Wish I had known it was mine years ago.

Do the following exercises as described and recommended at least 3 times a day. You'll soon see your problem go away.

STRETCH YOUR THROAT, THE MUSCLES UNDER YOUR CHIN AND THE FRONT OF YOUR NECK (anterior cervicals, suprahyoid, infrahyoid, digastric, platysma): In a seated position, lean slightly forward and stick your chin out (protrude your jaw), checking the position of your TMJ (temperomandibular joint) as above.  Point your chin up toward the ceiling, tilting your head backward.  Focus on pointing your chin up and be sure you are leaning forward to keep your head from falling back.  It should just tilt at the base of your skull.  Stretch for a few seconds, then lower your chin to relax the muscles.  Repeat 10 times.  To assist the stretch, go as far as you can using the power of your muscles, then press upward on your chin with the fingers of both hands.  Exhale through your nose as  you assist for two seconds. Relax and repeat 10 times.
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I have recently seen a dentist and an ENT doctor. There is no problem with my temporomandibular joint. The ENT doctor said that if my tonsils are taken away, the "facial" pain may not disappear. I am waiting for an appointment with a neurologist. I have cervical dystonia. But I think that the one-sided pain results from some kind of infection. I may have anemia. My gums and other mucous membranes are pale. The red cells are small and pale. The hemoglobin and red cell count are, however, OK.

The pain has been rarer in the summer. The last antibiotic in April and the subsequent warm summer helped much.
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What is your status?  
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I have a similar thing....it's a dental strip sewed in after wisdom tooth dental surgery that came loose and is poking from my mandible into my tonsil.   Part of it is lodged on the floor of my mouth you could see it poking out under my tongue and its tearing my tonsil pillar.   No drs will remove it  I've been 8 mos. face down almost unable to move.   It sux. ENT said they don't do anything under the tongue and refused to even look..they look up my nose and went down my throat that way.  Mine is under the mucus membrane so they don't see anything.  At one time a corner was showing and I tried yanking it out.  Oral surgeon won't touch it either.   Doesn't seem fair.   I keep getting patient turfed and dumped while I suffer.    Have been diagnosed w/ the most ridiculous things...as if the Drs. don't even listen to what it is.   3 of us have seen it but the Dr's have actually tried telling me it may be gas and to take Prilosec. ..or perhaps it's anxiety.  Really????!!   Very frustrating.  
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Hi everyone, i bope this thread is still going on because im experiencing similar things. This year has been extremely rough for me. In february, i had a stomach virus, then a sinus infection, followed by three "female infections". I was on a slew of antibiotics/fungals. I had a bad drug interaction with alcohol and metronidozale, and suffered horrendous vomiting, racing heart and my arms went completely numb. I mention this, because i feel like everything else has gone wrong from there. In april I was hospitalizeddue to stomach pain, heart palpitations and intense flushing with the feeling of needing to vomit but never doing so. I was out of work for a month, having an endoscopy and gastric emptying test done. They found acid reflux in lower third of my esophagus and gastroparesis (paralyzed stomach, namely vargus nerve dysfunction).

I was on the road to recovery when i saw my dentist in May, and had complained of having a weird gunky feeling in my throat, they saw nothing and did a cleaning. Feeling persisted. I saw my pcp, who saw thrush and had me on nystatin followed by diflucan. During this time the LEFT side of my tongue went numb or felt like i had burned or bit it, but did not. It moved to the right side, and since both sides have been numb. I have noted also my throat consistantly feels like there is a lump or tightness. My lymphs feel swollen. And this has progressed to bizarre sensations in my ears of a warm tingling. Ive seen two ent docs. First guy put me on more prilosec. I take prilosec and zantac daily for a.r. He then tried amoxicillin for ten days and i noted my lymphs went down, when i told him this he said it could just be a placebo effect. Then had me going on neurontin which helped minimally and he was gradually increasing my dosage. He did a scope and saw nothing crazy. I do have tonsil stones. He says my nose and ears look fine. I eventually see a new ENT who did more thorough tests, but says next stop is neurologist. I havent had a blood test, swab, xray, ct scan nor mri. My first ent was encouraging a ph probe, to see acid reflux prevalence. As well as possibly taking my tonsils "and see what happens". Both sides of my tongue feel swollen and numb and i accidentally bite it often. I am taking b12, potassium, a.r. meds, probiotics, gummi vitamins. I question if they are right with the nerves, due to my recent issue with the gastric nerve. I am a smoker, been trying to quit for quite some time. I know long term infection can cause nerve damage, and one of my meds that i had been on and off cipro, can also fry nerves. In addition, prior to all this, i was a medical marijuana patient, never had an issue and only helped. Now, if i do try to smoke, I have intense jaw rigidity, throat symptoms get worse, and i convulse or shake. It also caused loss of hearing a double vision. I have been non smoking for months now as a result.

Overall, my medical problems have included: endometriosis,kidney stones, gastroparesis, a.r., tmj (clicky jaw my entire life), low blood pressure, which they claim is normal for my weight etc.

My meds have included: diflucan, cipro, nystatin, bentyl, zofran, amoxicillin, neurontin, prilosec, zantac, reglan, metronidozal, possibly more. Cant remember.

My symptoms since everything went awry have included: weight loss (mostly due to gastroparesis), appetite loss, racey heart, pulsating tinnitis, eae pressures, swollen lymphs, sticky saliva, dehydration issues, tongue numbess/swollen, sore/tight/lump feeling in the throat.

Prior to all this I was otherwise healthy, just endometriosis pain and treatment with the med. marijuana. I had a good handle on everything. Then all hit the fan. I have also recently had a cold, post nasal drip, cough etc. Havent seen a doc for it, as i got a new job wbich requires me to be there full time the first month during doc hours. But i was brough to tears yesterday at my inability to focus during training due to these intense changes and fear for my health.

I should add Im 25, 94 lbs (still trying to fix weight), 5'5, low blood pressure. My recent blood work during my gastro issues showed nothing put of the ordinary. No thyroid issue, no defiecencies. My endoscopy and other scopes saw no masses. And my ents only say my throat looks irritated.

Sorry for the long story, but i feel it helps to have all the facts, and i hate to complain, but as i havent been feeling at all like myself and worried about something serious, ive been at wits end. I want so much to do well at my new job and not be concerned about my well being. It has made me anxious and sad. Then i found this thread and wanted to know if there was any suggestionsor advice??? Should i see a neurologist? Should i get a ph probe? I dont want a tonsillectomy... Should i go alternative?
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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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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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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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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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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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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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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 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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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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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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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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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 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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just wondering if any of you are still on this thread?
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did purple74 have a resolution?
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did purple74 have a resolution?
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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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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.
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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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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.
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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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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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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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