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. My active imagination makes me think every little spot/bump is a problem...and I'm a little fearful to call a doctor because I think they all think I'm nuts.

Thanks again for any insight/personal experience you can offer :)

This may sound weird, but you MAY be reacting to the shot which I ASSUME you had when you had the deep filling. The tissue that got the shot could still be spasming and perhaps somewhat inflamed from that shot(s). I've often gotten pain in the area you've described after dental work, and it lasted awhile, but certainly not as long as YOU have had it. But I have heard of stranger things happening. :eek:

I just can't think of what else it could be!! You've had all the proper tests run, and everything has come up negative -- which is GOOD! :D I'm hoping this will just go away on it's own, but I know it's nasty while it's going on. :(

I wish I could think of what else it could be, but I just can't. Please keep us informed on your progress. Hopefully it will fade away. :winky: God bless and please take care. Hugs, Lee

strange ear/jaw/tongue issues
 

Hi Lee,

Thank you for your response. That was the doctors' (more than one of them) first thoughts - and may be the case. I had one deep filling done on the right and started having the pain on the left about a month later. Then about another month later (two months from the filling on the right) I had a deep filling on the left. The pain did become a lot more intense after that...I thought it was going away. So, maybe the shot aggravated it? Maybe it was originally due to the cavity? Heck, I don't know. But I do appreciate your response...and I certainly hope it fades away or "burns" out (pun intended:wink:) on it's own.

I did just see an orthodontist and he says my muscles may be tight be he sees no problem with my jaw (ie TMJ)...

I wonder if it isn't something to do with a herpes virus...either shingles and PHN and I never saw a doctor about the rash (at the beginning it was a sore throat and I had some blisters - at least that's what the hubster and I thought we saw when we looked with a flash light). I was freaking out and my MIL convinced me about a week later to go to clinic because she is a nurse and thought I may have strep. By the time I went in either the "blisters" had gone, or it was an illusion from post nasal drip because the dr. saw nothing. Also, the throat pain which started it all was INTENSE and the ear pain was mild. The throat pain went away in 2-3 weeks at the most and then burning/tingling started kicking in in ear, tongue, jaw, and occasionally throat. The tongue part is what scares me the most because a tongue has lots of bumps and craziness anyway and I freak out about it all...and I need to stay off the internet because it is TERRIFYING!

I will keep you all posted as to how it goes. I know I see a lot of online postings that seem very similar...but never do I see the outcome!

My neuro did say my pain very well may be post herpetic...but without having seen a rash there is no way to know for certain and also that the treatment would be the same unless I actually have a rash at the time.

As an aside, or fyi...I do have HSV2...and this feels very similar (although different location) except it NEVER, EVER lasts this long. That is why I wonder about the PHN from shingles...of course, I had chicken pox as a child...so it is possible...but again, without confirmation of a rash... Also, I have read that even recurrent HSV1 (which I have never been aware of having) can cause this type of pain... Who knows. I just hope they're all right...and the tests...because I have moments of sheer terror worrying about what's wrong with me.

Sorry for the novel...and again thank you so much for your response.

Thankful
 

Oh...I do want to add that I am ever so thankful, grateful, blessed that all the tests have come back negative. That is so awesome. but, pain is difficult...especially without a definitive answer.

I see all that you have been through and want you to know that I think you are courageous and strong for overcoming all that you have. And again, I appreciate your response and concern...my issues pale in comparison to what you have been/are going through.

Sending hugs your way!

I wonder if the medication just isn't a high enough dosage? Have they increased it at all?

I know Trigeminal Neuralgia is an awful disease/condition and I wouldn't wish it on my worst enemy! (well, maybe my WORST)

I just wonder if maybe they just need to increase the dose. :confused: I know they usually start with the lowest dosage possible, like with everything else. Ask your doc -- perhaps he can raise the dose, and hopefully that will help you! I pray it does anyway! God bless & let us know, ok? Hugs, Lee

I am new to the forum too. I have recently been diagnosed w idiopathic small fiber neuropathy, but in midst of all of my neuro testing for all over body nerve pain, I had an incredibly painful (most pain of my life by far) attack to left side of my face, in dec 12. It was really focused near my ear, the front of my ear was pulsing, pounding pain, a little in cheek and below and along my jaw line and triggered horrible pain when I even moved my tongue. I couldn't open my mouth at all without screaming pain. I ended up at ER and was diagnosed w trigeminal neuralgia. Like you, I was totally scared and confused, because it doesn't really fit the description. Mine was constant pain for several days, they put me on morphine, and then died out after a week. I had a major gum graft 4 months prior. In meantime, the rest of my body continued to spread w pain, completely out of the blue. We now have small fiber diagnosis, and wonder whether that ear and face pain was somehow related rather than TN. And wonder if that dental procedure somehow caused at least the face and mouth attack. I have had ear exams and thinking of seeing a jaw specialist. I did have tmj issues years ago, did you check for that? Because it can cause ear pain, amd irritate all the nerves around ypur mouth. I now have periodic ringing in my ears. I'm so preoccupied w the larger nerve condition that I haven't really focused on the face and mouth thing, but agree its scary. I do think dental work notoriously can infect the bloodstream and cause big problems that are hard to get rid of. But trigeminal neuralgia can take all forms. I hope it's an irritated reaction to dental work, and that proper pain mgt and infection focus can bring yours to an end, because trigeminal neuralgia is terrible. I have not had an attack in that area since, but live in fear that it will happen again. Mine has stayed quiet, and I'm chalking that issue up to bad reaction to dental work...

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....

I Can Relate
 

I have similar symptoms I would have muscle spasms on both sides of jaw line.The first PCP I went to said it was lymph nodes I said "aren't those under the jaw line/neck area?"Well a month later I ended up at a jaw specialist because I ended up get a lock,dropped left side jaw.Now a year after it locked and dropped all the inflammation is down and I got MRIs and CBTC Scan for hyper muscles in jaw.This all started after a car accident.

Now my jaw M.D is getting a second opinion on my MRIs and scan.I believe we will be doing a splint therapy I wear at night for 8months.I had severe pain in face, ear, pulse in my ears, hurt to do anything active!Only relief was sleep for about 7 months and now I got a muscle relaxer that helps with the muscles spasms, tension, and anxiety.I am also on a soft feed diet off and on for last year.But I do have neurological problems from accident so we might have symptoms like but not for same reasons.It did take some time to get this part of the puzzle together.Wish you the best:hug:

I would suggest if you can to get second even third opinions these days.

Thanks MiaVita.

So, did they say the ear, pulsing face pain and jaw muscle spasms were caused by the accident causing tmj? So, no trigeminal nerve concerns? The pain you describe sounds similar. And I too wear a night guard

My pain is back and it's so odd. Nothing since dec, now flashes of intense pain right behind earlobe, some in front, and seems aggravated by moving jaw. Now wondering which is actually the root problem: jaw problems hurting the ear and face, or nerve problems hurting the ear and jaw...also have ringing in both ears and some side of neck pain. But in dec, per my earlier post, my whole jaw was out of whack after the intense ear, mouth and face pain subsided, and they said the trigeminal nerve pain probably caused my jaw muscles to spasm. They subsided with the pain, and my jaw settled back into place after about a week, during which time I was taking Vicodin for the pain. Am worried its coming back. But also wondering if should see a jaw specialist. I also have small fiber neuropathy, which can impact the mouth but not sure about ear and jaw.
so much about tmj and trigeminal pain sounds similar, it's very tough to figure out

You Said Neck Pain
 

If you said you have some neck pain as well I would get a MRI of neck to see if anything is wrong first.Then I would go to jaw M.D.

I have bulging in neck from C1-C5....well C1 & C2 is facial including jaw.

I tried acupuncture for first time last week and I felt a lot of improvement.I will go every Tuesday for acupuncture.You should give it a try and tell them your TMJ,ears etc and see how that works.
At the moment I am still waiting to get jaw M.D. back to me on his second opinion so I can figure out this situation.

If the TMJ is out of wake or hyper than it will affect the ears etc.

I hope you find some relief and let me know if you have any other questions and I will update you as soon as I find out from jaw M.D.:hug: