My Ear Feels Weird
September 27, 2011 9:43 PM   Subscribe

My odd, chronic jaw & ear symptoms are growing ever more uncomfortable and crazy-making. The specialists I've seen are stumped. I'm hoping the AskMe-verse might have heard of this, or can offer some suggestions, advice, or support.

(Asking for a friend.)

The Symptoms: I've had this problem off and on for years, but it's gotten particularly annoying lately, and I'm going a little nuts. Basically, my left ear (and only the left) feels "clogged" or "full" on a regular basis, like it's filled with water (though it's perfectly clear of wax and fluid in reality). It rarely hurts, but if the feeling lasts a particularly long time in a given day, I do get a dull ache or a headache. I also find that it's difficult to hear when the ear is full, and it's especially annoying to speak, because my own voice echoes. It seems to occur during certain hours of the day--especially when I have an important meeting at work (of course!). It used to happen mainly in the morning, but now has crept more into the afternoon, and lasts for a period of a few hours. It rarely happens at night.

I can make the "full" or "clogged" feeling go away by tugging on my earlobe, massaging/pushing the muscles directly under my left ear (near the top of my jaw) or using my shoulder to rub the muscles under my left ear (by cocking my neck to the left side). Of course, these behaviors look bizarre to a room full of business people who have no idea why I'm twitching like this, and I'm not even sure how to explain what's going on to anyone who might have the balls to ask. In addition, cocking my head to the side all the time has started to take a toll on my neck muscles.

As for what I've tried: I've been to two TMJ specialists, both of whom were pretty unhelpful. One made me a splint, which I've worn almost every single night for nearly three years (and sometimes during the day). I can't tell if it's helping in general, but regardless, my ear is worse than ever now. I definitely clench my teeth at night because I've worn down the splint a lot (I got it replaced a few months ago). Otherwise, I have no other TMJ symptoms.

I've also been to two ENTs, both of whom thought I was crazy. I passed their hearing and pressure tests with no problems; they said my ears look perfect. Some doctors are convinced it's TMJ-related; one thought it might be the result of getting hit in the left ear with a basketball at age 7; and yet another thought it might be some bizarre, unexplainable neurological issue.

I'm willing to considering physical therapy or other alternative forms of medicine, but I don't want to waste my money either. I chew gum during the day because it seems to help in the moment, but I suspect it's actually bad in the long run (assuming this is jaw related).

I'd love to find out if anyone has heard of this problem and whether they've successfully mitigated it in any way. Even just temporary relief (or decreasing the number of hours in the day it occurs) would be a wonderful thing. I'm fairly desperate and really hoping there's some treatment out there for me. Also, if anyone has any suggestions for specific treatment options in the NYC area, that would be fantastic (the previous specialists I visited were all in the SF Bay Area).

Thanks so much for your help!!
posted by granted to Health & Fitness (20 answers total) 4 users marked this as a favorite
Chewing gum is not only one of the worst possible things you can do if you have TMJ, but it's actually one of the leading causes of it. Seriously, google "chewing gum TMJ". (I have diagnosed TMJ and have seen specialists.) I'd stop doing that first and foremost.

I'm going to guess that your TMJ is a lot like mine, which is caused by stress/anxiety, especially if your docs can't find much else wrong with you. What do you think? Either way, it can't hurt to talk to a psychiatrist/therapist (both, probably). Therapy and nightly muscle relaxers have helped me a great deal, but your doctor (PCP or psychiatrist) would know know what's best for you. I am still looking into physical therapy, but I know it's an option for me, so it should hopefully be one for you as well. I feel your pain.
posted by two lights above the sea at 9:57 PM on September 27, 2011

Best answer: Your description reminds me of what I think I have, Patulous Eustachian Tube, the only difference being that my ears feel more like "hollow" than "full". I get the difficulty hearing and speaking though the only way for me to fix it is to sniff in through my nose with every other word which makes people think I'm either always sick or perhaps have a drug problem. Anyway I just thought it might be a useful keyword for your search.
posted by bleep at 10:03 PM on September 27, 2011 [4 favorites]

I get a pretty bad pain, rather than just fullness but the techniques you describe to alleviate it are the same ones I use on my condition. If it's related, I can only suggest giving up coffee and cutting way down on alcohol. It's definitely a stress/tension thing with me. Getting lots of sleep helps me.
posted by bonobothegreat at 10:06 PM on September 27, 2011

Perhaps intra-oral massage might help. It's a recognised modality and requires a masseuse trained in it. Sounds weird but it did wonders me.
posted by the fish at 10:20 PM on September 27, 2011 [1 favorite]

I find it odd that ENTs have not been able to help. This sounds a lot like what happened to me a couple of years ago after I stupidly took a one-hour flight while congested with a cold. My ears plugged up very badly and I could not hear very well for about 24 hours. Eventually my ears popped, but I had intermittent earaches for the next 5 months, and then all of a sudden my voice started to echo strangely in my ears several times a day without warning. Turns out that's what it sounds like when your Eustachian tube is stuck in the open position. Or something like that (can't remember what exactly my doc said).

I commented about it in this thread, but in essence, what worked was taking OTC decongestants (I made sure it was pseudoephedrine; phenylephrine is ineffective for me) and the Flonase (fluticasone) my doc prescribed during allergy season. Now the echoing is gone, and when I feel an earache coming on or I am congested with a cold, I decongest like mad. Anyway, if your friend hasn't done so yet, I really encourage them to try pseudoephedrine. The one time I accidentally bought the stuff with phenylephrine, I might as well have been eating Tic Tacs for all the good it did me. I know you have to go through a bigger song and dance to get the real deal in the US, but I must say the difference in relief is so big it might be worth getting on whatever weird pharmacy watchlist they put you on there.

[on preview: I think bleep's suggestion of patulous Eustachian tube is the thing my doctor told me I had. I think she said I might have narrower Eustachian tubes, especially in one ear, and that made me particularly susceptible to this problem]

Finally, re: the TMJ. I don't know if it contributed directly to the earaches, but it probably didn't help too much. I also clench and grind my teeth while I sleep and so I have one of those sexy dental guards that I have to wear every night. I have chewed through several of them, which is alarming, but even more alarming is the thought of what I'd be doing to my teeth if I weren't doing it to the night guard. I have a custom fitted one and it works the best. I am attempting to become better at reducing stress, but it is a long haul. I advise your friend not to stop wearing the night guard, and to stop chewing gum. It really does do a number on your jaw, as someone mentioned above. Even if it doesn't help the earaches, it's probably helping your friend's teeth not get ground down to tiny little nubs.
posted by hurdy gurdy girl at 10:26 PM on September 27, 2011 [1 favorite]

"it" in final sentence = night guard, not chewing gum
posted by hurdy gurdy girl at 10:37 PM on September 27, 2011

Sorry, I don't find it odd that ENTs can't help, my experiences with that particularly sub-specialty have been that if there's not an obvious surgical solution, they have no fucking idea what to tell me. (No offense, I'm sure there are awesome ENTs out there.)

I have been suffering something remarkably similar for at least six months, and am pretty sure that it's sinus congesting causing blocked/sticky Eustacian tubes. I'm finally fed up enough with this pattern to go to the allergy/asthma practice that helps me manage my sinus issues about it -- I'll let you know what they say.

In the meantime, I find that drinking water seems to help pull me out of a clogged ear attack more quickly.
posted by desuetude at 10:51 PM on September 27, 2011

IANAD. I know what you are feeling and understand your intense irritation. I have had issues with my ears since I was a toddler in that I've had dozens of ear infections. I was always "one ear infection away" from getting tubes put in. In my adult life I've only had a few ear infections, but to replace it with I've had issues with the pressure and clogged feelings, as well as some balance issues.

It really sounds like you have got issues with the Eustachian Tubes. These little passageways are what keeps the pressure inside of your ear balanced. When your ears pop, it's these tubes opening up to balance the pressure.

Recently I had a run of the exact symptoms listed above, and I went to a generalist to have my ears checked out thinking I had another ear infection and get my drops and pills. Instead they said there was no sign of infection, and the doctor suggested I do some Valsalva maneuvers. I wound up teaching myself how to pop my ears rather easily doing this. I've gotten so good at popping my ears that I can do it without plugging my nose and moving some muscle (haven't the slightest clue which one) in my sinuses and can pop either ear on command. Mostly I correct it during weather changes or flights. I've also popped my ears too many times, and got the symptoms bleep described above. Once you've done it too much, you pretty much have to wait or sleep it out, which is that much more annoying to try to sleep when your ears feel clogged.

If the standard medical approach isn't working for you, I do know a friend who went to a massage therapist that claimed to know a move to help clear out the ears. I don't know what is involved in that, whether it works, or had it done to myself.

TL;DR: Valsalva maneuver. Don't do it too much, or you'll get the symptoms back and then have to wait it out.
posted by Mister Fabulous at 11:06 PM on September 27, 2011 [2 favorites]

Ditto the absolute uselessness of ENTs unless you absolutely hound them for ages. The problem is that inner-ear issues are effectively black magic unless you want to spend BIG bucks for a proper analysis. Eustachian tubes are just really hard to get to in a diagnostic manner.

The problem I've had isn't quite the same but it's similar enough that I'll pass along what's helped me. In my case, I occasionally get a "need to pop my ears" feeling, but if I'm talking it comes and goes like every second or two. So [IT SOUND]s like [THIS] when I [TALK IF] you can [IMAG]ine the [STUFF INSIDE] the brac[KETS] to be the [STUFFED UP], muffled sound [WHEN YOUR] ears need [TO BE] popped.

It's difficult to describe how maddening this is without falling into cliche, but let's just say if I had an icepick I would ram it into my head and swish it around like I'm stirring brain.

Anyway, the thing that has helped me more than any other remedy is marijuana. I realize that's probably not the answer you were hoping for, but it's the only thing that consistently works. I've tried everything else, including dozens of different sinus medication (prescribed and over-the-counter), I've tried clearing my sinuses with varying degrees of ridiculousness, multiple visits to utterly ineffectual ENTs… and the only thing that's worked on a consistent basis is weed. If you're not completely averse to the idea you might want to at least give it a try.
posted by Civil_Disobedient at 11:18 PM on September 27, 2011

Best answer: I agree with bleep, this sounds exactly like your Eustachian tube gets "stuck open." IANAD but I do consult with physicians and review peoples' medical records as part of my job, and I recently encountered someone with these symptoms who finally found an ENT at Stanford who could tell her what was going on. The particular case I am thinking of was complicated by palatal myoclonus and was pretty much constant, and severe enough she had to have a couple of procedures done.

I think you can get help for it if you find the right doc, but that might take some doing. I'd suggest seeking out an ENT in a teaching hospital/academic setting.

(If your friend wants the name of the guy at Stanford, memail me and I'll see if I can find it.)
posted by That's Numberwang! at 11:49 PM on September 27, 2011

Response by poster: Small update/clarification from granted (more detailed update tomorrow when my friend's awake): There was supposed to be a line in the question about how she's planning on experimenting with giving up gum, but I somehow accidentally deleted it. Also, That's Numberwang!: she actually moved to NYC from Palo Alto a month ago, so she's just a shade too late for a Stanford rec. Argh! (Ironically, at least one of the useless ENTs was also a Stanford guy. Hopefully not the same one as yours!)
posted by granted at 12:09 AM on September 28, 2011

I posted in this thread. I think the same thing could help.
posted by Not Supplied at 12:21 AM on September 28, 2011

Allergy has been mentioned only sideways... I occasionally have slight manifestations of the symptoms you describe, and since I don't grind my teeth, and have convinced myself that I have no jaw-joint problems, I began suspecting heightened glandular activity around the jaw area. It gets worst for me when I've been whacking away in some dusty building project, but even after a rigorous cleaning pass, I feel that some areas behind my ears get thicker and my ears get more prone to creaking/clogging.

So, my thoughts: perhaps your friend should get herself allergy-tested for a few typical householdy substances, like, you know, dust, various types of mold etc. The explanation might be simple...
posted by Namlit at 4:33 AM on September 28, 2011

At onset, your friend could try the Advil/Sudafed/heated rice bag to the ear combination.
posted by MonkeyToes at 4:47 AM on September 28, 2011 [1 favorite]

i wonder what's going on with her temporal bone (the bone that the ear is lodged in). especially connecting it to getting hit with a basketball in the ear, it's totally possible that the bone is blocked and not moving properly. that bone also directs the jaw. it makes sense that if the splint is INCREASING the pain and headaches, that the problem isn't coming from the jaw but from the temporal bone.
if she's open to alternative approaches, i would recommend seeing a good canadian- or british- trained osteopath or a very experienced cranio-sacral practitioner. there must be a million of them in new york, sorry i can't direct you to one in particular. these therapists will manipulate the bone so that it's moving correctly, solving the problem.

good luck!
posted by andreapandrea at 5:35 AM on September 28, 2011

I am wondering if maybe you've got an undiagnosed parasite or perhaps a tumor that's pressing on your ear cavity area and screwing with things and giving lots of referred pain. Have you considered having bloodwork done?
posted by These Birds of a Feather at 8:17 AM on September 28, 2011

Have you seen a dentist that specializes in craniofacial pain. See this clinic at the Tufts School of Dental Medicine. Perhaps there is a similar clinic in NY, or perhaps they can refer you.
posted by Wordwoman at 9:29 AM on September 28, 2011

Long shot and definitely on the bad side of the spectrum of possible causes, but about 4% of the time multiple sclerosis first manifests as trigeminal neuralgia, of which your described symptoms remind me.

MS is a demyelinating disease and can cause intense shooting pains, dull pains, or lack of sensation and control in body parts. I know of at least one case where the patient was treated repeatedly and unsuccessfully for suspected allergies before MS began to manifest itself more obviously.

The good news is there are effective treatments for trigeminal neuralgia, if that's what's going on: ibuprofen and gabapentin.
posted by infinitewindow at 10:22 AM on September 28, 2011

I have:
-TMJ (complete with custom night guard that doesn't help)
-Ridiculous ear problems that were exacerbated after I burst my eardrum a couple years ago (the muffled sound issue, hearing issues in general, pain and tightness, balance issues)
-Constant allergies

My PCP tentatively diagnosed me with eustachian tube dysfunction.

It's really a pretty tentative diagnosis just yet, but here's what she said: I need to take allergy meds to control the fluid build-up behind my ear (she can see it in my ears, perhaps unlike your friend). She specifically recommended Allegra.

The few days that I have taken the allergy meds, I've really noticed a difference, both in pressure and in pain. My concern is that I have this issue constantly and don't want to be taking allergy meds every day. So, I can only recommend this as a potential stop-gap measure for your friend.

Some of what I've said also happens to jive with what some folks are saying upthread, which is always nice.

So, I'd definitely have your friend read the NLM page on eustachian tube dysfunction and see how many symptoms match (note that one of the things they list as symptom relief is chewing gum! so there's that, though of course bad idea with the TMJ stuff). She could then take that possibility to a doc and say 'this is what I think I have, and at the least, these are the same symptoms that I have. please treat me!' Maybe NYC will do a better job.
posted by librarylis at 7:32 PM on September 28, 2011 [1 favorite]

Response by poster: Thanks so much from both of us for all your helpful answers. After a single read-through, she was able to zero right in on the most likely explanations, which are, in order: a giant tumor, a brain-eating parasite, and patulous eustachian tube. That last one we'd never heard of, but after doing some research, it's almost certainly correct (unless it's a parasite or tumor). PET is correlated with weight loss, and the onset of her symptoms corresponds with a trip to South America three years ago, during which she lost about twenty pounds that she hasn't been able to completely gain back.

A lot of people suggested decongestants to treat blocked eustachian tubes, which sounds like a more common problem. Interestingly, according to our research (i.e. the Wikipedia article), because patulous eustachian tubes are open, not blocked, decongestants would actually make the symptoms worse.

We also appreciated Wikipedia's Yodic little prognosis:
At the beginning, patients hear their own voice “from inside”, amplified and unpleasant. Patients avoid to speak and retire in a rising solitude. They enjoy lying with the head down (it increases venous blood pressure and congestion of the mucosa). With time, appears the respiratory autophonia. At this stage, they hear “from inside” also their respiration. It starts to be unbearable. They may develop a true depression with sometimes suicide feelings. A psychological supervision should be systematic.
That's almost better than a brain tumor!

Seriously, thanks so much. After so many specialists throwing up their hands, it's amazing to have the real possibility of an explanation. Hooray for Dr. AskMe!
posted by granted at 5:56 PM on September 30, 2011 [1 favorite]

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