Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Some of you have been following my struggles with eustachian tube dysfunction (which began in October 2010 and got infinitely worse in December 2010). I thought I would write up a brief synopsis of what I've learned recently.
Earlier this month, I had the great honor to meet and be examined by Dr. Dennis Poe in Boston. Yes, I traveled across the country and stayed for about a week in Boston...not that we don't have great doctors in the Portland, OR area, but because he is one of perhaps two or three people on the planet who are at the top of the field in diagnosing and treating disorders of the e-tubes. And after months of diagnoses, misdiagnoses, and tons of research on my part, I still was not cured of ETD and really was second-guessing my own "self diagnosis" of a muscular problem coupled with inhalant allergies. I needed not only some direction for the future, but a definitive expert to independently back up my own thought processes. I even changed my insurance plan completely AND booked my appt last October so that I could see Dr. Poe! I think it was worth the time, expense, and trouble.
After looking over all my ear ailment-related records, Dr. Poe examined both my ears and my e-tubes (the dreaded scope up the nose, but luckily a painless process with the numbing spray). What is particularly nice is that you can watch the process yourself on a large screen, so I finally got to see my eardrums and the pe tubes, which are still functional and in place after many months. Dr. Poe also pointed out a bit of cotton lint stuck against my ear drum -- oops, I was SO busted for using a cotton swab to clean my ears. He cautioned me that part of the itch-scratch cycle that gets set up in the ears is the direct result of cotton swab use (abuse). The wax in our ears has antimicrobial properties and functions to gently flush out debris. So...no more cotton swabs for me.
Now, the e-tubes themselves...this was interesting. Not only to see them onscreen (interesting for me, though it kind of turned my husband's stomach). But the fact is this: my problem has nothing to do with disease or disorder of my e-tubes. They were neither too open (patulous) nor blocked. I was asked to swallow, yawn, and make a "k" sound, all actions that cause healthy tubes to momentarily open. They functioned fine. I then showed Dr. Poe that I can voluntarily open my tubes by tensing the muscles in my palate. He seemed impressed by the trick and asked if I'd ever thought about scuba diving, since it's a valuable technique for divers. From this point on, when he wanted to see the tubes function, he just asked me to open them voluntarily. He said the right tube is slightly more open, which makes sense to me because that tube always equalizes (pops) first with elevation and pressure changes.
Now...for the root of the problem. It's muscular. We're back to that TMJD diagnosis that I had about a year ago but promptly abandoned because the night guard created for me at that time made my ears feel worse. Why would that be? Dr. Poe believes two things. 1) The night guard was not the correct appliance for me, and 2) I need a day guard/splint because my symptoms progress/worsen throughout the day, most likely due to both stress factors and improper posture (desk work).
I asked him about the myoclonus in my ears (muscles spasms in middle ear). He said that what is happening is that my jaw is imbalanced (this can be easily demonstrated by having me open/close mouth with finger pads placed in ear canals -- way, way off, with the condyle poking up into the left ear canal and a crooked, shifting jaw closure). The imbalanced jaw and the clenching are setting up muscular spasms that are locking up the same muscles that are used for ear function -- tensor tympani, tensor veli palatini, etc. The voluntary ear clearing movements I do when my ears feel "stuffy" also contribute to the problem because they cause the muscles controlling the e-tube to lock up in spasm (when I go into OCD overdrive "clicking" my ears...one or two clicks are okay). Locked open = temporary autophony. Locked close = an unventilated middle ear and a sense of pressure increasing. I have had both things happen.
His recommendation? Find a good neuromuscular dentist who uses conservative approaches (not surgery!) to get the muscles out of spasm and the jaw joints functioning smoothly. Practice whatever techniques I find help relieve the symptoms of stress (meditation, massage, acupuncture, etc). He and I both joked that there is no way to remove actual stress from our lives, but we can develop coping techniques to better handle the inevitable.
Today I went to one of the top TMD clinics in our area. This doctor absolutely mirrored what Dr. Poe said, and his findings were identical. I finally had my jaw joints imaged with CT and...the good news is, there's been no actual joint damage. What there is is the same asymmetry that Dr. Poe found. Left condyle is out of place and interferes with the ear function on that side. All the major chewing muscles are stressed and going in and out of spasm. The mild scoliosis in my neck has worsened so that my head is literally "not on straight." In short, everything is just enough off that it's causing not only intermittent eustachian tube blockage/dysfunction, but a lot of symptoms that feel identical. The nerves employed by the ears and the jaw joints are the same in either case. In fact, in an embryo the ears and the jaw joint is actually the same structure!
The plan is for me is to have two new splints made. One will be for the day and can be worn continuously and is worn on lower teeth like an Invisalign, so it is discrete enough to be worn in public. The other is also worn on the bottom teeth and is worn through the night to help coax my jaw into a less stressed position. This doctor said that ear complaints are the #2 reason people come in to him...(#1 is headache).
What does TMJD and ear involvement typically feel like?
*intermittent ear pain, often very deep in ear and sharp
*a feeling of stuffiness or congestion
*tinnitus/buzzing
*difficulty in clearing ears with elevation changes, like on an airplane or driving through mountains
What are my symptoms? These exact symptoms, with the bonus of myoclonus/middle ear spasms.
Last thing. I'm about six months into my allergy shot therapy and I can say that it DEFINITELY seems to be helping. Instead of having ETD and ear symptoms for hours each day, with fluid building up behind the eardrums every couple of weeks and crazy e-tube itching, I now typically have a couple good days followed by an off day. (When I was in Boston and away from all the foliage and mold that I've become allergic to, I felt almost perfect the entire time!)
I think not having post-nasal drip and a constantly running nose has helped with inflammation of the e-tubes. If I can get the muscle part under control, I might beat this thing or at least reduce it to the point where it's only an occasional inconvenience.
So my take-away is this: ETD is more of a set of symptoms than an actual disease in itself, and the underlying cause is what needs to be addressed to make it really go away once it's become a chronic condition. I wasn't a candidate for the new e-tube dilation surgery because my problem doesn't lie with chronically blocked eustachian tubes, but with external factors affecting a set of healthy tubes' ability to function correctly.
The Following 7 Users Say Thank You to jenni9033 For This Useful Post: CROBINS2 (08-18-2012), mirrasi (04-24-2012), pdxcary (10-17-2012), Speced tchr (07-14-2012), TallestFiddle (11-21-2012), Tfill (04-21-2012), tmj64 (04-20-2012)
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jenni,
So glad to see your post!! I have been looking forward to your report. It sounds like you had a really good visit with the famous Dr. Poe. I hope that you continue to heal and be completely symptom free very soon.
I have read your report with a lot of interest. I have the whole TMJ thing too, but only my left jaw makes the "clunk" sound/ feeling . My regular dentist is who first noted it. More just something he mentioned during a routine exam.
I have had another follow up with my local ENT since my last post. He is now thinking PET as a possibility instead of the tube being shut. I had mentioned to my dr that when I laid down that the pressure seemed to be better and I could do the jaw wiggle trick to get some relief. He didn't ask me about any other symptoms of PET. Did you get relief from your symptoms when you went to bed at night too?
I have progressed to being really, really sick. We are at a loss and growing desperate. The hyperacusis is now at an extreme level. Noise is not only painful, but now is causing horrible nausea and dry heaves. The sound of water running from my kitchen sink is at a 10 plus on the pain scale. Did you or others reading this have terrible sound sensitivity? Sounds really increase the pressure level as well and causes a sharp pain to run up the side of my face. I also have a jump in my tinnitus when this occurs. This component is what has left me nearly disabled by this whole ordeal.
My story took a really ugly turn when I did the vent tube for some reason. Up to that point I was able to after many attempts get my left ear to clear, but not remain clear. The tube was done thankfully in only one ear. From the time the incision was made the pressure changed. My hearing even after the tube was removed has not improved. Now it bothers me to even talk. I can get a squeak sound in that ear and it is just uncomfortable to talk much above a whisper. Up until the tube was done I was still hanging in the game and able to function.
I am not able to eat much. Eating really increases the pressure and it takes a lot of work to get through a meal. Anything remotely crunchy sounds like chewing rocks. I have lost weight, and for the first time ever in almost 45 years of life I can't seem to gain.
The ear popper was not too helpful for me and now I am concerned about using it if indeed this is PET.
Did your ears ever burn? I get this frequently at the end of the day. I am assuming it is from the constant click and pop open attempts.
I appreciate any insight you or others on this board might have to offer.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I spoke too fast. didn't go down far enough. Wow, that is very interesting. I do have jaw pain as well. Thanks so much for sharing...I have never heard anything like this in the past. I will do some more research on this...
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hi LL, I have had burning, crawling, itching, thumping, clicking, dull aching, stabbing, heaviness, and just about every awful sensation you can imagine coming from my e-tubes and middle ear at different times. Right now it is a dull sensation of pressure and pain deep in my right ear and back throat below the TMJ joint. I think that's from too much "clicking" of the tube on that side to try to clear the feeling...now it's in spasm...I was doing a lot of that late yesterday afternoon, and am paying for it today. It's such a fine line, because a few clicks sometimes provides immediate relief, so the tendency is to keep making the motion to an OCD level, which then sends everything into spasm which is actually the underlying condition that started the mess. So I am having to own up to unconsciously making myself worse in my attempts to feel normal...there's a great deal of guilt there.
Eating and talking sometimes cause a quick increase in the feeling of pressure and blocking. I think it's because, for me at least, I'm actually working the masseter muscle (jaw muscle) at that time, and if it's already in a stressed or spasmed mode, I am probably causing more swelling and inflammation. I noticed eating raw baby carrots really bothered me recently.
I don't have true hyperacusis but I do have an overall sensitivity to loud sound, probably because a) certain sounds can trigger my myoclonus/thumping tensor tympani muscle (voices trigger the right ear, scratching my face and touching my hair triggers the left). I also feel much more protective of my ears, and cringe when my kids get loud or I get in a car and the radio is too loud. I've stopped listening to music altogether as it annoys me more than entertains.
I have had a few episodes in recent months that Dr. Poe and I believe are temporary PET. I asked if clicking my ears could cause a muscle spasm strong enough to leave the e-tube temporarily patulous, and he said that it certainly could.
I find lying down relieves all my symptoms except tinnitus attacks. And certain sounds will "kindle" or react with my tinnitus and make it worse. I will say that my tinnitus has been more rare the longer that I've been having weekly allergy shots. Don't know if it's a coincidence or not. But exposures to mold and mustiness used to make my ear start ringing, so if I'm becoming more immune to these allergens, perhaps.
I really wanted to stay in bed this morning as I woke up feeling like I have a cold and with the right ear already feeling pressurized. But getting my kids ready for kindergarten and preschool put me on my feet, so I'm just going on with the day as though it were any other. I'm considering weaning myself off caffeine as Dr. Poe indicated that stimulants like sudafed can cause worse symptoms. Coffee acts as an antidepressant for me in this often overcast climate, so I don't know if I will be able to stand getting rid of it!
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
TMJ, many ENTs will completely overlook the jaw's role in the problem unless you bring it up. It is amazing how many of the structures (nerves, muscles) of the ear and the jaw joint are "shared equipment," so to speak, so the sensations coming from an ear problem and a jaw joint problem can feel 100% identical. Going to the new TMD clinic, for the first time I had actual CT images of the jaw joints showing exactly how they are displaced and asymmetrical. Proof! It impresses me that they are building me custom splints to try to coax the jaw back into a non-stressed position, instead of just making me another worthless hard mouth guard that does very little for me besides protecting my teeth from wear. I have fingers crossed...I have read of people getting rid of all their ear symptoms...
The following user gives a hug of support to jenni9033: Tfill (04-21-2012)
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jenni,
Thanks for your reply. Really relating to what you have said. In your earlier post I cringed about the whole q-tip comment. I am a major "q-tipper". Hop out of the shower, and towel and q-tips are the first thing I grab. Guess I need to break that habit before my visit with Dr. Poe.
The OCD popping of the ears....... Couldn't count the number of times in a day..... It makes perfect sense that would cause the muscles to get contracted and go into a spasm. I do have a popping and thumping sound that randomly occurs deep in the ear. Thankfully not that often at night as it can cause me to about jump out of my skin if it is very loud. On one occasion my husband was actually able to hear it.
The whole idea of PET being a possible diagnosis really had me freaked out. Especially since the only factor that my dr took into consideration was that my pressure was relieved by lying down.
I actually spent a month in Portland in 2004 or 2005. I was struggling with vertigo from Meniere's disease and was a patient of Dr. Epley. I have never seen so much rain in my life. What I did enjoy though was going to the Saturday market. Amazing. My daughter and I enjoyed the food, shopping and the whole cultural differences than here in Tennessee. We went to Mt St, Helen's and got lost driving more times than I can count.
I have already taken myself off of caffeine. Diet Coke was my weapon of choice. I did not know that Sudafed was bad for our symptoms. No telling how many of those I have taken.
Nothing like having little people to get you out of bed and on your way. Hope you are not getting sick.
Thank you again for your reply. It was reassuring.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
This was so helpful and mirrors my symptoms completely ! I have also done tons of research on ETD, TMJ, allergies, and cervical vertigo/imbalance. It is definitely connected. I am convinced that neck spasms and clenching are very much a factor in the way the ET's operate. When my muscles are more relaxed, the tube opens. My problem is on the right.....that ear feels full, has tinnitus, and is often painful. I have been on allergy shots for 20 years and it helps. The ringing/hissing sounds get worse at night when it is quiet.=
I also have had luck with trigger point injections in shoulders. He wants to do the neck but it worries me ! Have to learn ways to reduce stress, but as a teacher , it is hard.
Also have Post Polio Syndrome which doesn't help.
Hang in there....an
d thanks for the great info !
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Can I ask a question? Last Friday I went to see a tmj clinic because I had jaw tension both sides. After scans and tests he said my actual jaw position was 100% perfect better than the average? So my question is I also have ear fullness I can feel as if they are full of liquid. When using netipot afterwards I blow my nose I can feel weird pressure in them? Long story short I also have post nasal drip that seems to go away almost completely with nasonex and popping benadryl allergy meds. So all in all I'm going to see ENT this Friday . I was on amoxicillan 10days but it did nothing for my post nasal drip or irritated throat only benadryl and nasonex help. Then my sire lumpy feeling in throat goes away. What do you think could be wrong? Just bad allergies? Usually I get runny nose itchy eyes etc, but this year none of that just these worse symptoms. I read 2012 was a record breaker for polen allergy. So is it this or ear blockage? In specific eustachian tubes?
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I too have been battling most of the symptoms in many of these posts. I was tested for allergies and was found to have non-allergic rhinitis. Then proceeded to see an ENT where I described my symptoms. He told me it sounded like patulous Eustachian tube and asked if I had lost weight recently. I said that I had and he said that was probably what caused the Eustachian tube to remain in my left ear. He recommended I see an ear specialist so I did. His recommendation was to stay hydrated and use a Premarin nasal spray. I paid $150 for the spray at an apothecary and IT DID NOT WORK AT ALL. By this time (6 months into this h---) I am ready to try acupuncture to see if this will help me but decide to see my chiropractor to see if he can help me. I had him check my jaw and he found that the left side WAS out of alignment. He adjusted me by using the Activator Method which is a small punch used on the jaw joint. I have a trigger point therapy book where it describes how to massage the inside of the mouth near the jaw so I proceeded to do that 3 or 4 times a day. It was very painful but I decided to stay with it. I also massaged my scalp which was suggested in one of the posts here. It has been 6 days now since my chiro appt and I AM TOTALLY SYMPTOM FREE!!!
No more ear stuffiness, autophony and brain fuzziness. I can now feel my tube closing as it should when I swallow and do not have the echoing in my ear that was so annoying. Such a relief after seven months!
That is why the sprays and tubes don't work-it's a muscle and jaw problem!
Hope this helps many of you out there!
Last edited by daisygirl2012; 09-17-2012 at 07:40 PM.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I too have been battling most of the symptoms in many of these posts. I was tested for allergies and was found to have non-allergic rhinitis. Then proceeded to see an ENT where I described my symptoms. He told me it sounded like patulous Eustachian tube and asked if I had lost weight recently. I said that I had and he said that was probably what caused the Eustachian tube to remain in my left ear. He recommended I see an ear specialist so I did. His recommendation was to stay hydrated and use a Premarin nasal spray. I paid $150 for the spray at an apothecary and IT DID NOT WORK AT ALL. By this time (6 months into this h---) I am ready to try acupuncture to see if this will help me but decide to see my chiropractor to see if he can help me. I had him check my jaw and he found that the left side WAS out of alignment. He adjusted me by using the Activator Method which is a small punch used on the jaw joint. I have a trigger point therapy book where it describes how to massage the inside of the mouth near the jaw so I proceeded to do that 3 or 4 times a day. It was very painful but I decided to stay with it. I also massaged my scalp which was suggested in one of the posts here. It has been 6 days now since my chiro appt and I AM TOTALLY SYMPTOM FREE!!!
No more ear stuffiness, autophony and brain fuzziness. I can now feel my tube closing as it should when I swallow and do not have the echoing in my ear that was so annoying. Such a relief after seven months!
That is why the sprays and tubes don't work-it's a muscle and jaw problem!
Hope this helps many of you out there!
Last edited by daisygirl2012; 09-17-2012 at 07:39 PM.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
hi jennifleck - i have these exact same symptoms and have now for over three years. clicking in the ets, and last december my left ear went into a kind of spasm pain i believe from the same muscles effecting the eustachian tubes. and how amazing you live in portland also!
i have been to two tmj specilaist. they both feel it is tmj but have different ideas on how to treat. im wondering how you are doing and who the doc is you went to.
hope you get this and are able to respond. im in so much pain and feeling desperate and hopeless.
cary
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hi Cary and everyone else that has weighed in on the topic. Well, here I am, two years into my tinnitus. And in December, I will reach my 2 year anniversary with ETD itself.
Just had a follow-up with my local ENT-allergist
My hearing remains stable, thankfully, and my middle ear myoclonus has gone into a state of mostly remission (I get the random thump now and again to keep me on my toes). Yesterday's testing showed wildly different canal volumes for each ear, which the doctor found puzzling, especially given that I have bilateral pe tubes, and both are functional.
I still suffer from:
*low, humming tinnitus...sounds like a diesel engine idling in distance...it can disappear to the point where I must strain to hear it, and then again, sometimes it becomes so loud it becomes an actual physical, vibrating sensation that disrupts my ability to sleep; even my HEPA filter won't mask it
*periods of intense itching in each ear canal, sometimes involving the area behind the eardrums and the e-tubes themselves
*periods of time where my e-tubes become so sticky and clicky that pronouncing certain words (especially k/c sounds) causes a pop/crack sound in my throat, very upsetting
*nearly every day as afternoon rolls around, I notice a sense of fullness and tightness deep in the ears, like pressure building
*constant, OCD-like need to clear my ears by tensing the muscles of my palate
and a couple very recent additions:
*neck stiffness (I have a diagnosed reverse curve in my neck)
*times when I feel dizzy/spacey/disoriented/drunk that seem to correspond to an increase in tinnitus...this is triggered especially by pressure/atmospheric changes or sometimes just by normal physical activity
*weather fronts make my T and fullness amp way up -- I dread low barometric pressure to the point where I have considered moving back to California, which would just about bankrupt me
I still think this is an allergy and muscular problem, set into motion by an injury caused by the barotrauma I suffered in Dec 2010.
I think I need my TMJ splints adjusted, as I am now no longer able to wear them without my jaw (which is rarely a source of pain for me) becoming painful. I was kind of discouraged because I spent a great deal of time and money pursuing the TMJD avenue, and I think I have a great doctor, but my symptoms did not improve markedly. I am a light sleeper, and did find it difficult to sleep in the splint, so when I didn't get relief from the ear symptoms despite a few months of compliance, I gave it up, and now it feels uncomfortable in my mouth, so apparently needs further adjustment.
I'm still getting weekly allergy shots. Next month it will be a year since I began, and it will take at least that long to feel any positive results, with more improvement happening as I go. It's a very long haul. This has, by far, been the most challenging, upsetting health issue I've ever faced, and I've had a few. I just keep going back to the flight I took that started it all, and am filled with deep regret that I took it, and anger that this risk is not more fully explained to passengers of commercial airline flights. I was way too young to be damaged in such a profound way as this situation has turned out for me.
I wonder...how did everyone else's problem with ETD begin? Do you remember a specific precipitating incident?
I might throw myself on the mercy of OHSU soon...perhaps they can use me for research or teaching, if nothing else.
Last edited by Administrator; 10-18-2012 at 10:56 PM.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Mine began so long ago, flying with a bad cold to Hawaii......have had right ear ET problems ever since. Live with it. Tinnitus in right ear, ET problems on right....in early years had episodes of vertigo but no hearing loss ever so not considered Meniere's.
Then....had almost fatal car accident in mid-80's....my husband, son and I were hit head-on by a drunk driver. In neck brace for 9 months. We've both had back,neck issues since then . This exacerbated my ear problems as TMJ ws added to the mix due to accident. Have worn splint since then. Can't sleep without it.
I can say, as a 30 year sufferer, that flying can be awful. NEVER fly with a cold. Take Sudafed and Nasonex or other spray before take-off.
Stiff neck makes it all worse as same muscles ( Palatini) that operate ETs impact neck and ears.
Working at a computer with bad neck posture makes it all worse.....as well as, of course, stress !
Take care everyone.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
PS: Also meant to add something about going to higher altitudes......went to Mammoth Mountain with a sinus infection two years ago. BIG mistake.
Ear was stuffy ( always on the right).....going up the Mtn.....pressure built and suddenly a pop and a loud ROAR which was frightening. Mammoth is very high......my ENT had said not to go but , stupidly, ignored his advice and paid a big price. With ETD probs, should never go to high altitudes with colds or sinus inf's. Take heed.
The loud roar lasted for two days ......with pressure and pain.
If you have ETD, all altitude changes are a risk....I do fly, but spend the whole flight yawning, using Vick's under nose, sprays, etc. Constantly try popping during the flight.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
jenni - so im not clear. do yo have a diagnosis of tmj? do you think that is the main sourec of your problems?
can i ask who the tmj doc is you have been to in pdx? the one who gave you the lower mouthguard/appliance to wear. i bet i went to the same one last june. i told him my symptom history and then he told me it was tmj. he fitted me for a lower teeth custom appliance which, like you, i tried for the better part of three months. no notable improvement. i did notice that sometimes by wearing it during the day it would just relax my lower jaw - which sort of helped relax the ET muscles in the moment, and calm my distress. but i did not seem to get much overall improvement. left ear pain became deeper and duller, although sometimes still feels like a knife in the ear.
so i decided to see another tmj specialist 2 weeks ago here in pdx. he told me the first mouthguard was probably making my symptoms worse as it did not allow the back teeth to come together at night and other reasons he could better explain. he advocated a different mouthguard - flat plate appliance for the top teeth to wear at night. he said this would allow the lower jaw to float and find its preferred resting position as opposed to what is currently being set by my bite. then he will grind down and/or build up certain teeth in order to fix the bite, which then is supposed to help the tmj symptoms. i have tried this new appliance now for two weeks and my symptoms have actually gotten worse. the left ear pain is about the same but the spasms (clicking/popping) in my ETs have gone thru the roof. i really feel like im going mad! and i have that exact problem that you talk about with wanting to "flex" or contract the muscles in my soft palette/throat to try and get the ET muscles in spasm to release. but as you said, i think it has the opposite effect of making things even tighter! its a horrible feedback loop that i dont know how to stop and im afraid something else is wrong - like maybe i have some neurological problem or my sympathetic nervous system is off the charts. or maybe its all of the above. its starts from the moment i get up and i notice any tiny thing now will cause the contraction in my ET muscles.
does your doc think these symptoms are from tmj? both the docs i have seen think it is. im so tired of having these appliances in my mouth i dont know what to do. the docs dont seem to agree on how to treat it. and im wondering now if it is even tmj. or why so severe. im actually scared out of my mind and wish i knew others who were experiencing this.
i dont have the allergey symptoms you described.
in answer to your question...my ET symptoms just started one night three years ago when i was living down in the Bay Area. I just remember going to bed one night and all of sudden this clicking noise started in my ears. it hasnt gone away since and i have been thru countless docs and drugs trying to get a diagnosis and relief.
it has been so severe lately i am getting really depressed. it just keeps getting worse and i dont know if these docs really know what is going on or what to do. im just very interested in your case because it sounds so similar, but feeling very discouraged that it sounds like you have not gotten any relief from the ET symptoms. maybe my case is just really severe.
Last edited by Administrator; 10-20-2012 at 11:43 AM.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Dear Jenni, i also live in portland and have been living and sudfering with symptoms like ear and head pressure,crackling or pioping everytime i swallow, sinus pressure and pain,eye pressure, ect ect ect, been deaking wirh it for years bur its been so bad and persisfant lately. Ive been to ent's but they just kinda brush it off as allergies. One told me it is etd. But j need to find out what the heck is goub on cuz this is horrible. Been wanting to find a well known specialist because my kaiser docs dont seem to be helpful. I think i need some serious testing. I could sure use your advise since you also live in portland as do i. I really would consider going to see that doc in boston you went to. I need the best because my issues are chronic and realy affecting my life. Please help lol
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Awesome post, gave me a lot of information and hope for my symptoms. The pain I'm experiencing isn't really described by any other ear problems so I'm hoping its from TMJD. Thanks for going through all this work and sharing your story so we can learn from it!
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Well, it's been over six months. I wish I had better news to report. But, since the couple thousand I spent on TMJD treatment did NOT solve my problem (and I do believe I went to the best available specialists, I'm not knocking them in the LEAST), I'm thinking this is really, in my case, more of an allergy and inflammatory issue largely unrelated to my jaw joints. I think I do have mild TMJD (it's estimated 1/4 of any given population does), and my teeth show minor wear from it. But it's not -- I don't think -- at the root of my ear woes. It might play into the problem somewhat, and it might influence it slightly. But I think it's a minor player instead of the key player, if it's even that.
TMJD, as far as I know, doesn't cause repeat otitis media with effusion. I've had three ear infections within the past six months. I've had about eight or nine ear infections since moving to the Pacific NW from California. The total amount of ear infections I had before moving here? Only one that I can remember. My mother doesn't remember me having a single one as a child.
I'm not saying TMJD might not be your problem, and I don't mean to discourage anyone from giving that a good trial run if you have the time and resources, and if your health specialist feels this could be your issue. Splint therapy has been the answer for many folks. I just am no longer convinced TMJD is MY main problem when it comes to my ears, because if so, I should have been seeing positive results from months of splint therapy. Or at least SOME positive results and some relief. Now my splint feels like it no longer fits my mouth and it actually causes my jaw muscles to ache and cramp when I wear it, so I have a choice to either go have it adjusted again (more $ out of pocket) or to give it a rest. I've been giving it a rest, and I don't seem to feel any worse for it (though also no better).
What happens to me, I've realized, is more like an attack -- I can go hours in a day with no problems, and suddenly, usually towards afternoon or evening, my ears will start blocking up or pressure building in them, they may start itching intensely and feel swollen, and the sound of ringing will flare up and get louder. I'll start "clicking" my ears and moving my jaw, trying to open things up. All the manipulations will make the situation steadily worse, as then the muscles around the e-tubes and in my throat get fatigued and feel swollen. I will tell myself NOT to do the jaw/clicking stuff, to just sit with the feeling of pressure building in my ear or ears and accept it, but inevitably I will end up clicking and moving my jaw around. It's bordering on OCD and very crazy-making.
I'm still on weekly allergy shots, and daily Flonase and Claritin. I've been on the shots about one year, and it takes a long time for them to begin helping. I guess I just haven't managed to get de-sensitized enough to all the local stuff my body has decided it hates (pollen, mold, basically every local grass and plant they tested me for created a reaction). I found an allergy medication called Xyzal that gave more relief, but it also caused me to gain ten pounds in two weeks, so I had to discontinue it and go back to Claritin, which isn't that great of a med.
I've wondered some about food allergies and delayed food allergy reactions, as the timing of the day when I have my ear problems is strange and almost predictable. I am a bad kid and don't usually eat breakfast, just coffee, so the first food I have is usually at lunchtime, and the timing of my symptoms is a flare or attack that happens AFTER this meal and/or AFTER dinner. I had some food allergies as a child that seemed to fade out as I became an adult, so I do have a history of reactions to food...perhaps there is something I'm eating, something simple and common, like wheat or soy, that is triggering a middle ear/e-tube reaction. From what I've read, your middle ears and e-tubes can be the site where you experience your allergic reactions, just like any other mucous membrane. I can get tested for food allergy at my allergist's, but they want me to keep a two week food diary, so I keep putting it off...I'm not good at writing stuff down. My son is mildly allergic to wheat and peanut and VERY allergic to eggs, and it's said that food allergy often runs in a family. Apparently food allergy can play into recurrent ear infections in children. Is there a reason why an adult would be immune to this?
I guess, after nearly two years, I'm not ready to give up fighting this problem. It's not a deadly condition, of that I'm thankful, but it's chronic and it's extremely draining and tiresome to have. It's also an illness that's invisible to others, so others can't understand what you're going through. I've had to back out of social events when I feel really symptomatic, and sometimes I just want to stay home under the covers and avoid any situation that might cause a flare. My motivation is often very low. As anyone who suffers from this knows, though, it steals your sense of well-being and can consume almost your every thought. Your ears are literally part of your head and connected to your brain, so when they are out of whack, there's just no good way to tune it out. My thoughts are with you all tonight, and I do hope some of you will find the key insight you need from something I may have written on this journey. We were all once well and healthy, and I do believe each of us has a way to get back to that state, since the body always wants to heal itself.
I'm waiting on a referral to our big teaching hospital here. I've had good luck with them before with a previous unrelated health issue, since they basically take you and figure out a game plan and have all the specialists there to attack the problem from multiple disciplines and angles. They also have a tinnitus clinic that is world-renowned. I will let everyone know what I find out. Hopefully something new and useful, or maybe even the key to my own cure.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
NP, ultimately my family decided what was best for us was to change to a different health plan altogether so I could have more options. Kaiser was too limiting in what would be approved, although they were excellent in every respect previous to my developing the ear problems.
I have been meeting more and more people locally who are suffering from ear issues. It's crazy! I also have read that allergies are getting worse across the world with each passing year. I'm not sure why that would be...it's got to be something environmental, though.
