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jenni9033 · 11-21-2012, 11:30 PM

PDX, hope you are feeling better. To answer your question, I don't think my problem is rooted in TMJD. TMJD might influence the problem or make it worse, and there are definitely some muscular issues involved. But I feel like mine is more like an allergic attack...I can be fine for hours at a time, and then I start to notice pressure or sensations in one or both ears, and it comes on. I rarely wake up feeling bad...it happens, but it is rare.

I wanted to think the splint therapy could fix it...on an intellectual level, I can see where it could lead to problems like ours. But splint therapy didn't work for me, and I did go to our big TMJD specialist, had the custom bottom teeth mouthguard made, wore that diligently, try to be mindful about clenching.

Right now I've got another ear infection, third of the year. Does TMJD cause ear infections? I just can't find a strong bit of evidence that it does. And it's definitely an ear infection, not just phantom TMJD ear pain referred to the ear that "feels like" an infection, because I have an artificial tube in each eardrum that allows fluid in my middle ear to actually leave the ear when it's infected. Super gross, but it helps confirm the diagnosis of fluid in the ear.

NP1 · 11-23-2012, 01:45 PM

Thanks for the reply! So with your Knowledge can you recommend me the best ent that you know of or have heard about. I would so trvel tosee world renowed ent that has sesn cases like ours before. As im writing you both my ears are ringing and dull ear ache feeling snd major pooping in both ears everytime i swallow, i too am alwaays opening snd moving asround my jaw i ghink to try to open up tubes especially on left side, uve been wondering why ive been doun this the laast feww yeaars. Have you also had any eye issues that you feel are from sinus pressur or inflaamation?

jenni9033 · 11-23-2012, 02:56 PM

Hi NP,

Sorry to hear you are going through this. It is such a tough health problem to have.

I flew out this spring to see Dr. Dennis Poe in Boston. He is considered the top ENT when it comes to eustachian tube issues. In fact, he has developed very precise surgeries that treat the tubes themselves. I only wish he were closer to us out here. One thing that happened with me is that in Boston, about a day before my appointment, my ears cleared up and I was nearly free of symptoms when he evaluated me. I wanted him to see me when my tubes were really acting up. It was bad luck...or maybe, just maybe the allergies that affect me here aren't an issue in that region of the country. I flew back home and my ears promptly reverted back to the same problems...I developed two ear infections just in the first month after I came home. And the ringing started up within about fifteen minutes on the ground.

On the west coast in general, I hear good things about Dr. Brian Weeks in San Diego, the House Ear Clinic in LA, and Dr. Douglas Hoffman in Bakersfield, CA. I have not seen any of these ENTs personally.

Locally I would say OHSU would be a good bet. They have the big tinnitus clinic, neurootologists, etc. That is where I'm trying next.

PS I did not have eye issues in the early days of this, but lately I get random swelling in either or both eyes, and muscle twitches in the eyes. Some blurriness, too. I figured it was an allergy thing. I know so many people locally that are having sinus problems, eye and ear problems.

JazG · 11-25-2012, 10:08 PM

Thank you so much for posting about this problem. I have been experiencing the fullness in my left ear, fluid leaking out of my ear in the morning, and hearing loss. I've gone to the doctor a few times, ENT, chiropractor, massage therapist, and acupuncturist. What i really need to do is stick with one for a while. I started experiencing these symptoms/problems after a severe neck spasm due to falling asleep while nursing (7 months ago). My ENT did slice my ear drum and I could hear wonderfully for 1 week until my ear drum healed and filled back up with fluid. He suggests getting tubes but I don't feel like that's a fix. Now I am experiencing my first ever ear infection after my last cold.

I just really wanted to thank you for sharing your story and the ways that you have tried to help your problem. It helps me to keep going and chasing after a solution. I can't keep living like this. My husband, my kids and I have had enough! I will be sticking with acupuncture and doing a little chiropractor and massage therapy. My acupuncturist does NAET which is a Chinese therapy to treat allergies. Each session will erase one allergy at a time. I have always had a skin sensitivity and it seems like my body has been going crazy with random allergies the past few years (moisture strip on a razor, soy protein, perfume, lotion, dust, blah blah blah...long list of oddities). She tested me and I have TONS of allergies. It was very interesting and made a lot of sense of how we experience trauma leads to blockages in our bodys natural defense system.

I hope you find a solution. Our stories sound very similar. I can't believe how many of us there are! Please continue to update us.

Dpearson56 · 11-30-2012, 02:21 AM

Hi Jenn,

I also have problems with ears always told fluid in ear, have EST as well, that cause pain, test in ENT office always states problem with ear tubes (EST). I also feel like something is moving in my ear when they tell me fluid is in there, do you ever have that sensation? I was told in could be the ear tube opening and closing but it just feels like something is moving around. I always thought it was wax but never the case. I do have a history of grinding my teeth and I do wear a night guard made many many years ago from my dentist, which was made because I was having facial pain and was told it was grinding teeth. We're you always told you had EST and now finding out it is muscle related.

Any information you can give me on your case is appreciated. Have a ENT appt on Monday and wanted to talk to him about this.

Thanks so much,

Debbie

BarbsEsq · 12-05-2012, 05:40 PM

Jennifleck,
I am thrilled to find this thread and even more so that it is recent/current! My problem is ear spasms and a feeling of fullness in my left ear. Feels like tingling, I analogize it to getting stim on my neck for PT when i feels like little tiny pins and needles and it goes on and off in a cycle. Neurologist I saw this week suggested (1) make appt with a TMJ specialist and (2) get a brain MRI to consider trigeminal nerve issues. I am very claustrophic and have panic attacks so that is something I am quite scared to do right now. I have pain in the bottom corner of my left jaw and also in front of and in back of the left ear but not terrible. Worse with palpitation.

Anyway, the reason I am addressing you is that you posted something that I have not read in any other posts. Flying and barotrauma. Now my ear issues started just this year BUT I did have a sinus barotrauma incident while flying back in 2007. You are the first person I have seen that has mentioned having had this horrible experience as well. Can you tell me more about the incident?

Thanks so much!

jenni9033 · 12-09-2012, 11:23 PM

Quote:

Originally Posted by Dpearson56

Hi Jenn,

I also have problems with ears always told fluid in ear, have EST as well, that cause pain, test in ENT office always states problem with ear tubes (EST). I also feel like something is moving in my ear when they tell me fluid is in there, do you ever have that sensation? I was told in could be the ear tube opening and closing but it just feels like something is moving around. I always thought it was wax but never the case. I do have a history of grinding my teeth and I do wear a night guard made many many years ago from my dentist, which was made because I was having facial pain and was told it was grinding teeth. We're you always told you had EST and now finding out it is muscle related.

Any information you can give me on your case is appreciated. Have a ENT appt on Monday and wanted to talk to him about this.

Thanks so much,

Debbie

Hi Debbie,

I have had all kinds of sensations in my ears, including the tickling, moving sensation. I think even tiny bits of fluid can cause BIG problems, and unfortunately, it can take months for fluid to completely dry up. I think having pe tubes in my ears (the surgery like little kids often get) helps my ears to dry out more quickly after infections. I just got over an ear infection, and it took one week to lose the fluid whereas before it took many weeks to shake all the creepy-crawly feelings. Some adults have reported bad results with the pe tubes, but they have been a godsend for me.

As I have said in later posts, I have come to believe my problem with ETD is really much more of an allergy-induced issue. For whatever reason, my allergies cause ear issues to flare up and cause my e-tubes to swell and not open properly and aerate the middle ears, which is why I keep getting middle ear infections. I think I do have mild TMJD, but it's not really so much of a factor in this chronic ear condition as was believed. I went through expensive months of splint therapy, and my ears were exactly the same afterwards, unfortunately. So...I'm not blaming any of the doctors who treated me, but just stating my results. I know some have good luck with the splints, but it did not work out for me. What has helped much more was aggressive work on controlling my allergies. It's not perfect, but it's better than I was when this all began in Dec 2010 (yes, it'll be two years on the 18th!).

jenni9033 · 12-09-2012, 11:37 PM

Quote:

Originally Posted by BarbsEsq

Jennifleck,
I am thrilled to find this thread and even more so that it is recent/current! My problem is ear spasms and a feeling of fullness in my left ear. Feels like tingling, I analogize it to getting stim on my neck for PT when i feels like little tiny pins and needles and it goes on and off in a cycle. Neurologist I saw this week suggested (1) make appt with a TMJ specialist and (2) get a brain MRI to consider trigeminal nerve issues. I am very claustrophic and have panic attacks so that is something I am quite scared to do right now. I have pain in the bottom corner of my left jaw and also in front of and in back of the left ear but not terrible. Worse with palpitation.

Anyway, the reason I am addressing you is that you posted something that I have not read in any other posts. Flying and barotrauma. Now my ear issues started just this year BUT I did have a sinus barotrauma incident while flying back in 2007. You are the first person I have seen that has mentioned having had this horrible experience as well. Can you tell me more about the incident?

Thanks so much!

Hi Barb,

I do believe my problem was either kickstarted or completely created by a flight I took Dec 18th of 2010. I fly twice in a day (to my father-in-law's funeral service and back), and I was fighting a cold AND congested from crying at the funeral. When I landed, my ears blocked painfully and remained that way for 48 days. Meantime I developed a middle ear infection on both sides. I finally used Afrin and got my tubes back open enough to unblock my ears, but the relief I felt turned out to be temporary. I have had on and off problems ever since this flight...I have probably only had about 14 or 15 "normal" days out of nearly two years. The symptoms are otherwise nearly always either with me to some extent, or about to return.

In short, it sucks, and I am incredibly angry that we are not fully informed, as consumers, about the risks of flying with a cold and/or sinus congestion. I have done a lot of online reading, and there are many stories much like mine to be found out there. As a matter of fact, a person I know through business dealings locally has the exact same ear problem, which started with a flight!

Since all this happened, I have become a tireless mouthpiece warning everyone I know who flies regularly to never fly with blocked ears or sinus congestion, at least not without following the "flying with eustachian tube dysfunction protocol." I probably sound like a dork, but who cares -- I might save someone months or years of suffering.

I myself have had three surgeries in total to install pressure equalization tubes in my eardrums so I can fly without risk of further damage. I have to fly for my work several times a year, so simply avoiding flying was not really an option. The pe tubes are temporary and bear their own risks, and I'm not sure it's something I can continue to have done every couple of years, which is about the lifespan of each tube, so...hopefully I find a complete cure for this problem soon. I'm always researching!

JohninMemphis · 12-17-2012, 01:50 PM

Hi everyone, I've read a lot of messages on this site so I thought I would register and post.

My story started in 2000 when I had mono. My ears got clogged and never unclogged. I was miserable for two years. Saw countless ENTs and allergists. Nothing worked. Finally in 2002 an ENT put tubes in my ear. It worked well enough for me to live normally and not think about it. In 2007 a tube in one year got infected and they took it out. My ear felt ok and I went on another 5 years with no major problems.

About three weeks ago I got the flu. A nurse practitioner looked in my ear and said I had a massive ear wax blockage and advised me to use Debrox. Well this was a bad idea. When I put the medicine it became clear I had a tube still in that ear. My ear instantly clogged up. I finally went to an ENT who said I had a bad ear infection and gave me Ciprodex. I went back a week later and the infection was gone. My ear was still clogged though, and now my other ear was clogged as well.

Out of frustration I made an appointment with another ENT. He said there was no tube in my ear that I put the debrox in, but a permanent hole. He also said I have patulous eustachian tube dysfunction and everything I had been doing to treat the problem was making it worse. He gave me premarin spray for my nose and I've had no relief from it. My ears are congested as ever. But now I have a stuffed up nose to go along with it from the spray.

I go back on December 28th to discuss the next course of action. This is all so frustrating.

msmwade · 02-13-2013, 05:51 AM

Thank you, Jenniflek. Your symptoms are so close to mine and it has actually been a great comfort to me to read your posts. I posted for the first time about my issues, which include diplacusis (double hearing), which is absolutely driving me crazy as I am a musician and hear different notes in different ears. I also have been diagnosed with TMJD, but no doctor has said it was a contributing issues at this point. I have had an MRI and a CAT scan, the latter which I find out about on the 26th.

You description of your tinnitus (diesel idling) actually brought tears to my eyes, as that is what I hear as well, which is maddening. You are the only person who has described it exactly the way I described it to the doctor. I hope to hear from you and how you are doing. You've been a Godsend to me. Thanks again.

digby1 · 02-28-2013, 02:04 AM

Thank you so much Jennifleck for sharing your ETD problems with us. I live in London so see all over the world people can suffer from this problem. I have had blocked ears and Tinnitus now for more than a year! It all started 2-3 years ago with a mild clicking sound in my left ear. Every now and then i would go to the doctor and suggest I had a cold in the head as my hearing was intermittently muffled. Eventually I went to a ENT consultant but it really didn't get me far. He told me to take nose drops (Fliconaise) and be patient and it would go. It was probably an allergy thing. At first after a few months it went. But the next time, it just refused to budge - nose drops or not. He then referred me to an allergy consultant who has helped to a small extent and believes the issues is related to yeast intolerance. Strangely enough when I am down with the symptoms and the noise in my ear is unbearable like washing machines going off continuously, i end up eating chocholate and sweets and drinking wine to alleviate the symtoms but i think they just make it worse. Apparantly all these foods are bad for yeast intolerance as they build up sugar in the body which the yeast feeds on! Amazing enough when my symtoms are worse in my ear - i have atheletes foot symptoms which again is related. Anyway, ENT specialist has been really useless and normally sends me away telling me it is a temporary problem but this has now been going on for two long. Jennyfleck's posting is interesting as my jaw also clicks and I think my posture doing screen work tenses the muscles and affects it too. it seems that there are a number of triggers which all us sufferers have which combine together and then 'hey presto' the whole things takes off. Over the last few months i have been visiting an osteopath who is very good. She is convinced she can sort out the problems and can see my posture has been very poor. When i first saw her my head was out of line almost with my body and she has now corrected that. I just have to pray this things goes because as you all know, it takes over. i end up googling it at least once a day and boring my family with my symtoms. Yesterday had the most depressing day. I usually only suffer from problem in one ear but a few days ago it took over my good ear. i could feel tenseness in my neck and shoulders and a feeling of presssure in my ears - then i could no longer hear anything properly and people talking sounded like metallic sounds!! It was so scary. I went to a lecture and could not hear the person speaking at all and had to walk out. By the end of the day, it began to clear so i was relieved. today I visit my osteopath and hope they will help me.

msmwade · 02-28-2013, 03:57 AM

Digby, I have the same symptoms as you do. I also have bad posture, tight muscles, terrible tinnitus and strange hearing. I am sorry you are going through this. It's no fun. I have been "diagnosed" with cochlear hydrops after having an MRI and CAT scan, all normal. What I've learned is that the medical profession has no idea what to do with the ear and cannot solve these problems. I have an appointment with another ENT about two hours away in two weeks, but I really have no hope at this point. Cochlear hydrops is said to be a form of Meniere's disease. I'm not sure I have either, but will do the best I can to alleviate these terrible symptoms. I am a classical pianist, and can no longer stand to be in the same room as a piano because my hearing is so distorted. There is a Meniere's support group online, and I am looking into their therapies in the hopes it will help. Thanks for typing all of that out. I totally understand what you are going through.

jirwintmj · 03-08-2013, 08:38 AM

Hi Jennifleck,

I have read through literally hundreds of these kinds of postings on the Internet and have never found anyone's story as uniquely close to mine. This is the first board I have registered with to get answers.

I, too, have seen Dr. Poe, and I believed that I had a case of ETD.

My story began with throat surgery in December 2011 and I suffered a traumatic TMD injury when my jaw was hyperextended during surgery. However, the problems were so localized to the ear that I was convinced the root of the problem was the eustachian tube. I saw many ENTs and then Dr. Poe. Fast forward to today and I am left with the very same symptoms, only this time all signs point toward the jaw and its pressing on the tube, along with various other issues (you are well acquainted with I'm sure) that go along with TMD. However, the BIGGEST issue to me has always been the ET.

I wondered if, with all your experience, you might be able to help me with a few questions? I'm not sure how this all works...

thanks!
J.

jenni9033 · 03-08-2013, 10:30 AM

Hi J. I'm glad you got to see Dr. Poe. You are lucky to live close enough to consult with him easily.

I'm happy to answer any questions you might have to the best of my ability. I do not have a health professional's clinical expertise, but I'm intimately acquainted with the problem from the point of view of someone who actually suffers with it.

Hope you're having a "good ear day."

Mandolyn · 03-08-2013, 06:38 PM

Quote:

Originally Posted by daisygirl2012

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!

Daisygirl-- I am seeing a chiropractor right now for my low back. I told him last time I saw him I was having all kinds of crazy things going on with my left ear and tongue and throat and sinus pressure, thinking I had severe allergies. I've been on Zyrtec D and prednisone. NOTHING helps. I know it's TMJ related as I wear a mouth guard at night and clench a lot. I sleep on my right side too which I don't know if that makes the left worse? My right ear has no problems or my right jaw. When I put my fingers up to where my jaw meets my ear and I open my jaw, I can tell my left side is lower than my right. I wonder if my Chiropractor would or even could help fix this. I will ask him. I have a feeling he will say no as he will be afraid it may worsen things without an x ray. But I'm glad you mentioned this.

ShayWentz · 03-17-2013, 11:55 AM

Hi Jennifleck!

I was just wondering how you are doing these days?? I came across this post recently during my own (endless) search for my constant right ear pressure issue. I've spent HOURS researching online (after my doctor basically told me to "deal with it"), and really enjoyed reading your posts as I could identify with you so much! I know they were written a couple years ago, but I would love to hear an update. I hope you are doing well after your visit to Dr. Poe, TMJ doctor, etc. I too have been looking into the Balloon Dilation procedure. I am 30, I live in Canada (Vancouver), my ear pressure/unable to pop right ear (tried everything) has been going on for 2 years, no idea how it started (never had ear issues) and am having trouble finding a doctor in Canada that performs this procedure. I would love an update ... and to anyone else reading this I would love to learn more about Balloon Dilation if anybody has any advice!

THANKS IN ADVANCE!!!!!!

JenPlus2 · 03-19-2013, 06:51 AM

Hi Shay-
I hadn't come on here in awhile because its truly hard to come back and say you thought you were better but you ended up not being so. I have done the balloon dilation and while it did help me so that I could pop my ears (valsalva), I still have had reoccurrences of ear pressure that is upsetting and mystifying to my current drs. I've done pressure testing and now nothing shows as wrong! My ent who did my dilation suggested that I have tmj disorder but I felt it was an excuse for not finding a right answer. I have chronic allergies too for which I receive weekly injections. The last flare up of ear pressure lasted 2 months or so and I recovered. This episode has been hanging on a bit longer. I'm not sure that the dilation is always the answer, BUT I have been where you are at my wits end, and willing to do whatever. I probably am in that place right now actually. It's been a couple months and I'm done, my husband is done, my kids are done....it's a never ending battle. I'm sorry I can't say that balloon dilation is the magic answer- I wish I could because then I wouldn't be back here, searching for answers like you. Do you have allergies? I take a xyzal (stronger version of Zyrtec) everyday, and try to do neilmed sinus rinses as well. I also take klonopin for the horrible anxiety this has caused me. I am going to be checked out for tmj, as I do have jaw spasms that have become very noticeable, but I don't know about tmjd. It's certainly nice to talk to you all on here especially when you're struggling. It makes it easier to get through the day.

jenni9033 · 03-19-2013, 02:52 PM

Quote:

Originally Posted by ShayWentz

Hi Jennifleck!

I was just wondering how you are doing these days?? I came across this post recently during my own (endless) search for my constant right ear pressure issue. I've spent HOURS researching online (after my doctor basically told me to "deal with it"), and really enjoyed reading your posts as I could identify with you so much! I know they were written a couple years ago, but I would love to hear an update. I hope you are doing well after your visit to Dr. Poe, TMJ doctor, etc. I too have been looking into the Balloon Dilation procedure. I am 30, I live in Canada (Vancouver), my ear pressure/unable to pop right ear (tried everything) has been going on for 2 years, no idea how it started (never had ear issues) and am having trouble finding a doctor in Canada that performs this procedure. I would love an update ... and to anyone else reading this I would love to learn more about Balloon Dilation if anybody has any advice!

THANKS IN ADVANCE!!!!!!

Hi Shay (and others who have written asking how I'm doing),

Unfortunately last April's TMJD diagnosis I talked about at the beginning of this thread did not prove to lead directly to the cure for my e-tube issues. I worked with a neuromuscular dentist locally who is very well-regarded, and while he worked on my jaw for about 3-4 months, in the end I didn't feel much different, ear-wise, than before. And the custom splint I was supposed to wear at night ended up ultimately to actually CAUSE jaw pain, something I had never had before. So I was getting jaw pain in addition to the ear woes. I guess I could have gone back in and booked another appointment and had the splint adjusted again, but after months of expensive treatment, poor sleep and no results, I opted to give up that line of pursuit.

I do think I have jaw imbalance and clenching, as it's a very common thing to have, but I don't really think in my case it's the underlying cause of my ear problems. If it were, I wouldn't be getting these multiple ear infections, would I?

So now I'm basically left with the belief that my issues stem from my multiple inhalant allergies. I moved to the Pacific Northwest from California back in early 2005, and while it didn't happen overnight, over the next 7 or so years I slowly became allergic to all the plants, grasses, trees, weeds, and molds that make this the area so beautiful and green.

I've read countless articles in the medical literature about ETD, and it seems like long-standing cases of it almost always have either ALLERGY or SILENT REFLUX listed as causes. Even articles by Poe about the various surgeries he pioneered that treat the e-tube directly indicate that any underlying allergic disease or reflux must be treated aggressively and controlled.

Battling allergies to invisible things in the air all around me is a huge challenge. Avoidance is the best policy, but for that, I'd need to live in a bubble. So I'm on allergy shots and have been on them weekly for over a year. It's slow going. I'm supposed to get re-tested next month and a new protocol rolled out, where they ramp up my dosage more quickly, basically taking me as high up as I can go without sparking a full-blown allergic reaction. This is supposed to gain me results more quickly. Kind of scary, but I'm in.

I just got over another double ear infection, so part of what may be playing into my problem is that as soon as my ears/e-tubes start to recover, I get hit by another upper respiratory tract infection leading to an ear infection, which temporarily alters the tube mucosa (according to the medical literature)...I read it can take months to recover to normal. This could even be a long-standing chain of stress-and-recover.

It's all very frustrating...I have long daily spells of "clear time," but it seems I can't entirely shake this ear problem that seemingly came out of nowhere back in December 2010. I try to take it day by day, realizing that it's not fatal and I do have some time almost every day when I feel normal, which is more than some folks get. And at the moment, my tinnitus is much improved, and the ear spasms/myoclonus are much, much better.

I may also pursue investigation into silent reflux (LPR), as I have some of the symptoms from time to time (cough, unexplained sore throat). Just to make sure no stone goes unturned.

Maybe in another year I'll have even more improvement to report?

JenPlus2 · 03-19-2013, 03:12 PM

Jenni-
Hi! We spoke alot last year on another thread when several of us were going through this miserable ETD. I'm glad to hear you've been improving and having greater periods daily of normalcy. I went ahead and had Eustachian tube dilation last year and it was successful to an extent- I can now pop my ears so they aren't blocked per se. I am doing allergy shots and taking xyzal which is a new allergy med for me and with my symptoms, it seems I have a few months symptom free and a few months back to symptomatic. Right now I'm going on 2.5 months of symptoms. It seemed to be going away and then I caught my kindergartener daughter's cold and its back full force. Except I can pop my ears now. It's very frustrating, not fatal, but frustrating. I've even seen a neurologist at my PCP's recommendation because I started to have numbness and tingling in my cheek on the mainly affected side. I started to get very painful jaw muscle spasms, but I don't think they're necessarily the cause of this. The neurologist thinks tmj but I'm not so sure. Thankfully I have nothing wrong with my inner ear or brain, and don't have trigeminal neuralgia. I'm on a burst of prednisone right now because I literally can't breathe and have a terrible cough, all due to this virus. I'm trying to keep up hope that I can get through this, and I've heard your story before and it's very inspiring to me that you can keep going in the face of this mess. I hope you don't mind me posting on your thread, it's been awhile since I've talked to you so I wanted to say hi. I wish I had more of the pieces of this puzzle figured out for me, I guess I'll just have to keep on knocking on doors till I get an answer. I probably would also do well to keep my anxiety disorder in better check too as it rears its ugly head when I'm in 'crisis mode'. Hope you're having a good day.

earmom · 03-20-2013, 08:38 AM

I am not sure what the balloon dialation procedure was, but my son has Pm and eustachian tube dysfunction. We just did FCR, functional cranial release, which does include an endo=nasal balloon insertion multiple times over a period of 4 days. My son's pressure is gone and his clicks are infrequent ( only when he swallows, yawns and sneezes). It might be worth a try...it is not a cure for PM but it is the best thing we have tried to date with results we have not seen anywhere else. And we have tried everything.

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