Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hi again,
Question for you all on here - are both of your ears affected or just one? Also, how long have you guys been having eustachian tube dysfunction issues for? I am at about 2 1/2 years now ....
I love reading everyone's posts on here ... even though I wish none of you had to deal with this, I feel so much comfort knowing that I can talk to people that understand. I am heading to an ENT at the end of May in Vancouver and I have like a full on typed report of information I've gathered to bring it! I want to nail down the cause ... any advice is always welcome. I don't want to waste my appointment as it's taken SO long for me to actually get one.
I hope we all get this figured out soon.
Shay
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hi Shay-
I've had issues since last year. I have no idea exactly what's going on right now though. I can pop my ears now after the dilation surgery and my ear pressures keep coming back normal. I'm thinking that my e tubes are intermittently dysfunctioning due to allergies and/or tmj dysfunction. I'm leaning towards allergies. I have been doing allergy shots and taking Zyrtec and doing saline rinses faithfully. I don't know what else I can really do.
Definitely post back here, it helps to talk to people in similar situations for sure.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Shay- I was JUST LIKE you!! I had no other symptoms of TMJD. Just left ear congestion/pain off and on but always a crackling noise when I swallowed, or when I did any exercising with jumping a clicking in that ear, like something was in it bouncing around. Three doctors checked my ears and said they were fine and told me to take Zyrtec D. So I did and it relieved some of the pressure. Then one day my tongue began feeling strange- burning/tingling sensation so I kept opening my mouth wide to look at it, for 3 days I did this and on the 4th day I was brushing my teeth and felt my left jaw joint by my ear lock. It was horrible! PAINFUL! Since then I am still dealing with tightness and pain and having to take ibuprofen every day. My ear feels worse too. So my dentist made me a custom mouth guard. We'll see if that fixes things as he said it would, when sleeping at night. My alignment is totally off, and my bite.
So the question is, do you grind or clench your teeth at night? If you do then this could possibly still be TMJD and you just don't have the other symptoms like I didn't have. It was so much nicer just having the ear pain!
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jenplus-- ME TOO. Left ear and the right ear occasionally feels full but nothing like my left ear. My left ear always feels infected. Do you notice it gets worse as the day goes on? That is how it is for me. And that weird clicking in my ear when I workout-- only when I am doing any type of hopping cardio, it's like something is in my ear bouncing around.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Mandolyn-
I don't know what's wrong with me to be honest. I have confirmed allergies and probably tmj disorder. I had problems with my Eustachian tubes last year till I had Eustachian tube dilation done in June. Then the symptoms went away for 2 months and reappeared for no reason in September. I could at that point easily pop both my ears but felt no pressure relief (its always mainly the left). Then my ent said it was time to get on allergy shots and I did in late October, and my symptoms of ear pressure gradually faded. I thought it was the shots helping but then I found out allergy shots don't begin to help until at least 6-12 months. So I'm not sure why the symptoms faded, it wasn't the first frost because I have both indoor and outdoor allergies. Then one day in January I was eating my morning cereal and when I bit down on a bite of it, something weird happened in my cheek, like a pulling or a tugging, I can't remember. I started feeling that ear pressure sensation creep up on me then, and it was fully back by the next morning. After making the ent rounds again and being told my ears were fine,I saw a neurologist for the increasing facial pain and she ordered an MRI of my tmjs and inner ears/brain. Everything came out ok except for a slight misalignment of my jaw upon opening. She recommended I see a tmj specialist. I saw 2 tmj 'specialists' recently who couldn't even read my tmj MRI which was kinda scary- I mean, a neurosurgeon can read an MRI of the brain right??? Feeling crazy, I paid out of pocket for another hearing test/tympanogram because I wasn't convinced about tmj. Those tests came back normal. I'm so so confused and frustrated. Meanwhile these ear symptoms are driving me crazy! I'm not sure what's going on. I feel that if it was allergies, it would be at least somewhat cleared by my daily Zyrtec and saline rinsing. There's no improvement at all though. I know I have allergies, but are they really the cause of the ear thing? I don't know. I'm not sure I want to pay $850 for a bite splint either. Right now I'm kinda hoping it passes like it did before.
I hope you can get some relief from your symptoms soon. I know all too well the misery of ear problems and chronic pain.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen- WOW! You saw pretty much everyone! I wonder if a chiropractor could diagnose you. LOL, just kidding. I can't believe those TMJ specialists didn't know what to make of your MRI. I would love an MRI of my jaw. But I can't afford it. I have always worn OTC mouth guards and my dentist said a harder plate is what I need at night. He said those rubber type mouth guards you buy at stores can actually make you clench and make TMJ worse. I have never had pain in my jaw or cheeks like this-- and my left ear feels horrible. I keep taking Ibuprofen- up to 1200 mg a day. But I don't want to have to take that the rest of my life! And I started getting headaches too.. but they haven't become a problem, not like my ear or cheek pain. My throat feels dry and rough too and sometimes it's hard to swallow so I need to take my Zyrtec D again... I took it yesterday but forgot today. Do you have dental insurance? They may pay for some of the bite splint. Mine paid a little but I still had to shell out 400 bucks. All these bills that are on their way are giving me anxiety which makes it all worse. So the Xanax does help at night. If only I could take it during the day and not be sleepy! I won't take it during the day.
Do you have any other symptoms throughout your body? Like nerve sensations? I am thinking we may have pinched nerves in that area, by the ear. I think that is what causes my arms and legs to tingle every now and then. But not sure. My chiro actually told me I could have bone spurs in my left ear? Because of the clicking sound when I bounce or hop, like a very small pebble is in there being tossed around. But I don't think he knows. He is treating my back which is messed up.
Do decongestants give you relief? I was taking those around the clock a few months back and my mouth became more dry and irritated... so I stopped
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen plus 2 im like you I really don't know what's wrong with me either. The tympogram test showed normal but yet the pressure is still there. If i could describe my pressure i would say its like air in my ears or a senses of stuffiness that comes and goes throughout the day, but is always there. Its not a clogged or fluid feeling like its just different. How would you describe your feeling? I had a CT scan done today of my head and ears but won't get the results till Friday. I guess we'll see if that says anything. I wonder if tmj could really be causing this or what it could be. I'm finally wrapping my head around dealing with it and accepting it because by dwelling on it and stressing over it is only causing me more damage mentally. Maybe just like it happened one day out of nowhere it might pass again out of nowhere. We need to stay positive, our bodies are a wonderful thing and do have the ability to heal themselves in time. My hearts are with you all tonight and wish you all better health soon. Stay strong and positive
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Mh214-
So glad to see you post again, though not glad your ears are still giving you trouble. If I described my 'pressure sensation' your description of stuffiness that gets higher and lower throughout the day would be exactly spot on for me. Like a stuffy nose, when its not really super bad or swollen in there, but just enough to bother you and kinda make breathing through your nose a little harder- that's kinda what I feel too. I think it's technically called ear fullness, though we don't necessarily feel like we have fluid in there we don't necessarily feel we have pressure in there either. You're right, we have to just try to accept what it is for the moment and hopefully it'll pass- it did for me at least once, so it's possible. I try to be as positive as I can be, and truly appreciate your concern and prayers.
Mandolyn-
I'm not really up to seeing a chiro honestly. The back cracking is one thing, I've done that myself since being a gymnast for a long time when I was younger, but I'm kinda terrified of any neck cracking or popping things etc. I already have trust issues with medical drs due to several stupid ones that I've seen. I'm not up for more possible quackery, though I do acknowledge not all chiros are quacks. I've had some quack drs, supposedly some of the best in Chicago at their specialty. I am very certain it's either my allergies or tmjd causing this, nothing else- the MRI of the brain and inner ear (which is the cochlea,etc near the brain) ruled out any other disorders. Trigeminal neuralgia was ruled out, MS, etc thank goodness. So it's either allergies or tmj disorder, or both. I'm aggressively attacking my allergies, with daily Zyrtec and saline and weekly shots, and can do no more for that. I've done everything medically possible. I've got to make a decision on whether or not to treat tmjd, which I might have according to the non MRI reading tmj specialists. I'm seeing another one today, a neuromuscular dentist, who's staff told me is able to read tmj MRIs, which is a start. My problem is that its very expensive for all this stuff for tmjd and we do not have dental insurance. Crazy thing about it is so many people are helped by so many different and expensive things. The way you describe your facial pain is similar to mine, so that does make me think tmjd is a component, or at least some facial pain disorder involving nerves. When my face gets very tight and painful, my ear feels terrible and I will get little tingles in my fingers of my left hand (side that this all happens on). It's pretty freaky, but I've read tmjd can do that, so I'm not as anxious about it now, especially since having had the MRI turn out ok. The only thing honestly that seems to help me when my pain/ tightness/ear trouble is very bad is my klonopin, which I'm Rx'd for occasional anxiety attacks. I tried the klonopin one day because my husband read that its also sometimes used as a muscle relaxer, so I thought I might as well. It definitely helped me and I'm pretty well able to tolerate it in my system during the day as long as the dose is low .25- .5 mg. Xanax is in the same class of meds as klonopin (benzodiazepines) but has a longer half life (half of it is out of your system in 12 hrs vs 4 hrs I think for Xanax). It's also Rx'd sometimes for its nerve pain killing, muscle relaxing, and anti-seizure properties. You should maybe ask your dr about it if Xanax helps because klonopin would stay in your system longer and has those other properties mentioned that Xanax doesn't. Just a thought. I'm not advocating the use of benzodiazepines, but if it helps, it helps. Chronic pain is worse.
Ill post back about my appt and mh214- please post back with your ct scan results.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I keep hearing about klonopin! I should ask about it. I do love that Xanax helps me sleep and since I haven't been wearing a mouth guard I get nervous to go to bed. Clenching or grinding your teeth without a guard could really damage your teeth and make TMD worse. I bet that is what you have. What you said about your left hand- that happens to me too! My left hand will tingle and my ear HURTS. Sometimes it feels like there is actual movement up there, pinching and then pain. I also get tightness on the bridge of my nose from time to time, but no stuffy or runny nose. I really think if you were fitted for a custom guard/splint to wear at night this may take away all these problems, if it stems from clenching your teeth at night- which many people do and don't even realize. Let us know what the new doc says about the MRI!
__________________
Mild Scoliosis
Tilted Pelvis
Lower back problems
Sciatica off and on
RLS
TMJD
Anemia
Small hernia by belly button (due to pregnancy)
Mortons Neuroma in right foot, by toe
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Mandolyn-
Ok so new doc prefers ct scans of the tmj over MRIs. Unfortunately we have no dental insurance and so I need to get my PCP order the ct scan. He's not going to order it because he will say its not his area of expertise. The office of this tmj guy offered to call my drs office for me to explain to him that it would help cut costs to me if he ordered it, but I doubt he will be on board. I'm not sure why they need a ct scan because an MRI tends to have greater detailing. It makes no sense. I'm just frustrated and ready to just say forget it. It's easier to go to ENTs and neurologists than a dentist?? That's crazy. Just nuts. I'm going to call the ent who specializes in allergies that I'm scheduled to see May 7th to see if I can get an earlier appt because I guarantee that will be easier than trying to follow this stupid tmjd route. I'm just tired of no answers or help. I've got a stinkin MRI of the tmj but that's still not enough?? It just all sounds fishy to me. Will need to keep searching for the right tmj dr. I think. One that can read MRIs. Any suggestions at this point would be greatly appreciated.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
My dentist said CT scans are better for TMJ problems too. I trust my dentist though. We have known him a LONG time and he is a christian guy whos kids go to the school where we work. He also told me not to go down that road unless I truly feel there is something worse going on than what a custom guard can treat. I really think you should have your doc call your dentist and tell them YOU NEED this. I am so sorry you are getting no help. My dentist just wants to save me money but said if I ever want a CT scan of my jaw he will refer me to an oral surgeon. Can your regular provider refer to an oral surgeon? Not sure how that all works. But I would NOT GIVE UP on that CT scan!!
__________________
Mild Scoliosis
Tilted Pelvis
Lower back problems
Sciatica off and on
RLS
TMJD
Anemia
Small hernia by belly button (due to pregnancy)
Mortons Neuroma in right foot, by toe
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Mandolyn-
Thanks for the info about what your dentist suggests. I don't know that my idiotic primary dr will want to order the ct scan no matter what anyone says. I'm just confused about why a ct scan was better than an MRI for tmjd. I thought MRIs show more minute detailing of tissue than ct scans. My MRI was done w/ and w/o contrast too, which would show even more detail. So confused. I'm tired of dr hunting honestly. I live near Chicago and you'd think that living near a huge city would mean more access to these types of specialists but no. I will definitely keep trying to get a ct scan, but still feel unsure of it. I just need some kind of symptom relief soon before I lose my mind. I do not feel that great today honestly. Sigh. Will keep searching tmj drs anyway, it makes me feel better if I'm being proactive about it.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Mandolyn-
Thanks for the info about what your dentist suggests. I don't know that my idiotic primary dr will want to order the ct scan no matter what anyone says. I'm just confused about why a ct scan was better than an MRI for tmjd. I thought MRIs show more minute detailing of tissue than ct scans. My MRI was done w/ and w/o contrast too, which would show even more detail. So confused. I'm tired of dr hunting honestly. I live near Chicago and you'd think that living near a huge city would mean more access to these types of specialists but no. I will definitely keep trying to get a ct scan, but still feel unsure of it. I just need some kind of symptom relief soon before I lose my mind. I do not feel that great today honestly. Sigh. Will keep searching tmj drs anyway, it makes me feel better if I'm being proactive about it.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I totally understand! My problem is money. I received a 600 dollar bill for blood work. BLOOD WORK! Apparently I used the "wrong" facility. It was not a preferred facility which I did NOT know about, so I filed a grievance form and not sure if they are going to pay some or not- their reply was fuzzy. My jaw/ear is always worse in the evening. Feels like my cheek is infected. I still have to slice up food and shove it in my mouth. Soft foods.
I hope you find a good doctor out there. THERE HAS TO BE ONE. There just has to be. And if you are persistent enough you will get that CT scan. I don't know why they do CT scans either for TMJ. Must be a reason though. I think they are cheaper! That is all I really care about as of late. My low back started bothering me tonight after I got home. I thought the disc in my low back was slipping again and I almost cried. I got an ice pack and laid down. If I didn't have 3 children to take care of it would be EASIER to heal! Keep us posted!
__________________
Mild Scoliosis
Tilted Pelvis
Lower back problems
Sciatica off and on
RLS
TMJD
Anemia
Small hernia by belly button (due to pregnancy)
Mortons Neuroma in right foot, by toe
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Mandolyn-
$600 for bloodwork is nuts. I called a few more places out here and they all for some reason remind me of cunning salespeople. I've read about several people on the tmj board being helped alot by physical therapy geared towards tmjd. I actually found a place that does tmjd physical therapy pretty close to me. I found that after they were already closed so I'll call tomorrow and find out the details. I feel like my problem is muscular in nature- the MRI showed that the tmj discs were in their proper location during the open and closed mouth shots. I have no problems eating for the most part unless I'm having the extreme facial tightness/pain, then I am very wary about eating anything but soft foods. I still try to take it easy on my joints but I'm almost positive it's a muscular spasm problem from all my jaw clenching which I just recently notice I do alot. I tried to be more aware of it, and relax my jaw muscles when it happens. I think that the klonopin helps relax me so I don't clench as much but it's not technically classified as a muscle relaxer. The neurologist I saw Rx'd zanaflex as a muscle relaxer and it was a nightmare. I was a walking zombie with 1mg in me and no pain relief. Plus I got terrible abdominal cramping and felt very flu like in general. So I won't be taking muscle relaxers anytime soon. I'm not interested in becoming dependent in klonopin, but I've got to have something for bad days. Today I've taken 2 .25 mg doses and its kept the worst at bay. I'm allowing myself a max of 1mg total per day, so I can space out the doses or take a full .50 mg pill all at once if I feel the symptoms are out of control. My goal though is to not need to take any. I only start dosing if I feel like my symptoms are going to be bad if I don't do something about it.
Hope you're doing well, ill update on the physical therapy info that I'm going to call for tomorrow.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I have been following everyone's posts with much interest. I guess you can say that I am in "this club" of ETD suffers. I have had the condition of stuffiness in my ears (both) for almost 5 years. I can trace it back to when I had a root canal on my left upper tooth (back). I want to add my experience with certain aspects of what many of you have discussed. Hopefully it will help some of you.
Many years ago, I flew to Brazil with a cold. When I alighted from the plane one of my ears wouldn't pop. I walked around with a clogged left ear for two weeks until I finally saw an ENT. This was in Rio, mind you. He promptly pulled out a devise that he stuck in my left nostril, told me to swallow and pop, he blew a burst of air through my nose into my inner ear and out popped the air from my left ear. Problem solved.
Fast forward to many years later... I had a root cannal that the dentist said was not infected, but it was. After fever and swelling, he finally agreed to put me on antibiotics. By that point, the infection spread, I believe to my sinuses... that left a residual blockage in my ears.
Many tests have turned up nothing. I have had CT scans, hearing tests (amazing no real hearing loss, because I hear a dull ringing in one ear), tried nasal steroids, decongestants, antihistamines. you name it. I have not investigated the TMJ questions, but with this history, I am fairly sure it is not jaw-related.
In terms of allergies and where I live and travel, I live in California, but I am from NY, and when I travel back east to visit, I notice that my symptoms are markedly better. I am not sure if it is the flights or what, but when I return to California, my ears feel worse.
Where does all this leave me today? Not very far. I am still hoping for a miracle cure. I have found one ENT here that uses a similar "ear-popper" like I had in Brazil, but I am timid to try it and worry it might hurt me and that it is too late. I think that technique works best when everything is still fluidy and in flux. My problem feels dried out now, like air stuck.
Thank you to all. I will wait before I try to balloon treatment, will avoid placing tubes, and will try to get to see Dr. Weeks in San Diego... but I sure feel desperate and hopeless about finding a lasting cure.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Quote:
Originally Posted by Mandolyn
Jenplus-- ME TOO. Left ear and the right ear occasionally feels full but nothing like my left ear. My left ear always feels infected. Do you notice it gets worse as the day goes on? That is how it is for me. And that weird clicking in my ear when I workout-- only when I am doing any type of hopping cardio, it's like something is in my ear bouncing around.
Hi Mandolyn!
Thanks for your reply I did used to grind my teeth at night when I was a kid so that is something worth looking into for me. One thing that you mentioned that is interesting is my day usually starts off great too- it even clears a few times in the morning (BEST FEELING EVER!). But as the day goes on it the pressure gets worse and worse and I am eventually unable to clear it. Then I start doing the valsalva maneuver which helps the first few times, but then that makes it worse and worse the more times I do it. By the end of the day my ear is in terrible shape, tons of pressure and nothing clears it at all. Then the next morning ... it feels good again, and repeat! I also get weird swishing noises or crackling I guess you could call it ... if somebody talks really loud to me, or if I hear like plates crash together. In other words, a loud noise in a quiet setting is always followed by some sort of noise in my affected ear.
Other than that ... my other ear is perfectly clear all the time. SUCH A MYSTERY!
Shay
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Naomikins, I purchased the "EarPopper" last year (for almost $200!) and it did not work at all for me. That said, every review I have ever read on it seemed to be a good one (and I researched several websites). I was very disappointed that it did not help my ear pressure symptoms at all, even temporarily. Sometimes it even made them worse (but just for about an hour or so)! Grrrrrr. I had been SO hopeful ....
A question for everyone on here: has anyone ever used "Otovent"? I just got it and wanted to hear anyone's experience with it before I try it.
JennPlus 2 .... did you mention you were from Chicago? I just spent the weekend there (I'm from Vancouver, Canada) ... first time there. LOVED it! What a beautiful city. And .... luckily I was able to clear my ears using valsalva maneuver during my two plane trips each way (Vancouver to Portland to Chicago and back!). I had been VERY nervous they would get much worse.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Naomikins, I purchased the "EarPopper" last year (for almost $200!) and it did not work at all for me. That said, every review I have ever read on it seemed to be a good one (and I researched several websites). I was very disappointed that it did not help my ear pressure symptoms at all, even temporarily. Sometimes it even made them worse (but just for about an hour or so)! Grrrrrr. I had been SO hopeful ....
A question for everyone on here: has anyone ever used "Otovent"? I just got it and wanted to hear anyone's experience with it before I try it. A lot of doctors use it on children in the UK so I thought it was worth a shot for temporary relief of my pressure symptoms.
JennPlus 2 .... did you mention you were from Chicago? I just spent the weekend there (I'm from Vancouver, Canada) ... first time there. LOVED it! What a beautiful city. And .... luckily I was able to clear my ears using valsalva maneuver during my two plane trips each way (Vancouver to Portland to Chicago and back!). I had been VERY nervous they would get much worse....
I did used to grind my teeth at night when I was a kid so that is something worth looking into for me. One thing that you mentioned that is interesting is my day usually starts off great too- it even clears a few times in the morning (BEST FEELING EVER!). But as the day goes on it the pressure gets worse and worse and I am eventually unable to clear it. Then I start doing the valsalva maneuver which helps the first few times, but then that makes it worse and worse the more times I do it. By the end of the day my ear is in terrible shape, tons of pressure and nothing clears it at all. Then the next morning ... it feels good again, and repeat! I also get weird swishing noises or crackling I guess you could call it ... if somebody talks really loud to me, or if I hear like plates crash together. In other words, a loud noise in a quiet setting is always followed by some sort of noise in my affected ear. 
