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Old 05-27-2013, 03:56 PM   #1
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Long Term Eustachian Tube Dysfunction Recovery

Some of you have been following my journey with eustachian tube problems, which began for me after taking a flight with severe nasal congestion in December of 2010. I wanted to update with information about how I'm doing today.

My chief physical symptoms have been: ear fullness, itching in ears, clicking/crackling ears and throat, low-pitched humming tinnitus, and multiple bouts with middle ear fluid and acute middle ear infections.

I spent hundreds of hours researching my problem and thousands of dollars seeking medical advice and intervention. Many times I was either misdiagnosed or given false leads to follow.

The only thing that seems to have helped me on a long term basis is allergic immunotherapy. It turned out that I was -- and am -- allergic to multiple inhalants, including tree and grass pollens, dust, dust mites, and mold. I have had weekly allergy shots for over a year and a half. Recently we began a newer, more aggressive protocol that involves two shots at a time and requires more careful, close monitoring immediately after receiving the shots. It also seems that I have at least mild to moderate food allergies that produce additional symptoms of itching and swelling in the mouth, throat, and e-tubes. Avoiding a couple of the very common food allergens has been helpful. Anything that reduces the total "allergic load" I'm carrying at any given time is the goal. I'm finding it's more helpful to avoid triggering symptoms by avoiding allergic exposure than to try to treat symptoms once an allergic "attack" has begun.

It took longer than a year to feel any appreciable results from this therapy. It's a 3-5 year total commitment, so it's very slow. But gradually, I have been given more "clear time" or freedom from daily ear symptoms. It went from occasionally feeling better for a day or two to sometimes getting up to a week at a time with minor or no ear issues. The symptoms go up and down, I'm guessing depending on how much exposure to allergens I get over a given period of time. In other words, certain conditions -- a very windy, warm day with lots of pollen in the air, for example -- can cause a flare. Or having a cold, which already compromises sinus and e-tube function. But I feel better equipped to deal with these flare-ups, at least emotionally speaking, because I have hope and conviction that they will be short-lived.

I am not currently taking any allergy medication on a daily basis, which shows me how far I've come. I take them for flare-ups. A year ago today I lived on a daily regimen of Zyrtec, Flonase, and Sudafed, plus Klonapin for anxiety and to tone down my perception of tinnitus enough so that I could sleep. I also had bilateral pe tubes so I could drive and fly without constant discomfort, and am now down to one tube, the one in my most symptomatic ear, as the other ear has "grown out" of its tube, and I've felt well enough to forego a replacement tube in that ear (the remaining tube IS a replacement I had done last fall as I had lost the tube in the "bad ear" and the ear immediately converted to negative pressure per my tympanogram).

I know that there are many out there suffering and on a similar path, so felt i should offer a hopeful update. I'm not saying I'm cured, but that I'm over all much better than I was and am grateful for every moment of "clear time" that I get, in a way that I never was prior to experiencing a chronic health issue.

Also, I think having become so attuned to my ears over the course of this ordeal has contributed to a sense of being hyper-alert to ear sensations, especially pressure, so one of the best pieces of advice I can give is to stay engaged in your world and distracted. Sounds simplistic, but it does help!

 
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Old 05-28-2013, 07:33 AM   #2
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Re: Long Term Eustachian Tube Dysfunction Recovery

Hi Jenni, I've been reading this forum for a while but only recently registered. I have some eustachian tube dysfunction which sounds fairly similar to yours except less severe I think. You mentioned in a previous thread you had an OCD-like obsession with clearing your ears...did that ever go? I don't know if I'm the same as you...but I can actually move my palate up and down (it's like palatal myoclonus but completely voluntary)...I've only just in the past few weeks managed to stop doing it!

 
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Old 05-28-2013, 03:39 PM   #3
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Re: Long Term Eustachian Tube Dysfunction Recovery

Hi Mattre101,

I know exactly what you are talking about as far as voluntary palatal myoclonus is concerned. I can also tense the muscles in the back of my palate to open my eustachian tubes at will. I learned this little maneuver on my own when I first came down with the ETD issues...I can't remember ever doing it before then. My ears were blocked for like 48 days straight, so I picked up all kinds of habits and tics in my efforts to clear my head. At times, I felt like I was going crazy...I lost so much weight I looked seriously ill.

I do still, to this day, have spells where it feels OCD-ish with the ear clearing. I try not to valsalva (plug nose and blow) very often, as it can actually blow germs from the throat up into the middle ear space and create an environment that can turn into an ear infection. Since part of my problem IS recurrent middle ear infections, this is obviously not a good thing for me to do over and over. It's harder to stop doing the palate movement, though, because it's subtle and instantaneous, so I can do it over and over and nobody will notice. It's hard to avoid, also, as it does seem to provide a split second of some kind of relief. Plus it makes a clicking/cracking noise that is, somehow, almost like an OCD reward. I can't explain WHY the sound is rewarding, but maybe you know what I mean.

Did you ever end up with the muscles almost in like a painful spasm from ear clearing? How did you finally kick the habit? A neuro-otologist talked about Botox for the palate, but I read it can give you temporary patulous eustachian tube dysfunction, which would be even worse than OCD ear clearing! I need to figure out a less invasive way to get a handle on this habit.

Jenni

 
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Old 05-29-2013, 04:03 AM   #4
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Re: Long Term Eustachian Tube Dysfunction Recovery

I discovered I could do it back in around September, I noticed that if I opened my mouth wide I could hear a clicking noise like a ticking clock. I was so anxious about what this was and from reading the internet thought it was pulsatile tinnitus at first. Then I noticed that my uvula bounced up and down in sychrony with the clicks, then read about palatal myoclonus. I was convinced that it was involuntary but over time I realised that I was in control...it's hard to explain but I guess reading about palatal myoclonus I was actually moving my palate subconsciously.

Anyway, I saw an ENT consultant in October 2012 and he stuck a scope up my nose and got me to move my palate up and down. He confirmed it wasnt' palatal myoclonus as PM is much more rapid spasms, and just said that I had control of my levator veli palatini muscle. He agreed that it was hypersensitive though.

I saw him again last week and enquired about botox. He said it was an option, but I'm going to leave it a few months before I make a decision.

As for kicking the habit, I just thought to myself that maybe this constant moving of the palate is contributing to the problem, and I'll never know unless I stop doing it! I'm not sure I had any painful muscle spasms though.

 
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Old 05-29-2013, 04:38 AM   #5
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Re: Long Term Eustachian Tube Dysfunction Recovery

My son has palatal myoclonus and Eustachian tube disfunction. He did try Botox in his soft palate and it did increase the pain in his ears. It is completely debilitating now and he is home from school. I would love to know which neurologist told you that could happen, because that is new information to me and that neurologist is very knowledgeable. We are going to try tubes to alleviate some of the pain in his ears. Did the tubes help with your ear pain?

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Old 05-29-2013, 03:52 PM   #6
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Re: Long Term Eustachian Tube Dysfunction Recovery

Quote:
Originally Posted by earmom View Post
My son has palatal myoclonus and Eustachian tube disfunction. He did try Botox in his soft palate and it did increase the pain in his ears. It is completely debilitating now and he is home from school. I would love to know which neurologist told you that could happen, because that is new information to me and that neurologist is very knowledgeable. We are going to try tubes to alleviate some of the pain in his ears. Did the tubes help with your ear pain?
Hi Earmom,

Sorry to hear your son is going through this. Before i got ETD, I never realized how stressful these ear conditions can be, both for the person suffering and for his or her family members.

The tubes have been helpful for me, especially to avoid ear blockage when driving or flying, which can be dangerous if you have trouble equalizing your ears. I have read others' accounts where they had trouble with the tubes or felt worse afterwards, but for me, they have been helpful. Not a cure, but providing some degree of relief.

I had some pain with ETD, but mainly a fullness or pressure sensation, like my ear needs to be popped. Usually if there's pain for me, it means I am getting an infection.

I can still get infections with tubes in, I have found, and have to be very careful not to get water in my ear during showers (and swimming is totally out). Even the best earplugs, I have found, are not really water-proof.

Jenni

 
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Old 05-29-2013, 03:58 PM   #7
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Re: Long Term Eustachian Tube Dysfunction Recovery

Quote:
Originally Posted by mattr101 View Post
I discovered I could do it back in around September, I noticed that if I opened my mouth wide I could hear a clicking noise like a ticking clock. I was so anxious about what this was and from reading the internet thought it was pulsatile tinnitus at first. Then I noticed that my uvula bounced up and down in sychrony with the clicks, then read about palatal myoclonus. I was convinced that it was involuntary but over time I realised that I was in control...it's hard to explain but I guess reading about palatal myoclonus I was actually moving my palate subconsciously.

Anyway, I saw an ENT consultant in October 2012 and he stuck a scope up my nose and got me to move my palate up and down. He confirmed it wasnt' palatal myoclonus as PM is much more rapid spasms, and just said that I had control of my levator veli palatini muscle. He agreed that it was hypersensitive though.

I saw him again last week and enquired about botox. He said it was an option, but I'm going to leave it a few months before I make a decision.

As for kicking the habit, I just thought to myself that maybe this constant moving of the palate is contributing to the problem, and I'll never know unless I stop doing it! I'm not sure I had any painful muscle spasms though.
Yeah, if you can consciously stop the habit, I would avoid Botox in the palate, if I were you. Do you find it has helped your ETD to stop the voluntary clicking? I have wondered if the clicks are helping to keep my ETD issues going. I literally have clicked my ears/tubes into spasm before, which is very painful.

Jenni

 
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Old 05-30-2013, 06:54 AM   #8
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Re: Long Term Eustachian Tube Dysfunction Recovery

Hi Jenni,
We spoke a bit last year with regards to ETD. Thanks alot for posting again to update. I am also told that my ear trouble is allergic so I can relate. I have been doing immunotherapy but cannot tell yet if its helping, since its only been 6 months. I have had 2 separate periods of no symptoms at all, for 2 months each, throughout my own ordeal. My e tubes erred pressure locked shut last year and I had finally found a dr who does the e tube dilation, and thought it would be the end of this. It was for a couple months, but my allergies or something just caused it to come right back. The main ability that I've gained through having the dilation is that I can pop them all kinds of ways, which gets to an almost ocd level, as you've mentioned you've gotten to before. I am very frustrated that this problem continues, and have considered trying to see Dr Poe. I know you saw him last year and he told you that it was likely a tmjd problem. I'm wondering, do you think that if I don't have pressure locked tubes anymore, will he honestly be of any help? I know you cannot say for sure, just asking for an opinion.

You mentioned that your worse ear went back to negative pressure after your tube fell out. Was it out of normal range pressure, or just slightly negative? I'm curious because I have done a couple tympanograms since the dilation and I seem to have slight negative pressure (-5 to -20 daPa) and the audiologist told me that this is very negligible pressure. I guess I was thinking normal ears have pretty much 0 daPa pressure most of the time.

Again thanks for your post, and thanks for any response you have time to give me.

Jen

 
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Old 06-03-2013, 03:02 AM   #9
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Re: Long Term Eustachian Tube Dysfunction Recovery

Quote:
Originally Posted by jenni9033 View Post
Yeah, if you can consciously stop the habit, I would avoid Botox in the palate, if I were you. Do you find it has helped your ETD to stop the voluntary clicking? I have wondered if the clicks are helping to keep my ETD issues going. I literally have clicked my ears/tubes into spasm before, which is very painful.

Jenni

Well, in general I seem to getting better very slowly but surely. By that I mean I have an increased amount of time where I feel 'normal'.

Do you find your ears are bad when you're in a car? I told my ENT that my ears seem to pop just by being in a car and he said that maybe they'd always done that but I never took notice of it! Maybe he's right but I'm having trouble convincing myself.

 
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Old 06-04-2013, 08:18 PM   #10
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Re: Long Term Eustachian Tube Dysfunction Recovery

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Originally Posted by JenPlus2 View Post
Hi Jenni,
We spoke a bit last year with regards to ETD. Thanks alot for posting again to update. I am also told that my ear trouble is allergic so I can relate. I have been doing immunotherapy but cannot tell yet if its helping, since its only been 6 months. I have had 2 separate periods of no symptoms at all, for 2 months each, throughout my own ordeal. My e tubes erred pressure locked shut last year and I had finally found a dr who does the e tube dilation, and thought it would be the end of this. It was for a couple months, but my allergies or something just caused it to come right back. The main ability that I've gained through having the dilation is that I can pop them all kinds of ways, which gets to an almost ocd level, as you've mentioned you've gotten to before. I am very frustrated that this problem continues, and have considered trying to see Dr Poe. I know you saw him last year and he told you that it was likely a tmjd problem. I'm wondering, do you think that if I don't have pressure locked tubes anymore, will he honestly be of any help? I know you cannot say for sure, just asking for an opinion.

You mentioned that your worse ear went back to negative pressure after your tube fell out. Was it out of normal range pressure, or just slightly negative? I'm curious because I have done a couple tympanograms since the dilation and I seem to have slight negative pressure (-5 to -20 daPa) and the audiologist told me that this is very negligible pressure. I guess I was thinking normal ears have pretty much 0 daPa pressure most of the time.

Again thanks for your post, and thanks for any response you have time to give me.

Jen

Hi Jen! Yes, I remember talking. If I remember correctly, you have two little kids, like me. It definitely makes this condition even more challenging to manage when you are caring for others!

I have had a change in my condition since I last posted...my "long-lasting" T-tube in my bad ear decided it was time to give up the ghost. I haven't had it officially confirmed yet that it's out -- my ENT-allergist appt is tomorrow. But the tube is definitely not open or working...I could always test its function by doing a gentle valsalva and listening for air to blow out of my eardrum. I'm not getting any air through it now, and the worst thing is...the ear has converted right back to feeling blocked/muffled! Ugh!!!!!

Like you, I can still pop this ear, but it does not feel right at all. The difference between working pe tube and no tube is immediate and awful. I'm back to throwing Sudafed and ibuprofen at the problem. No luck yet.

So...I guess I can still say that my left ear seems largely to have recovered from the initial ETD problem, as the tube came out of that a while back & I don't think needs to be replaced. But the right ear obviously has a way to go. The right ear is maintaining its status as "the bad ear." This second tube only lasted 7 months!

To answer your other question, when I lost the tube the first time on the bad ear, they found it converted to negative pressure, but, according to the doctor, it was in the more mild/moderate range. But he said some people are more pressure-sensitive, and that unfortunately I seem to fall into that category. I also now get ear infections several times a year...this was never a problem as a kid or during my 20s. I didn't have noticeable ear or allergy problems until living in the Pacific NW for 4-5 years. Now I kind of regret migrating here!

I think Poe will only surgically intervene on ears that are blocked even after aggressive allergic and LPR/silent reflux interventions are tried. What clouded his clinical picture of me, I feel, is that my allergies cleared almost immediately in Boston, only to return when I got home. So he really had no other diagnosis to offer other than TMJD, as my tubes looked healthy and functional on examination. I know for some people it's turned out to be TMJD -- for me, splint treatment didn't change my ear sensations and actually began to give me an aching jaw. I gave the splint 6 months but it was an expensive no-go, for me.

Have you ever looked into silent reflux? That's one of the few angles I haven't really explored yet. I'll ask about it tomorrow at my appointment, and ask for yet another tympanogram.

Back on the carousel...
Jenni

 
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Old 06-04-2013, 08:25 PM   #11
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Re: Long Term Eustachian Tube Dysfunction Recovery

Quote:
Originally Posted by mattr101 View Post
Well, in general I seem to getting better very slowly but surely. By that I mean I have an increased amount of time where I feel 'normal'.

Do you find your ears are bad when you're in a car? I told my ENT that my ears seem to pop just by being in a car and he said that maybe they'd always done that but I never took notice of it! Maybe he's right but I'm having trouble convincing myself.
Yep, riding in cars causes all kinds of pressure sensations and popping even with small elevation changes. And I don't remember this before ETD. Back then, my ears would pop coming down a mountain, not just crossing a small bridge or railroad tracks! Sometimes even closing a car door will pop my ears. It's pretty crazy. Getting tubes stopped the pressure fluctuations to some degree, but not the constant popping. And now I'm back to no working pe tubes, so not sure what my next move is.

 
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Old 06-04-2013, 09:11 PM   #12
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Re: Long Term Eustachian Tube Dysfunction Recovery

Jenni,
Thanks for the info on your tmjd treatment. I have been given this diagnosis too. I know how frustrating it is to have the kids and have these issues. I agree with your above statement on staying involved in life and trying to focus elsewhere. The ent who told you that you might just be more pressure sensitive could possibly be right because I have had that experience too. My pressures were called 'clinically insignificant'. Well they aren't to me! I can't imagine how much money you have poured into this, and the t tube falling out must have been such a frustration to you. I hope it didn't damage your ear drum. Any ideas yet on your next move? I'm curious only because I'm trying to decide mine and am looking for ideas. I know how annoying it is to have gone your whole life without ear problems and then get them and they just won't quit. I hope to stay as positive as you have been. Please update when you can.

Jen

 
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Old 06-06-2013, 03:47 PM   #13
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Re: Long Term Eustachian Tube Dysfunction Recovery

Hi Jen & everyone,

Yesterday I had an appt with my ENT-allergist because I had developed severe ear blocking and pressure sensations in my right ear about three days prior. It turns out, on examination, that not only was the pe tube in that eardrum non-functional, but it was partially protruding out of the drum and had a granuloma growing around it AND the ear was severely infected, with a swollen ear drum. So we opted to remove the tube right then and there in the office. It didn't hurt. My doctor also found my old left pe tube sitting out of the eardrum and just hanging out in the canal. He removed it, too, then suctioned all the infectious matter and, yuck, blood out of my bad ear. He gave me steroid drops to use 2X a day.

Now that the non-functional tube is gone from each ear and the swollen eardrum has had 12 hours or more to calm down, I have to say I feel pretty much normal again. I have no guarantees that I'll stay feeling normal, since I've had SO many set-backs and reversals of fortune throughout this, but for now, it's really nice. I'll just try to stay positive and keep my fingers crossed.

If I stay feeling normal, I may not get this tube replaced. I go back for a follow-up in a couple weeks.

I'll update again soon, especially if something changes for better or worse, and look forward to hearing how everyone else is progressing in regaining their health.

Jenni

 
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Old 06-07-2013, 09:07 AM   #14
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Re: Long Term Eustachian Tube Dysfunction Recovery

Jenni,

So happy to hear good news, I'm keeping my fingers crossed for you!

I'm afraid not much has changed on my end, but I'm trying to keep a positive outlook and remain patient--easier said than done.

Tati

 
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Old 06-10-2013, 07:05 AM   #15
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Re: Long Term Eustachian Tube Dysfunction Recovery

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Originally Posted by jenni9033 View Post
Yep, riding in cars causes all kinds of pressure sensations and popping even with small elevation changes. And I don't remember this before ETD. Back then, my ears would pop coming down a mountain, not just crossing a small bridge or railroad tracks! Sometimes even closing a car door will pop my ears. It's pretty crazy. Getting tubes stopped the pressure fluctuations to some degree, but not the constant popping. And now I'm back to no working pe tubes, so not sure what my next move is.

I too sometimes get a fluttery sensation when a car door slams, but only in the left ear. have you flown since your ETD?

Unlike you, I haven't had any infections or congestion. To be honest, I wasn't surprised when the ENT dr said my middle ear pressure was normal and that my tubes were functioning properly. I'm convinced my problem is muscular. I'm seeing an oral maxillofacial specialist next week and I'll see what he says.

 
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