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Old 11-03-2011, 11:33 AM   #1
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Exclamation Chronic Eustachian Inflammation

Hi everyone, I've posted in a few other sections on this site but have decided to leap into the ENT forum now. I am a 24 year old female and have had an ordeal going on for over a year now that has been an unending battle of dead ends and question marks for me and numerous doctors. I apologize in advance for the long post, please make it to the end and suggest anything you think may be helpful! I sincerely appreciate any advice.

One evening last September, my ears suddenly felt hot and full of fluid; this quickly turned into an anxiety attack causing dizziness and faint-like feelings. I went to an express care doctor the following morning, was put on a round of antibiotics and was told to wait it out. After the antibiotics were finished, the problem was still there, so I went back to the same place only to be given Sudafed. I was back in within a few days after not being able to take the Sudafed (don't give decongestants to anxious people) and was put on another course of antibiotics. I was also put on Flonase as one point but it exacerbated the issues, my body highly dislikes steroids. Throughout this whole time, my ears were full of fluid and my eustachian tubes were not popping/functioning properly. It caused hearing issues, but I didn't know exactly what issues until a few months later.
Fast forward to December.. when I became bed-ridden for a month. The anxiety from the fluid in my middle ears and inflammation in my eustachian tubes was overbearing and I could no longer work, could no longer go out, couldn't do much of anything. I even had to cancel a cross-country flight and road trip. I also could no longer handle any caffeine or alcohol. The only time I left my house was for therapy (coping with the anxiety and my health) and doctor's appointments. It wasn't until the end of January that I finally got in to see an ENT.
The ENT scoped through my nose, down my throat. At that time, he said everything was inflamed and decided to put me on Astepro nasal spray, thinking that maybe allergies were my problem, and also ordered a hearing test since I was worried of hearing damage (I go to a lot of concerts and had been to one two days before everything started). The test actually came back showing that I have hypersensitive hearing, and the tympanogram was normal.
Now fast forward to present day. I have had blood allergy tests, and skin allergy tests done, all negative. I just saw my ENT again this week and he can't think of anything else to do other than put tubes in. The only issue though is that he (and everyone else) is really hesitant to do this because of my sensitive hearing. The tubes would make this problem even worse and it already causes anxiety for me as is. The other issue I have with tubes is that they are simply a buffer for the underlying problem. He scoped up my nose again this time and just like the last few times, he is seeing that everything looks fine until he gets to the opening of my eustachian tubes. This area has consistently been irritated and inflamed.

Overall, I have been on numerous courses of antibiotics, numerous medicines (to the point of my body rejecting everything because it can't handle any more changes). I have had an MRI assessed by a neurologist, and CT-scans of my sinuses showing a slightly deviated septum and very minor nasal obstruction (I've never noticed it).
I have reflux but it seems to be controlled because when the ENT looks down into my throat and vocal cords, he doesn't see any acid damage. I also have issues with my thyroid, I am sub-clinical hypothyroid but I go back and forth between hypo- and hyper- symptoms. My thyroid is also slightly inflamed and palpable. I am seeing an endocrinologist and have an appointment at the end of the month to check levels and test for antibodies. I have also been working with my primary physician, getting numerous blood work done.
I am currently taking Levothyroxine 25mcg, Vistaril 10mg 2-3 times a day for anxiety, Protonix, Astepro spray, and a multivitamin.
Since the ear problem, I have also had eye inflammation (causing irritation and blurred vision) and inflammatory acne. I have been treated with steroid eye drops and am currently still using a retinoid/antibiotic topical gel for my face. It is hard to say if these issues are side effects from taking multiple antihistamines every day, or if they are related symptoms. Some of my doctors are starting to think this could be an autoimmune problem and I am getting blood work done to check ANA and Rheumatoid Factor.

Again, I apologize for the long post, but I wanted to make sure I told the whole story (and I'm sure I've missed a lot of things, including failed medicines). Has anyone ever endured this type of inflammation problem, especially with the strange visible irritation in the eustachian tubes? I can physically feel where my eustachian tubes are at all times and have a really rough time traveling through hills or any slight elevation changes because of the pressure and lack of proper popping. I have not been on a plane and honestly won't go on one until issue is managed. The Astepro has kept the problem manageable enough for me to go about my daily life now but I have to carry ear plugs with me everywhere and can't walk into a concert without having them in. Even then, the music cuts through sometimes and causes anxiety. I have noticed that the problem isn't consistent day to day and seems to get worse when the weather is bad outside. So I occasionally have "ok" days and some days where it's better for me to lay low and not do anything. Also if I have any kind of foods that are dehydrating, I can feel fluid accumulate in my ears.
I'll stop talking now, any suggestions, ideas, thoughts?

Last edited by fidelis7; 11-03-2011 at 11:38 AM.

 
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Old 11-03-2011, 10:55 PM   #2
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Re: Chronic Eustachian Inflammation

Hi there, sorry to hear you are going through this horror show of eustachian tube problems. If you read some of my other posts, you can read what I have gone through, so I won't have to bore you with my story.

A) IF you decide to get tubes, they will, yes, only be temporary, but they tend to slightly reduce hearing, not really enhance it, so that might work in your favor. I have tubes in both ears...started with one ear, and got SO much relief after it healed that I had the second tube put in. Tubes have given me back the freedom to travel...I was grounded for many months and barely able to leave the house as we live in a hilly area, and by the time I got anywhere, my ears would be going crazy with popping, pressure, etc.

B) When you say you got skin tested for allergies, do you know if they used a simple pr*ck (<--can't actually write it out...forum censors it because it thinks I'm using a bad word, lol) test, or was it intradermal testing? The distinction is VERY important, because most allergists go for the cheaper/simpler skin test rather than the much more thorough intradermal testing, and ear-related allergies are often missed this way because it takes much more of an allergen to produce a reaction than, say, somebody whose allergy is expressed through a different symptom set/area of the body. The intradermal testing is far more sensitive and should be able to pick up on the more subtle allergies that can be an underlying cause for ear problems such as what you are going through.

C) Try to see an ENT-Allergist. The specialized training *in combination* is key. They are brilliant at what they do, and will be do a much better job than just an ENT or just an allergist (in my not so humble opinion).

That you feel worse with weather changes, to me, points towards a mold allergy, as mold spore count goes up and down in tandem with weather systems. Also, changing wind patterns can stir up all manner of pollen and floating gunk, and aggravate things.

I've aggressively gone after allergy treatment after nearly 11 months of eustachian tube dysfunction. And it is the ONLY treatment path that has given me significant relief so far. I use both astelin and flonase in combination as directed by my ent-allergist, being sure to use the spray in the correct position to try to hit the e-tube area. I also am now proud owner of $1300 in HEPA filters running continuously, including an industrial one that runs in my studio where I do much of my work and where, I believe, my allergies spike. (I'm not saying you need HEPA at this level of expense; I work in antiquities and needed the heavy-duty big boy to filter the air in my work space because it is filled with musty old things!) A lot of allergy management is pure avoidance, too...so I'm giving over the job of raking leaves and grass clippings to someone else...permanently.

 
Old 11-06-2011, 07:14 PM   #3
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Re: Chronic Eustachian Inflammation

I actually noticed the censoring on pr*ck when I originally wrote the message, so I took it out. Yes, I did get the pr*ck test done, 100 on my back and then I am guessing an intradermal done on my arm, which involved 50 allergens. The only reactions I had were to histamine constants. The test was administered by an allergist and the procedure seemed very thorough. He even spoke with me for a while after the tests were completed to discuss the possible reasons for what is going on with my body.
The thing that concerns me about tubes (aside from hearing) is that I can physically feel my eustachian tubes at all times. I can feel the irritation and swelling, which I feel would not be temporarily fixed by tubes. I know the tubes would help with pressure but I don't see how they would help with what is actually going on in my eustachian tubes. It's a toss up to really know how beneficial tubes would be for what's occurring.
I forgot to mention that I also have had tinnitus for years now, but it has been especially bad in the past year. For example, today my right ear has tunneled out into a mid-pitched ring 3-4 times. Both ears do it but I feel like it switches from day to day, and I do have some days with very little to no ringing. And the pitches do change.
Another thing, going along with physically feeling the irritation, is that whenever I have gotten sick with a cold or minor bug in the past year, it has gone straight to my ears. I have been on the road for the past few days and feel a little under the weather from it -- throat is a little hoarse and lymph nodes are kind of swollen, but my eustachian tubes are raw. Just another tidbit.

 
Old 11-06-2011, 09:38 PM   #4
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Re: Chronic Eustachian Inflammation

Quote:
Originally Posted by fidelis7 View Post
I actually noticed the censoring on pr*ck when I originally wrote the message, so I took it out. Yes, I did get the pr*ck test done, 100 on my back and then I am guessing an intradermal done on my arm, which involved 50 allergens. The only reactions I had were to histamine constants. The test was administered by an allergist and the procedure seemed very thorough. He even spoke with me for a while after the tests were completed to discuss the possible reasons for what is going on with my body.
The thing that concerns me about tubes (aside from hearing) is that I can physically feel my eustachian tubes at all times. I can feel the irritation and swelling, which I feel would not be temporarily fixed by tubes. I know the tubes would help with pressure but I don't see how they would help with what is actually going on in my eustachian tubes. It's a toss up to really know how beneficial tubes would be for what's occurring.
I forgot to mention that I also have had tinnitus for years now, but it has been especially bad in the past year. For example, today my right ear has tunneled out into a mid-pitched ring 3-4 times. Both ears do it but I feel like it switches from day to day, and I do have some days with very little to no ringing. And the pitches do change.
Another thing, going along with physically feeling the irritation, is that whenever I have gotten sick with a cold or minor bug in the past year, it has gone straight to my ears. I have been on the road for the past few days and feel a little under the weather from it -- throat is a little hoarse and lymph nodes are kind of swollen, but my eustachian tubes are raw. Just another tidbit.
Yes, the journey towards answers can be an aggravating mystery. At one point, I was chasing the TMJD thing, and at another, I had a chiro convinced it all had to do with muscle spasms due to some early arthritis/osteoporosis in my cervical spine. But the TMJD bite splint made me feel worse, not better, and the chiro appointments were not doing much, I felt.

The other test to find allergies is blood testing. Here's the funny thing...so far, I have had the pr*ck test done, which only showed mild mold allergy. That allergist refused to do the intradermal testing; they tend to be of two camps, with one camp vehemently opposing this newer, more extensive mode of testing. Then I had the blood test done, which came back indicating mold and grasses (3 types) allergy. And on the 29th, I'll have the full-bore intradermal testing, which can take up to 3 hours all told. So with each level of testing, more of my allergies seem to be found. I know that on rainy days, or even just before a storm system moves in, my symptoms SPIKE. In fact, the past two days my tinnitus was ringing and buzzing/vibrating in my right ear about as bad as it gets. Then this morning? Sunny day, almost no symptoms whatsoever. So I went from feeling the worst possible to feeling pretty much normal, with just a change of weather. I really think mold is a big problem for me...that I've become hypersensitized to even low levels, and that it's the result of working with musty things for nearly 14 years, the past 7 spent living in a moldy area of the country. I think my system is now overloaded and any small amount causes my tubes to lock up with inflammation.

I do know what you mean about feeling your e-tubes. It is just like what I imagine a sinus pressure problem would feel like (having rarely had that), only situated just below the ears and within the back of the neck/throat. And the pe tubes do not help as much with that. I still get the plugged e-tube sensation when my symptoms are at their peak. But being able to drive without constant crawling and plugging of my middle ears, as well as being able to fly, has made the procedure worthwhile for me. I definitely would not say they have given 100% relief, as some are lucky enough to get. But this ordeal has been going on for almost a year, so SOME relief is welcome, indeed. Also, while I can still feel pressure down in my e-tubes during these bad times, I do not feel corresponding pressure in the ears themselves. Before the tubes, I had both going on at once, and it was taking up a lot of real estate in my head...enough to drive me to the point of tears many times.

Have you tried taking anti-inflammatories? Ibuprofen or the like? You may have mentioned this, or not, but have you tried a prescription steroid taper? Not to urge you to take steroids on a regular basis, as overuse leads to very bad side effects, but if you get relief on a prednisone taper, you have one more clue that it's an inflammatory issue.

 
Old 11-10-2011, 04:53 PM   #5
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Re: Chronic Eustachian Inflammation

I posted this in my ongoing threat in the General Health section but it's applicable to this thread as well:
Well, I have some updates. My ENT ordered tests for Rheumatoid and ANA, both have come back negative. I also went ahead and got my thyroid labs completed, even though I don't see my Endo for another couple of weeks. My Free T4 is 0.88 ng/dl (range 0.5-1.6), and TSH 1.58. This is actually a little lower than it was before decreasing my levothyroxine dosage and stopping birth control pills. Both thyroid antibodies are also negative, so nothing leads to autoimmune issues.
I have been feeling okay lately, not great, but okay. My eyes are starting to blur again though and my ENT can only think of trying tubes to see if that helps my ears. As I have said in the ENT forum on here though, he is hesitant about it (and so am I) because of my already hypersensitive hearing. He put a scope up my nose again to see how everything is looking and nothing has changed. Everything looks fine until he gets to the opening of my eustachian tubes; this area has consistently been red and inflamed. He looks down into my throat and vocal chords too, which he says looks fine. All he can think is that something is getting into my nasal passage that irritates my eustachian tubes. I'm just not sure how surgical tubes will fix the issue.. if anything it'll just bypass it for a little while.
So good news: most likely not autoimmune.
Bad news: dead ends.

In response to before, I have been unable to use steroids, other than low dose drops in my eyes, because my body overreacts, so prednisone has been out of the question. I have not tried ibuprofen long enough or consistently enough to see if that makes an improvement. I also can't imagine it being very good for my stomach or liver, especially since I've already been taxing my body with antihistamines and other medications.

 
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