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Old 01-30-2011, 05:19 PM   #1
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Question Need some advice on Eustachian tube dysfunction.

Hello all!
I am a very frustrated 23 yr old girl! To give a little background info, about 6 months ago I had fluid in my ear, and couldnt hear out of my ear. Was on antibiotics, they didnt work and had to be put on a different antibiotics. Soon after, I realized my ear was still plugged up and couldnt really hear out of it. I decided to go to an ENT, and he told me to "plug my nose, and blow" and it should pop. My high frequency hearing was a little off but all my other hearing and pressure in my ear was normal. I decided to get a second opinion, since my ear kept popping, and my hearing was still muffled. The second doctor said I had ETD I was put on Allergra D? and a nose spray for a month. Neither made any type of difference. On my follow up visit, I took another hearing test, and my high frequency hearing actually improved and both times the pressure in my ear was normal. Since it improved the doctor now thinks its not ETD, its a problem with a nerve in my ear. He no longer gave me any medicine, he said I needed to wait it out and eventually I would get used to it, and hopefully it would get better, because their was no way to "fix" it. My question/concern is, my ear constantly pops, and sounds muffled. I can hear myself breath very loud, and my hearing is sometimes sensitive to loud noise. I have been reading up online about ETD and the more I read the more I think it is ETD. I also read that it can be extremely painful to go on airplanes with ETD, if its not treated, which I am going to be traveling in a month 1/2. Does anyone have any advice for me? Should I talk to the doctor about having a ventilation tube put in my ear? Should I ask to be put on more medicine and see if that works? Does it sound like ETD or could it be something else? ANY advice would be much appreciated!

 
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Old 01-31-2011, 11:27 AM   #2
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Re: Need some advice on Eustachian tube dysfunction.

Hi, I understand your frustration. I just went through 48 days straight of Eustachian Tube Dysfunction horror show. It started with a flight I took when I had a cold, then progressed to a middle ear infection with fluid. The fluid went away after antibiotics, but I was left with clogged ears, pressure, and ear ringing so bad I thought I was going out of my mind. A few nights I hid in the bathroom and wept and wept, which only served to clog my ears even more! I cut back severely on my social activities because I couldn't sit there and focus with my ears ringing, my head buzzing, and my tubes so plugged I couldn't hear half of what anyone was saying. I'm relatively young, and I began to suspect this would be how my life would go from now on.

But...on day 48, my ears FINALLY opened, the ringing went almost completely away, and I could hear again! I feel like I've been given a new lease on life. Seriously!

Here are the things that helped me...please note that consistency is key to make it work, so you can't skip steps or you'll lose ground in your recovery. Also, I am NOT a doctor, so *please* check with a physician before trying anything new. I can't say this will work for you, or how long it will take, but I was told that ETD can take weeks and weeks to resolve, and boy, they were not lying.

--Flonase nasal spray 2 sprays each nostril, 1X day...visit the link below to see a diagram and explanation of how nasal sprays help ear congestion. This site will also show you the correct way to use a nasal spray to help your eustachian tubes, because otherwise you'll just be helping clear your nose! I was using my Flonase completely wrong at first because I had no idea there was a special way to spray it! I actually had no clue how a nasal spray could help my ears, until I looked at this site and figured out the anatomy of the middle ear and how it connects to the nose.

< edited >

--Sudafed PE 12 hour, 1X day (VERY HELPFUL! But take with food and water to avoid feeling dizzy!) This is the behind-the-counter stuff that contains pseudoephedrine. If your state has restrictions like mine, you can ask your doctor to write you a prescription so you can get it without hassle from the pharmacist. I like the 12 hour time release version, not the 4 hour, because the 4 hour kind made me really dizzy/woozy

--Neilmed Saline Sinus Rinse, 1-2X day...this is not the most pleasant thing to do, and I avoided it for a while, but finally caved in to my doc's pressure and bought it...it does help!

--Avoid dairy products, especially milk, because they can lead to further sinus/nasal/ear congestion

--Warm showers...the warm steam can help open your sinuses, which in turn helps lower swelling that keeps eustachian tubes blocked

--Try throughout the day to gently pop your ears using the Valsalva maneuver...gently!

--Chew gum/suck on hard candy and/or yawn throughout the day

--Last thing...what caused my ETD to totally turn around? What made me feel normal the very next day? AFRIN...that's right, the plain old nasal spray you can buy at any drugstore. On a tip from a friend, I tried it one evening...spraying it in my nose trying to hit the E-tubes. By morning, my ears were open. I wanted to sing. I wanted to dance. The ear ringing was/is almost gone, too. Now here's the BIG caution...DO NOT use Afrin for more than 3 consecutive days in a row. It can and will cause a rebound effect that will make your condition worse. (You can Google "Afrin addition" and see what I mean.)

Since my ears opened, I've continued all the things I've written above, and only had to try Afrin once more on a night when I felt like my ears were starting to close. I will not even try using it twice in a row, I'm so scared of "Afrin Addiction."

When you fly, you can take Sudafed and use Afrin spray, chew gum, and wear special earplugs (I think they are called Earplanes?) to help keep your tubes from going haywire. You can read about it by googling "flying with eustachian tube dysfunction." I'm flying in about 10 days, so I'm getting prepared to do everything possible to keep my recovery intact.

Again, it took 48 days for my ears to unclog after this ETD nightmare started. But you can get better. I know people rarely revisit the boards to let everyone know they're feeling better, so much of what you read are accounts of people in the acute stages of their illness, and it can be scary. I've also read that if none of the things I mentioned above work, then prednisone can be tried. And if prednisone fails, ear tubes/grommets are sometimes used. But prednisone has some nasty side effects. And if surgery can be avoided, you should avoid it, because I've read quite a few stories of adults having trouble with their grommets.

Alright, hope this helps...feel better soon, have a safe flight, and don't worry!

Last edited by hb-mod; 01-31-2011 at 01:19 PM. Reason: Please do not post unapproved website links- Posting Policy. (Some "Approved" websites in "Resources" tab- bottom screen)

 
The Following 2 Users Say Thank You to jenni9033 For This Useful Post:
bebe1461 (02-01-2011), rwood73 (03-08-2011)
Old 02-01-2011, 08:20 AM   #3
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Re: Need some advice on Eustachian tube dysfunction.

Wow!! I am so greatful for your response! Thank you! I just called the doctor to see if he could put me on any type of medicine similiar to the one I was on before to give it a second try. I actually went to walgreens yesterday so scope out the list you gave me.... and I noticed about 6 different types of afrin. Can I ask what kind you used??

 
Old 02-01-2011, 10:19 AM   #4
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Re: Need some advice on Eustachian tube dysfunction.

Hope I can help! If I can help someone avoid the horror show of prolonged ETD, it would be so awesome.

The Afrin I used is actually the generic version from Safeway. It's "Original Nasal Decongestant -- Oxymetazoline Hydrochloride 0.05% 12 Hour Spray." 2-3 sprays in each nostril, up to twice a day. I only did 2 sprays in each nostril in the evening, and that's all it took to clear my ears...it was the first time in weeks that I was able to sleep with an ear to my pillow.

It's been almost a week, I've only used the generic Afrin twice, and I feel so normal that I rarely think about my ears anymore...this after constantly obsessing about my ears and wondering if I would ever feel okay again.

My right ear will probably always be a little "off" -- it has mild high frequency hearing loss and a middle ear myclonus spasm/flutter that visits me a few days every month. But these are issues I've come to accept and basically ignore...the ETD, no way!

P.S. I am new here and didn't realize we could not post links, so the link I added was deleted out of my original post. But you can Google "eustachian tube dysfunction nasal spray technique" to find sites with detailed diagrams of the anatomy of the nose and ears. It's not the same method as using the spray to treat sinuses. Instead of spraying directly up each nostril, you put the nozzle in your nostril perpendicular to the face (nozzle pointed towards your neck/ears). Kind of awkward and not the most pleasant or cute-looking thing to do, lol. You take a light intake of breath at the same time you're spraying. Your goal is to spray and hit the opening of the eustachian tubes, where it connects to the nasal passage. All four physicians I saw never explained any of this this to me, so I used Flonase for weeks with no results, because all I was doing was spraying haphazardly up my nostrils and opening my sinuses and never even touching the E-tubes!

 
Old 10-26-2011, 05:10 PM   #5
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Re: Need some advice on Eustachian tube dysfunction.

I have ETD and had stents inserted in both ears. It did NOTHING to help with ETD but I flew for the first time in years with no problems.

 
Old 10-27-2011, 01:35 PM   #6
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Re: Need some advice on Eustachian tube dysfunction.

I am a 63 year old lady and have ETD or maybe Patulous Eustachian Tube Dysfunction. I have had all the antibiotics, decongestants, antihistamines and even sinus surgery and stents (tubes) inserted in both ears. Nothing has worked for my ETD. It's getting worse all the time. My euqilibrium is off, my head and ears feel like a balloon is blown up inside my head and I much more tired.

The one and only thing that has improved is I can fly without pain due to the tubes. However I find this condition very dibilitating and is so limiting in what I can do. I was very active prior to this affliction - downhill & water ski, swim, walk, curl, yada, yada.

I have read that having the stents and sinus surgery can make the situation worse - it has for me.

Hope this helps.

 
Old 01-02-2012, 08:26 PM   #7
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Re: Need some advice on Eustachian tube dysfunction.

hi bebe1461,

I'm also your age and experiencing all of the above! I know you posted this a while ago, but I thought I should let you know that I have had ear tubes put in and it was by far the worst decision I've ever made in my life. Did you go through with the surgery? Also, do you still have all these symptoms (seeing as you posted this months and months ago). I have been suffering with all of this for about 4 years now I'd say.. I've tried numerous meds, sprays, and the tubes, and nothing has worked for me.

 
Old 01-03-2012, 08:40 AM   #8
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Re: Need some advice on Eustachian tube dysfunction.

Hi there!
Sadly, I still have the symptoms and have almost given up on trying to fix it. The one doctor I saw told me to get a MRI of my head/ear canal to make sure it wasnt anything else, which came back normal, and other then that I just tried the allegra, and nasal spray. Neither of which helped, I was also prescribed some type of steriod at one point, which also did nothing. Its not that my ears hurt, or im in any type of pain, but its annoying... and if I have 2 ears I should be able to use both of them! Any luck for you? And why was the tubes a bad idea if I may ask?

 
Old 01-03-2012, 08:41 AM   #9
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Re: Need some advice on Eustachian tube dysfunction.

I have had the tubes in and the FESS sinus surgery. No better - much worse. I was given (through this website) the name of Dr. Lorne Parnes. He is in London Ontario. Saw him a couple of weeks ago. At least 5 other Drs. diagnosed Eustachian Tube Dysfunction. He couldn't believe I haven't had a cat scan. Looking into the possibility of it being Superior Canal Dehisence. So we'll see this month when I get the cat scan. If that's it - he can do the surgery here in Canada so I wouldn't have to see Dr. Poe in the U.S.

We'll see how this goes.

C.M.

 
Old 01-03-2012, 08:48 AM   #10
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Re: Need some advice on Eustachian tube dysfunction.

Quote:
Originally Posted by benmaggs View Post
I have had the tubes in and the FESS sinus surgery. No better - much worse. I was given (through this website) the name of Dr. Lorne Parnes. He is in London Ontario. Saw him a couple of weeks ago. At least 5 other Drs. diagnosed Eustachian Tube Dysfunction. He couldn't believe I haven't had a cat scan. Looking into the possibility of it being Superior Canal Dehisence. So we'll see this month when I get the cat scan. If that's it - he can do the surgery here in Canada so I wouldn't have to see Dr. Poe in the U.S.

We'll see how this goes.

C.M.
WOW! I dont know anything about that but im actually going to look it up after this, do you have all the same symptoms as etd?

 
Old 01-03-2012, 09:09 AM   #11
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Re: Need some advice on Eustachian tube dysfunction.

I think we're in the exact same situation...my ears don't hurt either, it's just the fact that they feel blocked or clogged and that the hearing is muffled. It really bothers me and I think about it everyday, I find it especially irritating when I'm in wide open spaces (malls, restaurants, etc) sounds are much more muffled in these types of places. I haven't had an MRI, my ENT told me to get a CT scan instead, but nothing came up. I regret the tube surgery for many reasons...my advice is to never get this done if you do not have any fluid behind your ear drum. My ENT told me beforehand that he couldn't see any fluid but we went ahead with the surgery anyways, and he never found any fluid in there at all. The tubes have only helped with the ear popping, I feel a bit of relief in the sense that they don't feel as blocked and I'm able to open them up a bit. But, they have caused me a lot of distress...for months I felt like I was underwater, i could hear a heartbeat "swoosh" in my ear (loudly), and its been about 8 months now, and they still haven't fallen out. I can hear myself talk inside my head, I can hear my own footsteps in my head when I walk, I can't eat chips or anything hard because its insanely loud in my head/ears so in order to understand people I have to not be chewing at the same time lol....its just brought on a ton of issues I didnt have before, on top of my muffled problem I already had. Apparently this all goes away when the tubes fall out but it's definitely not worth the hassle and depression over it. I have no idea what causes this muffled hearing... I've been told I have ETD but that's just too easy of an answer. There are numerous other reasons why you might be experiencing this and you just have to find it. It sucks because I hate to be dealing with this at such a young age... is loss of hearing in your family history/genes?

 
Old 01-03-2012, 09:43 AM   #12
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Re: Need some advice on Eustachian tube dysfunction.

Yep I understand exactly where your comming from with those symptoms. I cant sleep at night on my one side because I can hear myself breathing loudly, eating, the popping, its just ANNOYING!!! Nothing like this has run in my family, when I was little I always had ear infections, whenever I got sick, but nothing to this extent ever happend and it all started with an ear infection. go figure!Its almost as if my ear are sensitive to sound as well, if it gets too loud, it bothers my ears. I dont know what to do, I wish there was more that can be done to fix it, because at this point ive almost just lost hope that my ear will clear up. My doctor even told me at this point the longer you have it, you just learn to get used to it. I wish I didnt have to, but at this point I dont know what else to do!

 
Old 01-03-2012, 12:57 PM   #13
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Re: Need some advice on Eustachian tube dysfunction.

No loss of hearing in family. In fact, the tests do not indicate any hearing loss (only a little when there is a lot of background noise). I too am really bothered in large places (malls etc). I have more trouble with fatigue, equilibrium, concentration and generally feeling lousy. I sure hope it's SCD as Dr. Parnes seems to be the answer. However, Dr. Dennis Poe in Boston has helped many people with ETD & PETD so you can always go to see him.

Keep in touch.

C.M.

 
Old 01-03-2012, 11:00 PM   #14
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Re: Need some advice on Eustachian tube dysfunction.

I second the Poe recommendation. He has helped many. After over a year of ETD symptoms, many which overlap those described and a few that don't, I'm going to be headed to Boston for a consult in April. My ETD has improved somewhat with aggressive allergy control and bilateral tubes, but is still something that rarely gives me a free day.

Last edited by jenni9033; 01-03-2012 at 11:12 PM. Reason: Double posted

 
Old 01-03-2012, 11:10 PM   #15
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Re: Need some advice on Eustachian tube dysfunction.

Also, it should be mentioned that there are reports of recovery after longstanding ETD. One of my local doctors confided in me that his ETD (which was precipitated by an airline flight, as was my own) took about a year to resolve. The first 80% happening quickly, the final 20% taking "forever." He could not credit any certain thing he did to his recovery. Just the passage of time.

Last edited by jenni9033; 01-03-2012 at 11:16 PM.

 
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