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Eustachian Tube Dysfunction?


#1

Greetings all…it has been awhile.

I am still fighting the good fight, still searching for that “magical” purple pill that makes me all better. :smiley:

In the meantime, I continue to work at the hospital in my hometown and research whenever possible. Fortunately, I am able to work…able to go have fun, etc. I just want my “normal” life back…just like the rest of you! :stuck_out_tongue:

I hate to label myself as “different” from everyone here, as everyone is dealing with their own anatomical and neurological issues.

However, one thing always stands out for me that I just do not hear a lot about on this forum.

I have complete and utter ***Eustachian Tube Dysfunction ***

I have to lightly do the valsalva manuever over 500 times a days just so I can hear out of my ear. It will be “full, plugged, etc” with perhaps 90% hearing loss. As soon as I do the valsalva…the hearing goes up to 100%. (I know, just bizarre???) This happens with both ears.

When the bazillion doctors look inside my ears…they all say the same thing: “Eustachian tubes look great…nothing wrong there”…Grrrr :evil:

So…where to go from here??? In my heart of hearts, I feel like this is somewhat of an anatomical issue, maybe compounded by MAV, but who the hell knows anymore???

Anyone else deal with having to clear their Eustachian Tubes 500-750 times a day??? If so…where do I go from here?

I don’t want to say that money is not an issue…but traveling in the United States for care is not really an issue. I have the time, the funds, etc…I just want to get better :mrgreen:

Peace out,

Todd


#3

Hi Todd,

I haven’t been on this board for a while, but it’s quite a coincidence that I should happen to check in today. I say that because I had PE/ventilation tubes/grommets put in both my eardrums earlier today.

My eustachian tubes have been intermittently clogged ever since my dizziness started a couple years ago. (They pop and click and generally feel clogged-up.) I hurt my neck, which I believe furthered my eustachian tube dysfunction. (I have had problems with my left ET and light tinnitus in that ear for many years prior so I believe I am prone to ETD. It got much worse after my neck injury, however.) A few weeks back, my neck pain came back after throwing a baseball with my son and also slipping & falling on a wet garage floor that same day. The dizziness started to come back. A couple weeks later, I felt like I was getting a sore throat and opened my mouth really wide, tilted back my head & dropped the back of my tongue so I could get a good look at my tonsils in the mirror. Immediately, my left ET clogged up, and the dizziness was back the next morning the worst I’ve experienced to date.

I found a new ENT, and he told me that he has had people with ETD whose dizziness has resolved with tubes. For that reason, he put them in both sides as an experiment. I must say that the strange sensation and altered hearing from the tubes is annoying, but it’s nothing I can’t live with for 6 to 12 months until they fall out. Interestingly, the machine that’s used to measure ETD (a tympanogram??) indicated I did not have ET issues. However, the ENT told me today that both ears were retracted (by negative pressure in the middle ear) and fluid came out of the left ear when he made the hole. I’m not holding my breath that this will work since I had just the hole (myringotomy) put into just one of my ears last fall. While I seemed to be better initially, it may just have been a coincidence. This time, I’m trying both ears so there will be no doubt there is equal pressure on both sides.)

I’m mentioning this because I read several articles written by an Australian ENT who states that a person may have slight ETD that can impact the inner ear although it will not register on the general tests done in most clinics. Apparently, there are other pressure tests that can be done (maybe in a University/lab setting?) that are more sensitive in detecting ETD. This article was written in 1999: tinnitusjournal.com/imageban … 5n2a08.pdf The author has published additional articles on this subject since then as well. I tracked down a clinic in Brisbane that was affiliated with Dr. Franz. I wanted to find out if he had any recent thoughts on the subject, but the clinic emailed me stating Dr. Franz had retired a year ago.

Also, read these posts written by someone on a sleep apnea board regarding this thoughts on the relationship between ETD and dizziness as well as possible increased intracranial pressure while breathing out in someone with obstructive sleep apnea: apneasupport.org/post-126486 … lva#126486

Here’s an excerpt:

      "I made a few searches, and found in an hour or so an interesting article from Dr. Hain. This is an article about Perilymph Fistula (PLF). In this article I found this passage:

       “A closely related condition is "alternobaric vertigo". Here dizziness is associated with a difference in pressure between ears. This condition remains difficult to document. Some patients with sleep apnea on CPAP may have vertigo due to this mechanism.”

      "I could not get contact to this doctor, so I started to read about “alternobaric vertigo”. This is not an illness but more a phenomenon. This phenomenon is very known by divers, and occurs when you have one blocked Eustachian tube. (This is a tube from the back in your nose to the middle ear. This tube is used to equalize the pressure in the middle ear to the pressure outside your body). But if the pressure difference between the two ears (the middle ear) exceeds 45mmHG then this phenomenon occur." 

You should read through all his comments detailing his experience with dizziness. Although it’s just someone else’s anecdotal report on his experience, it’s still quite interesting…


#4

I have ETD too - my right ear got so bad that the ear drum nearly burst from being bowed so tightly. I almost had to get the incision done. Nasal steroids have really helped me out, though I do still have problems here and there. The valsalva maneuver does nothing for me - too much inflammation to do anything. I’m not sure what to say about them not seeing anything, as mine is always pretty obvious when looking inside my ears. Have you been to an ENT? If no one has answers for you, and you are willing to travel, there are a number of highly regarded specialists across the US - Dr. Hain’s office in Chicago is one that comes to mind. For some reason I am drawing a blank on the other US facilities right now - major brain fog today.


#5

Todd, have you been tested for allergies? I’ve been told that allergies is the number one reason why someone might have ETD.


#6

One of my main symptoms now is ear fullness in my right ear, it drives me crazy,ive done the valsava manouvre and i can only get my left ear to pop, im now thinking i may have ETD on the right side caused by MAV, Im also thinking it may be hydrops as on the ECOG i tested positive for it in 2 out of 3 tests, but they think that test is inclunclusive

the last GP I seen suggested i was imagining it!


#7

Very, very interesting feedback. I appreciate the input guys!

A couple pieces of info which I failed to submit with my original post:

  1. This whole “fun” ride started approximately 8 years ago when I was snorkeling with my wife in Hawaii. I was not diving down deep, probably at 3 feet tops. However, I came to the surface and let it commence.

  2. During this timeframe, I have become a “snorer”…much to my wife’s liking :?

I have always felt that my issue was anatomical in nature when I would self-analyze what was going on with me. To have your ears changing pressure CONSTANTLY and to have to lightly do the valsalva on my right ear about 500 times during the day tells me something aint quite right in there :o

Every ENT that takes a look says that the E.T. look just fine though.

I have tried tubes to no avail.

I have had Perilympth Fistula surgery in an effort to see if a tiny hole was created during my snorkeling.

I have tried MAV medication…I was known as the the kryptonite to these meds as I could take an elephant dosage and have it not even effect me.

One other important note: When I lie down flat, things get exponentially worse for me. I do not know what this means (if anything)…just some more data for you guys to chew on.

Thoughts?

Todd


#8

todd have u ever asked your drs. if doing valsalva is safe? doing that can actually cause a fistula…or if u have one it could make it bigger or prevent it from healing. i have had terrible etd but it was a tmj issue and with taking a benzo at night that has really helped my ear pressure issue- they also do a nightguard and antiinflamatories and steriods- these last 2 worked the first time i tried them but not after that for some reason. Popping your ears can cause inner ear damage for some reason that isn’t common knowledge and ent’s recommend doing it despite this risk.


#9

Thanks Sara,

Yes, I do recognize the risks of this. I try to be as careful as possible and ever so lightly do this, just to open up my ear so I can hear. It is really bizarre…my hearing will go from nearly deaf in that ear to 100% hearing right after “opening it up”.

Another point of interest:

During the day, I will get periodic “breaks”, where I get a pop in my ear or the tone of my tinnuitis changes. As soon as this happens, my disequilibrium / dizzies get better immediately. It will last a whopping 10 seconds or so…then back to the “full ear syndrome”.

I don’t know how to describe it, but it does give me hope to know that something changes anatomically and then I feel better, albeit for a very short time.

Only the right ear opens up for me…left one is shut down and does not open up and the hearing is horrible in that ear.

That being said, both ears act goofy with regards to pressure changes, etc throughout the day.

Ugh


#10

did they say anything about hydrops causing this? ur case is complicated like mine…what diagnosis have u been given?


#11

Menieres, MAV, Hydrops, Vestibular Neuronitis, Perilymph Fistula…uhhhh, I could keep going if you want. :lol:

Basically, everything has been thrown at me and I have been seen by over 10 physicians / hospitals.

I think at this point I am stepping back a bit and trying to listen to my body. Sometimes, I think we forget that we know ourselves better than anyone else.

I have always thought that my issue is somewhat an anatomical one in nature. What that anatomical abnormality is, I just don’t know.

The constant, constant, constant pressure changes, ear drum acting weird, popping, etc leads me to believe that there is something going on with my E.T.???

t


#12

yea maybe you are having muscle spasms that control your et i feel like i have heard of something like that before. i wonder if something like a muscle relaxer could help with that? i think mine were so tight and that is why the benzo at night helps me, but yours seems so active? i wonder if maybe even a dentist would know? has anyone told you that u have tmj?


#13

tested…no TMJ.

also, i already take 2 tablets a day…2 mg a piece of Klonopin

todd


#14

klonopin isnt a muscle relaxer flexeril and baclofen are muscle relaxers. not sure its odd that it keeps changing constantly like that? have u found anything that has helped any of your symptoms? do u have unsteadiness when u walk?


#15

Hello Todd,

How are things today?
I also have a “complete and utter Eustachian Tube Dysfunction”.
Things got much, much worse for me when mav kicked in couple of years ago.
I have some other ear-problems as well (tinnitus etc). All on the same side of my face.

Ellis.


#16

Hello todd,

I just HAD to respond to your post:
Yes i have ETD !

I also find it difficult to find info about a mav-etd connection.

I KNOW my eustachian tube is involved because when my ear is more stuffed/closed/more pressure and noise, my mav is worse (also with summer going on i believe). And i KNOW my tube isn’t functioning well because i can feel any car passing on the road, any door closing etc.
All left side face.

I have allways been etd-like, but it worsened at the same time mav kicked in…

How are things now todd?

All the best,
Ellis.


#17

same…nothing changes. there is no med, sleeping pattern, etc that will change this.

it is the life i am destined to live and i try to make the best of it

todd


#18

hi todd,

i was just wondering if you have ever heard of/seen online the device called “the ear popper?” i am hesitant to recommend it based on my personal experience, however, it is fda approved and others have found it helpful. I’m just curious if you had tried something like that and maybe that would help you ears to stay open for longer? again i didnt have a good experience which is why i am hesitant to recommend it but everyone is different and it sounds like u have literally exhausted all options?


#19

Hi Todd, everyone,

I have such awful tinnitus and ETD! I find that sometimes a low sodium diet seems to help, my valium does a bit too, and antihistamines. Before the VM I used to be able to take Gingko. Not anymore! Wow that really messed with my head. I might be able to take it every other day, or something like that. It helped with the tinnitus which is so loud sometimes I can’t hear other people talking :frowning:

Not sure if I want to go the ear tube route, but it’s a possibility I will consider.

Anyone else ever take something for tinnitus? An herbal supplement or something? Anything?? :cry:

I am feeling a relapse coming and this is one of the symptoms ramping up. Crap.

K


#20

Hello Everyone;
Read the book head your headache 1 2 3. Dr Buccholz talks about ETD being caused by swelling due to migraine activity. Prior to learning about MAV, I would often we put on weeks of antibotics because of ETD dsyfunction. I would get sinus and forehead pressure and my PC doctor would tell me I have swelling. Looking back during these times I was also slighly off-balance. When I am having a silent/migraine, I feel the pressure in ears and ET.
Just some input. I believe its all migraine related.
Lisa D


#21

That is interesting Lisa .

My etd appeared after my migraine event back in November 13, I was wondering if a grommet would help with etd, it drives me crazy having the pressure/fullness in my right ear 24/7,