Eustachian Tube Dysfunction - my experience, can you relate to it?
Posted , 7 users are following.
I wondered if any of you relate to my experience with ETD.
My story started 1.5 years ago when I was visiting Amsterdam where I had a massive head cold. Shortly after returning, I was diagnosed with sinusitis and middle ear infection at the A&E visit.
Some symptoms persisted long after, such as fullness behind the ears, being light headed, some pressure behind nose and sometimes forehead. No hearing loss or muffled hearing other people might experience. Last March I had - privately done- full sinus scan, even brain scan done by suggestion, all came back negative. I didnt even seem to have any issues with my sinuses according to the scan. I dont have polyps etc. I was told at that time the mucus in my sinuses get inflamed causing these issues I experience.
Then I went - via my private healthcare - to see one of the best ENT specialist in London in March/April last year. After getting further small tests done such as a hearing test and an endoscopy, I was told no issues were found that would suggest anything serious. It must be Eustachian Tube Dysfunction. I can either wait for it to go or if it persists I can get a dilation treatment done. But the specialist woudn`t suggest that unless it is unbearable and affects the quality of my life.
From May until November last year, I had NO issues, the symptoms seemed to have gone but came back again after ( presumably) getting a cold end of last year. Symptoms are much milder that they were last year, again it comes in waves, some pressure behind ears, forehead and being light headed. Also interestingly, I don`t have any issues outdoors, only indoors. I can go days without having any symptoms and it suddenly comes back. I can also hear fine, no constant ringing in ears etc.
Can anyone relate and experience similar problems?
What I found out so far is that neti pot do help a lot. Nasal sprays and antihistamines seem to make it worse as I feel the ear pressure more. I even bought the famous ear popper device but again seems to make it worse as my ears feel more blocked.
Like many of you, I also thought these symptoms might be psychological but nothing explains that, it doesn`t fit migraine attacks either.
Thanks for your input.
G
0 likes, 15 replies
michael11955 Gabe81
Posted
I've had mine for nearly 5 years.No actual pain,but just huge pressure in the head. I've had xrays & . MRI scans which show zero .All I've had from the doctors is that I should be thankful that nothing nasty isn't there, I am thankful for that, but in fact none have them have a clue as to what it is. My own GP readily admits this.If you care to look back on this site & read my own & other people's remarks you'll probably come to the same conclusion that I have.
If it's not on the screen & we can't see it,then it must be just in your mind.Live with it.Tough.
Gabe81 michael11955
Posted
Thanks for your input.
I must say what struck me visiting 2 ENT specialists over the last year is just how underdeveloped & limited this field still is both in the tools they use and prognosis wise. Then I realized that most of them also do plastic surgery where the real money is so when someone like us go to them with sinus issues you are not taken seriously and the field hasn
t had to advance on it frankly. Ill wait and see how it goes for me, a lot of times I have zero symptoms which might suggest I only have this after a bad cold and over time it goes ( mucus is not inflamed). But if it bothers me in the long run, Id definitely look into the dilation option as it would be covered by my private health care. At present, my ENT specialist only does it with general anesthetics which Im not keen on. But I also read some people had it done with local anesthetics just fine. As I understand it the letter is not prefered as the procedure - albeit a routine one - is awkward. But again this is still a procedure specialist are learning of every day.Have you heard of the procedure?
G
michael11955 Gabe81
Posted
[m in the U.K. & after a few consultations with my own GP & two specialists none of them will contemplate surgery on the basis that they can't see anything to deal with on the scans.
From other patients like ourselves their stories are very similar to ours.A few who claim that they've had surgery have told me that the difference it makes is minimal & doesn't last
noluck786 Gabe81
Posted
Your story is similar to mine. It started with a cold that my grandfather gave to me. I had this cold for maybe 1 week. On day 4 i started to feel like i was tilting to one side while walking and my ears were ringing. The ringing in the ears has never gone away. I did not have tinnitus before this cold my ears never rang in my entire life. I never had bad ear infections as a child. My ears still ring 3 years later and my ears pop every time i swallow. I'm not joking EVERY TIME i swallow my ears pop. I also get fading tinnitus where one of my ears will ring loudly and quickly go back to normal ring. I experienced an off balance sensation for the first 3 months after my cold and felt light headed sometimes and terrible. I think my brain adapted to the restriction and now the only time i feel off balance is when I am very tired. The doctor prescribed me prednisone but i never took it because I read the side effects and didn’t want to deal with it. Looking back on it i don't think it would have helped. I never had an MRI but i did have the scope up my nose and my Eustachian tubes were perfect according to the ENT. So that leaves no progress 3 years later my ears still pop and i have constant tinnitus. Normal everyday activity masks my tinnitus but i hear it at night and when the room is quite. I just learned to live with it and accept that it’s never going to change. I do worry that I might lose hearing as I age or my tinnitus gets louder and that is depressing to think about.
nicolas14813 Gabe81
Posted
Hi Gabe.
I have experienced the exact same situation as you. The most striking similarity is that I have no issues outdoors but only indoors.
I have been diagnosed 2months a go for sinusitis/bronchitis, my sinuses were clogged at nose level, but no pain anywhere. Just felt like air wasn't flowing through. Got prescribed some meds and it didnt get better.
About 1.5month a go, after starting neti pots rinces, my nose level sinuses started being better and felt less clogged but since that time, my ears have started to feel pressured.
symptoms are:
Sensation of fullness behind ears (ear pressure). Like in an airplane.
I have zero pain, just the pressure. The only pain i have experienced was about 4 days of heavy ear pressure that went up to the forehead causing headache.
I am occasionally light headed when I stand.
I do not get the ringing, vertigo or hearing loss.
I also get waves, like last week I felt great and this week the ear pressure is back.
If I'm stuck indoors for a while, I step outdoors for 2 minutes and I feel completely fine.
I am starting to think it has to do with allergies as I watch pollen levels and when the tree pollen is high, I feel pressure. Last week, tree pollen was low and I was fine.
Why indoors though? it can be anywhere, grocery store, home or pharmacies, just indoors. Does not fit with allergies.
Gabe81 nicolas14813
Posted
wow yours is exactly what I have. I'm hoping we can work this out together here and can help each other. Your suggestion on allergies might be right, indeed it has gone slightly worse in the last few days it seems. Comes in waves, I seem to be totally fine when sitting or not moving erratically, and I also don't seem to have issues in the morning only from around 11-12 am.
I had a phone appointment last week and I got some nasal spray - which doesn't help much - and I have a follow up appointment where they will hopefully refer me to have a full allergy prick test done. I'm more and more suspicious as well that something agrevates my sinuses and it gets inflamed. I want to get to the bottom of it.
nicolas14813 Gabe81
Posted
Same for time of the day. The worse happens from 11AM to 2-3 PM.
I have monitored daily my symptoms with pollen level.
If you want to explore that correlation, I advice you also keep an eye on pollen levels and see if you can see a pattern. Where I live, there is good data on which type of allergen is present in the air. I have seen direct correlation when deciduous trees pollen is high. The ones that have been really high when I have had bad ear pressure were Birch and Oak pollen.
When conifer pollen is high (usually a warmer couple of days), and deciduous pollen lowers, my ears seem to have relieves.
For example: today was a good day and I've checked the pollen levels in the afternoon to make sure my correlation works : Oak was low, Birch was medium and Conifer was high.
For the whole of last week, oak and birch were low all week and Conifer was high. I was great.
Two weeks and three weeks a go, oak and birch were VERY HIGH for the whole 2 weeks, conifer was low. My ears were popping out of my head. My forehead was also pressured.
Tomorrow, the pollen prevision is low oak and low birch and high conifer. I'll come post how I feel in late afternoon.
Gabe81 nicolas14813
Posted
I will not say anything until I get a full allergy prick test done now. I thought of everything too including specific allergies, but tree allergy makes no sense if this only happens indoors, as soon as I
m outside, Im fine. I work on the 4th floor in a city building office where there is no windows just A/C. Thats where I experience the symptoms more but sometimes at home too. As soon as Im outside on my break, Im FINE again. Have you heard of this? https://www.nhs.uk/conditions/sick-building-syndrome/ My ENT specialist still maintains the only thing he can think of is Eustachian Tube Dysfunction and totally ruled out allergies. Now Im pushing for the allergy test so I can rule that out too 100%.Gabe
nicolas14813 Gabe81
Edited
I am 100% with you on the fact that it makes no sense that pollen would be at cause if it happens only indoors and when I step outside I am fine. This is why I am on this forum looking for answer.
One thing is clear though: We experience exactly the same symptoms.
Facts: Allergens are there even if there is literally no trees in a large area. The air quality monitoring station I get my data from is downtown Montreal, and catches high level of Birch pollen. There is no Birch tree on Montreal Island. Mostly every A/C except the classic window mounted A/C actually drags the air from outside. Which means all workplace buildings A/C is actually cycling outside air for inside air.
However, I am not confident enough to rule it out as the cause.
Thank you for linking Sick Building Syndrome (SBS), I had never heard of this. I just read on the subject on a couple of places and I think it's important to mention that a couple websites mention that people that suffer from ALLERGIES or asthma, or respiratory illneses are more prone to experience severe symptoms of SBS.
If that is effectively the case, I understand that having an existant sinus inflammation would trigger more severe symptoms of SBS. Now, would it not be possible that during pollen season, our sinus are already somewhat inflamed to an extend. Outdoors (SBS not kicked in), we might not even feel that our sinus are inflamed due to very minor allergic symptoms, but as we step indoors SBS kicks in and we get those inflated symptoms?
Thank you for keeping me updated with your medical follow ups. I am about to call my doctor monday to get a specialist appointment as well.
Gabe81 nicolas14813
Posted
Definitely keep in touch yes!
In terms of allergies, about 20 years ago I had a prick test done and it came back that I was allergic to hay ( which I had many symptoms of since I lived in the countryside) but since I live in England it hasn
t bothered me much or at all. This is definitely a strange phenomenon as I dont know anyone with similar symptoms ( this is nothing like the hay allergy I had 20 years ago) like us although people do experience different symptoms of the same allergy I suppose.Last year was definitely the worst for me after I had the sinusitis/middle ear infection in January/February. My ENT specialist ruled out any allergies which I was baffled by. I had every test done under the sun even the Eustachian Tube test that came back fine but he explained that mine can open and close quickly hence I experience the symptoms I do. He said it is very likely it will go away, I just have to be patient(I know people who said it took them a year or two) or get the dilation done if it really bothers me.
On one hand if it is Eustachian Tube Dysfunction, I don
t seem to have the typical symptoms for that and if it is not allergies than how come it comes and goes daily/weekly? For instance I had ZERO issues from last May to November. It doesnt make sense.Gabe
michael11955 Gabe81
Posted
Hi Gabe my condition is more or less the same as yours.The pressure in my head is huge at times & is now affecting my hearing badly. Like you I have pressure but not pain. On rising very slowly from an armchair I still get dizzy & unsure on my feet. I've had xrays & MRIs all of which tell the doctors & specialists that I do not have ETD. What I have got has not been diagnosed after 4 years. The best that they can come up with is that I should be greatful that there is nothing worse there.
mary09608 Gabe81
Posted
hi, all. my symptom is a little different but somewhat similar. apart from the pressure and ear fullness you are describing, i feel a hollow grinding sound in my ear every time i move my jaw.. my GP doesnt think its TMJ because i have no pain, and he diagnosed me with ETD. its been horrible for a week. every time i chew i hear my own jaw moving and grinding away near my left ear. it drives me crazy i cant focus on anything anymore, please help
wendyJP Gabe81
Posted
Hi I can identify with a lot of symptoms on here. Mainly pulsatile tinnitus in one ear which can be loud, quiet or not at all. It is worse at night and only happens indoors, never outside. My ear often feels full and I get ringing at times and squeaking when I blow my nose. Lately I can feel light headed.
It all started last July when I was also having anxiety issues with tight throat and clamped jaws. Ive had an audio test, mri and examinations and have been given a steroid nasal spray. The symptoms go off sometimes for several days, a week or even a fortnight but then it starts up again. It's wearing me out!!
dangerousdan Gabe81
Posted
Hi there Gabe81.
Ive recently worked though my ETD issue so thought I'd post and see if anything I say might help you.
You've said your hearing test was normal, did you have a tympanogram test or did the doctor mention anything about negative pressure in your ear or a retracted eardrum? Is the middle ear clear of fluid?
You've said the nasal rinse helps, does taking a steamy shower help as well, and what about if you take a decongestant tablet eg Sudafed? When I was trying to solve my problem I found a steamy shower dissolved some of the more sticky mucus inside my nose and eustachian tube openings and allowed things to clear a little.
I have also been prescribed a steroid nasal spray called Avamys which contains fluticasone furoate. Within a couple of weeks of taking this I noticed my nose was dryer and my eustachian tubes began to move around a little more. I don't have any allergies either, but clearly there is/was an inflammatory issue somewhere because this spray helped.
Its not clear from your post whether your main issue is with your middle ears or with your other sinuses. When you pressurise your nose air should be pushed up the eustachian tube to inflate your middle ear but it also should easily pass through cavities into your other sinuses in your face. If you think the main issue is ETD, then I would suggest stepping up the manual ear popping attempts and see what happens. It might feel that your ears are fuller at first but that may be because you've become used to the negative pressure in your middle ears. My attempts at solving my problem have all focussed around getting the eustachian tube working better and ensuring I get regular middle ear inflations, and if you can do this better you won't need the dilation procedure anyway.
Gabe81 dangerousdan
Posted
Hi, thanks for your suggestion & advice.
All sprays or tablets seemed to make the issue worse, I did try the spray you mentioned and did nothing. Every time I had scans ( apart from the A&E visit initially), different examinations done - even when I had symptoms - I was told my sinuses looks great, in fact they look like I didn`t even have any infection.
Currently I have zero issues - don`t want to jinx it - and it seems only to come out during the cold season or at work where there is A/C which presumably - only a working theory - dries out the mucus in my sinuses causing the symptoms I stated as it can not drain properly.
My ENT doctor thinks it is a stand alone Eustachian tube dysfunction that was brought on by an infection but it is now not accompanied by anything.
I
m actually getting a scan done in the next few weeks ( hopefully the last) of my sinuses again and my doctor said he can definitely treat the eustachian tube dysfunction. Without going into details, he said there are a couple of options available. Im hoping it can be done in his office with local anesthetics.AS a lot of you, I also thought it might be psychological but the truth is, nothing explains that as I only have symptoms during the cold season. If it was migrane etc, would it not come out randomly any time of the year? Why only between November and March?
Since I have long periods when I
m symptom free, Im tempted to just forget about it but when it comes out it is very bothersome, especially at work ( I`m working from home due to Covid now thankfully so it is much more manageable if it comes out).Let me know your thoughts.
G