No Improvement at all !

Hello Anne,

?I'm wondering when you were prescribed "Prednisolone Steroid tablets", which personally I've taken two rounds of it myself, did you have any symptom of Sinus Infection?  I don't think "Prednisolone Steroid tablets" itself cures ETD, but I could be wrong.  I still have ETD, that's why I gave my humble opinion.  So your ETD only occurs when your nasal passage is blocked?  When nasal is clear, do you still experience ear muffleness or "ETD"?  I am contemplating my next step in treating my ETD other than "Prednisolone Steroid tablets".  Maybe ear tube?  or Balloon Dilation?  Does anyone have idea on how to search for doctors who has performed these two procedures and were successful at them?

Cheers!

Morning JeanJL,

I haven't commented on the Patient Forum for sometime now, as I've

exhausted all the information that has currently helped me.

To answer your question.  I do suffer sinusitis issues and yes Eustachian Tube Dysfunction does get worse when I experience a bad episode.  However, I really don't think sinus is the whole reason why I suffer ETD.  I also suffer from allergies, both Summer and Winter.  I take a daily antihistamine called Cetrizine 10mg once a day, which definitely helps me.  I'm now trying to only take every other day unless I get a fit of the sneezes.  When ETD is really bad I've taken a 20 reducing course of prednisolone,  a weeks course isn't enough, has to be longer.  The Prednisolone shouldn't be taken too often, up until now I've had to have them every other year, or every 2 years.

I seem to have my ETD under control by using the Flixonase NASULE DROPS, not the spray.  I use them approximately every 4/6 days.  If I find one or the other of my ears get blocked I use the drops and within an hour I manage to pop them and I'm good for another 5 days.  If I leave off the drops for longer than a week both my ears block, quite severely, so it's best to keep on top of this problems and use them after 4/5 days to prevent them blocking.  Making a lot of mucus due to allergic reaction from whatever is the culprit with me.

My ENT consultant is happy me using the stronger Nasule Drops as and when, to try and keep this awful condition under control.

These Nasules can't be prescribed everywhere in the world, many people in other countries, such as USA are unable to get them.  I'm in England so am lucky.

Regarding the procedures Balloon dilation and Tubes my consultant won't use on me.  A lot of the time they're not successful and can potentially cause more problems.  Those on the Forum that have had

either one of these performed and been successful are very lucky.

I've been taking daily supplements of Quercetin and Bromelain, both of which are supposed to be good for our condition, they get rid of inflammation.  I also take Chelated Magnesium, as 80% of the population are lacking, which can cause all sorts of health problems.

Prednisolone do not clear up ETD, they only get rid of the inflammation that's causing our tubes to become swollen and stuck together.

I hope you find my message of some help.

Kind regards

Anne

Thank you for your wonderful reply.  Have you heard of MethylPREDNosolone "Medrol" which is just a 6 day course with each day reducing tablets (21 tablets total).  I've done 2 rounds of the above, which has helped nasal congestions, but my main ETD symptom that hasn't gone away is - [u]Pressure Tension Right Below The Earlobe on the Back of the Ear[/u] (you know the area where the ear cannel goes down to the ETube - I wonder anyone in this forum has experienced that Back of the Ear "Pressure Tension"??).  Does the "Pressure Tension" sounds like ETube is still inflamed?  Maybe my 6 days course is not as impactful as the 20 days course that you mentioned Anne?  

?During all these Prednisolone treatment, I never had "Tinnitus", unless starting 10 days ago (May 2018).  I wonder if it's due to chronic "Pressure Tension" for months, that eventually it built up to ringing in my ear.  I would like to find remedies to get rid of the "ringing" Tinnitus.  Any recommendations?

?Anne, when your ears are plugged, how much decibel (dB) pressure are you registering by the audiology during the hearing test?  I'm getting around 150dB pressure.

Anne you mentioned "Flixonase Nasule Drops", that's directly applying drops to the ear, not nasal right?  However, you mentioned it's not available in the USA, so what other ways could I alleviate Tinnitus?  

?I've heard Vitamin A helps, so does Zinc & Iron.  Thank you for sharing about Quercetin & Bromelain & Chelated Magnesium.

Praying hard.

Morning JeanJL,

I too have got Tinnitus, but only in my left ear.  Sadly, once you get it, it's unlikely to ever go.  I've had mine for over 30 years.  I must say since I've started taking the Magnesium it isn't as loud.  Stress can bring this condition on.  A friend of mine has suffered stress recently and now she has it too.  Tinnitus is extremely common and one doesn't have to suffer ETD to get it.  I'm sure mine started at the same time as my Eustachian Tube Dysfunction.

I've had several hearing tests, I didn't ask what the DB pressure was.  However, I was told that I'm missing all the high pitched sounds.  My ears always seems muffled as though I'm on a plane, but something I've got used to after all these years.  When I pop my ears the tubes open and for a few seconds everything is so much louder, then they close again.  Tubes are meant to open and close all the time.  If they remain open that is equally, if not worse than when they're blocked...dreadful feeling, but only happens to me every so often, then it closes again.  I forget what that is called.  You could Google that.

The Flixonase Nasules are for nose, not ears.  The drops seep into the eustachians tubes to unblock them.  I make a lot of mucus through my sinus issues and allergies, which also gets into the ET's.

ETD is such an awful condition, causing me several years ago to contract Bacterial Meningitis.  The mucus sat in my eustachian tubes blocking my ears for so long it turned bacterial.  It crossed the blood/brain barrier and meningitis ensued.  I lost the sight in my left eye and hearing down in my left ear, I suffer vertigo on lying down too flat and when lying on my right side....a very nasty episode indeed and can't believe I'm still suffer ETD after all these years, albeit I've pretty much got it under control for the past year.  I get paranoid about catching colds due to making the ETD so much worse.  Fortunately, I can't remember the last cold I had and I put that down to eating a good diet and taking supplements which include high dose of vitamin C.

Pressure you're feeling behind your ear is where the tube is blocked and yes I get that too.  I wish that the Nasal Drops were available to everyone to get some relief from this very debilitating condition.

Regards

Anne 

It's been 7 weeks and as of today there has been NO improvement, I'm beyond devastated. I've been told there is no test to show what's going on.....doctors diagnosis strictly by symptoms. Doctor did say I have a lot of inflammation....I've done the steroid nasal spray several times.....why the inflammation is not going away is baffling.

I have never had sinus problems, allergies, ear infections....all my life! Just caught a cold last November and the nightmare began!!

I am sorry ...you flew all that way from Honolulu!!  Did you have to pay twice?  The medical staff did not do any pre-op work-up before determining you a candidate, just by symptoms of no ENT problems except that cold last year?  A bit extreme and scary.  Any further communication to a next plan or what to do?  Do you feel worse or better than before?

There can be other causes for ETD which you likely already know, such as -Silent- acid reflux?(different than heartburn)... do you have issues with food or sleeping in any way?  There's been a lot of environmental changes, constant new super-bugs and drugs that seem to be seriously affecting the important healthy bio-film mucosal barriers in all areas of our body that we require for protection.  - V. 

I had been to 4 ENT doctors here in Honolulu and they diagnosed me with ETD. I went 5 months doing everything prior to the dilation...neti pot, steroids, antihistamine....doctors won't do the dilation until you exhaust all other options.

Yup!! It was costly.... airfare, hotel, car etc...plus the dilation and all the co-pays. TWICE.

I feel the same....no changes. I have no health problems...on no medication.

Very upsetting.

Morning ,

That's all it takes is to get a bad cold for it to affect your Eustachian Tubes and cause ETD.

Why hasn't your doctor thought of prescribing Predniosolone Steroid Tablets.  They will sort you out and rid your of all the inflammation.

I can't believe how many times I've written on this Forum that they are essential for people that have had ETD for a long time.  You have got mucus suck in  your tubes.

Having suffered this condition for well on 40 years, I know what works and what doesn't.  It's good that you don't suffer Sinus or Allergies, as that's the cause in my case.

I guarantee if you ask for a 20 day reducing course of Prednisolone it will clear your ears and you should be back to normal.

I used a course in April and my ears have been clear ever since.  I do use Flixonase Nasule Drops they are slightly stronger than the regular Steroid Nasal Spray.....but even those I haven't had to use for 4 days now. If you're in the US you won't be able to get them.  I'm in England.  If you too live in England ask for those too.

I know how awful this condition is and no one can put up with it for weeks and months on end.

Please ask you doctor and get yourself sorted.  Prednisolone is given to people that suffer severe inflammation if they've got Rheumatoid Arthritis, they couldn't cope without them.....two of my friends have been on them for several years now for this condition, that is so very painful.

You will only need a quick sharp course.  Because your ears have been blocked for a couple of months, you will need to take enough, as a weeks course will be no good.  As I've said I'm prescribed them every 3 years when my ears block so badly and usually get a perforation too with the bad pressure on the eardrum.

Let me know how you get on.

Regards Anne

I have never really conversed on blogs before but I am finding it helps me emotionally to read other's similarity of pain and symptoms, to learn from everyone and not feel so alone. I don't know if any of my input helps but who knows. Anne, I recall under another subject that you were going to ask your nephew here in the States if there was something similar as your Flixonase Nasual drops or something else you may have been talking about?-  Is there?  -V.

 p.s. I agree with your theory on the mucosal issue.. for Kelly, it's odd she's developing overproduction of it without any nasal/throat issues or ear effusion. That's the odd thing which usually demonstrates by retracted eardrum or on tympanometry at times?  I'm wondering if it's paratubal nerve/muscle damage.  -V.

Im so sorry you have suffered with this for 40yrs ..mine started with a bad flu virus in january that i actually got 2 doses of it so hit me quite bad ..in mid feb the flu virus went but i was left with fullness in ears and dizzeness also tinnitus . Drs havent been helpful at all..they mad3 an app for me to have an mri head scan which wasnt til 30th of this month however i couldnt wait that long so me and my family got the money together to have a private mri ..mri scan showed no damage to the ear although i was more concerned as to what is happening in my tubes to explain the fullness feeling ..im awaiting them to get back to me . In the meantime things are going from bad to worse cos i dont know wether to take steriods antibiotics antihistamines so im basicalky on nothing and the fullness dizziness n tinnitus are getting so much worse also my ears and face are now starting to get really hot sensation im sure the mri scan was on to high and has caused more danage than good . Apparentally the radio waves can mess with your DNA ..i dont know what to do or where to go from here ..im thinking of trying a chinese dr ..any advice you could give would be appreciated