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ETD causing me physical and emotional problems.

Posted , 5 users are following.

annamay123456
annamay123456

Hi There

I'm hoping I might be able to find some common ground with some of you with an ongoing issue I have had.

For the past 3 years I have suffered with low, loud, inconsistent popping in my left ear. From what I can remember the first time I had it, it lasted a couple of weeks, the next year a couple of months, last year it lasted 9 months. It usually comes on during May time, so i instantly associated it with hayfever. Last year I saw the doctor who prescribed me no end of antibiotics (even though I was sure it wasn't an infection) ear sprays (which only made the popping louder) and nasal sprays (which caused sore dry nasal cavaties) I also heard numerous suggestions of what it could be from every doctor I saw, I eventually got a referral to ENT but had to wait 4months for the appointment. eventually the popping at that time stopped whilst I was on holiday, although i'm not sure if this was down to the warmer weather or it had just run its course.

This year I have already suffered with the popping twice. So i'm beginning to think the issue isn't hayfever.

I finally had my ENT appointment in January this year, the specialist told me he expected it to be a dehydration problem linked to ETD and also prescibed me another nasal spray and told me to start taking it at the beginning of April, which I have and to up my water intake. Alas the popping has returned.

I have also been drinking copious amounts of water, I am already Gluten free and am now 2 weeks free of Dairy.

I already suffer with mild anxiety and this issue has aggrivated this, It is causing me to be extremely depressed, inconsolable when it gets too much and thoroughly dispondant. I have also suffered with dizziness this time around. I work in finance and my day consists of sitting infront of a computer, the scrolling of the screen makes my ear popping more frequenet and louder which I suppose is linked to fluid in the middle ear being unable to equalise? It's incredibly hard to concentrate.

It is causing rifts in my relationship with my partner as I am a totally different character when the popping noise takes over.

I am hoping someone might be able to give me some advice that I have not yet heard.

As I sit here and write this the popping is currently not present and each time I have relief from this I am flooded with gratitude, and equally terrified that it will return. I am quite honestly feeling completely hopeless about the situation and terrified it will never go away completely.

I look forward to hearing from anyone with any suggestions.

Thank you

1 like, 47 replies

47 Replies

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  • anne05078
    anne05078 annamay123456

    Posted

    Hello Annamay,

    Sorry to hear of your problem.  Well, join the club.  Pretty much all of the people on this site are suffering the same condition as yourself.  First of all do you ears feel blocked, or just keep popping ?  If they feel block as mine do, then it sounds like you have Eustachian Tube Dysfunction.  The popping is probably mucus.  I suffer chronic sinusitis, allergies, congestion and blocked ears.  I've had a particularly bad year this year, in fact the congestion started in December 2016.  I see my ENT consultant twice yearly, where he microsuctions my left ear, which has a tiny perforation in.  Once all the  mucky mucus is removed the feeling is just wonderful, tinnitus is so much lower (suffered that for 20 years).  I was prescribed Flixonase Aqueous Nasal spray, which I've been using years and years now, along side Citrizine antihitamines.  I also use NeilMed Sinus Nasal Rinse every day.  However, no cure just some relief at times.  I've stopped flying now as ears are so bad.  I'm pretty sure my problem is allergy related.  House dust, which is vertually impossible to eradicate, in the Winter the mould on the tree and in the Summer the pollen....what can one do !!  At present I've been prescribed a reducing course of Prednisolone Steroid tablets to rid me of all the inflammation, dry up the mucus and clear the ears.  I'm still congested in my left nostril, which impares my sleep and I know I;ve over-used Otrivine the decongestant, so probably now getting a re-bound affect, but again, what can one do.

    • anne05078
      anne05078

      Posted

      Sorry, I clicked too soon before finished.  I reply to everyone on here, as I've suffered this complaint sine the 1980's......even contracting bacterial meningitis in 1994, due to the mucus in eustachian tubes becoming infected.  The bacteria crossed the blood brain barrier.  I lost the sight in my left eye and my hearing is down in right ear.  so all in all not a good experience and still suffering the same to this day.

      I hope you get sorted soon.  Getting anxious will only make the problem worse, but I really understand how you feel and how it can cause problems in relationships.  I get very grumpy and it drags me down big time.  Unless anyone has suffered this problem they just don't know how horrible it is.

      Kind regards

      Anne

    • annamay123456
      annamay123456 anne05078

      Posted

      Thank you so much for your reply Anne, and I am so sorry that you have sufferred so badly from this.

      You are right, I am sure nobody will ever know the feelings this causes without them experiencing it themselves, that is why I have sought comfort from this group. It's a true blessing to kow you're not alone in this so I thank you dearly for your reply.

      My ear has days where it feels more blocked than others, however the popping when it occurs does not seem to relate to my ears feeling more or less clogged. Luckily I have not suffered any pain as such (although I feel at times the Doctors might take it more seriously if I was!?)

      I had tried the same Neilmed Sinus rinse last year but after using it for a few months with no relief I gave up, I have also tried the otrovine decongestant but was told to stop it eventually as like you said, i was overusing it also. I am currently using Avamys nasal spray which I believe has brought some relief, however I gave up the dairy (and also eggs) around the same time so i'm not sure if it was that. However I had popping reoccur last night (cue complete meltdown from myself) so I am unsure if either of those tactics are currently working.

      To sit here now and use my computer and focus on my work without the noise currently is a dream, It's amazing that something as simple as an irregular popping noise can drive you so mad.

      I am 26 and I can't imagine living with this for the rest of my life. For the time being I will find comfort in others like yourself on this group that can at least empathise.

      Many Thanks

      Anna

  • alexia69415
    alexia69415 annamay123456

    Posted

    So sorry for your condition, I shall be following your story very closely as I am brand new to the group also.  I understand your relationship problems, I am being very reclusive due to the problem caused to my hearing.  I hope you get the same excellent help and advice that I have from the lovely members and can see an end to your ailment. xx
    • annamay123456
      annamay123456 alexia69415

      Posted

      Hi Alexia

      Many thanks for your reply, it's so nice to know you are not alone in this.

      I have a very understanding partner but I believe I am driving him away, in his words "I love you so much but poppy ear lady is a right bitch". Yes that's right, I have an alter-ego due to it!

      What is it that you suffer with? Is it just blocked ears or do you suffer with a form of tinitus also? x

    • alexia69415
      alexia69415 annamay123456

      Posted

      "Just" blocked ears at the moment.  I have received some awesome advice from this page and have printed it out and am taking it to the doctors with me at 3 PM today - I'll let you know what happens smile Good luck. xx

    • annamay123456
      annamay123456 alexia69415

      Posted

      Thank you Alexia it would be great to hear what they have to say. I'm sorry for the "just" blocked comment I hope that didn't come across as blasé I didn't mean it to. I look forward to hearing from you again and I'll keep my fingers crossed for you whilst you're at the doctors!

      Out of interest are you based in the UK Also? X

  • michael11955
    michael11955 annamay123456

    Posted

    ETD is an awful complaint.No one can see or hear what you're suffering or begin to understand it.It seems to affect us in lots of ways ,plus the fact that the doctors & specialists don't have the answers either.My own GP appears to be the most honest person on the subject.His words are "there is no treatment or cure for this condition"

    All the others say to try  this spray or this tablet or some other fatuous remarks & send you on your way.

    THAT'S THE BOTTOM LINE.

    • alexia69415
      alexia69415 michael11955

      Posted

      Nooooooooo Michael please don't say that!  I always go by the motto "If you don't like something - get it changed"  I'll never accept that there is nothing we can do about it!  Good luck to you my friend xx

       

    • annamay123456
      annamay123456 michael11955

      Posted

      I have to agree with Alexia. There has to be a cure, there are too many people with the same complaints for to be incurable. For as long as I live I'll keep my fingers, toes, eyes crossed that one day we will get some answers. i hope you find some too Michael, good luck.

    • anne05078
      anne05078 annamay123456

      Posted

      Hi annamay, well it's 34 years for me on and off, more on than off, so good luck !!

      Anne

    • annamay123456
      annamay123456 anne05078

      Posted

      I can only imagine what it's been like for you. 

      Have you found anything that temporarily eases the problem? Can you recommend any coping mechanisms? I've read a lot about meditation but I can't imagine trying to "switch off"

       

    • annamay123456
      annamay123456

      Posted

      Also, how did you go about getting the specialist to microsuction your ear? Did you have to have something similar to a grommits procedure for this to happen? The specialist I saw in January said that the olny thing he could recommend would be grommits, but then he dampened my mood by saying the NHS no longer do this (Or I took that as in only really specialist cases would they) so it would have to be private, which I cannot afford. I'm also terrified that the problem could be made worse by having this procedure done which i've read before.

    • alexia69415
      alexia69415 annamay123456

      Posted

      Anne mentioned in my thread that Flixonaase Aqueous Nasal Spray and Prednisolone tablets really help her.  Sorry to speak for you Anne but I am excited - I'm off to the doctors with your list, I'll drop you all a  line a little later. xx

       

    • annamay123456
      annamay123456 alexia69415

      Posted

      Are you based in the UK Alexia? I'll look those up, do let us know how you get on at the doctors, i'm excited for you!

    • annamay123456
      annamay123456

      Posted

      I've just checked out the  Flixonaase Aqueous Nasal Spray, it turns out the same active ingredient is in Avamys nasal spray which I am currently taking.

      As with all steroids, they take a while to work, so i'm still holding on to the hope that the relief I am experiencing today has something to do with the spray. Good Luck Alexia!

    • alexia69415
      alexia69415 annamay123456

      Posted

      Thank you Annamay, I lived in Usa for 25 years (Florida) never had a problem, yes now I am based in UK.  But only had this problem for two months (so far).  I guess it's my American half that won't accept the "there's nothing you can do" advice!   British people are so complacent.  I've changed so many things since I've been here by protesting and getting support for my cause yet the Brits just sit back and say "Well, there's nothing you can do about it"   

      Anyway, awesome news - I have Prednisolone!!  I've just taken my first once a day 30mg dose.  I got really lucky, my doctor couldn't get in so we had an ad locum nurse/practioner instead and she's an expert in this smile  I only have a 5 day dose so I am hoping that something good will happen soon.  If not, I have my hearing test next week and apparently it's the hearing test people that send you to an ENT.  I hope you find some relief soon, please keep in touch and let us know how you are doing. xx

    • alexia69415
      alexia69415

      Posted

      Oh I forgot to mention that all my tests for pollen, dustmites, animals came back negative, so obviously I have the non-allergic rhinitis that another contributor mentioned.  Leading to this.  xx

       

    • anne05078
      anne05078 alexia69415

      Posted

      I look forward to hearing back from you and really hope he doesn't fob you off.  Hang on in there.

      Can't wait to hear whether he prescribed them.

      I feel brilliant today and nasal congestion gone too now.

      Anne

    • anne05078
      anne05078 annamay123456

      Posted

      I had a tiny perforation in left eardrum, that just wouldn't budge, so he used microsuction to get out all that nasty mucus, that really isn't good to be left there.  I have this procedure done now about 7 times.  I ask my consultant how often this procedure is permitted, his reply 'every time you need it Anne....good enough for me.  Grommets aren't the answer, when they fall out in a few months, problem back again.  Of course you can't have suction unless you have a perforation.  sometimes the mucus is so bad it will buldge the eardrum and perorate it.  I think I perorate my own by constantly trying to pop the ear...not good I know, but can't stand that blocked feeling

      Anne

    • anne05078
      anne05078 alexia69415

      Posted

      I hope the dose is a correct one.  I've taken a weeks course and it hasn't worked well enough....hopefully, for you it will though.  Mine is a 20 day reducing 8 tablets @5mg for 5days - 6 tables 5 days - 4 tablets for 5 days and lastly 2 tablets for 5 days and stop.  There should never be an abrupt stop with these tablets.

      Can't wait for you to let us all know if they work....sure they will and you'll be jumping for joy, as I do.

      Anne

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