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ETD DOES GO AWAY... Please read this before you panic

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mary09608
mary09608

A few months ago I made myself a promise that this time I will take the time to share my story on the internet if my horrendous ear problem was to ever go away, which at the time felt like it was with me forever.

Before I proceed with my post I want to make a little disclaimer to those really unfortunate people who have been stuck with their horrendous issues for years. By no means do I want to disregard or somehow compromise their posts. I’m sure just like with any other illnesses some people are really unfortunate and I am truly sorry if you are one of them. BUT before you panic and start thinking you are one of them after reading horror stories online, please bear in mind that there is a 99% chance you are not one of them and that your problem WILL go away, and just like the other 99% of people you will either not be so bothered by it or simply won’t write your story here. Because good stories never come up on Google, it is always the bad or the really bad ones. But if you also notice many of those stories have been posted many months if not years ago and since then have been completely forgotten about. Most likely this is because most people DO get better and when they do they want to forget all about it and never visit those horrible threads again.

Now my story. A few months ago I had an ear infection, which later on led to some typical ETD complications of pressure, occasional tinnitus, aching etc. But my worst nightmare was the paper crumbling noise each time I was to open my mouth or somehow move my jaw. I could not eat, could not apply lipstick, sometimes I could not even talk let alone yawn without that terrible noise. Of course first the thing I did was to going on Google, then I started to panic and visited multiple doctors, some of which suggested my problem was not even the ear but my jaw. I won’t go on about all the lengthy details of arriving to my final diagnosis, which as I understand now was the correct one. It was given by my GP (I live in the UK and use a private GP, who is in my opinion better than most consultants) and straight away he knew what was wrong, he did not doubt by listening about my symptoms that I had ETD. So he sent me home with a steroid spray and said give it time and it will get better. Unfortunately I suffer with health anxiety and when something happens I ca not just “give it time” and wait. So I ended up on Google again. Having read all the usual medical websites, like the Healthline or WebMD I could not find anywhere that described my symptoms exactly as I felt them. I was also finding things like “for most people ETD goes away in a few days and if does not go in a week or two you should get it checked out”. For me it was already over a week back then and like every health anxious person I panicked and resorted to forums. This is where it turned dark for me. I think the patient UK forum for ETD is particularly bad for this. Having read the threads all I got out of the forum was horror stories, hopelessness, fear and despair to say the least. Days and weeks were going by and my ear was not getting any better. Well it actually would if I was sensible enough to think about it, but I was so overwhelmed by the negativity, that I did not notice and did not pay attention to the slow but gradual small improvements. So I booked to see my GP again and again. He kept telling me that I just have to be patient and for many people it is really hard to predict when the improvement will happen. I do not know why everywhere online it says give it few weeks, because it could be a lot longer and if it is DO NOT PANIC! I promise you! It is normal and it will go away - these are the words my doctor said to me and I did not really believe him because days with those symptoms felt like weeks and even the tiniest discomfort I blew out of proportion.

Personally in my experience I needed CBT, steroid spray in my nose for a couple of months and an osteopath that worked absolute magic with my neck and head, so my symptoms got under control in what I now believe was quite fast. All together I think it took just under two months for me to get better. It was a challenge, but I believe partially what made it so difficult were all the hopeless horrific stories on Google. By no means am I here to judge, I am just trying to tell you not to loose hope and not to Google unless you know for sure your condition is chronic and you need to find some support. But the trick is that with this condition it is really hard to know if it is chronic because when it is there it just feels horrible and I know it does. I know how it feels 6 weeks on with hardly any improvement reading stories that you are now stuck like this for life. But before you read them I hope you will find mine and put your phone away now. Do not go on forums unless you got to the stage where you absolutely have to, and trust me it does not happen just after a few weeks of having this.

I believe for the improvement of my condition I must thank my GP, of course for the moral support and the right spray I was prescribed, also to my osteopath, who I am 100% convinced sped up the recovery tremendously (again the result was not instant, you just have to stick with it, believe in it and GIVE IT TIME) and my psychologist who helped me deal with the anxiety side of things, which believe it or not plays a huge part in your recovery. If for some reason you cannot access this support, I suggest just getting the spray, trust it is doing its job, give it a good month or two of spraying two sprays in each nostril (one directed towards the ear) and then when you see improvement (and you must believe that you will eventually see it) just give it another week before starting to SLOWLY come off your spray. And please trust me, you will be fine! Your condition is not scary, it is not for life and is not as horrible as it may seem. For the time being you can learn to ignore it for just long enough for it to gradually get better.

I hope my story gives you some hope, I wish I had read some more positive news stories during my time, and wanted to ensure I took the time to let other suffers know there is hope.

8 likes, 24 replies

24 Replies

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  • Swiz101
    Swiz101 mary09608

    Edited

    hello,

    thank you so much for this. I am suspecting I have ETD (not confirmed yet). ive had a blocked/full ear for 3 weeks and continuous dizziness when I move my head or walk 😦 its highly debilitating and getting me down. im hoping for an ENT referal, but i just think covids going to slow that right down.

    thank you for showing that this still has the chance of fixing itself. can i please ask the name of the nasal spray? i was given some by a nurse, but then my GP said only to use it if i have an allergy flare up...... very strange.

    thanks again 😃

    • mary09608
      mary09608 Swiz101

      Edited

      hi

      sorry to take so long replying, i havent visited the forum since. i hope you are feeling better now? however my GP told me it could take a very long time to go away but it always does! the spray is Avamys, its prescription only and its a steroid, but worked amazing for me. also i can highly recommend to try an osteopath if you are still feeling it, i reckon they helped me recover, because my symptoms very very unusual and debilitating. its also important to stay positive, because when i got it, i went to this forum after a month of struggling, and i completely lost hope, and got really depressed. but the thing is people never seem to post success stories on medical forums, so from my experience its best to steer clear.. anyway i hope you are feeling better and apologies for not replying earlier!

  • dangerousdan
    dangerousdan mary09608

    Edited

    Hi Mary,

    Really interesting post thanks and I too have recently had a breakthrough after years of chronic ETD. I also was prescribed a steroid nasal spray and in conjunction with that I have been training myself to be able to pop my ears properly which I can now do!

    I'd really like to hear more about the osteopath and which private doctor you are using.

    Any chance we could have a conversation somehow, via email or something?

    Also see my other post on this section about what I have been doing recently.

    Thanks

    Dan

    • mary09608
      mary09608 dangerousdan

      Edited

      hi Dan

      glad you are feeling better! it would be really good if people can post more positive stories on forums because at the moment of crisis it is very depressing to read all the horrors and sufferings, whereas in fact looking back at it, its just an inconvenience and by no means "a silent killer" as many put.

      after I got a relief from my most annoying symptoms, my ear still wasnt completely back to normal for about a year. sometimes it felt blocked, full, or ringing, but thankfully i havent read any horror stories and symptoms have gradually resolved themselves, while i maintained my sanity! i just cant stress enough how important it is to keep a positive outlook on things, when the mind is in the right place you dont notice things the same way.

      sure, we can talk about your concerns in a private chat, im not sure how it works here as i only created this account to share my feedback.

      let me know if you still want to talk and hope you are doing great

      Mary

  • randy67623
    randy67623 mary09608

    Edited

    I made an account just to reply to this post. THIS IS EXACTLY WHAT PEOPLE SHOULD READ! My story is just the same.

    I've had chronic ear infections since I was 6 years old (now I'm 26) and multiple tubes in my ear. My ears cant make contact with water or I get an ear infection. All of this caused a lot of trauma and litteraly scarred my eardrum and perforated it to the point I had to get it patched with a piece of skin from behind my ear.

    By the time I turned 18, the ear infections stayed away and all I had to do was go to my ENT every 3 months to suck out my earwax because I produce to much and it would cause trouble.

    Now for the ETD part:

    I was trouble free for 8 years until I noticed a sharp pain about a month ago in my left ear like someone was sticking a needle in my eardrum. I went to my ENT for my 3 monthly cleaning and told him about the problem I had, so he cleared my ears and asked me if I was better. The pain was gone but instead came a rustling noice lile something was moving inside my ear when I moved my head up and down. This was so unusual to me but my ENT told me he couldn't see a lot because of my scarred earsdrum but it wasn't inflameted so he told me to wait it out.

    A week later it got worse, the creepy noice was still there and my hearing started to get muffled when I moved my head, all that helped was lying on my left ear (the one that Hurts) downwards and I would hear little pops after 5-10 seconds and my ear cleared. But as soon as I got up and looked downwards at my laptop screen my ear clogged up again.

    I started to panic.. I'm studying 200 miles from my home and ENT and couldn't call him because he was on holiday.

    SO I made the BIGGEST mistake by turning to google with my symptons.. And man, did I only read horror stories.. and all the websites talked about it going away by clearing or after a few days..

    I started to PANIC, I couldn't study anymore because of the noise and the horror stories that it will never go away.

    The next thing I did was made an appointment at my local Hospital where I study and see their ENT (keep in mind that my home ENT has me as a patient for +20 years and knows my ears)

    That woman at the local hospital used me as a guinny pig for her understudy and didnt really listn to my complaints. She told me to do a hearing test despite of my objection it wont be correct bc my ear was clogged badly at that time. Anyways they did a test and told me I had a huge hearing loss on my left ear (no sht sherlock) and I had to LEARN TO LIVE WITH MY SYMPTONS..!!

    HEARING THAT BROKE ME INSIDE!

    I got back to my dorm, and cried for two days straight, I couldnt eat, sleep or study for my final. All i could think about are those horibbel sounds and feeling that would never go away.

    Keep in mind that my ETD symptons are 3 weeks going now.

    The next week I moved back home bc I couldn't study anyway and all I could think about where those horror stories online.

    I went to my personal ENT again and explained my pains again.. he did more tests this time and noticed a tiny bit of fluid inside my ear and prescribed me 3 things:

    Ortrivine Nasal spray (Xylometazoline) for MAX 1 week, 3 puffs a day with 8 HOURS between each puff

    Nasonex Spray (light steriod) 2 puffs each nostril for 3 months.

    4t week: I still could not eat, I had panic attacks and felt terrible. Suddenly after 3 days of treatment my rumbling sound when I moved my head was less frequent and the muffled hearing too but it was still there.

    after that all i heared was a popping sound when I swallowed but muffled hearing was completely gone and so was the noise of something fluid like moving in my head.

    The moment I'm typing this i'm 1 month in and my problems are almost completly gone. All I hear is a little click when I swallow but that doesnt bother me.

    I still have panic attacks tho, I lost 3 KG's in weight because of stress by googling my issues and reading the stories. I was having another attack until I came across the story above me. People who get better, 99% don't post it on the forums because they forget about it.

    Give it time, it will heal. And maybe if you have another very bad allergy or cold it could return, but remember it will go away again and your hearing will be normal 😃

    STOP GOOGLING YOUR SYMPTONS

    grtz.

    Another ETD survivor you normaly don't hear about

  • lou1986
    lou1986 mary09608

    Edited

    Hi Mary,

    First off thank you so much for your post and also encouraging others to share positive feedback on this tricky subject.

    I found your post through anxiety of also being told ETD (glue ear) may never return to normal. It has been 3 weeks now post covid my symptoms started due to congestion and ear fluid / buldging.

    As of today my DR started me on Dymista nasal spray it is a steroid/ antihistamine. I really hope this works as I'm just not dealing with the fullness feeling especially at night time.

    Will keep you posted ❤️

    • Fin1006
      Fin1006 lou1986

      Edited

      Hi Lou, I also have the same ear problems post covid which has been going on for about 3 months now. I've been using the steroid nasal spray for about a month and on pseudoephedrine now for a few days. So far my ears are still full on and off. I just hope it will go away as it really drives me nuts! How are you going? Hope yours are getting better.

  • jade87130
    jade87130 mary09608

    Edited

    Hi Mary! (and everyone else!!) so relieved to find this forum, I too have have had trouble since having COVID last NOV, I unfortunately havent had much luck but I believe it is because of the lack of support I have had from my GP. I was told my ears were fine it should pass on 3 occassions, I suffer with panic attacks anyway and I have sensorimotor OCD (hyper awareness to bodily functions) and im claustraphobic which has made living with this literally unbarable! I really do sympathise with you all as I wouldnt wish this on my worst enemy, my ears are painful most days and always feel full, i cannot fully pop them, I get terrible vertigo to the point I feel like im drugged up and unable to speak properly. Im a sales manager and always been very hardworking in my career and this has made everything in life impossible to focus on, the panic is constant and my hair is falling out due to stress. I went private a few months ago and after a hearing and pressure test (and £600!) i was told there was nothing wrong and hipefully it will pass on its own. I have to say that reading your replies has given me a push to do more about this!!! i completely gave up recently and accepted I was just going to have to try live with it until I couldn't live any longer. I would love to hear how you are all getting on now???? please don't be frightened by my post i must just be one of the unlucky ones!! if anyone wants to speak privately I'd be happy to talk. I know it can feel very lonely as not a common condition so sometimes just talking can help!

    • mike44880
      mike44880 jade87130

      Posted

      Hi Jade! similar with covid as well. Would you be up for connecting?

  • stephanie1377
    stephanie1377 mary09608

    Posted

    Thank you. How nice to hear that 99% of people get to be done with this condition. I'm 17 days in and can't wait till it's over. Can I ask if your condition was worse after you woke up? Mine is always worse for the first few hours after waking. Is an osteopath like a chiropractor? I live in the US and wasn't sure what an osteopath was. Thanks so much.

    • niko7
      niko7 stephanie1377

      Posted

      did you find relief yet? nI have same issues making me upset

  • niko7
    niko7 mary09608

    Posted

    please email me i need to communicate with you because my story is EXACTLY the same as you and i am struggling and i need hope..please contact me i would be so grateful!

  • niko7
    niko7 mary09608

    Edited

    Hi

    anyway you can talk with me? I am going through this now and some extra support would be awesome?

    • christine67143
      christine67143 niko7

      Edited

      hello, I am going through the same stuff now, pressure , blocked ears etc. I am 56, never had this before and then 2 months ago, it hit me, didn't have a clue. Went and had ears checked, they cleaned out the wax, but that didn't fix my issue. GP gave me nose spray, called Momentosone.. prescription.. I think I quite after 3 weeks, was scared to keep using it, lol, I have health anxiety.. Anyway, still have the same pressure and today, my ears were awful.. I had to keep pinching my nose, to clear them. So, should I keep on the spray, perhaps that will fix my Eustashian issues, if that is what I am indeed having? I will go do a spray tonight.. as I want this fixed once and for all, lol. thannks everyone!

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