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.
its highly debilitating and getting me down. im hoping for an ENT referal, but i just think covids going to slow that right down.