Does anyone have daily PAIN with ETD? Mine has gone on for nearly 4 weeks now & I'm not doing great

Posted , 4 users are following.

I have been looking everywhere for some support , on Youtube I was commenting on ALL the good video clips explaining what I was going through and if anyone can help but got no response , on a Tinnitus forum I poured out my heart and asked for help and got no response even though many of the people on there had tinnitus due to EDT

My daily pain started after about 3 weeks of being congested and sinusy , no real pain just the ridge of my nose hurt a bit at times but I was able to carry on with life and the sinus congestion cleared on it's own

I am fairly run down and stressed as I am a Grandparent carer for my Autistic Grandson who is 12 and he lives with me and we have been through a lot together and still are atm but I have never experienced ANYTHING LIKE THIS!!!...

From day one of the PAIN in my left ear I thought ohoh I must have swimmers ear as my doctor said I mustn't get my ears wet inside and I did ( and bath water at that ) so I was thinking of festering germs and an ear infection

So it was actually day one of our HOLIDAY on the Isle of Sheppey with no knowledge of any medical centres or practices as have never had to use them! I looked online and it said ''most ear infections clear up on their own'' and that natural products work better than antibiotics anyway and it seems they are reluctant to prescribe them now but I thought okay then I will try a NATURAL product so I spent a week putting ruddy GARLIC oil in my ear to no avail of course and then it got worse not better at all so I went to a walk in centre and they gave me antibiotics , a week on antibiotics and no better so I came HOME as it was no holiday for my Grandson and I anyway with me suffering in pain every day and not able to do ANYTHING with him so I went to a local walk in and they gave me more antibiotics , steroid spray , ear drops and told me to take a decongestant

Took that whole course and a week later no better and in desperation I visited a walk in and asked for at least some PAIN KILLERS WHICH WOULD WORK as nothing was working for the pain ( Not CONSTANT thank God but it came and went and still comes and goes ) the strong pain killers they gave me did not work

I then stopped taking the decongestant after the recommended 7 days and my SINUS TROUBLE CAME RIGHT BACK AGAIN so I felt like I was back at square one even though the pain had eased in frequency and duration during the day thankfully

I started looking on Youtube etc as I feel it is a clogged eustation tube causing the pain and it must have been and got heavily clogged after the 3 weeks of sinus congestion 😦

So as soon as the sinus problem went away it felat like almost the very next day once that WENT that the ear pain STARTED and has not stopped DAILY since ( for nearly 4 weeks now )

Last thing my own unhelpful doctor said to me is give it another week and if no better he will refer me to an ENT but that in itself will take months to get an appointment and I need to FUNCTION for mine and more importantly my GRANDSON'S sake even though he is happy at home I need to be there for him more and spend more quality time with him and we NEED some chill out time together as we have been through some emotional ordeals over the years and it has only just started to let up now

Please help!

What I have tried so far ;

Olbas oil rubbed behind my ears and down my neck

A head massage today with some oils

My vibrating toothbrush massaging next to my jaw ( hurt )

Still on the steroid nasal spray but my doc won't give me any more

I have a steam cup I am going to use tonight

The face exercises including yawning , swallowing , the nose holding blow thing does not work at ALL , chewing , sucking on sweets and ice lollies , blowing my nose ( it popped for the very first time at last with this but the pain continued )

Chewing gum when I remember

Septilin tablets ( worth a try? )

Cough syrup with Guaifenesin in it ( am getting desperate to try anything now )

I have just bought a humidifier for night time

I find sleeping upright helps me better tbh

Lots and lots of fluids inc lemon & ginger tea in the morning

Trying to rest up

And I want to order an Otivent next xx

0 likes, 5 replies

5 Replies

  • Posted

    Sad to hear of your problem Carole.Take a look back at my contributions to this subject & try to realise that the medics just don't know.

    Olbas oil steam helps just a little bit,but all the rest is just junk in my experience.

    • Posted

      Thank you Michael - I have just used some olbas in a bit of inhaled steam and am going to bed , was a bit worried today as the pain started in my OTHER ear so I will ring my doctor for an appointment to be referred just in case and yet in the 'meantime' it seems they can do nothing and tbh 2 doctors already did NOT beleive that there is ANYTHING WRONG WITH ME but how can I FAKE REAL PAIN in my ears? And why the hell would I cut my holiday short and come home if I was FINE??

      ''Go home and rest'' is what I was told by the last doctor so I HAVE gone home and rested but he thinks I was stressing over NOTHING and he does not think I actually have anything wrong with me at all as as far as some docs are concerned if they LOOK IN your OUTER ear and cannot see anything and you don't have a temperature then there is NOTHING wrong with you but you cannot SEE the inner ear but anyway ONE doc at least said he suspected ETD and gave me the steroid nasal spray and told me it would take a week to work but I have read they take months and I don't think mine was due to an allergy but my sinuses but anyway all I can do is take it easy as pressure in any form makes my pain worse , so it is a watch rest and wait and see thing but of course I am worried my other ear started hurting today so I HOPE that goes away as I may have to do more of the popping exercises as I forget which ones work for me and which don't as the hold your nose and blow one does NOTHING for me and yet yawning is quite good as is swallowing I THINK as sometimes I have the pain and I just swallow , swallow , swallow and it goes again , so I am still HOPING I am on the mend albeit a SLOW one and I wish the doctors themselves knew more about this condition rather than think we are faking it 😦

    • Posted

      Hi Carole,I think we' ve been to the same doctors & specialists & I'm rather afraid that they just don't have an answer. I've been going to

      mindfulness & meditation classes for some time & although they don't cure the condition, they actually help you to deal with it.

  • Posted


    I have an ETD with tinnitus since seven months. My ENT doctor has installed a ventilation tube in my left ear and it has not worked... According to him, there is nothing to do, he told me that it can be very long to heal... it's a nightmare. I don't have much pain, but a big discomfort, I have big pressure in my ears and it's like my ears are always clogged.. I've tried a lot of things: antibiotics, nasal spray, facial and jaw massage... nothing works... I am a teacher and it's very difficult for me to work at this moment with this disease. I would advise you to see an ENT and I wish you the best of luck. I understand your distress...

    Sorry if I made a few mistakes in my response, I speak french!

  • Posted

    I am very SLOWLY RECOVERING , it is a long process but what helps the most is good rest and proper relaxation , like the more relaxed my body is the more clear the tubes etc are! x

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