Eustachian tubes
Posted , 5 users are following.
I have had Sjogren's for decades but a year ago I developed autophony, a eustachian tube disorder where one hears one voice and breathing through both the ear and constantly open eustachian tube, though not quite simultaneously. It is quite distressing, interfering with speaking and singing etc. Has anyone else experienced this? I have it only in the left ear although I have abnormal negative pressures in the middle ear of both ears. I would appreciate any feedback.
1 like, 9 replies
gayle19455 maureen05275
Posted
Hi Mauteen i have recently been diagnosed and I too am having trouuble with my ears. It's as though they close up and I cannot hear well. But i can hear myself. Is this similar to your problem?
lily65668 gayle19455
Posted
Can you get your doctor to prescribe a mucolytic (something to break down mucus)? I sometimes have this problem, but find taking bromhexine for a few days helps a lot. I can get it over the counter where I live, but I know you can't in the UK. However, your doctor should be able to prescribe something. You should also ask to be referred to an ENT specialist.
gayle19455 lily65668
Posted
maureen05275 gayle19455
Posted
Thank you Gayle for your reply. I'm in Australian so on a different time frame and slow to see replies. Ears, strangely, feel blocked whether the eustachian tubes really are blocked or whether they are stuck open. I had the blocked feeling for about 10 years, initially infrequently then increasingly more frequently, until the autophony suddenly hit. It has not affected my hearing of outside sounds although I am very sensitive to noise. Gayle's suggestion of trying something to break down mucus sounds helpful. I would be very, very careful in selecting an ENT specialist (although if you have already now seen one, that advice is a bit late); the one I saw was most unhelpful and 'eustachian tube disorder' was all I got from him with no suggestion whatsoever of anything I could try. Please let me know how you go.
gayle19455 maureen05275
Posted
Hi Maureen. My Emt said i dont have any visibke problems but suggested I try Flonase for a week or two. The nasal structures are connected to the ears and even though I don't have a post nasal drip there could be some pressure in my tubes...like it is not eualizing. Ill let you know if it helps.
cazeraz maureen05275
Posted
Hi Maureen
i have had Sjögren's syndrome since 2009 but I also noticed this odd experience maybe 1 to 2 years ago it only happens on certain occasions but I have never bothered to see my GP for it thinking it was something that come with age or maybe to do with the tinnitus I've had since my late teens I wish I could have helped you but sadly you have made me realise this is perhaps not what I had thought. I do hope you get help with this condition, many thanks
maureen05275 cazeraz
Posted
Hi Cazeraz. Could you tell me when it happens for you? My initial blocked feeling really started when I joined a singing group 11 years ago after about an hour's singing but it wasn't autophony then. Do you get symptoms in both ears or only one?
cazeraz maureen05275
Posted
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cazeraz maureen05275
Posted
Hi Maureen
It happened to me when my ears popped as I flew to Cyprus on holiday which was back in April I have such a bad memory, but it also happened about a year ago, and that time it just came on I wasn't doing anything in particular that was the first time and as I mentioned I didn't go and have it checked but I am yawning quite a bit and I'm not sure why but my ears pop each time. Perhaps I should get it looked at.