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Old 07-25-2013, 04:10 AM   #1
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Mica42 HB User
Constant left ear autophony - Looking for a cure

I ear my voice constantly in my left ear, and it becomes extremely laud when I am in noisy places or when I am nervous.
Looks like the name of this condition is autophony, and is quite annoying and distracting.
I would like to ask if anyone has already suffered from it and found a cure.

 
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Old 09-18-2013, 12:32 PM   #2
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ericb76 HB User
Re: Constant left ear autophony - Looking for a cure

I see a lot of people around here read posts and would be nice if they would post info in order to try to help out some folks here. I have what your talking about and have had it for over a year now and its because of a patulous Eustachian tube that stays open all the time. I was perfectly healthy and had no ear issues ever before 2011 and around spring time 2011 I started to get ear fluid build up in left ear and I never had problems with that before even as a kid. Long story short it never got better only worse. I had no autophony issues as of yet cause the Eustachian tube was always blocked. Two years later found out I had a tumor and it turned out to be nasopharyngeal carcinoma cancer and I was stage four at the time they found it out. Flash forward to last summer 2012 I had 35 radiation treatments and nine rounds of chemo and the tumor was a size of a small fist and caused all kinds of issues with the left side of my face. Anyways half way through the treatments my left Eustachian tube started to open up again after a year of being blocked off and being closed.Man what a nightmare this became as my autophony became more and more prevalent in happening along with ear fluid build up. I got two surgeries where they injected some filler into the front of my Eustachian tube in order to fatten it up and help for it to not be open like that. Well neither surgery worked and I have done countless hours of research and posted here before and for the life of me I got several hundred people read with no response and I know there are some on here who have experienced this issues and had surgeries and I would love to hear from them just as much as you. Both of mine failed. From what I read the only cure to get rid of autophony is closing off the Eustachian tube for good but that comes with issues of its own and what that is I don't know for sure. I am waiting to get a surgery done where they are going to obliterate my left Eustachian tube by injecting fat into the tube and then cauterizing it shut and then it will scar shut for good. I honestly don't know of anything else to cure it and get rid of it myself. I have heard of a Dennis Poe up in boston and he seems to have a surgery he can do with out closing out the Eustachian tube itelself but I don't know for sure if it works good or not. I pray someone on here can help you out as myself as I would like to know before getting my procedure done as when its done you cant reverse it. Sorry you have this issue and I feel for you.

 
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Old 09-18-2013, 01:31 PM   #3
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Re: Constant left ear autophony - Looking for a cure

Thank you for your feedback, and you are right, it is a lonely call, I just wish the right person reads this and is kind enough to send us a really good answer.
All the best

 
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Old 09-29-2013, 02:18 PM   #4
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lfu2 HB User
Re: Constant left ear autophony - Looking for a cure

Quote:
Originally Posted by Mica42 View Post
I ear my voice constantly in my left ear, and it becomes extremely laud when I am in noisy places or when I am nervous.
Looks like the name of this condition is autophony, and is quite annoying and distracting.
I would like to ask if anyone has already suffered from it and found a cure.
I have had the same compliant for about 10 weeks now. I have recently seen the ENT consultant on a different matter to be told he couldn't take any action before the results of a nasal biopsy were forthcoming. It has been driving me wild as it happens so frequently, and each attack can last for a long time. What I have discovered is that if I bend at the waist and hold my head at knee level, the autophony quickly disappears. I sometimes need to move my head from side to side. The relief is temporary. I hope this helps and I am not trying to teach grandma to suck eggs.

 
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Old 10-12-2013, 06:18 PM   #5
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Marie 67 HB User
Re: Constant left ear autophony - Looking for a cure

I am trying to find out if I have patulous eustachian tube. I have an echo like in my ear and it feels like air in there at the same time. Does yours feel like this? Does your ear feel full and pop? What is the difference between autophony and an echo or vibration in the eardrum? This is driving me crazy. I'm afraid it might get worse. I'm trying to lay down as much as possible and not strain my tube any. I'm hoping it will heal itself but it's doubtful. What happened to you to get this disease? Did you have an infection in ear or sinus? That is what happened to me. Do you have any vibration in the eardrum from noises that are close like a hairdryer? Mine will do this.

 
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Old 10-29-2013, 01:23 PM   #6
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lfu2 HB User
Re: Constant left ear autophony - Looking for a cure

Sorry duplicated response. Read following post please.
lfu2

Last edited by lfu2; 10-29-2013 at 01:37 PM. Reason: Duplicated

 
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Old 10-29-2013, 01:34 PM   #7
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lfu2 HB User
Re: Constant left ear autophony - Looking for a cure

Sorry for the delay in answering. As far as I am aware, autophony covers of these symptoms and others. My road to autophony was long and winding. I was eventually diagnosed with neurosarcoidosis involving a lot of my cranial nerves ... hearing, sight, taste, smell, vocals cords, swallowing, speech, tongue shoulder etc... and eventually a soft tissue growth in my nasal cavity, and this growth I think is the cause of the autophony.
So, yes I do get the echo/distortion in my ear/ears, also vibrations. I can hear my breath like Darth Vader and my heartbeat is like a pneumatic drill. The volume of my voice in my head bears no resemblance to the volume I am talking at.... it is deafening. The hearing in both ears has sharply deteriorated and even with hearing aids I am almost deaf. The only blessing is the autophony is not continuous, but does exist for long periods.
I use a nasal flush twice a day,(netti pot), and although I have no evidence, I feel that it is of benefit to me. Also none of the doctors and consultants really want to take autophony seriously, they seem to think it is just a nuisance. They fail to realise how thoroughly horribly distressing the condition is. I am generally a very optimistic person but this single symptom/condition has brought me to a very low depressive state which I find increasingly difficult to throw off.
Sorry for the long tirade, but I feel better now that I have written it.
lfu2

 
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Old 10-30-2013, 09:21 AM   #8
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ericb76 HB User
Re: Constant left ear autophony - Looking for a cure

That is definitely autophony as it allows air and sound to travel up the Eustachian tube and into the middle ear vibrating off the ear drum. I can't do nothing for relief on mine as its 24 7 and I hear my breathing all the time like darth vader and when I talk to people I can't not hear anything around me and basically makes me deaf for the time I am talking. Mine has been for over a year plus on this issue since it started. I am waiting to get the ok from insurance company to get he surgery to close my Eustachian tube but the insurance company is fighting me on this and I am having to file a complaint and dispute them. This thing sucks to have and I feel for you folks.

 
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Old 10-30-2013, 01:02 PM   #9
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Marie 67 HB User
Re: Constant left ear autophony - Looking for a cure

How did you discover that you had a growth in your nasal cavity? Did you have a mri or ct or did the ent do a scope?

 
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Old 10-30-2013, 03:22 PM   #10
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ericb76 HB User
Re: Constant left ear autophony - Looking for a cure

Well I was going to a small town doctor who was not very good for advanced ent stuff but I had it for almost two years before it was caught and by that time the damage was done. I had a ct scan done and because they went straight from the front of the face they did not catch it and more time went time and after almost a year fooling around with my ent doctor he finally scoped my sinus and all it took was all of a 30 second scope to see the mass and then he sent me off to Ohio State James Cancer institute to get treatment as he did not know what to do at this point. I got a biopsy after that and then mri and it showed everything.
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Originally Posted by Marie 67 View Post
How did you discover that you had a growth in your nasal cavity? Did you have a mri or ct or did the ent do a scope?

 
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Old 11-08-2013, 03:28 AM   #11
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lfu2 HB User
Re: Constant left ear autophony - Looking for a cure

Quote:
Originally Posted by Marie 67 View Post
How did you discover that you had a growth in your nasal cavity? Did you have a mri or ct or did the ent do a scope?
I get regular MRI, CT and PET scans due to the thickening of my meninges. The brain lining is thickening for some reason and compressing the cranial nerves, so after every dose of treatment I have a scan. The soft tissue growth showed up on a PET scan and then was confirmed with an nasal endoscope examination. I am due for a biopsy next week.... happy days!

 
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