It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Inner Ear Disorders Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 01-21-2013, 06:06 AM   #1
Newbie
(female)
 
Join Date: Jan 2013
Location: Warrington Cheshire England
Posts: 6
junekni HB User
Cool Autophony and Tinnitus

Hi I was wondering if anyone suffers with this horrible condition that I have it is quite rare they reckon only one in 10,000 get it so it had to be me. It started with an inner ear infection which has left me with awful Autophony so every time you swallow or eat or chew you can hear it but it does fluctuate quite a lot also I have tinnitus in my right ear I have had an MRI scan everthing is fine saw several ENTs who just say I have to live with it. Its worse when I try to sleep my ears feel full and the tinnitus just kicks of worse so I get little sleep still waiting to go to the tinnitus clinic this is from March last year. I have seen a specialist for my jaw and various other specialist but no one seems to care. they thought it was Menieres but the tablets they gave me just made it a million times worse because at first I had vertigo, but not now I think it is my Eustation tube that doesnt close but I cant get anyone to confirm this. So I would appreciate any help.

 
Reply With Quote
Old 01-22-2013, 11:08 AM   #2
Junior Member
(male)
 
Join Date: Jan 2013
Location: England
Posts: 14
CobraBeer HB User
Re: Autophony and Tinnitus

Hello there,

I have been dealing with the same symptoms for over 17 years now. Seen over 20 ENTs (including otologists and neuro-otologists), most via the joke that is the NHS. Been misdiagnosed with Patulous Eustachian tubes (PET), had unnecessary surgery, which has made things worse. Unfortunately, no one can figure out what is wrong! Just a bunch of possible theories, some make sense, some don't! Have been offered experimental treatments, but I have declined, as I can't afford them and I am not sure if it is worth the gamble (risk vs reward). Nothing is going to happen through the NHS.

If I were you, I would at the very least want to know if I do or don't have PET. If I may, here's a suggestion, there is an excellent neuro-otologist based in London, if you can afford a one off private consultation and the cost of associated tests, visit him. It may give you something to go on!

Regards

Last edited by moderator2; 01-22-2013 at 11:09 AM.

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-23-2013, 06:58 AM   #3
Newbie
(female)
 
Join Date: Jan 2013
Location: Warrington Cheshire England
Posts: 6
junekni HB User
Smile Re: Autophony and Tinnitus

Hi There,

Thanks for your response I am so glad I am not on my own with this condition ,how did yours start originally you say you have had it for 17 years how have you coped for so long because I some days feel like ending it all because I get so low I also have been getting really bad headaches I cant sleep, this all started with a middle ear infection last March I went to the doctors had all kinds of medication they just wouldnt even send me for a scan I paid myself for an MRI scan all he was concerned about was I had nothing nasty, I had to wait and see a neurologist but at the time the headaches had gone, I must admit the NHS are terrible and Bupa not much better. I even went to see the specialist at the dental hospital because the ENT suggested it could be TMJ but it isnt. I was of sick I lost my job so 2012 wasnt a good year. I still havent been to the tinnitus clinic I just feel I have been really messed about In early May last year I went to my local A&E because I was in so much pain and the doctor there just read me the riot act as if I was wasting her time. because she had so many patients who had heart condition. and youv'e had sinus problems for six weeks dont bother me. I should of reposted her but I was so flabergasted I just walked out so thats your NHS for you, they dont turn drunks and people who do drugs away its just a joke. Can you fly I even cancelled my holiday last year because I was so ill and is there any medicatition that helps you. Many thanks for your reply look forward to hearing from you June.

 
Reply With Quote
Old 01-24-2013, 11:07 AM   #4
Junior Member
(male)
 
Join Date: Jan 2013
Location: England
Posts: 14
CobraBeer HB User
Re: Autophony and Tinnitus

My autophony and ear symptoms started after a blow to the side of my head (the area where the jaw joint meets the ear).

What was the name of the inner ear infection you had?

I've had both MRI and CT scans, both have pros and cons, my neuro-otologist insisted on getting both done. My CT scans show thinning of the semi-circular canals, which can cause autophony!

Unless you have a textbook condition, the NHS is useless! Docs simply don't care, they want to make life as easy as possible for themselves (at least that is my experience).

I've tried tinnitus re-training therapy with noise generators (little ear pieces like hearing aids). Waste of time and effort in my case. Might be worthwhile for you to try, you got nothing to lose!

I believe TMJ can cause a variety of ear problems. It messes up the mechanics and normal function. It is playing a part in my case! I have tried wearing a splinter, it made my bite worse and no improvement for the ear symptoms. Again, might be worthwhile for you to try, you got nothing to lose!

You need to research your doctors and don't see any old one! There is plenty of information available online to find the good ones.

I can fly because I have tubes in my eardrums, so no problem! You could try decongestants and hard boiled sweets when taking off and landing, more you swallow, the better, swallowing opens up your Eustachian tubes and equalises ear pressure! You can even buy special ear plugs called ear planes! Before I had tubes in my eardrums, I tried them, one ear was fine, didn't work for the other! Worth considering!

If you reply, could you please write in paragraphs and not in one block, because it is difficult to read. Thanks.

 
Reply With Quote
Old 01-26-2013, 03:40 AM   #5
Newbie
(female)
 
Join Date: Jan 2013
Location: Warrington Cheshire England
Posts: 6
junekni HB User
Re: Autophony and Tinnitus

Hi Sorry for the long explanation,

What is the name of the specialist you saw in London I cant seem to get anywhere with my doc's and specialist he just said you would have to live with it and it will probarly get worse.

I still don't know properly what I have because no one has actually done any scans on my ears to find out what the problem is. Really unhelpfull.

It started with a middle ear infection fluid in the ear but progressed worse I could feel all this fluid moving up and down in my head but the pressure was so intense I tried all kinds of antibiotics but they didnt work. The doctors just didnt seem to believe me.

I even paid £150.00 for an ear popper from a company down South but it didnt seem to make any difference.

But as I am out of work at the moment I cant afford to go private for
any further treatment I seem to have good days and bad days. My husband is starting a new job so hopefully I will be able to get these tests sorted. I will keep in touch and let you know how I get on.

Regards.

 
Reply With Quote
Old 01-26-2013, 03:19 PM   #6
Junior Member
(male)
 
Join Date: Jan 2013
Location: England
Posts: 14
CobraBeer HB User
Re: Autophony and Tinnitus

Ahhh, it started with a middle ear infection! Sorry, I misread your post and thought it was an inner ear infection!

Does it feel like you have fluid in your ears? Do you have a full feeling or a blocked sensation? How are things now?

How would you describe your autophony? What internal noises do you hear? Is it a bony sound? Do you hear your breathing loud in your ear, kinda like darth vader? Can you hear your eyeballs moving?

Would you believe, the specialist I saw in London, his ENT clinic is advertised on this forum! I just noticed it! Can you see it?

 
Reply With Quote
Old 01-29-2013, 01:15 AM   #7
Newbie
(female)
 
Join Date: Jan 2013
Location: Warrington Cheshire England
Posts: 6
junekni HB User
Re: Autophony and Tinnitus

Hi the symptoms are getting worse I have blocked ears I can hear eveytime I swallow or chew, it does fluctuate it is like a bony sound inside my head I sometimes can hear when I turn my head suddenly it is so annoying.

But with the Tinnitus in my right ear, Its seems to get a lot worse when I try to sleep Im getting terrible headaches I asked the doc what could I take he said nothing, there must be something I can take or try to ease this situation I just try to get on with my life, but I must admit it is making me depressed.

When Im outdoors my hearing sounds so distant it doesn't sound as if it is coming from me [if you understand what I mean] as people dont really understand how you are feeling it is quite difficult to explain if you haven't got this horrible problem.

My husband started a new job so I am going to make an appointment to see
another ENT privately to get some tests done as soon as possible. I can't see that specialist in London on the web site, is he really good would you recommend him.

 
Reply With Quote
Old 02-03-2013, 12:57 PM   #8
Junior Member
(male)
 
Join Date: Jan 2013
Location: England
Posts: 14
CobraBeer HB User
Re: Autophony and Tinnitus

Quote:
Originally Posted by junekni View Post
Hi the symptoms are getting worse I have blocked ears I can hear eveytime I swallow or chew, it does fluctuate it is like a bony sound inside my head I sometimes can hear when I turn my head suddenly it is so annoying.

But with the Tinnitus in my right ear, Its seems to get a lot worse when I try to sleep Im getting terrible headaches I asked the doc what could I take he said nothing, there must be something I can take or try to ease this situation I just try to get on with my life, but I must admit it is making me depressed.

When Im outdoors my hearing sounds so distant it doesn't sound as if it is coming from me [if you understand what I mean] as people dont really understand how you are feeling it is quite difficult to explain if you haven't got this horrible problem.

My husband started a new job so I am going to make an appointment to see
another ENT privately to get some tests done as soon as possible. I can't see that specialist in London on the web site, is he really good would you recommend him.
Did you ever get tests done to check the function of your ET and middle ear? Any ear tests at all?

I saw Mr Brookes based at Harley St in London (his clinic is advertised on this board). I think he is one of the best in the country. I have also heard good things about Mr Irving in Birmingham, not seen him myself though!

 
Reply With Quote
Old 02-04-2013, 03:08 AM   #9
Newbie
(female)
 
Join Date: Jan 2013
Location: Warrington Cheshire England
Posts: 6
junekni HB User
Re: Autophony and Tinnitus

Hi No I haven't had any proper testing for my ears only the MRI scan of the whole of head and ears, thats why I am not happy with the three ENTS I've seen they dont seem interested in doing any proper investigations. Looks like I will have to go Private again. Could you tell me roughly how much The ENT Mr Brookes charges for the testing, soon as we are on our feet I will book in to see him in London, money does talk.

 
Reply With Quote
Old 02-12-2013, 11:54 AM   #10
Junior Member
(male)
 
Join Date: Jan 2013
Location: England
Posts: 14
CobraBeer HB User
Re: Autophony and Tinnitus

Hi June,

I am shocked the ENTs you have seen did not do basic tests to check the function of your ET.

You would need to contact them directly for that information.

All the best.

 
Reply With Quote
Old 04-13-2013, 09:16 PM   #11
Newbie
(male)
 
Join Date: Jul 2012
Location: Victor,NY
Posts: 4
LawryH HB User
Re: Autophony and Tinnitus

Well I now see I am not alone. Exact same symptoms and diagnosis. I have been
fighting this for 3 years. Been to 3 ENT specialists and neurologist also have had
the pET diagnosis too.

I find reading and doing work on PC quiets the ringing down and then I head for bed.
My Hyperacusis/Autophony/Tinnitus is only in my right ear, however I am now losing
my hearing in both ears. If I sleep on my left side or back the symtoms are not as bad but like you if it goes on at night I canít sleep.

Keep me posted. I start Tinnitus Retraining (TRT) next month. If I mention the Autophony they will probably just look stupid or something

Last edited by Administrator; 04-13-2013 at 11:11 PM.

 
Reply With Quote
Old 04-26-2013, 03:15 PM   #12
Newbie
(female)
 
Join Date: Apr 2012
Location: Naalehu, Hawaii
Posts: 1
KauWahine808 HB User
Re: Autophony and Tinnitus

Aloha CobraBeer,
I think we spoke on another blog about a year ago.
At that time I was 'stabbing' for answers about my autophony. You even sent me photos of PET's
Well, since that time, I finally saw the 1 & only Neurotologist/Otologist in Hawaii.
Had MANY tests.
No PET....he said he thought it was Perymph Fistula. Had surgery lasy July 30th to my left ear, (& he decided to put in tubes in both ears at the same time). After about a week, my pulsatile tinnitus was gone, he found both round & oval fistulas.
Well, I as sad to say I also still have the autophony...and even worse, now get "muscle spasms"? that sound like firecrackers (because of the autophony amplification).arrgh.
After many months, He said lets try Clonazapam .05mg 3x a day.....after a about a week it was gone!
Then about 3 weeks ago, the Physical Therapist working with me on my still bad neck from accident. She said she was going to scholl to be a massage therapist and asked me if I'd like that, as mu muscles are tight. I said "sure"! at first it felt awesome, (I was on my back)..the was rubbing my shoulders...then all of a sudden she grabbed hold of my ears & pulled outwards VERY,VERY firmly!! I could feel & hear something 'pull' like it was at the surgical site!! Since then I can hear the crackling,popping , thumping...it returned 2 days after her manipulation.
I was/am mortifiied!!! I callld my Neurotologist last week ..he said it was quite unlikely that she damaged the surgical site. I am still on tlhe Clonazapam..now doubled dose. An addiction I didn't want, and will have to deal with.. I have appt with my Neurot. on April 10th... I think he wants to cut the muscle he thinks is spasiming. I am at my wit's end..hard to think when u have autophony...I don't want to become depressed. the Doc had said he didn't think I will have to live like this the rest of my life.....I am becoming to doubt that..you, with your 17 years now..only over a year for me....I had the tubes removed couple months ago.
Ear popper? What is it what can it do to help me?
I still think it is my jaw! I can't wear a guard because I have an upper denture.
I am wondering now what any other options may be....any suggestions (again!!?)
Hope to hear back soon,
Aloha

 
Reply With Quote
Old 04-26-2013, 04:14 PM   #13
Newbie
(male)
 
Join Date: Jul 2012
Location: Victor,NY
Posts: 4
LawryH HB User
Re: Autophony and Tinnitus

Hello, I Ďm amazed at all the similarities to what I have. The autophony is the primary reason I get hearing problems along with the Hyperacusis/Tinnitus the ENTís say is just the way it goes, there is nothing I can do SureÖAlso all along I wanted them to looking into TMJ but no one would listen to me. I have tried medicines and ear plugs. This Clonazapham is new to me I will call the ENT on Monday! Oh! By the way, I also have
AMD which does not help me as the noise and not seeing well, adds to the confusion,.
Thank you , I will keep in touch!

 
Reply With Quote
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 06:47 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!