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Old 03-20-2008, 12:56 PM   #1
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AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

I saw a so called 'super specialist today'. We did many tests and had a detailed discussion.

I have just found out the truth about PET, Autophony and TMJ Disorder and I have actually been in contact with a person who was diagnosed and successfully treated after this discovery was made. (This lady told the my specialist, he can pass her email address to people so she can share her experience).

TMJ has a profound affect on the Trigeminal nerve. The Trigeminal nerve innervates the Tensor Veli Palatini muscle - hypotonicity can cause ET dysfunction and Aural Fullness. The Trigeminal nerve innervates the Tensor Tympani muscle - it can cause Tinnitus, Hyperacousis, etc.

It has been proven that TMJ Disorder can cause all the symptoms of PET and ET dysfunction.

If your ENT cannot find a correct diagnosis for anyone suffering - May I suggest if you suffer from ET dysfunction or PET accompanied with tinnitus, hyperacousis, full feeling and along with these symptoms if you also suffer from TMJ disorder, you should have investigations done to see if TMJ Disorder is playing a part in your ear problems?

If it is TMJ Disorder, there is primarily only 2 treatments, Botox injections to stop the trigeminal nerve sending signals to the offending muscles OR to re-align your jaw - this is a LONG process and is not always successful unfortunately If your jaw can be re-aligned sucessfully, symptoms can dissappear.

The lady I was talking about before was treated by Botox injections in her TVP muscle. The problem is repeat injections are needed every 3-9 months and there is a risk that the body will become immune to the botox and therefore those injections will no longer work and there is NO other injections available in the medical world that does the job of botox


Hope this helps people

 
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Old 04-19-2008, 07:43 PM   #2
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Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

I completely agree with this! My ear problems started soon after my TMJ problems. Doctors look at me like I'm crazy when I say this, but I firmly believed these problems are linked!!

 
Old 04-20-2008, 08:08 PM   #3
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Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

I am glad you found the source of yours. I know it is a relief.

Evidently there are a host of things that can cause autophony. Mine went away when I took antivirals.

Last edited by moderator2; 04-21-2008 at 06:01 AM. Reason: the huge quote!

 
Old 04-21-2008, 06:49 PM   #4
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Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

So John, what are you going to do? I have been to so many Drs and had so many opinions that I have no idea what is wrong. Told allergies, TMJ and now Cochlear Hydrops. That I have fluid in the middle ear. I have been put on a water pill as they say it is cuased from too much sodium in the body and the water pill will help flush it out. I am told if it works this is what I have. If it does not then back to square one. I have been battling this problem now for 10 months and no positive diagnosis.

My main complaint is the feeling of fullness in my left ear which seems to be the most common ear for these problems. I also have the hearing my voice in my head and a vibration that gets louder the louder I talk. To just listen life is mostly normal but to talk is agony. I cannot be in a crowded room such as a restaurant with a lot of chartter and background noice. Drives my ear crazy. I am constantly putting my hand over my ear when I talk. Not sure why but seems to help. I have had a CAT Scan and MRI and all normal. My hearing is a little diminished according to the audiologist. I had a dream one night that my ear popped and everything was normal again. I was jumping up and down and dancing around the room I was so excited. Then, I woke up!

 
Old 04-21-2008, 08:46 PM   #5
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Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

Quote:
Originally Posted by SanDee53 View Post
So John, what are you going to do? I have been to so many Drs and had so many opinions that I have no idea what is wrong. Told allergies, TMJ and now Cochlear Hydrops. That I have fluid in the middle ear. I have been put on a water pill as they say it is cuased from too much sodium in the body and the water pill will help flush it out. I am told if it works this is what I have. If it does not then back to square one. I have been battling this problem now for 10 months and no positive diagnosis.

My main complaint is the feeling of fullness in my left ear which seems to be the most common ear for these problems. I also have the hearing my voice in my head and a vibration that gets louder the louder I talk. To just listen life is mostly normal but to talk is agony. I cannot be in a crowded room such as a restaurant with a lot of chartter and background noice. Drives my ear crazy. I am constantly putting my hand over my ear when I talk. Not sure why but seems to help. I have had a CAT Scan and MRI and all normal. My hearing is a little diminished according to the audiologist. I had a dream one night that my ear popped and everything was normal again. I was jumping up and down and dancing around the room I was so excited. Then, I woke up!
I had the same diagnosis, 'cochelar hydrops'. I think the water pill is to reduce the fluid in the inner ear. THey also could not explain why I had autophony which does not usually occurr with cochlear hydrops or Meniere's disease. As I said, the acyclovir took way the autophony and restored hearing both to about 90% I would say. It is worth a try.

When he autophony is very bad and you want to speak loudly but don't dare, put your finger lightly in that ear (don't cover it up altogher) and it will reduce the autophony.

 
Old 04-22-2008, 05:31 PM   #6
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Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

Myrtle59 I do that. I find myself covering my left ear when I talk especially if I have to talk loud. I just looked up acyclovir and it says it is for genital herpes. Does not mention anything about the ears. I need to know what I am talking about befor i mention it to my Dr. I am beside myself over this. Just not knowing what has caused it or what the cure is. All the Drs seem so puzzled but judging by all the people I have found on sites like this it is hard to believe Drs are not more up on this problem.

 
Old 04-23-2008, 12:05 PM   #7
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Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

Quote:
Originally Posted by SanDee53 View Post
So John, what are you going to do? I have been to so many Drs and had so many opinions that I have no idea what is wrong. Told allergies, TMJ and now Cochlear Hydrops. That I have fluid in the middle ear. I have been put on a water pill as they say it is cuased from too much sodium in the body and the water pill will help flush it out. I am told if it works this is what I have. If it does not then back to square one. I have been battling this problem now for 10 months and no positive diagnosis.

My main complaint is the feeling of fullness in my left ear which seems to be the most common ear for these problems. I also have the hearing my voice in my head and a vibration that gets louder the louder I talk. To just listen life is mostly normal but to talk is agony. I cannot be in a crowded room such as a restaurant with a lot of chartter and background noice. Drives my ear crazy. I am constantly putting my hand over my ear when I talk. Not sure why but seems to help. I have had a CAT Scan and MRI and all normal. My hearing is a little diminished according to the audiologist. I had a dream one night that my ear popped and everything was normal again. I was jumping up and down and dancing around the room I was so excited. Then, I woke up!

Hi San Dee,

Before I attempt any kind of treatment, be it medicinal or surgical, I need at least 3 doctors/surgeons to agree with each other to confirm the root cause of my ear problems, the super specialist I saw is convinced TMJ Disorder is playing a part in my ear problems (he even says that my ET dysfunction is causing my autophony and that TMJ disorder is responsible from my ET disorder, this can happen as proven by the lady successfully treated by Botox injections)), however 2 other docs I saw said the TMJ disorder can cause all my problems, but it is highly unlikey that it is causing my Autophony - I can live with all my symptoms apart from the Autophony (this is my main complaint, autophony is really life spoiling).

I am in the process of seeing 2 ENTs in the coming weeks, I will of course let you know what happens.

I am sorry you are having ear problems - all I can suggest for you is - do NOT go to any old ENT, research your docs first, you really need to find a doc who is going to be helpful, don't waste your time with any old ENT, once you find the right doc for you, only then things will move forward for you (I really don't understand how some people become docs, it is VERY difficult to find a decent doc in this day and age, unfortunately).

If you cannot tolerate sounds/noises in a crowded room, this is most suggestive of Hyperacousis syndrome - you should have this possibility investigated. Have you talked about Patulous Eustachian Tube (PET)with your ENTs - you should also have this possibility investigated. Our ear problems are quite unusual, so we have to find the root cause through a process of elimination, for example, if it's not PET, move onto the next ear disorder it could be, etc, etc.

Don't give up, be strong, you will get through this, but it may be a long process, so prepare yourself. We have HOPE on our side.

Take Care,

John

Last edited by JohnUK; 04-23-2008 at 12:08 PM.

 
Old 04-23-2008, 01:30 PM   #8
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Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

Quote:
Originally Posted by JohnUK View Post
Hi San Dee,

Before I attempt any kind of treatment, be it medicinal or surgical, I need at least 3 doctors/surgeons to agree with each other to confirm the root cause of my ear problems, the super specialist I saw is convinced TMJ Disorder is playing a part in my ear problems (he even says that my ET dysfunction is causing my autophony and that TMJ disorder is responsible from my ET disorder, this can happen as proven by the lady successfully treated by Botox injections)), however 2 other docs I saw said the TMJ disorder can cause all my problems, but it is highly unlikey that it is causing my Autophony - I can live with all my symptoms apart from the Autophony (this is my main complaint, autophony is really life spoiling).

I am in the process of seeing 2 ENTs in the coming weeks, I will of course let you know what happens.

I am sorry you are having ear problems - all I can suggest for you is - do NOT go to any old ENT, research your docs first, you really need to find a doc who is going to be helpful, don't waste your time with any old ENT, once you find the right doc for you, only then things will move forward for you (I really don't understand how some people become docs, it is VERY difficult to find a decent doc in this day and age, unfortunately).

If you cannot tolerate sounds/noises in a crowded room, this is most suggestive of Hyperacousis syndrome - you should have this possibility investigated. Have you talked about Patulous Eustachian Tube (PET)with your ENTs - you should also have this possibility investigated. Our ear problems are quite unusual, so we have to find the root cause through a process of elimination, for example, if it's not PET, move onto the next ear disorder it could be, etc, etc.

Don't give up, be strong, you will get through this, but it may be a long process, so prepare yourself. We have HOPE on our side.

Take Care,

John
John,

Unfortunately I do not have too many choices as I can only see who my Dr refers me to who is in my insurance network. There have been a few I would like to see but my insurance will not cover. I have had tests done twice over the last 6 months with an audiologist. He said there is nothing wrong with my Eustation Tube. Treatment for TMJ was unsucessful. Traetment for allergies also unsucessful. So far no luck treating me for Cochlear Hydrops.

The fullness in my ears is maddening but the vibration and echo in my left ear is even worse. I get to the point I do not want to talk. When someone says what to something I have said I rely...nevermind. I have no desire to repeat myself. Oh to feel normal again. Not sure what that feels like!

 
Old 04-24-2008, 06:18 AM   #9
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JohnUK HB User
Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

Quote:
Originally Posted by SanDee53 View Post
John,

Unfortunately I do not have too many choices as I can only see who my Dr refers me to who is in my insurance network. There have been a few I would like to see but my insurance will not cover. I have had tests done twice over the last 6 months with an audiologist. He said there is nothing wrong with my Eustation Tube. Treatment for TMJ was unsucessful. Traetment for allergies also unsucessful. So far no luck treating me for Cochlear Hydrops.

The fullness in my ears is maddening but the vibration and echo in my left ear is even worse. I get to the point I do not want to talk. When someone says what to something I have said I rely...nevermind. I have no desire to repeat myself. Oh to feel normal again. Not sure what that feels like!

That is a shame, may I suggest you arrange an appointment with your ENT and discuss Hyperacousis and Patulous Eustachian Tube - have tests done to either diagnose or exclude those possibilities, we can take the next step after you have done that.

 
Old 04-24-2008, 06:20 AM   #10
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JohnUK HB User
Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

Quote:
Originally Posted by myrtle59 View Post
I am glad you found the source of yours. I know it is a relief.

Evidently there are a host of things that can cause autophony. Mine went away when I took antivirals.


You are taking antivirals for your menieres disease, how is this working out for you? is it helpful?

How is taking this medication helping your autophony symptoms? Can you shed any light as to why and how you are achieving relief from your autophony with those drugs?

Last edited by JohnUK; 04-24-2008 at 10:17 AM.

 
Old 04-24-2008, 03:46 PM   #11
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Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

Quote:
Originally Posted by JohnUK View Post
You are taking antivirals for your menieres disease, how is this working out for you? is it helpful?

How is taking this medication helping your autophony symptoms? Can you shed any light as to why and how you are achieving relief from your autophony with those drugs?
The antivirals made a very significant difference to the good for me. I had tried prednisone twice and some other things as well as changed my diet and while symptoms did fluctuate I never had improvement to equal what I have gotten from the antivirals. I cannot tell you why or how the autophony relates to the hydrops in my case, only that they happened on the same day and fluctuated together and went away (almost) together. I speculate (but I do not necessarily think my otot concurs) that IN MY CASE my hydrops was secondary to some viral thing going on in the eustachian tube or some part of the middle ear. I do not know that.

I probably should also note that I had a very bad case of cmv (cytomegalavirus) mono the previous year. I thought I had finally gotten over the residual tiredness, swollen spleen etc about 5 months before. So a person might make a case that this was the cmv reactivating. CMV is one of the many herpes family. If you check out those articles there is a school of thought that Menieres is viral in origin with one or more of the herpes family suspect. (Most everyone has some kind of herpes virus in their body - chicken pox etc). My own opinion, after hanging out with a number of Meniere's patients on line is that Meniere's probably has several origins with similar symptoms. THe autophony is so unclassic for hydrops that one dr told me I was confusing it with background noise (i wish) and another told me I had PET and it started at a different time than the hearing distortion but I just didn't notice (like they could be overlooked). Anyway, I can't answer your question, it remains a mystery.

I will say that as the hearing issues cleared up the autophony got better first (by a day or two) and fluctuations did continue 2 steps forward and one step back for a period of a month or two but now it is very significantly better. As it got better, I also had the sensation of some kind of sinus drainage thing happening behind my nose and in the ear area but I never felt any sore throat or anything like you usually do with sinus drainage.

I believe based on timing that it was the antiviral that has made the 'cure'. I did also discontinue xalatan eye drops for glaucoma a week before I started the antiviral. I do not believe that was the culprit because I discontinued it for 3 weeks last summer with no improvement but I mention it just in case someone else has a parallel.

I honestly don't have all the answers but I would talk with the dr about the possibility of giving it a try if nothing else is working and s/he doesn't see any risk.

Check out the articles. Good luck

OH, I do believe I had PET. It responded when I turned my head upside down etc. But somehow the pet was related to the hydrops. I tried the estrdiol nose spray and that my everything immediately much worse.

Last edited by myrtle59; 04-24-2008 at 03:49 PM.

 
Old 05-01-2008, 08:35 PM   #12
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Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

Myrtle59 I went to my Dr today. I actually saw the nurse practisioner and I told her what you said about the antivirals. She said...let's give it a try. It can't hurt. She also put me on Lyrica. I pray that these work. How long did it take before you started noticing a change and how long until you were 90% better? Any idea why it is not completey gone? I am almost at 11 months and I do not think I could do another 11 months.

Last edited by SanDee53; 05-01-2008 at 08:36 PM.

 
Old 05-02-2008, 07:30 PM   #13
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Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

Quote:
Originally Posted by SanDee53 View Post
Myrtle59 I went to my Dr today. I actually saw the nurse practisioner and I told her what you said about the antivirals. She said...let's give it a try. It can't hurt. She also put me on Lyrica. I pray that these work. How long did it take before you started noticing a change and how long until you were 90% better? Any idea why it is not completey gone? I am almost at 11 months and I do not think I could do another 11 months.
It took a month or so before it got to be 85% better and that is where I am now. Just hoping it stays there. I can handle a little of it.

I first noticed what I thought was a change about the 4rth day but it continued to fluctuate with the weather but the range of fluctuation kept getting better.

I did believe I had PET and so did the dr's. Now I am not so sure as I have heard an explanation of how Meniere's and the inner ear can (rarely) cause autophony. Whatever works, I am just glad to have gotten rid of most of it. Fingers crossed.

I don't know why it is not completely gone. Maybe I have some permanent damage to the inner ear or maybe I should have taken the antivirals longer. I am trying Famvir (another one) now. I am not noticing any further improvement so far.

Good luck, I would like to hear whether/how it works for you after you have time to try it.

Last edited by myrtle59; 05-02-2008 at 07:34 PM.

 
Old 05-08-2008, 09:00 PM   #14
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Re: AUTOPHONY, ET Dysfunction is linked to TMJ Disorder

Myrtle59 it has now been 6 or 7 days that I have been on the antivirals and so far no change at all. I was so hoping this would be the cure. I will give it the whole 30 days but I am losing my optomism. I have 2 days left on the prednisone which I was on before with not results but I think I was put on these for my arm and not my ears. Also taking the Lyrica. Actuially my ears have bothered me more today than they have in several days. Some days I have good days and then I have my bad days. Oh will this ever end???

 
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