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Mestermann

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Reply with quote  #51 
Hello Sean, and hello everyone following Sean's thread on the outcome of his surgery.

I haven't been at the message board for quite a while, due to extensive travelling. Through my friendly German publisher, I got in contact with an ENT specialist in Cologne, Germany. This was a stroke of luck. She performed the most extensive examinations I have undergone hitherto, including ordering an CT of my cranium to exclude any malignant, slow developing diseases, and performed the most detailed anamnesical work I have ever witnessed. She then referred me to another doctor, at the ENT department in the University Clinic of Cologne, where I went through further examinations.

Now, what this doctor told me was interesting. Whereas I have been assuming for 15 years that I have myoclonus of the tensor tympani and/or stapedius muscles, since this was the only diagnosis offered to me, she diagnosed me as having myoclonus not of any muscles in the middle ear, but of the tensor veli palatini muscle. She said that tympani/stapedius myoclonous is a common misdiagnosis, but is in fact extremely rare - so rare, in fact, that the head professor of the department had yet to observe one true case. Spasms of the tensor veli palatini occur much more often, however. These spasms open and close the eustachian tubes involuntarily, and the patient's subjective experience of this seems to be that the clicking/fluttering sounds and feeling of fullness originate in the middle ear itself. Its origins are, however, spasms located further down in the cranial muscular system - in the tensor veli palatini muscle/s.

I wouldn't know, Sean, if the somewhat mixed results from your surgery might be related to this, as I assume you underwent extensive examinations prior to the procedure, but I mention this point of wiev to you anyway.

Furthermore, the friendly doctor at the University Clinic, (who looked like Claudia Schiffers cuter sister, by the way, which made the whole thing very pleasant), told me that in Cologne, they routinely treat this condition with botuline injections into the tensor veli palatini, performed with microsurgery through the palate, every 6-12 months, with much success. The side effects of this procedure can be: Swallowing disturbances the first 1-3 weeks after the procedure. Furthermore, that the spams may move down into the larynx, and that paralysing the muscle may lead to blurred or nasal speech, also in the first 1-3 weeks after the procedure. These side effects then subside, however.

The first ENT specialist in Cologne - God bless the Germans for their thoroughness - had made an extensive dive into the subject in the meantime, and told me that this treatment - once the veli palatini muscle has been brought to peace for a while - should be adjoined by medication, so as to prevent the procedure from having to be performed twice a year. She mentioned a new therapy developed for stroke patients with involuntary cramps and spasms. I shall get more details on this, and keep you posted.

A lot of paper work has now to be done, to convince the Norwegian health insurance that I really need this procedure performed abroad, so that they should cover it. If this succeeds, I shall certainly give it a try in the fall, when I return to Germany.

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Reply with quote  #52 
hi mestermann,

after my tenotomy surgeries (cutting the stapedial muscle & tensor tympani ) i told the doctors it seemed my whole e-tube was spasming. i was told this was totally impossible, there are no muscles in there. this was said by the highest (ENT) prof in a university hospital in the netherlands where i live. needless to say, the surgeries i had didnt help one bit, and till today my ears spasm to the softest sounds, including voices.

i read about palatal myoclonus which seems to involve the tensor veli palatini muscle. but then, as all my ENTdoctors and neurologists said, you would have visible spasming of the palate. i mentioned the veli palatini many times but none of the doctors responded to that. they just dont know. i believe some of them dont even know that muscle exists!

how did they diagnose you with 'tensor veli palatini myoclonus'? i think this is most interesting for many of us.

greetings

astrid
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lib

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Reply with quote  #53 
hello all,
there are at least 2 muscles in the e tube, the tensor veli palatini and the levator veli palatini, the second one will produce visible spasms in the soft palate. the first is attached to the hard palate and runs the etube.
i have myo in both the middle ear and in the tensor veli palatini muscles, along with a few surrounding muscles. the surgery for me was a relief as i definately had it in the middle ear. as dr sismanis says, there are many muscles in there and a cluster can be involved.
i would be interested in the newest treatment you speak of for the tensor veli palatini, i refused botox as if it is not done correctly it can cause more problems.
hope everyone finds relief.
lib
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Mestermann

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Reply with quote  #54 
Dear Astrid, Dear lib. And everyone else.

It would seem, though I am no ENT specialist, that lib is also right. Right in the sense that there seem to be a cluster of many combinations. Now, spasms in the levator veli palatini might be visible in the palate, whereas spasms in the tensor veli palatini only can be observed throug endoscopical observation, i.e. through the nose. I shall return to Cologne in the fall in order to confirm this. However, Astrid, it seems obvious to the docs in Cologne that myocloni in the tensor veli palatini can cause spasms in the eustachian tube. Which pretty well goes for explaining all of my symptoms, at any rate.

As to this, and as well as to the medication my first German ENT specialist mentioned, I shall return with news as soon as possible. I will not forget to do so. Please let's all keep posted.

M.



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Reply with quote  #55 
hi mestermann,

if it were the tensor veli palatini muscle then question remains how this would explain spasming in response to sound, which is what i have, obviously contrary to others who seem to have spasms that are not related to sound.

also, i had this scope down my nose as well, actually because of something else, namely vibration sensations somewhere deep in my throat on the right side. before the scope exam my nose was paralyzed in order to avoid pain during the exam. what happened was that some stuff got down into my throat. i couldnt even swallow anymore because by accident half of my throat was paralyzed as well. it was so scary. im saying this because the vibrations just went through it!

now another thing: dysfunctions in the tensor veli palatini, and yes i suspect this one as well, would cause symptoms of a patulous eustachian tube or the opposite, a plugged eustachian tube, but then this would show up in examinations like tympanometry. my outcomes of middle ear pressure were always within the limits, even if i felt my right ear had a totally wrong pressure.

what are your thoughts on this and what do you think is the source, if this is the case anyway? in my opinion its either coming from TMJ disorder that causes pressure on the nerves that run the e-tube/middle ear as well, or it is a problem of congestion coming from the sinuses, which is quite something else. i was treated for tmj-disorder three times, had three different splinttherapies, none of them worked.

reading the healthboards dept. hearing disorders im stunned by the enormous number of people who complain of all kinds of soundsensitivies, also to the extreme, in relation to problems that refer to the e-tubes and middle ears. they just dont know this is called 'Hyperacusis', although hyperacusis is just one of the symptoms and of course not the end-conclusion.

also striking is the fact that Ents continuously disagree whether someones problems are due to an e-tube that is too closed or an e-tube that is too open. i think both of the problems can exist at the same time, just like you suggest, because of a bad muscle function somewhere down the line.

the side effects of botox somewhere in that area sound awful. i wouldnt dare it.

keep us posted!

astrid




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LynnMcLaren

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Reply with quote  #56 
Yes, ((( Smiles )))

I've been following this thread and like Astrid wrote...

Quote:
how this would explain spasming in response to sound, which is what i have, obviously contrary to others who seem to have spasms that are not related to sound.


Yes.. Contrary to others with other muscle reactions, internal noises,
spasming.. Mine was directly related to sound in response to sound..
It's not TMJ though I was on the bandwagon back then with a lot of
others on this thought.. It's not sinus as I've had sinus and colds ect..
Since I had that .. I believe I know what mine was directly related too
as what happened back then around the time it came on....
For me.. Liz's providers site explains it the best....
I no long expirence that it's been gone along time for me....
Yet.. I have a problem with a left ear thats lower in volume and it echos
inside there and internal rumbling, booming ect..  Which I can't remember
haveing back then with my spasming ears.. I think it came later on I
would have to go view the old network Cd and I can't do that right now..
Because if I had the booming at that time with the severest H..
It would have been super loud and I remember starting a thread on it..
Asking others if they had that.. After the worst year of H..
And maybe I got that from.. A noise trauma when I was blasted by a
gameing system turned on like full blast by one of her children by accident..
With H... I suffered real bad imediate earpain from that and I wrote about that incident long ago....
it was at my sisters home that happened ..
when I ventured out with H.. I had no earplugs in just used my fingers
though I used my hands over my ears instead it happened so fast..
I had no time to react...    

I'm just not sure but it seems about right..  
I expirenced no internal sounds with the spasming except static like
a speaker static.. And the Da Da Da Da and other ear poping things but
that was seperate not in relation to the sound reactive spasming...
The sound reactive spasming only made the sounds sound more distorted ,
sharp, tinny ect just strange sounding and felt inside my ears.....
I remember when I was getting worse and worse and and in takeing to
my room before that.. That things were heard as loud.. I knew there
was something really wrong and going around streetcars and traffic was
like an unbelievable loud expirence abnormally loud and I know how it
regularly sounds because I lived around that noise alot of my life...
I was haveing big problems back then but expecailly after my collapse..
I could no longer travel as it got far worse and then changed....
I developed this.. What Astrids talking about... I understand it..

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Lynn
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Reply with quote  #57 
hi lynn ,

i know you recognize alot in my symptoms and so do i with yours... i think we went through the whole scala of hyperacusis misery, lets summarize it all:

what about the click syndrome, the loudness syndrome, the cocktailparty syndrome and the startle syndrome!
as if this hasnt been enough we also went through the spasming, fluttering, booming, rattling, thumping, popping, throbbing, tapping, drumming, crackling, rumbling, twitching, vibrating, static and echoing. furthermore we went through the fullness, distortion, earpains, pressure troubles, the fears and the screaming tinnitus.
im sure i forgot the other half of all the symptoms... like the sounds sounding off-key and the hearing of an alien...

are we the only ones who are familiar with the whole package?? lol.
sometimes im jealous of the hyperacusis patients who only complain of sounds sounding too loud, arent you?


dutch regards lynn!

astrid




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LynnMcLaren

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Reply with quote  #58 
Hi Astrid, ((( Smiles ))))

I've been thinking about this and also searching around the web and...
I found this...

The stapedius reflex is also invoked when a person vocalizes. In humans, the vocalization-induced stapedius reflex reduces sound pressure levels reaching the inner ear hair cells by approximately 20 decibels. The stapedius reflex causes an acousto-mechanical increase in impedance.

Does invoked mean react???
Because I can get the rumbling and boom boom boom...
To my own voice usually only though..
If I'm singing in vibrato/vibration or with high emphasis..
Which means inhancement and if I was talking really loud..
Or in an enclosed acoustic small area..
I'm just glad it doesn't usually do that with normal talking or singing..
But it happens when I vocalize but it's like internal noise at a high level
of emphasis for my voice...
Kind of like my tolerances are now at a higher level....
There's that limit...But different reacting.. Ones internal...
The other is like I didn't get my normal tolerances back pre T and H..
External.. 
But this is good...
My tolerances are pretty Hi..
I'm doing pretty good..
I can do alot...  
But in blowing the flute or blowing a ballon or blowing "air " 
out .. It doesn't seem to make my ears rumble..
Not like yawning or burping or a internal strain does and I don't drink soda
anymore so I don't have to think about the latter so much...
But it's more with internal sounds...
And the other seems more external...
But at a higher level of sounds..
It's like something didn't heal up 100 percent..
Like cured...  

What do you think about that??? 

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Lynn
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Reply with quote  #59 
hello lynn

i wish i knew what to think about that! lol. what i can imagine is that your stapedial reflex used to be absent or elevated during the worst hyperacusis phases but has returned close to normal. i think alot can go wrong with that reflex, thereby determining the severity of the hyperacusis. as you know my reflex, though it hadnt been OK either, has now been 'cut', so there will never be a normal response to sound anymore, and that i feel! with each sudden loud sound i cringe because in the operated ear it sounds ten times louder than in the other ear: a complete disbalance that often leaves this ear in pain for a couple of hours afterwards. i really have to avoid any loud sound, in particular when unexpected, but how to avoid that anyway?

leaves me wondering why my ears keep reacting with the wildest spasming and vibrations to esp voices. i avoid phone conversations. who would be able if the voice on the other side makes the opposite ear go crazy with severe thumping! my right ear is also sensitive to pressure changes, like closing a door e.g. in the house. not the sound of it is the problem, but the pressure. i always have to force air into that ear to get some relief, but you know what i think about ENTs, they are a joke when it comes to e-tube problems. my e-tubes were always fine they said, no kidding!!! lol.

anyways, glad youre making such good progress. yes, the stapedial reflex is responsible for sound tolerance, esp. high frequencies (probably your singing! lol), sudden sounds, and loud sounds.

hope you keep doing well,

always,

astrid

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LynnMcLaren

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Reply with quote  #60 
Hi Astrid, ((( Smiles )))

I tryed blowing hard into with my hand like I would blow up a balloon..
And I don't hear it rumbling ect..
When I blew on that flute awhile back that my child has..
I don't remember my ears rumbling but I remember my ear reacting like
they were going to give out in tolerances..
That I had to stop it could not take anymore..
I felt it it felt like discomfort and..
Maybe pressure or numbness or fullness or just I felt it really strong..
Something was happening..
That I couldn't tolerate that and I had to stop or else..
I'm not sure of or else what???
It felt like that it would give out...  
I pushed it allready and my ears were effected I felt it happeing so I stopped..
I felt it happening strongly in my ears it's so hard to explain but it's
not normal..
But why only internally deep air sounds of movement or the sound of ones voice can be heard intenally inside too so can a burp a yawn ect..
Movement of air has a sound I guess..
Maybe different sounds depending on the movement and if it has a release
outward??? 
And the internal/outer is like with my head in an enclosed area or smaller
acoustical space..
Like I was into an armour.... I'm not sure how to spell it but..
A big cabinet and it had CD's in it and I my child wanted a CD but didn't
know all the songs so I was looking at them and singing parts of them
for her and my voice in their made my ears just rumble wildly..

And I've expirement with it after that and is has to do with the acoustics..
Vibration or even internal vibration and sound..
But swallowing makes clicking sounds but I can make thoses sounds
without swallowing or even moveing my jaw too..
And about when I took that testing was before I had bad H..
Or even really noticed H as H yet..
I remember when takeing that it was very hard for me to do so..
I wasen't tolerateing it well and ...
I did place the results of both the testings results on this board..
And I did notice that it refllected that I did not finnish totally the whole 
testing ..  One area of it but a short distance toward the end..  
Though most of it I completed  because I remember I wasen't sure at that
time what the testing was called..
I got the copys from them of my hearing tests at a much later date.. 
But I do remember I had problems with it and forced myself through it..
But it wasen't like haveing bad H or classic H..
It was like I came down with tinnitus 24/7..
It wasen't gettng better or going away....
Then it seemed to get worse and with more sounds and became reactive..
It was early on..
With that antibiotic and a loud on hi running all night double window fan..
Irrigation of my ears and a loud exposion popping like lightbulbs exploding.
Thats what it sounded like..
After they put that stuff I guess cleaning stuff to return in three days inside my ears.. And then the MRI and then acoustic reflex test..
That was early on in my tinnitus expirence..
I don't know when my stapedial stopped responding or malfunctioned ect..
All I know it was after theses things..
I'm pretty sure of that as my MRI was in August and my acoustic testing was in September... 
My tinnitus turned into reactive tinnitus around that area of time..
With all that going on..
Sound sensitive tinnitus that was reacting to outer sounds..
Expecially static sounds like computers , lights , water, engines ect..
I didn't have what one would call classic H then..
Maybe componets of it I don't know..
All I know is what happened to me and how bad it eventually got..
And my ears spasming to outer sounds came later on..
It was progressive for me based on events..
I believe I injured a nerve in their maybe damaged it in some way ...
And it only healed up so much..
Nerves to muscles..
But this rumbling booming thing is different then the outer spasming
to sound thing was..
I didn't hear any internal noise with it..
Only like static sometimes like speaker static..
Plus I had the loud EEEEEEEE reactive to sound thing..
It sounded like hair cells were breaking/ snapping in there...
It was a scarry thing to expirence...     
And my left ear lags behind my right now..
And in my left ear is like hearing through a tunnel..
The volume is much lower in there..   
Whatever it is didn't totally go away as I still have theses certain
issues with my ears but at a very high level of tolerances of sounds..
But with the air issue..
There must be a reason that blowing out doesn't do what the air
within or the sound within suppressed ect  does..
Or the vibration of movement I don't know?? 
It's internal sounds..
And blowing out air is a release valve???
Not contained...
It must be that I guess but how to explain it???
There must be some explanation out there for this??
Have you read of one????

Take Care
Lynn  ((( Hugs))))                                  


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LynnMcLaren

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Reply with quote  #61 
Plus.. I just wanted to add.. (((( Smiles )))

You wrote..

i
Quote:
wish i knew what to think about that! lol. what i can imagine is that your stapedial reflex used to be absent or elevated during the worst hyperacusis phases but has returned close to normal


Maybe it was traumatized in some way so it recovered from no response..
Then it came back some in some way and was reacting elevated to sounds
or not responding right and then maybe now..

It's not functioning right but not under a trauma like or the event of
whatever messed it up or caused it to be paralized in the first place..
Some kind of ear trauma it was reacting too???
Maybe more then one kind /one event..

I haven't went back for a second acoustic test and not sure I want too..
So I really don't know how it is now but it could be like that..
Not totally normal so therefore the rumbling and booming..
To internal sounds????
But not like now under the condition of classic H..
There was so many things that happened to me back then..
I think I probably expirenced different causes of hyperacusis..
Because of that....
One a super duper sounds loudness disorder and the other problems as
well with the sounds too???
Just different malfunctions working together??? 
Maybe thats why sound therapy worked for me..
But I could tell this because my disorder was progressive over time
and very different like night and day during/ after my tolerances collapsed..
Everything was heard real loud before that thats why I had to get away
to my room beforehand.. 
I expirenced problems then..
I was tryng to get help... 
And after it got really bad..

So what do you think???

Take Care
Lynn

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Lynn
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Reply with quote  #62 
hi lynn!

you ask alot of questions that i think even the best ENT wouldnt know how to answer, lol. your hyperacusis seems in many aspects similar to mine, though the progression of symptoms came up in a different order. certainly there must have been an element of TMJD involved, playing games with the e-tube, middle ear, and like you say, the nerves to the muscles. in that scenario outcomes of tests will not reveal whats going on because the relation between jaw and ear cannot be examined.

why you have the rumbling esp with internal sounds is something i try to understand. probably theres some blockage at the level of the e-tube resulting in a disbalanced passage of air so that your own voice has this rumbling effect at certain frequencies. you also mentioned that the left ear is different from the right, you speak of a tunnel effect in there. this would also explain theres disbalance. i think such disbalance is able to produce the weirdest symptoms. in another thread on here i read of a case that resolved after intensive rolfing, which i feel is very interesting because it comes close to the source of many hyperacusis cases. likely there are nerves (cranial 5 and/or 7) responsible that cannot serve the branches thus the tiny muscles inside the ear as they should, once under pressure. and thats a muscular disbalance.

what would you say?

dutch greetings from

astrid

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LynnMcLaren

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Reply with quote  #63 
Hi Astrid, ((( Smiles )))

I think that is so true..

Quote:

you ask alot of questions that i think even the best ENT wouldnt know how to answer, lol.
 


Hum.. Thats interesting..

Quote:

your hyperacusis seems in many aspects similar to mine, though the progression of symptoms came up in a different order.



About the TMJ.....
I don't know about that because I had TMJ since the late 80's..
and I underwent treatment back then though not fix..
And I never ever had this before...
Ever back then..... only after my H.....
It must be like a nerve muscle thing or something..  

Quote:
certainly there must have been an element of TMJD involved,
playing games with the e-tube, middle ear, and like you say, the nerves to the muscles. in that scenario outcomes of tests will not reveal whats going on because the relation between jaw and ear cannot be examined.


But it's true there is an imbalance there...
Me too....

Quote:
why you have the rumbling esp with internal sounds is something i try to understand.


Certain frequencies of sound...
Yes that's it and vibrational sound...
It seems to be that way....
Need to think about it....
Nerves cranial 5 or 7...
Interesting.......

Thanks Astrid...
More to think about ...
Your American Friend... (((( Smiles ))))

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Lynn
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LynnMcLaren

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Reply with quote  #64 
Hi Astrid, ((( Smiles )))

I know it's been awhile since I've come to this thread..
But I'm still thinking about this as I still have this rumbling booming thing..
It's more like when I sing real high pitch loud with emphasis..
Or vibrato...
It sets off this rumbling thing in my ear to internal sounds.....
My voice...
But also when I was haveing my roof pressure washed recently..
I felt it in my ears/muscles the vibration and then it got painfull.. 
I think my left ear is messed up in some way..
But the E-Tubes..
Thats what they gave me the becanese nasal spray for and my tinnitus got
worse I heard crickets in my ears 24/7 for awhile..
But the crackling I hear in my ears but it's not from my jaw..
I know that for sure..     

Quote:

why you have the rumbling esp with internal sounds is something i try to understand. probably theres some blockage at the level of the e-tube resulting in a disbalanced passage of air so that your own voice has this rumbling effect at certain frequencies. you also mentioned that the left ear is different from the right, you speak of a tunnel effect in there. this would also explain theres disbalance


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Debbie

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Reply with quote  #65 
Hi, Lynn! Crackling can accompany eustacian tube dysfunction (failure to open correctly), mucus sticking to the mucus membrane that lines it can sound like tacky tape being pulled apart or tiny bubbles popping/crackling.
A tunnel sound can happen with patulous e tube - a tube stuck in the open position.


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LynnMcLaren

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Reply with quote  #66 
Hi Debbie, ((( Smiles )))

Thats what it sounds like..
Tiny bubbles popping/crackling..
Clicking/popping...
I hear it well and I know it's not my jaw..
I can tell the difference..
I can make it happen as well by not even moveing my jaw or mouth..
I can make it just crackle away by just doing it.
By swallowing too..
When I first came down with T...
I don't remember it crackling it was just the tinnitus noise... 
But I think it might of came about either with the procedures I had done or the allergy meds they had me take ect..
Or when my ears really popped/exploded really loud like a lighbulbs exploded..
After I had my ears squirted deep alot with water /syringed and then..
they put that stuff inside my ears and told me to come back in three
days to have it done again..
It developed overtime too it could have been that.
But the crackling is heard well in both ears...
And my left ear is the one that is lower in volume and has a tunnel sound 
in there..
Like if I put a phone up to that ear and listen..
I never use my left ear on the phone only the right one..
Plus it's the ear that rumbles/booms the most..
But I have that also in both ears too...
It's just my worst ear it lags behind my right..
But otherwise like the tinnitus..
I just tune the noise out and sometimes I really don't notice it much
even though it's still there..
I think I have/had more then one thing wrong with my ears..
Most of my other symptoms have gotten better overtime but this..
So how do I get rid of the crackling it's been years now..
The nasel sprays plus Guasafen something like that I used long ago..
Just made things worse for me..   
Where's Dr Muncie when you need him..
His kind of therapy sounded like it could fix alot..
Sound therapy and alternative therapies worked the best for me..
Dr Muncie seemed alternative as well but effective..
I watch Dr Becker alot now..
Seeing whats out there building up my health...
The natural way...
If possible.... ((( Smiles )))

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Lynn
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Debbie

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Reply with quote  #67 
well...I mused about this in my mad scientist post...possibly under Ben's "swimming" thread.

I think that initial or ongoing inflammatory processes can disrupt e tube function through leaving behind less flexible tissues...ie scarring and adhesing of tissues to nearby structures as part of a natural healing process from inflammation.

Originally the stuctures move freely & slide amidst other structures, with adhesions they might take other structures with them &/or remain rooted in place.

Stuctures which adhese to one another in the body include structures as small & limited as individual cells, or as large as a whole tissue.

Structures which I imagine could adhese post-inflam in the ears are capillaries, nerves, the e-tube along it's length, the tympanic membrane, and more.

Maybe otherwise normal movements/shifts to expland with sounds & changes in circulation in our ears are being restricted by post-inflammatory adhesions & scarring.

I wonder if this is the case with eustacian tube dysfunction.

One article I read mused on why in the world would e-tube dysf. often present with forms of
PT.
Maybe the answer lies in a potential explanation for e tube dysf. itself:

Post-inflammatory adhesions, disrupting normal movement of e-tube...and maybe sticking it to nearby vessel walls.
Possibly the one or more tiny or larger vessels gets captured in an ahesion area.

Maybe that length of vessel, nerve, muscle...gets embedded in a mat-like adhesive, stuck
fibrous section.

The vessels would be less flexible in those places to expand with heartbeat flow...& would sound more drum-like.

Maybe a version of this idea is also at the root of chronic, "reactive T" patterns that can remain after the acute phases of H/T.

Maybe, normally, local muscles & blood flow move & shift to accommodate the needs created by different pitches & durations of sound.

We definitely know that certain ear muscles do shift in relation to sound, & we know that capliaries expand & contract with each heart beat...maybe normally, passageways grow a little narrower with certain sounds anyway & we only feel these...and irritation only happens, when inflam &/or old adhesions create added friction.

Maybe also a with little bit of irritaion...more micro-tissue tears occur...& a chronic process of re-adhesing, laying down more complex scarring patterns over time.

This is what happens anywhere in the body...in the ear we would be able to actually hear the consequences & more minutely experience any discomforts in other ways.

If inflammation & post-inflam adhesions...and possibly a chronic cycle of micro-irritation/re-tearing
/adhesing is a plausability insid our ears (I don't think these changes would show well on standard tests)
what then would we be able to do about it??

There has been lots of success with eliminating...unadhesing... adhesions & letting the excess fibrous tissue be absorbed by cell metabolism...in structures which can be directly manipulated:
uterine, fallopian ahesions for example, can be massaged out by trained professionals....for the purpose of restoring comfort and, just as important...
functionality...fertility.

Adhesions can block the fallopian tubes, stick them to adjecent structures, cause loss of opening in the passageways, pain, infertility.

And it is the same all over the body, just with specialized areas like fallopian tubes...certain functional consequences and local pains tend to capture attention.

Thus a new physical therapy/massage therapy field is emerging around this.
And pain & infertility caused by this process is being solved for many.

So how about the possibility of this process happening within the ears, which are structures which can't be manually accessed well?

How to stimulate the circulation which can carry away/metabolize old adhesion fiber cells...& create the forces needed to encourage such unsticking?

I bet there are specialized herbs, homeopathy, manual attn. to e. tube throat opening area & related muscles that can be applied.

Perhaps there are ways to accomplish this, IF this is a factor.

I think a potential inflam/adhesion process in the ears is a reasonable thing to investigate.

Has anyone stepped up to the plate & adequately provided explanations for the many LOCAL ear experiences we report?

Would an inflam/adhesion scenario potentially explain some of the blocked, dull, sound reactive, tube-functional problems we experience?

As far as I know, this line of inqury is being left totally unexplored in med right now.

Anyone want to join me in a further exploration of the validity of this hypothesis & potential remedies for the potential syndrome?


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cbBen

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Reply with quote  #68 
Yes absolutely -- how do we do so?

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Reply with quote  #69 
Hi Ben,
I'm glad you're interested in this line of inquiry.
I think that 'ear' things have not been thoroughly explored in general.

My approach to further investigating will be to look into how herbs, homeopathy, manual work, sound/vibration therapies...have helped other parts of the body with inflammation/adhesions.

I think the heart may get these, and certainly the liver...conceivably all tissues do.

I'm going to look into various perspectives on this physiological process & what is being done, and consider how this may apply to ears, and talk to professionals in relevant fields...to bounce off ideas.

Many, if not most, will have no clue, and some may have some leads.

The things which seem safe to try...I will experiement with myself.

Herbal inflams, for example, I have seemed to personally benefited from, in terms of pain reduction/loss of sound sensitivity.

I suggest others take steps only with very careful consideration.

Some professionals, such as otolaringologists (sp?!), if they have a special & unique interest in CAM (complimentary and alternative medicine) - as many MD's are starting to have - might be helpful allies.

I think exploring this issue COULD have an impact on various ear issues in general.

In terms of what to do,
I'd say if you know a friendly otolarologist interested on CAM ; ), discuss the topic over tea.

Reputable herbalists, homeopaths, acupuncturists (who use teas & herbs) would also be interesting people to discuss the idea with.

As we gradually gather some information and insight, we could share it here.


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LynnMcLaren

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Reply with quote  #70 
Hi Debbie, (((( Smiles ))))

I like the way you write how you think theses things out..
For me, conjuction malfunction..
It's all connected in there somehow the stapedial the tensor the e-tubes all thoses
muscles maybe like by nerves because I think I had malfunction in all of them..
Though maybe at the same time the causes could have been different.. 
My T&H was just like one big train wreak..
Caused by alot of things I should have stayed home because it's through sound therapies,
resting up, supplementation, acupuncture even with seeing a chiropractor I had the most improvement of all..
And the least harm...
Just also comeing to this board and I can never forget how gratefull I am for Dr Vernon's help and advice and the time he gave me back then..
I was a wreak..
But yes what you expressed above..
I was thinking about something on that line too long ago..
Inflammation, adhesions, scar tissue , lesions even teeth toxemia..
And then I was reading about finger surgery...
Sounded like an interesting concept... 

Dr Muncie..

Prevention and Cure of Deafness
            Through
Muncie Reconstruction Method

By Curtis H Muncie
  Outlineing
Constructive finger Surgery
Reconstruction Of the Eustachian Tube
Reconstruction Of the Nares
Reconstruction Of the Tonsils

Golden Anniversary 1910 -1960
     Tenth Revised Edition

A compilation of published tenchincal articles By Dr Curtis H Muncie,
of interest to physicians in the advancement of Otology

Copyrighted 1960 by the author

Plus...
Beside the conditions successfully treated it said tinnitus or ringing in the ears ,
can be cleared up in 8 out of ten cases..
He was specialist in diseases of the ear..

Dr Douglas Muncie supplements his corrective digital treatment of the Eustachain Tubes with the use of natural concentrates to supply specific nutrition to the inner ear and auditory nerve. He is a follower of natural health methods and claims specific natural concentrates aid in his work with the deaf.

I just never finnshed the last post on how he did it..
But that would be an interesting book to get if still in print..
Have you heard of it Debbie????

My ears have crackled for so long and plus I did have a left ear that whistled if I walked too fast at one time too..

I thought it would get better over time but that hasen't..
But what you wrote/ expressed is kind of in line with Dr Muncies thinking..
Nice to see you on this board..   


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LynnMcLaren

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Reply with quote  #71 
Oh Plus, (((( Smiles ))))

I just wanted to add..

Dr Douglas Muncie writes, " Medical politics and controversies should not exist when they obstruct issues of value of life, health and hearing - the rightfull property of humanity.....

I just love that he must have been a really great doctor to have back then..
One that must have really cared about his patients and healed many..

But what he did.. restores the Eustachain Tubes to normal , structurally and functionally, so that artifical inflation ( blowing air thru ) is not required ; normalizes the blood and lymph circulation ( vasomotor equilibrium ) to both the middle and inner ears and , through elmination of toxins , reestablishes a clean blood stream...

And also with finger surgery..

James D. Edwards, D. O., M. D.
    Lymph Drainage of the Eyelids.  The Ocular Lymphatics.  Lymphatics of the Auricle and  External Auditory Canal.  Finger Surgery of the Auditory Lymphatics.  The Eustachian  Lymphatics.  Finger Surgery of the Eustachian Lymphatics.  Lymphatics of the Nasal  Cavity.  Finger Surgery of the Nasal Lymphatics.  Lymph Drainage of the Oral Cavity.   Finger Surgery of the Oral Lymphatics.  The Lymph Drainage of the Larynx.


But theses doctors aren't around anymore..
And I'm not sure who does this kind of therapy anymore..
I stopped searching but that book must be really interesting reading from Dr Muncie..
And there are so many people around here with crackling in their ears ect..
And I really believe my acupunturist that was working on the nerves concept helped me
alot and was complemetary for me in treatment with sound therapy back then..
And drinking thoses herbs I cooked up from her from China..
I think really gave me a boost when I had no strength as she said my pulse was faint
and I was very pale and weak..
Which I was, I was so very sick back then...
She was worth seeing...
Plus.. I got this off of Dr Mercola's site ..
...2008...
Someone wrote about this on his site..
About tinnitus.. And Dr Muncie... 

I wish the technique of Dr. Curtis H. Muncie was still around.  He was an osteopathic physician at the height of his popularity in the 20's and 30's who discovered the means of curing certain types of deafness and tinnitus via his "finger surgery".  He went on to world renowned success holding clinics in Europe and many cities in America....he helped thousands of people including curing my sister of deafness and helping arrest my father's deafness.  He had a son, Douglas Muncie who was based in Florida but has since passed away, so the technique died with them.  I do have his booklet though which describes the technique and the way he discovered it.  Very interesting!

I wish that there were some doctor - Dr. Mercola are you listening? - who could resurrect this marvelous technique and therefore hope for hearing for millions afflicted..

Plus...
I think Dr Douglas Muncie is his son he was doing this treatment as well..

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Reply with quote  #72 
hi lynn!

sure its been a while and i hope youre doing fine! your guesses are just as wild as mine, lol. whether its coming from the muscles, nerves, tmj joint or e-tubes remains unclear. knowing my right ear's muscles are cut without any change for the better should tell us all that the spasming/crackling/vibrating sensations in reaction to certain pitches logically cannot come from muscle dysfunction at that level. furthermore, my doctors never saw anything moving in response to sound or on its own.

it happens to appear alot in hyperacusis patients but everybody explains it a little different. i recognize myself in a whole lot of descriptions, including yours. medical records are vague and unknown to many and contradict with eachother anyway. people with all those sensations to sound, according to 'what is known to the medical world' fall between the obscure "tensor tympani syndrome", stapedial myoclonus, 'by-product of hyperacusis', objective tinnitus and numerous explanations from people like you and me.

we dont know and will not know. how frustrating isnt it!

always,
astrid


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Supersmooth

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Reply with quote  #73 
Quote:
Originally Posted by Supersmooth
Hello everyone. If you have ever suffered from TTM a.ka tensor tympani myoclonus or middle ear and want to know what it feels like having had both middle ear muscles cut then you might likfe to watch this video I uploaded on YouTube.



This video will tell you all about my operation that cured me from middle ear myoclonus. This will hopefully be of use to some mostly those on the hyperaccusis forum. If anyone has had surgery or can relate to me with anything to say please write to me.
 
However, it hasn't even been a week yet so I shall have to wait and see.
 
 

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Supersmooth

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Reply with quote  #74 

Quote:
Originally Posted by Supersmooth
Hello everyone. If you have ever suffered from TTM a.ka tensor tympani myoclonus or middle ear and want to know what it feels like having had both middle ear muscles cut then you might likfe to watch this video I uploaded on YouTube.



This video will tell you all about my operation that cured me from middle ear myoclonus. This will hopefully be of use to some mostly those on the hyperaccusis forum. If anyone has had surgery or can relate to me with anything to say please write to me.
 
However, it hasn't even been a week yet so I shall have to wait and see.
 
 

Well, I never, It has been 364 days; since I had my operation Tuesday 7 January 08 but today is Wednesday with my autistic mind. I remember the day as if it was yesterday and I have not been abroad since.

 

There is a lot to report, but having said that I have been through some insanely poignant and traumatic times having been washed away in my car which got flooded out as I came back from a gig at 1 am on 29 October 08 last year and since then I have been in deep depression. The roads turn into rivers and the hail was 2ft deep and my car was a write off. Then my phone got damaged as it got wet and I had to find a new car and phone as they were my business tools as well as laptop. I had to abandon my car with my props inside it. Now I could be pessimistic and say I was unlucky, but in actual fact I was lucky to be alive, as I almost drowned. You can replace a machine but not a body. Just see the link below just to give you an idea:

 

http://news.bbc.co.uk/1/hi/england/devon/7700167.stm

 

As you can see it was no tropical storm. I am still traumatised by my accident caused by that freak hailstorm but one day I will be able to laugh it off. That trauma has left me with the flu for the past month and I have never really got rid of it.

 

As for my right operated ear, it feels fine, but, I am still sensitive to loud sounds and have occasional fluttering sensations but the main thing is that everything is far more tolerable now than prior to my operation and I have noticed that it is brought on by stress, because when I got flooded away in my car I have tensor tympani myoclonus for several days after as well as ringing, migraines and diplopia, but this was stress related due to flashbacks.

 

Having seen my senior ENT last week, my hearing is fine and there were no visible ticks, apart from palatal myoclonus which is different from Tensor tympani myoclonus. Now despite the fact that I still get occasional muscle twitches of my sectioned tensor tympani muscle, he said that there is a small risk that the scared tissue caused by the tympanotomy operation “Division of tensor tympani muscle and stapedius” can reattach itself on the tympanic membrane [ear drum] and start vibrating or trigger off fluttering, which could well seem worse as it would appear louder than before, but that is unlikely to happen. So fingers crossed things have been fine and now that my right ear is slightly better as that before the operation, my left ear doesn't seem as bad, although I still get it in both ears, so it is psychological in a way. I mean when you get both ears twitching away it is irritating, a bit like having blepharospasm - Eyelid twitches in both eyes simultaneously is irritating, where as one you can cope with.
 
The more stressed you get about it the worse it becomes, but I am very sensitive to certain sound and this could also be because I have Asperger's syndrome as well as depression. I notice things more and I am more aware of my body.

 

I will probably not go and have the other ear done because it is such a frightful and painful ordeal in all honesty. Mine was just an extreme case, and it is only when you cannot concerntrate or if it effects your sleep is when they will take action. The worst part is having the stitching pack pulled out and it felt horrible, and made the worse sound ever. If you pull a plug out of a plug hole from a bath tub drain then that is the noise it makes, but imagine the feeling? Nothing has been cured completely but at least I can concentrate and enjoy a good night’s sleep and hopefully as this calms down so will the other ear in time, so time will tell.

 

My senior ENT surgeon said to stay in contact with my neurologist in the meantime as it is a nerve problem rather than ear, but it happens to be in my ear. No one can control an eye twitch right? It is not life threatening, it is just damn irritating! My next appointment is in 4 months time.

 

Take care

 

Sean

 


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Supersmooth

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Reply with quote  #75 
Quote:
Originally Posted by Supersmooth

Quote:
Originally Posted by Supersmooth
Hello everyone. If you have ever suffered from TTM a.ka tensor tympani myoclonus or middle ear and want to know what it feels like having had both middle ear muscles cut then you might likfe to watch this video I uploaded on YouTube.



This video will tell you all about my operation that cured me from middle ear myoclonus. This will hopefully be of use to some mostly those on the hyperaccusis forum. If anyone has had surgery or can relate to me with anything to say please write to me.
 
However, it hasn't even been a week yet so I shall have to wait and see.
 
 

Well, I never, It has been 364 days; since I had my operation Tuesday 7 January 08 but today is Wednesday with my autistic mind. I remember the day as if it was yesterday and I have not been abroad since.

 

There is a lot to report, but having said that I have been through some insanely poignant and traumatic times having been washed away in my car which got flooded out as I came back from a gig at 1 am on 29 October 08 last year and since then I have been in deep depression. The roads turn into rivers and the hail was 2ft deep and my car was a write off. Then my phone got damaged as it got wet and I had to find a new car and phone as they were my business tools as well as laptop. I had to abandon my car with my props inside it. Now I could be pessimistic and say I was unlucky, but in actual fact I was lucky to be alive, as I almost drowned. You can replace a machine but not a body. Just see the link below just to give you an idea:

 

http://news.bbc.co.uk/1/hi/england/devon/7700167.stm

 

As you can see it was no tropical storm. I am still traumatised by my accident caused by that freak hailstorm but one day I will be able to laugh it off. That trauma has left me with the flu for the past month and I have never really got rid of it.

 

As for my right operated ear, it feels fine, but, I am still sensitive to loud sounds and have occasional fluttering sensations but the main thing is that everything is far more tolerable now than prior to my operation and I have noticed that it is brought on by stress, because when I got flooded away in my car I have tensor tympani myoclonus for several days after as well as ringing, migraines and diplopia, but this was stress related due to flashbacks.

 

Having seen my senior ENT last week, my hearing is fine and there were no visible ticks, apart from palatal myoclonus which is different from Tensor tympani myoclonus. Now despite the fact that I still get occasional muscle twitches of my sectioned tensor tympani muscle, he said that there is a small risk that the scared tissue caused by the tympanotomy operation “Division of tensor tympani muscle and stapedius” can reattach itself on the tympanic membrane [ear drum] and start vibrating or trigger off fluttering, which could well seem worse as it would appear louder than before, but that is unlikely to happen. So fingers crossed things have been fine and now that my right ear is slightly better as that before the operation, my left ear doesn't seem as bad, although I still get it in both ears, so it is psychological in a way. I mean when you get both ears twitching away it is irritating, a bit like having blepharospasm - Eyelid twitches in both eyes simultaneously is irritating, where as one you can cope with.
 
The more stressed you get about it the worse it becomes, but I am very sensitive to certain sound and this could also be because I have Asperger's syndrome as well as depression. I notice things more and I am more aware of my body.

 

I will probably not go and have the other ear done because it is such a frightful and painful ordeal in all honesty. Mine was just an extreme case, and it is only when you cannot concerntrate or if it effects your sleep is when they will take action. The worst part is having the stitching pack pulled out and it felt horrible, and made the worse sound ever. If you pull a plug out of a plug hole from a bath tub drain then that is the noise it makes, but imagine the feeling? Nothing has been cured completely but at least I can concentrate and enjoy a good night’s sleep and hopefully as this calms down so will the other ear in time, so time will tell.

 

My senior ENT surgeon said to stay in contact with my neurologist in the meantime as it is a nerve problem rather than ear, but it happens to be in my ear. No one can control an eye twitch right? It is not life threatening, it is just damn irritating! My next appointment is in 4 months time.

 

Take care

 

Sean

 

Actually the middle ear twitching is starting to get worse now but this could be due to stress and tiredness like eyelid twitches or blepharospasm!!!!


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LynnMcLaren

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Reply with quote  #76 
Hi Sean, ((( Smiles )))

Thanks for the update..

Quote:
The more stressed you get about it the worse it becomes


Stress and emotional stress can cause many disorders to flair up again.
Or act up while under..
I have slight dystonia lucky it's not as bad as some..
But I can be symptomless and if under duress or in certain circumstances it can/could flair/act up..
Under the same situation/circumstances if not under pressure duress or stress I'm symptomless..
But as I was diagnoised at Standford by a specialist..
Long ago way before T & H..
Even when symptomless I still have it..
The disorder predates the stress..
Otherwise there would be no symptoms at all for me..
Especially ones that follow some sort of pattern..
But symptoms may be very different from patient to patient with dystonia.
I guess based on the cause of or ones biological makeup..
It's a neurological disorder.
Some complementary therapies have been tried by some people with dystonia, and for those whose symptoms are worsened by stress or anxiety..
And this can go for any true neurological /slash/ medical disorder's..
So in cases such as that..
Some therapies that increase relaxation have been found to be helpful.
As symptoms may be influenced by stress and emotions.
Mine is..
Stress and emotions can trigger the symptoms in many a disorder..
There is that connection but the main/underlineing cause/condition is still there.. 
And as in any disorder and within any same disorder..
How well that works for one, can depend on the severity of. 
And I've been lucky in that way.. 
But it's true what you said..

Quote:

as it is a nerve problem rather than ear, but it happens to be in my ear..


Muscles to nerves and nerves goes to muscles..
Muscles and nerves hook up to the brain..
I think mine was/is too..
I injured a nerve in there and most of it got better but something didn't get better...
So therefore the rumbling & booming thing and my voice can also set it off
expecially the rumbling if I sing with high emphasis or vibrato..
Vibration though inner vibrato my voice..
Could also go for outer I found out from a roofer useing a pressure washer on the roof but that mostly was felt like inside my ears and with pain.. 
Alittle different then the other..
And the roof contains an attic and depending where I was as it's a buffer..
Because useing a pressure washer would be pure pain for me, better him then me...
Just certain things I just can't do anymore or be around..
But in most regular things in life..
I can it's good...
My husband says I'm 95 percent better I rate myself closer to 99..
We differ by a few points..
After all theses years... 
as ..

You can replace a machine but not a body
Quote:


Thats true...
Hope things improve for you ...
In time...

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LynnMcLaren

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Reply with quote  #77 
Hi Astrid, ((( Smiles )))

As you wrote this above I posted it below, oh yes!
It was very hard and another thing I developed while going through this was the fear of sounds..
Because of what they did to me physically my hearing my daily life..

Quote:

Like but also not exactly like what they call Posttraumatic stress disorder (PTSD) an anxiety disorder that can develop after exposure to one or more terrifying events that threatened or caused grave physical harm.


I guess like one who's been through war and then re-lives it through hearing helicopters or loud explosion noises but more like after the event..
But this is more like exposure to one or more terrifing events that threatened or caused grave physical harm, at the time..
Everyday...
I remember you where at the depths of dispare yourself...
I know it's hard for you now but I remember back then you were really going through it ..
Early on with my tinnitus I was seeing a behavior therapist Ph.D ect..
To learn to deal with this..
And I was seeing her till I noticed one day the train noise from outside her office window..
It just seemed very loud to me I didn't know how she could stand it was awfull and she just looked at me and said does it seem loud to you??
It wasen't loud to her.. didn't bother her...
and  the lights up in the ceiling was really bothering me too and I knew I would not be joining a tinnitus group she suggested as it wasen't going to work for me..
I just thought I had the worst tinnitus ever and I just wanted to get out of there pronto.. 
And then I eventually ended up in a very bad shape so bad I couldn't even leave the house at one time and became my own therapist of sorts
talk therapy calming myself down telling myself that I was going to be O.K. comforting myself talking myself through it..
trying to over come the awfullness of the situation of what was happening to me...
Trying to keep myself together so I could do what I had to do to try to get well ...
Which thats what I did anyway but it was just unbearable at one time..  
I wrote about doing this long ago working on this ...
Because of the severity of my hyperacusis I became phonophobic..
Did you find that happening to you???
Because of what you were going through at the time???
If so what did you do to overcome it and get through it.
How did you comfort yourself through the worst..

Quote:

hi lynn ,

i know you recognize alot in my symptoms and so do i with yours... i think we went through the whole scala of hyperacusis misery, lets summarize it all:

what about the click syndrome, the loudness syndrome, the cocktailparty syndrome and the startle syndrome!
as if this hasnt been enough we also went through the spasming, fluttering, booming, rattling, thumping, popping, throbbing, tapping, drumming, crackling, rumbling, twitching, vibrating, static and echoing. furthermore we went through the fullness, distortion, earpains, pressure troubles, the fears and the screaming tinnitus.
im sure i forgot the other half of all the symptoms... like the sounds sounding off-key and the hearing of an alien...

are we the only ones who are familiar with the whole package?? lol.
sometimes im jealous of the hyperacusis patients who only complain of sounds sounding too loud, arent you?


dutch regards lynn!

astrid


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Reply with quote  #78 
hi lynn,

you wrote:
Quote:
Because of the severity of my hyperacusis I became phonophobic..
Did you find that happening to you???
Because of what you were going through at the time???
If so what did you do to overcome it and get through it.
How did you comfort yourself through the worst..


yes and i believe everyone who develops hyperacusis becomes phonophobic as a result. when sounds become an issue the anticipation starts and this makes problems even worse. now i would never say that fears or dislikes can result in hyperacusis because thats the world upside down.
i became phonophobic because sounds sounded differently, harsh, shrill, too high, too loud, etc, etc. now looking back i would say everything was highly distorted.
distortion is incredibly scary. you realize others hear normal and you hear things that you shouldnt hear or should hear at normal levels and not offkey etc. so in my views its very normal to react with fears and extreme care among sounds.

i soon realized 'behavior' therapies as methods to learn to live with it were not my kind of thing. this was not something to learn to live with, this was something that i wanted to go away. so, i needed to try out things that could possibly work, no matter what. i read so much on the internet that i had doctors just staring at me because they had no answers, no thoughts, no ideas, no cure. it was clear they knew absolutely nothing about hyperacusis. not one.

so i tried my own ways. i took an awful lot of strange medicines that might work, vitamins, minerals, but also things doctors prescribed, just to try. i had noisegenerators, wore splints, had laser, i had surgeries, i had it all! this was my way to deal with it. just sitting still and do nothing didnt seem to be an option, though i was badly running out of options at some point.

when i realized i had tried everything that is available to me the acceptation progress began. it could never have started before like some 'specialists' were thinking at the time. when someone gets hyperacusis he doesnt need to change his reactions to the problems because those reactions are normal. the first phases are the very worst but can be beaten by the time passing by. though some need consultants and 'maskers' to deal with the problems, its understandable because it can be so bad.
a key is whether one believes the brain needs to be retrained or not. i believed my brain was perfectly normal, and didnt need any training at all. this helped me through the years. to keep realizing that i wasnt crazy and that the way i feel about the hyperacusis is as normal as can be.


i hope you get the picture! lol
take care lynn,

astrid

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LynnMcLaren

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Reply with quote  #79 
Hi Astrid, ((( Smiles )))

I posted your post above thats somewhere already in this thread because
I noticed where you posted the fears and the screaming tinnitus.
I know about the screaming tinnitus..
Tinnitus was my first symptom that something was wrong and it was like screaming tinnitus..
Many different stages for me..
But the fears are a natural outcome of ones hyperacusis expirence..
It can be quite scarry and the world can become quite loud and distorted and painfull and unliveable....
not to name all the other possible symptoms but we know them don't we as well as others on the board who do too..
All the possible symptoms one can have with H...
But...
You used generators I didn't but did my own degrees of therapy at home.
I did see a T&H provider but was barely hanging on and crashed in my tolerances or took a nosedive so to say..
So I could not travel back otherwise I would have done it like I went in the first place..
But the therapy I had with tinnitus wasen't working well for me then because there was an added feature to it that wasen't being dealt with at the time..
But I did undergo some of this type of therapy at the time..
But I think that helps not only to do a desensitization building up therapy to get one back into tolerateing more overtime again..
But I also know and believe that working on reduceing the fear and anxiety associated with the condition is a good thing to do and for me in my situation it was kind of self help and something I had to learn to do for myself as a skill..
Unless a therapist moves into your house with you in day to day hour by hour minute by minute liveing..
One has to learn to develop the skill to do it for oneself..
And thats what I did..
It took time and lots of self talking too and calming oneself down..
But I had to do that to be able to try to do what I had to do that helped me get better..
Or I would have never have made it through..
I felt it was the right thing to do for myself back then and worked hard on it to try to develop a postive mindset because If I didn't believe that I could get better even when I got worse from trying as this condition can react to treatments or sound too..
If I only believed my expirence at the time instead, though real..
Instead of the dialog I had going on with myself, pep talk.. 
Because I really felt deep down inside maybe this is it and maybe I could get worse and not better..
I don't think I would have ever took the chance..
Because it feels like a crazy thing to do when sound is the problem..
You know how hard it can get..
Will read the rest of your post later..
But it happened to you too..
Thats what I though you meant by the fear..          

Quote:
Hyperacusis can be managed most effectively by using noise generators in parallel with a programme aimed at reducing the fear and anxiety associated with sound exposure.

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Reply with quote  #80 

hello lynn!

the fears range from an uncomfortable feeling to complete panic attacks. they confront you with the limitations and dont help you psychologically, yet i think they are a logical result from hyperacusis. you actually said the same.
reducing fears and anxiety is hard to do and i cant tell you exactly what i did and still do, but it has to do with fast decision making. when you hear sounds you cant handle you can either run away, cover your ears or try to bear it. so i always choose one of the three with my heart racing. theres no way to stay calm with hyperacusis i believe.
so i cant say i did some self-therapy trying to calm myself. in that regard i do nothing much. i was hoping sound would slowly sound normal again, because of whatever went wrong in my ears would correct itself in the process.

i once read of a person with h who made loud sounds himself, slamming doors and dropping silverware, just because he was so mad at the whole thing. he said the therapy had helped him, but his tinnitus became ten times worse. so its always a fine line. you cant create loud sounds on purpose, as a self method without being punished it seems.
so i didnt do that, but tried to manage to keep my head cool and just undergo all the horrors. sure i was a psychological mess back then but that was because of the initial crisis and the depression as a natural follow up. i even developed some kind of post traumatic stress disorder because at some point i got even more crazy things like jumping up with every sudden sound. it was like i was really frightened.

i would never deny the terrible fears that accompany hyperacusis. yet the phonophobia is not another condition that needs to be addressed first. to me its always the other way around: the fears become less and less once the hyperacusis gets better. maybe it goes hand in hand as body and mind cant be fully separated.

in your post i also read of hope. you had the hope to improve which helped to survive. though i was desperate in the beginning i too had no other choice but hoping it would be better in a few years time. i knew hyperacusis would take years away, or at least six months when you are lucky. i had the generators, yes, but i had them as a trial and the councelling i had was a complete joke. it was more like i was councelling the audiologist than the other way around, lol. that doesnt mean that i knew all by myself what to do, but i didnt want to depend on anti anxiety medicines and therapists that both didnt address the real problem in my ears. when i noticed the so called specialists were just sitting and staring at my case, i realized i had to fight for myself, and so i did, with all i had in store.

take care lynn,
astrid

p.s. the sentence you had quoted in your last post is not mine!


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LynnMcLaren

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Reply with quote  #81 
Hi Astrid, (((( Smiles ))))

Thats true..
Phonophobia does improve with ones hyperacusis because hyperacusius can lead to phonophobia...
It's just in the trying to cope with it & deal with it untill ones hyperacusis does improve..
Enough to try to get better/ improved if one can and most people can..

Quote:

yet the phonophobia is not another condition that needs to be addressed first. to me its always the other way around: the fears become less and less once the hyperacusis gets better. maybe it goes hand in hand as body and mind cant be fully separated.



p.s. the sentence you had quoted in your last post is not mine!
Yes I know..
It was off a website on how reduceing the fear and anxiety can help and expecially when one is trying to do a sound therapy..
How it can work together...
In the trying to get well.
That's how I managed my condition and tryed to stay so positive and sunny as much as possible...
but it took alot of effert and work to do..
It wasen't easy and you know it. 

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Wanne

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Reply with quote  #82 
Hello,


since last november I've also started experiencing rhyhtmic noises in one of my ears.

I first noticed it only when listening to music but two months later it has worsened and the sound can start all by itself.

I would describe it as slow clicking noises which "accelerates" and abrubtly stops (again and again).

There's clearly a link between stress and sometimes it isn't there at all.

My ENT suspects tensor tympani myoclonus but isn't sure and I'll visit a specialist at a dutch university hospital in three weeks.

I'm really interested in the treatment as described by Mestermann as I also sometimes experience a "full" ear and the Eustachian tube often pops.

So does anyone else have any experiences with treating the veli palatini muscle?


thanks!


Wanne
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Reply with quote  #83 
hi lynn,

reducing fears is actually working on ones reactions to sound. i know once you have it you try everything and your approach has proven to be good in your particular case. but why trying to change negative reactions to too loud or distorted sound if you feel the reaction is not inappropriate and according to what you experience. also, many sounds happen all too sudden and only afterwards you realize you were holding your breath and shaking all over. for me its very hard to analyze the milliseconds that cause the earthquake in my body when i hear a certain frequency off-key and for that reason too loud.
i never decided for myself that i'd stop liking sounds and hate them, or to be afraid of them. key for me is not the reaction to them, but the character of the sound that due to the disorder has been changed. thats why anti-anxiety medication didnt work for me as anxiety was not the cause.

yes i know, looking back, it feels like a lot of hard 'work' because thats what survival trips are about. in that sense hyperacusis is the best life-test there is: will you be able to enjoy the smallest things, when your world is falling apart?

always,
astrid

----

hi wanne,

sorry to hear what youre going through, i know it too well and you describe what so many feel. mine is not a clicking but a rattle related to sound but yours seem to be random, which makes me think it could indeed be a muscle problem. surgery didnt help me but it obviously helped for some of those who had no noise induced clicking which is then called myoclonus. theres no way to prove the tt is the culprit unless they see something move inside your ear. in mine they never saw anything.
anyways, i too am curious about the treatment of the tensor veli palatini as mestermann described because cutting the sm and tt were mistakes. so what else can it be. lets hope we hear more news soon.

take care,

astrid


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LynnMcLaren

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Reply with quote  #84 
Hi Astrid, ((( Smiles )))

I was on Trazadone an anti depressant sleep agent and it didn't do a thing to change my condition in fact my condition was progressive..
got worse anyway..
It just knocked me out so I could sleep as I took it at night..

Quote:

key for me is not the reaction to them, but the character of the sound that due to the disorder has been changed. thats why anti-anxiety medication didnt work for me as anxiety was not the cause.




Yes.. Everything has been change and trying to overcome my fear of the sounds.. Which is a normal reaction to the situation didn't change my condition.. I still felt and heard everything exactly in the same way..
But I had to work on it to try to calm myself down change my reactions to the fear..
By telling myself I was going to be O.K. and I could get through this so I could be able to try to work my way out of it..
Gradually overtime..
I had to try to get a grip on myself hold myself together through it all..
As best as I could at the time...

Yes....

Quote:

reducing fears is actually working on ones reactions to sound..    


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Reply with quote  #85 
hi lynn,

i had seresta and klonopin and its the same story: it helped me to fall asleep with the screaming tinnitus and the internal shocks to every little sound in the house. thirty minutes after taking two of those pills i couldnt even stand on my feet anymore so i went to bed and immediately left the horror of reality, which was good because i remember i heard three blocks away and also through walls. listening to the tinnitus for one minute was pure hell let alone longer.
and yes even with those medicines i was a nervous wreck that initially only got worse. i knew i had to quit the sleepingpills rather sooner than later though my gp said i could take them all day long if needed. just the thought of it! later i got trileptal from a neurologist which is usually described for epilepsy but this was another trial to tackle the myoclonic thumps. i remember that medicine was even worse because it made me sick to the bone and the thumps to sound were unbeatable.

lying in bed and listening to the tinnitus gradually got better because at some point i thought to not fight the noises in my head but to actually welcome them! i know this sounds strange but i did try it. i cant say precisely what happened then because time was passing by in all ways but i must have adjusted to the noise somehow, though sometimes it can still frighten me when its worse. i then check the noise in a quiet room and get horrified, lol. i think it will never go away. maybe you recognize this.

always,

astrid

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aQuieterBreeze

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Reply with quote  #86 
Hi Lynn, and Astrid,

Thankfully, I have not been through all the things you have, but some of it seems fairly familiar.

I am glad to see you bring this up.
I don't see how someone who gets these challenges can help but be a bit fearful of some sound. Especially when the sound can cause setbacks-
I remember thinking at times- sometimes it feels like sound bites-
like being bitten by sound, really-
but as one improves to realize that what caused difficulties before, is not as difficult anymore, and may be ok- or ok to at least some degree-
I think that is really important.
Because as we get better, the sound we could not be around before may get to be more ok, and we need to realize that, and in turn be more ok with those sounds too, to get better really. And I have found that as I have regained tolerances and improved I am not so fearful/cautious around sounds.
More of those sounds that were difficult for me before are ok, or at least more ok- some I can be around for a little while, instead of not at all. Some are just low level noise, and when it is not overly loud, I try to focus on something else.  Though even some of the "low level noise" can still be difficult on my hearing. But I also found it has helped to separate what makes my tinnitus spike, from what is difficult for my hearing. Because just because some sound may make my t spike- it does NOT mean the sound is too much for hearing.
And to figure that out- and not focus on the t spikes so much. But just  to take the external sound as it comes, and when the actual level of the external sound is too much for me, do what I need to do at that time. There is a huge difference because sound that is NOT difficult for my hearing can cause my t to spike.

And with sound in general,  I take it much more as it comes, Instead of "listening" so much all the time, for what may be difficult, that I may need to protect my hearing from. I used to actively listen for sounds, from far away even, to see if they may be difficult or too much for my hearing/ears or not. I don't do that much these days.
When I quit doing that I became MUCH more relaxed- it was really noticeable, not being on "high alert" all the time. The first time I noticed that was when I first put on the nature cd I have, when i first started trying to listen to it. I put it on my stereo on low volume, and sat in another room, put my feet up on a chair, and felt my mind Relax. It was like my mind had something else to listen to, and I really did feel my mind relax, for the first time, in a long time. And it was a wonderful feeling.

If my hearing is more sensitive than normal, seemingly for no apparent reason - I may try listen closely for distant sounds - to see what is causing the increase in my sensitivity. I do that for a couple of reasons, one is for some reason it helps me if I can figure out what is causing it, and also if I can determine the  cause, I may know how long that sound that is making it do that will be likely to last. And for me that can help too.
(If it is from someone putting on a new roof- I know it may last awhile-
if it is from a distant lawnmower or something, it will likely quit before too long.)

I normally still stay out of environments that are really likely to be too much for me too.
For example with a restaurant, I would not  try to go someplace I know would be really loud- but someplace that may be fairly quiet, or ok for me. And I think that allows me to have better control of the situation, If I know I can leave if it is too much, I have much less to be fearful of.
And I don't really need to anticipate what it will be like so much. Just to know that if it is too much - I can leave. That is so empowering.
I have found as I get better, I have more of a healthy respect for sound, in particular loud sound, and loud equipment,  - than fear.
(Though LOUD SOUND equipment, like in some of the electronics stores, that includes sub woofers may be a different story for me still. Especially if I have to go to an area in the store near where they keep alot of that stuff. I don't think the fear is from the equipment itself so much though, just that somenone may turn it on and up..And I do not go into those places very often)

But in general-
To know what to do in certain situations also helps. ALOT. Instead of being fearful in a situation, to know what the options are and know how to act or react to protect one's hearing if and when necessary, helps
I notice that what is "too much for me" keeps changing, gradually and in general (though I still get setbacks at times) - in a positive direction- and that helps too.

And to know others have the thing about some sound not seeming just louder,
but sounding really different- some music sounds so different, and it is hard to believe I ever listened to it! I mean not just some sounds, like percussion, that my ears may seem to notice more or that sounds more pronounced sometimes - but the vocals and some instruments - some of it sounds SO different!
There are times I try to listen to an album or songs from one - and wonder how I ever listened to it before!
(Maybe there should be a new sticker placed on the albums? Not for Hyperacusics? ;-) In it's own respect it is kind of neat, as I pick up SO much more in the way of the sound- in the music, and how it all sounds and blends and sounds truly beautiful - or doesn't in some cases! I just don't listen to that stuff that does not sound good yet. It either will or won't as time goes by, I am not going to worry about it. But it is nice to know others notice that stuff- it is not just this really weird thing that only happened to me! This sound stuff is strange- to hear noise from so far away, and notice "sound" that is only detectable as vibration-
And To have it all sound louder.......
But also to have it be able to get better, over time.

Astrid-

You mentioned sounds not sounding right to you-
has that gotten any better, for you? Do most sound like they should yet?
Or at least mostly sound like they should or used to, yet?
And is or was/is it all sounds? Or mainly music?

I know for me sounds were louder, and sharper and harsher etc. but the stuff that really sounded REAL different was music. Vocals and some instruments- some sounded so strange. Some still sound a bit different than they to too. But more sound ok :-) I never really thought about in the way you mentioned,
that everyone else heard it the way it should be and I heard it differently.
I only really thought that way about the volume,  things sounding too loud and about being able to hear sounds others could not pick up-

I apologize if this is slightly off the topic, as I never had those tensor tympani problems, but I saw what you ladies had mentioned about some of these things and wanted to comment.
I may have more to say later, hope that's ok with you.

Peace and a beautiful day to both of you,
aQuieterBreeze

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LynnMcLaren

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Reply with quote  #87 
Hi Astrid, ((( Smiles )))

You  are correct...
The only relief I got was at night while sleep or more likely knocked out.
The Trazadone knocked me totally out and I could take anywhere from 50 Mgs to 150 a day..
Sometimes if I could not take it anymore I broke it up 50 Mgs early evening 50/75/100 Mgs later that night..
I could play with it to totally knock me out or daze me a bit and then knock me out..
But it did nothing for my hyperacusis or tinnitus in that way it just helped me cope better..
I could not have made it through without it..
And when I got off of it it was really hard but I had too as it started not working well for me anymore and I was getting side effects..
Insomia..
It really took alot of will power and strength to get beyond that because melationin and 5-HTP didn't work like my Trazadone did..
So I was woken up at night and had to sleep deeper under the blankets ect..
Yes that happen to me too..
And also further too as I understand it's a figure of speech to expain a situation..

Quote:
three blocks away and also through walls.
listening to the tinnitus for one minute was pure hell let alone longer.
 
  

Yes yes me too I had to learn to deal with it cope with it because there was no excape back then..
Like with the hyperacusis expirence..
I just lived in it..
I had to tell myself that it's going to be O.K..
I can do this it's not that bad trying to calm myself though it was that bad but I had to get into a new mind frame to try to move beyond the expirence to try to do sound therapies over time no matter what..
I had to believe I could get better and that I was going to be O.K..
That I could do this with  self calming self talk & worked on this and wrote alot about it back then on the old message board and you doing what you had to do is probably what keep you from totally falling apart as well because I remember you almost doing that you were in bad shape when you came to the board I remember it well..
I worried for you..

Quote:

lying in bed and listening to the tinnitus gradually got better because at some point i thought to not fight the noises in my head but to actually welcome them! i know this sounds strange but i did try it.  


Yes it's an adjustment yet it still can become frightening when it gets worse but I had to work on thoses fears and just wait it out with there is nothing I can do about it and just wait till it gets better..
And I know about how bad tinnitus can be as well it was reality for me but I had to take it out of the reality to the possiblitys or I don't think I could have took the chance in improveing my condition over time..
As it got far worse before I started seeing some improvement at all..
It's been a long trip and lots lots better then back then..
It's liveable and sometimes I don't hear it at all and if it ever gets worse acts up I try to ignore it and not freak out when it does that for some reason..
Because I do remember how bad it's capabile of getting so I really had to work on that life skill and it took me lots of time as it was a process.
I guess thats what we need to do to try to get through it and hopefully by it..     

Quote:

i must have adjusted to the noise somehow, though sometimes it can still frighten me when its worse. i then check the noise in a quiet room and get horrified, lol. i think it will never go away. maybe you recognize this.

Yes.. It was really hard at one time as I couldn't be in sound and I couldn't be in silence..
The H or the T..
And then both were sound sensitive,  as well..
You just couldn't win..
I debated on it with myself and decided to do sound therapies over time..
As that was the way to go for H anyway and their was no real other real relief anyway..
So I just suffered with it but in measured steps of what I could try/ force myself to do just in building up my sound tolerances over time..
It's never easy or fun..
It's something one feels by expirence they cannot do..
It's impossible at the time..
But a person has to do something to get out of the rut..

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Lynn
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aQuieterBreeze

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Reply with quote  #88 
Hi Lynn,

I am curious,
about hearing through walls and over long distances-
what is it you heard? And do you still?
I heard and can till hear- traffic, motors etc.
though it is not as bad as it was at one time
And at one time I used to think of the old song by The Who-
I can't remember the title- I have not heard it in years
but the line from it was  (and Maybe that is the title too?)
"I Can See For Miles"

But my thought was - "I can hear for miles"

Thankfully all the sound does not sound like it used to though.
Someone using a hammer at a good distance, does sound like it is at a distance.
It didn't always though, it used to sound much closer and louder to me.
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LynnMcLaren

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Reply with quote  #89 
Hi A Quieter Breeze, ((( Smiles )))

Yes.. Through the walls I could hear traffic, lawnmowers, powertools, sometimes voices just like..
The outside world came inside and into my ears at one time..
Sounds were heard or jumped into my ears and felt there as well at one time..
As vibrational or rumbling sounds or  distorted sharp super loud ect..
You know hyperacusis hearing it just all ramps up..
But yes it could be miles away a train could sound close by or an airplane in the distance or cars from somewhere but with H it's hard to track all distance of where sounds are comeing from as everything sounds real close..
Right there with ya.. 
Yes.. Just like that...
Overtime sounds started going back too where they were comeing from..
Like what sounded like it was right out front your door right into your house started fadeing away untill it was gone..
Or almost gone...  
You had to go look for it like where was that comeing from anyway..
I don't hear it like that anymore..
Yet..
I did not gain my normal tolerances back take for instance one thing that happened to me recently..
My husband wanted me to watch this DVD he camcorded ...
It was a talent show my daughter was in..
He put it in but he forgot to turn the volume down before he switched it from t.v to dvd and it came on loud..
And I put my fingers in my ears but to late got some..
And my ears were muffled after that and felt void yet full and ached I expirence pain..
Till today but still it feels numb empty.. 
I was kind of upset and brought that up to him he said sorry about that..
But he felt no pain nothing from it at all.
Neither did my daughter..
Just me and there was a time in my life pre H I would have too..
Nothing bothered me back then too..  


Quote:

Someone using a hammer at a good distance, does sound like it is at a distance.
It didn't always though, it used to sound much closer and louder to me.
       
 

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Reply with quote  #90 
hi aquieterbreeze,

you said:
Quote:
You mentioned sounds not sounding right to you-
has that gotten any better, for you? Do most sound like they should yet?
Or at least mostly sound like they should or used to, yet?
And is or was/is it all sounds? Or mainly music?


it has gotten better over time but there are still sounds that seem to have more treble (see also my post in other thread). i think most of this was because of the MRI, a test that damages your ears for a long, long time. a definite shame people are still being referred to those superloud machines.

its frequencyrelated so all sounds from a certain point were affected, so not just music. the higher the sounds are, the less i could take (read: the more distortion takes place, and distortion is unbearable) but also a sudden very soft and high (!) sound could send me through the roof.
about loudness, my ldl's were extremely low so it affected my overall tolerance as well. the only thing i could handle were soft low sounds and you know thats no life.

i will read the rest later as alot was written,

take care for now,

astrid

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RobertDee

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Reply with quote  #91 
Quote:
Originally Posted by Wanne
Hello,


since last november I've also started experiencing rhyhtmic noises in one of my ears.

I first noticed it only when listening to music but two months later it has worsened and the sound can start all by itself.

I would describe it as slow clicking noises which "accelerates" and abrubtly stops (again and again).

There's clearly a link between stress and sometimes it isn't there at all.

My ENT suspects tensor tympani myoclonus but isn't sure and I'll visit a specialist at a dutch university hospital in three weeks.

I'm really interested in the treatment as described by Mestermann as I also sometimes experience a "full" ear and the Eustachian tube often pops.

So does anyone else have any experiences with treating the veli palatini muscle?


thanks!


Wanne


Hi Wanne,

Nice to read your post since you have described my symptoms exactly.  An accelerating clicking noise that turns into a rushing sound and then stops abruptly.  Over and over.  The timing changes, but right now it happens about every minute and lasts 10 seconds.  I also have some unsteadiness with the clicks, which is very troublesome since I am a pilot.  My ENT prescribed Baclofen, which didn't work, and now Trileptal, which is making me feel strange.  He thinks the problem is tensor tympani myoclonus and says it's easily fixed by cutting the muscle, but reading the posts here, it's not so easy.  I'm glad I found this board, but disheartened by how few people seem to be cured.  I'd like to know how you proceed and how it works.  Good luck.
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aQuieterBreeze

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Reply with quote  #92 
Hi Lynn,

Thanks for your reply :-)

You have such a way with words sometimes-
I love the way you phrase this-

Overtime sounds started going back too where they were comeing from..


You make me laugh a bit- and that is good.
But it is also so true! Those distant sounds, they should go back where they came from!
(And it is nice when they do!)

I still wind up "listening" at times to see where sound is comming from-
sometimes it hard to pick up, but hard on my hearing anyway....

And it would be nice if the world was a bit quieter too.
(I mean even for those without H-
just less loud motors, and quieter overall)

Sorry to hear about what happened to you though, the incident with the DVD
You mentioned-

I did not gain my normal tolerances back take for instance one thing that happened to me recently..
My husband wanted me to watch this DVD he camcorded ...
It was a talent show my daughter was in..
He put it in but he forgot to turn the volume down before he switched it from t.v to dvd and it came on loud..
And I put my fingers in my ears but to late got some..
And my ears were muffled after that and felt void yet full and ached I expirence pain..
Till today but still it feels numb empty..

To get those reminders sometimes, when things seem like they are going good, and we may think - I am really doing well, and something happens-
sometimes it is hard to help keep it from happening. But I am sorry it did to you.
Glad you are doing better. Hope tomorrow is even better.
I know last week was difficult for me- and I was so glad when my ears felt better again.
But at least one of the things about going though it over time, we learn that we do get better from it. I know it still hurts though, sometimes in more ways than one.

Did you watch the DVD yet? Or will you wait a bit? Till your ears are better?

Take care, and I hope you feel better.
And thanks as always,
It is good to remember that some of us may always need to be a bit careful.
Though I hope someday you get even fewer of those "reminders".
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Wanne

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Reply with quote  #93 
Quote:
Hi Wanne,

Nice to read your post since you have described my symptoms exactly. An accelerating clicking noise that turns into a rushing sound and then stops abruptly. Over and over. The timing changes, but right now it happens about every minute and lasts 10 seconds. I also have some unsteadiness with the clicks, which is very troublesome since I am a pilot. My ENT prescribed Baclofen, which didn't work, and now Trileptal, which is making me feel strange. He thinks the problem is tensor tympani myoclonus and says it's easily fixed by cutting the muscle, but reading the posts here, it's not so easy. I'm glad I found this board, but disheartened by how few people seem to be cured. I'd like to know how you proceed and how it works. Good luck.



Hi RobertDee,


in march I will discuss the options with a different ENT. He will probably try injecting botox near the tendon to try temporarily disable disable the symptoms. Which seems like a much better option then cutting the muscle.

For the moment, I have to try to not think about the problem because this seems to increase the symptoms.

If the treatment gives any interesting insights or better (!) I'll surely report back on the forum.

I still hope that the problem will go away by itself by relaxing as much as possible and try to accept my current situation.


good luck!


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Reply with quote  #94 
hi wanne,

you said:
Quote:
in march I will discuss the options with a different ENT. He will probably try injecting botox near the tendon to try temporarily disable disable the symptoms.


i am surprised to read this because all my (dutch!) ENTs said this is impossible, even neurologists said it. the tendons are too small for a needle and the risks are too high. risks include other parts getting paralyzed, which seems to give problems with swallowing. its very hard to choose the right amount of botox to eliminate the symptoms whereas you have no side effects.

keep us posted of what you will do,
thx in advance and take care,

astrid


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RobertDee

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Posts: 2
Reply with quote  #95 
Hi Wanne,

My ENT, actually two of them, one here in New York and another at Johns Hopkins in Baltimore, are very interested in the idea of using botox on the tensor tympani.  Neither have heard of such a procedure and both seem to think that the muscle is so small that it wouldn't be possible to inject it with botox.  But both of them are very interested in the outcome of the procedure, and both are very well respected in the field.  I hope you will let us know what happens.  Best of luck.  Robert
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Mulan

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Posts: 60
Reply with quote  #96 
Hello all, one thing I've learned from my Tensor Tympani Syndrome is it flutters at high elevation when the pressure is low and also to high sodium (salt) intake. 

Three months after the rock concert three years ago, I went to a message therapist for a routine massage, she rubbed so damn hard on my head and behind my ears that an hour later I heard loud pounding in my head, and since that day on I have had Myoclonus and Tensor Tympani problems.  For the first eight months my ears fluttered at night when I laid my head down on the pillow.  I learned to stop taking nerve stimulants like salt, sugar, etc. and for two and a half years now, no fluttering hardly ever, only when I get choked up to cry or have something in my eye, it will flutter, and also if I have too much salt or go above 4,000 elevation in bad weather.  I eat a vegan diet and it made the world of difference, also pomagranet and elderberry juice to clean out free radicals.  (note: vegan diet is not for everyone, an "A "blood type is perfect for the vegan diet as we do not need alot of protein and should never eat red meat, view "Eat right for your blood type" book.)


As far as Stapedial Myoclonus, my ear will thump, (spasm) softly to certain sounds like sandpaper sounds when writing with a pencil and filing my nails, and also to people talking too loud next to me in a closed area like in my car with all the windows up or a house with hardwood floors. 

I believe the rock concert make my ears weak and the head massage set off more hearing problems, yet, why my ears flutter to crying or something in my eye is interesting.  I assume the nerve is stressed or closely realated to the eye.  During the first eight months of my fluttering problems my eyelid would twitch constantly, when I lowered my sodium intake and started taking fish oils (omega 3's), the eye twitching stopped the VERY next day.  I learned it was because we have a sleeve over our nerves and it was warn down to the nerve, and the oils repair it. Calcium, magnesium and fish oils, and a healthy diet have made my life livable again... hopefully, I can still say that after I have some dental work done soon.

****I have concluded that I have an injured nerve, and salt and other stimulants and certain sounds irritate the nerve and the nerve pulls on the tendons and since the muscle/tendons are in my ears I hear and feel it.  Similar to a leg spasm.  Have you ever had a protien bar packed with vitamin B before bed and your leg twitches for the first hour or so?.. just like that. (by the way, I also only take a very minimal amount of vit. B, as it is a nerve stimulant.)

I hope this helps anybody with Stapedial Myoclonus, Tensor Tympani Syndrome, and Eye Twitching, and I know everyones case is a little different.


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