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lpitts

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Reply with quote  #1 

Hi all, thanks in advance for any help. I get a popping sound in my ear usually right after loud noises and after I talk. It's like a rapid fire popping sound and only lasts a couple of seconds and it only occurs immediately after I finish speaking or after the noise (it seems to only respond to some freequencies of noise -- dishes clinking drives it insane). It's not too loud, but loud enough that it is really irritating. I went today to a ent clinic and they gave me all the tests and it seemed like everything was fine. They said they could see the eardrum moving when ever I heard the popping, plus they could hear the sound themselves. I had 5 different ent docs looking at it and they were all perplexed by it. They have no idea what it is or what to do.

So my questions are:

1) does anyone else have similar problems.
2) did it go away for you?
3) what should i do?

Thanks

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JoeM

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Reply with quote  #2 
Lpitts,

You definitely have stapedial myoclonus and tensor tympani syndrome.

I guarantee it.

PM me and we can talk further.

Joe

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JoeM

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Reply with quote  #3 
You may also have palatal myoclonus. But PM me...I can help.
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lib

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Reply with quote  #4 

yup.....sounds like it to me too....joe and i are pros when it comes to this....anything i can do to help....let me know

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lpitts

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Reply with quote  #5 

Thanks so much for the help!!! it's so frustrating when you don't know what's going on and expecially not knowing whether what you are doing is helping it or hurting it.  For the last little while I have been avoiding most social contact as people's voices seems to set it off.

 

I did a web search on the things you mentioned and I sure hope I have the tensor tympani syndrome and not the palatal myoclonus.  That second one seems a lot more complicated and seems to have more symptoms that I don't have.  I just have the ear popping when  I hear things.  Knowing atleast will get rid of some of the anxiety.

 

Thanks a bunch,  I really owe you guys one.

 

cheers

Lucas

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lpitts

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Reply with quote  #6 

After further reading ,I would say that it seems more likely that I have tensor tympani syndrome only because I don't ever get just random popping.  It is always in response to sound and the other two seem that they are based on the sounds being random. 

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JoeM

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Reply with quote  #7 
Lucas,

First check out these two articles.

http://www.tinnitus.org/home/frame/Tensor%20tympani%20syndrome_Klochoff.pdf#search='tensor%20tympani%20syndrome'

and

http://www.tinnitus.org/home/frame/Things%20that%20go%20bump.pdf#search='tensor%20tympani%20syndrome'

The tensor tympani syndrome is almost always in conjunction with stapedial myoclonus. In fact, the myoclonus is just latin for muscle spasm. That is what is happening. The middle ear chain of bones, malleus, incus and stapedial are connected by two tendons, the malleus to the tensor tympani, and the stapedial to the stapedius. The tensor is about 10 times as big as the stapedius, so it can cause more larger pops. Generally, if one is spasming to sound, the other tendon is involved as well. So in pursuing a fix, both tendons need to be "cut".

A bit more of a background, most ENTs, as you have discovered, don't know anything about this, or have ever heard of it, and that means, not really anything is known as to why it happens. So don't kill yourself over trying to figure out why it is happening, just know it can be stopped. Second, you are lucky in the fact that they were actually able to see your eardrum move. This is a definite indicator that you indeed have stapedial myoclonus and tts.

But anyways, what you describe, popping sound after noise, esp. your voice or loud noises, in a quick rat-a-tat type fashion that go away a few seconds later....you have "it" my friend.

Don't bother with meds or drugs, the people I know, including myself and others my docs have talked about, say that for most meds don't work, or if they do, very little. Besides, the meds they would put you on are anti-seizure drugs which will kill your liver...very bad.

So, what can you do...sever the tendons. It is a very easy procedure, I just had my right ear done, and my left about 2 months ago. I have no more noise-induced or voice-induced popping. It's gone. Are there any side-effects? Not really. The recovery is generally quick, I was back at work the second day after.

So, talk to your docs about this. Because ENTs have to cut those tendons for quite a few other ear surgeries, it isn't anything real serious. But talk to them about it.

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lpitts

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Reply with quote  #8 

Thanks again Joe, that one article that is really old from sweden, said that 80 % of people with this get vertigo?  Did either of you guys get vertigo?  Should I be worried about this?

 

It's funny after reading alot of the posts on the website, it amazes me how many people go through the same thought process.  I'm in panic mode because I read somewhere that it could be MS or Brain Cancer and of course you just need to see those words to panic.  I will definately talk to the ENT guys about having the surgery?  Is it a day procedure (as in have your surgery in the morning and be home eating dinner that night)?

 

Thanks again, you guys were a lot of help

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JoeM

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Reply with quote  #9 
Don't freak about tumors or cancer....we all did the same...you are going thru what I did and Lib did...we're here to tell you not to worry about it.

Tell your docs about it, they will probably request a CT scan and an MRI, just to safe, and that is probably a good idea anyways, but I would say, you don't have anything to worry about. This is def. a case of the two tendons.

And yes, surgery in the morning and back home later that day. It really is a quick 30-60 minute procedure, they may look around in there (exploratory) before they cut, just to make sure all else is well, you go back to recovery for an hour or two and bam, you go home. Just rest up, you probably won't feel like eating that night, but no big deal. You'll be back on your feet the next day.

Joe

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JoeM

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Reply with quote  #10 
Oh, I never got vertigo, and I don't believe Lib did either, but she said she did talk to a few people who did get dizzy with this, but not entirely sure, or sure if that was their only ear issue. Ask her, she'll let you know.

But if you don't have vertigo, just be glad.

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LynnMcLaren

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Reply with quote  #11 

Hi lpitts,

 

I just want to say.. If you have an MRI or Catscan wear earplugs..

 

If you don't have hyperacusis now... you don't want to take the chance of comeing down with it and MRI's expecially are very loud..

 

I had the Tensor Spasms to sounds like dishes clicking, silverware ect... But I was very lucky in it went away in over a years time..

 

I did it thru sound therapy and others have as well.

 

Just they did TRT I used pink noise and sound exposure therapy..

 

But even though that symptom is all gone for me I still have my other rumbling booming crackling one..

 

It's not that bad for me as hyperacusis was very much worse..

 

I think like Lib and Joe says.. You should get that checked out and see whats up and what can be done about it..

 

Just be carefull with MRI and use hearing protection..

 

Better to be safe then sorry I say.     


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lib

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Reply with quote  #12 

i did have vertigo in the begining, they think it was an inner ear virus but who knows, i also know a few others that have had vertigo....i would not worry about it though, once they cut the tendons chances are you wont get it.

the surgery is a breeze, and well worth it....im so glad my doc figured it out.

where are you located? might be able to send you to a doc that knows something!!!

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Ankie

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Reply with quote  #13 

Hello, my name is ankie and i'm from holland, nowadays i live in austria. I have the same popping sounds after noise exposure and even my own voice. Im getting crazy of it, because i have Hyperacusis as well, which is getting worse. I yet become infusionstherapy.

Lynn, may i ask which cd you used (white or pink) or did you use sound generators. How many hours did you use it pro day and how long did it take for you to notice any recovery?

Thanks, Ankie

 

I have another question.

on the internet i read to advises:

a doctor in Germany says i should wear earplugs for a time, to give my ears rest.

the trt therapie says i should not use earplugs by sounds which are loud for me but not for a person with healthy aers, cause that wille make my ears more sensitive.

 

what should i do, then it's very difficult for me to listen to some people without earplugs, it's to sensitive!

 

Ankie


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LynnMcLaren

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Reply with quote  #14 

Hi Ankie,

You got to take care of the hyperacusis first.. I used the pink noise tape from the Oregon Hearing Research Center..

 

They no longer make that tape. But they make a CD instead of the same tape which is called the Moses/Lang.

 

I would order the pink noise CD from this network instead which is priced real good . I think it's 15 dollars. My hyperacusis symptoms have been gone for along time now..

 

It's 95 percent better as I don't believe I'm cured but pretty close to like cured.. But this good enough. I'm donig real good.

 

It was so long ago that I used pink noise and my progress and advice is mostly on the old arcive board but some also here..

 

I had hyperacusis or noticed hyperacusis about 7 to 8 months before I came to the hyperacusis board. So my start of the pink noise is not recorded on this board..

 

But my use of is.. I would get the pink noise CD from this network.. And start off not protecting under 65 Db's which I believe is what Dr Vernon suggests..

 

And then build up from their with the pink noise.. It takes months before you notice any results and then it will sneak up on you over time little steps of regaining tolerances back..

 

Start out getting use to the sound.. By starting out like 20 minutes a day. 5 if you have too..

 

Half an hour and just building up to two hours and then adding more hours from there.. 2 hours at the least..

 

Thats what I did.. My tensor spasms to sound are long gone.. My DA Da Da popping went away.. My hyperacusis is 95 percent better..

 

But I do have some left over symptoms that may not be caused by the hyperacusis itself..

 

I just don't know but it's mostly a crackling with swallowing and a booming with yawning...    

 

Dr Vernons book is real good and I've posted some information on that book on this board and the archive board..

 

Good Luck To You..

 

 


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Alissa

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Reply with quote  #15 

Dear Lynn,

 

My mom has suffered a terrible setback recently, and it has been pretty demoralizing for us.  She was doing so well for a while and as I had told you before, for the first time in over a year was beginning to be able to tolerate sounds in the house and do things like listen to the radio.

 

Now she is pretty much back in her room again and it is aweful.  It all seemed to start when she opened her month really wide one night flossing her teeth.  After that she started to expereince increased ear, facial and jaw pain.  Her hyperacusis flared back up again and her mouth/teeth seemed more sensitive to temperature's (hot/cold) and chewing.  At this point I started to wonder if this is TMJ related, but my mom has never had any kind of jaw mis-alignment in her life.  Did you ever expereince ever such problems?

 

Then a few days ago, a neighbor above was playing music during the night and her setback has become even worse. 

 

Not only do I find it really difficult to watch how much she is suffering at the moment, but after finally gaining confidence by the progress she was making, now I am wondering if this is what is always going to happen..these setbacks I mean?  

 

I suppose because of her problem I have begun to be more aware of sound around me.  Even at her best, I have sometimes been out ide, either on a steet or in a store or somethins, and wondered how she will ever get back to that point to be able to tolerate all that sound again.

 

Your story gives me tremendous hope....as you too believe yourself to have once been a category 4, and slowly got out of it by sound therapy at home.  Today, I read a recent post where you were talking about your positive experience in a mexican restaurant and it was the most hopeful thing I have read in a while!

 

I hear other people talk of setbacks during the process of regaining ones sound tolerance....and am wondering are these just something inevitable and although you have them is there still hope that you can 'recover' from this?

 

Along your journey of recovery did you have any severe setbacks?

And how long did it take before you were able to begin to venture outside again?

 

Glad to hear that you are doing so well!

 

Regards,

Alissa


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LynnMcLaren

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Reply with quote  #16 

Hi Alissa,

 

Wow.. I just read what happened to your mother and I've read about setbacks before or people getting improved and doing well for along time and then a nightclub or something else that happened in their life bringing their symptoms back but it's just so strange that it happened when your mother opened her mouth wide and flossed her teeth..

 

Did she impinge a nerve in her jaw that might have effected her ears ????

 

I impinged a nerve in my jaw that effected my ears one time by biting down hard on a salad or biteing wrong as I was eating when stressed out with a respite provide and must have tensed my jaw and crunch and my ears when EEEEEEE loud tonal ringing..

 

My acuptuncturist said I impinged a nerve as I was afraid I messed up my ears real bad back then but she felt it was just a nerve impinged that would calm down in time and it did..

 

I wrote about that expirence on the archive board as it sured freaked me out.. It was ringing loud and traveled in stereo from one ear to the other..

 

I thought it was loud enough to cause hearing loss at the time it sounded so loud at the time being heared right inside my ears.. It did worry me abit and it made me more sensitive after that...

 

But if you can't remember any changes in the last few days or so with medication or any other sound exposure expirence or anything else.. Then that had to be it..

 

She has made so much progress with the pink noise.. That being a good sign it could happen again.. Once things calm down.. 

 

I've had setbacks and bad expirences that I have recovered from that I thought just doomed me for life and I use to cry over how could I have been so uncarefull so careless to have let that happen to me..

 

I use to really freak out badly at one time as I was real phonophobic.. That was a real hard symptom to overcome.. Really hard.... 

 

But I just keep with the program and seemed to recovery over time from that..

 


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lpitts

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Reply with quote  #17 

Hi all, well I went back to the ENT today and they did some more tests but as per usual nothing really turned out of the ordinary.  I told him all the info I have collected on TTS and SM but he didn't really pay too much attention to it.  I guess they don't want to say anything unless they know for sure.

 

Make a long story short, I have to go in for an MRI.  It's got me totally freaked out now.  Any advice from the experts before going in?  I don't really understand what they are even looking for with an MRI, but I just don't like the sound of it.  Did everybody else with TTS and SM have an mri before they got anything done?

Please let me know

 

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ClickCut

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Reply with quote  #18 
I have these muscle problems in my left ear too, but I don't get to see an ENT until the tenth, so I havent had an MRI yet.

I wouldnt worry about getting an MRI though, its no big deal.

An MRI is actually much much safer than an x-ray, and I'm sure you have had an X-ray before.  So don't fear it, just because they have to put you on a board, and run you through a closed in machine.  It should be no problem unless you are claustraphobic or something.

As far as what they are looking for, probably tumours, or if you have bones or some other thing interfering with your inner ear.  I think they can even tell if there is congestion in the eustachian tubes with an MRI.

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LynnMcLaren

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Reply with quote  #19 

Hi Alissa,

 

Hows your MOM doing ?

 

You said..

 

Now she is pretty much back in her room again and it is aweful.  It all seemed to start when she opened her month really wide one night flossing her teeth.  After that she started to expereince increased ear, facial and jaw pain.  Her hyperacusis flared back up again and her mouth/teeth seemed more sensitive to temperature's (hot/cold) and chewing.  At this point I started to wonder if this is TMJ related, but my mom has never had any kind of jaw mis-alignment in her life.  Did you ever expereince ever such problems?

 

Then a few days ago, a neighbor above was playing music during the night and her setback has become even worse

 

--------------------------------------------------------------------------

 

The opening of her mouth to wide could have impinged a nerve.. After I did that and then I made an appointment to see my acupuncturist as I was scarred as well. It made my ears supersensitive at the time..

 

I keep needing reasurance from my acupuncturist that I didn't damage my ears from that.. It felt like I had I was so upset as it was a setback from my progress.. And I wasen't doing that well in the first place.. But I was better and then that had to happen..

 

But setbacks will happen till your mothers ears become stronger.. Untill a persons ears are more stable.. They will be in the flareing mode.. Unstable and fighting a battle .

 

A person can recover from a severe setback.. Many people with hyperacusis have had severe setbacks and still have improved with TRT and other sound therapys..

 

It's just a slow process and takes time.. I had the symptoms of hyperacusis.. Pain throbbing burning things sounding loud reported on my Dec 02 hearing test before my ears suffered a very sever setback by April 03..

 

And the sound traumas that I suffered made my ears collapse into very intense hyperacusis..

 

In fact I believe the sound of the bus engine and the bus radio intercom was one of the reasons my ears were getting worse everyday up till.. I had to get on the bus to unstrap their sets and  put them on the bus and them off the bus..

 

They are disabled with autism and they needed extra help with certain things.. Expecially back then when they were younger. And one needed a harness. And one was very difficult to get her to the bus and back in the house..

 

It was very hard and it's loud on thoses bus's with the kids makeing noises and the engine running and the Cb radio on loud and sharp and they turn it up loud to hear over all the noise. They have to keep them on.. And they have to be able to hear it.. Know whats going on.. 

 

I found that out when I asked the dispachers... 

 

I couldn't take them off the bus anymore my ears got so bad before Feb 02 that by Feb 1 02 my husband took a leave of absence from his job......  Plus my mom in laws loud service funeral before Christmas .. my daughters screaming in my ears....

 

I think of all the things that have happened to me and I don't know how I was able to get better...

 

I had to take to my room.. I got lots more help with them after that.. I needed help because it was too hard for me at the time . And they needed behavioral help as well...

 

Spent alot of time up there in my room even when I started venturing downstairs more..

 

And there were times I had to spend more time in my room if my ears were acting up from to much sounds.. And I was haveing problems.. But I could do it back then.. As much as possible with help...

 

And that blasteing gameing sound system that happened to me when I was doing so much better but still not totally well and ventured out to a family gathering and spent lots of time in the yard listening to all the people talking and noise in the sunroom playroom and finally got the nerve to venture in as it seemed more quiter eventually in there finally and then blam !

 

The pain.. The immediate severe excrushiating pain on that blasting noise.. And the muffled hearing I got from that did put me back resting in my room with throbbing hurting ears.. It hurt for along time.. And it did scare me and I was real mad over that..

 

But there is nothing a person can do about things such as this when it happens...   Your mother had made some progress. And it's possible that she can do it again over time..

 

Even thou she can take in more sounds.. Her ears are still weak. When my ears were in the more able to listen to music and others sounds around the house they were still weak and vunerable.. And I still had bad symptoms...

 

Though stronger..  I had to be as carefull as possible.. And wear plugs when neccesairy.

 

But the jaw thing.. Thats interesting.. But no matter what.. And I cryed alot at my worst or with each setback as well. She has to try to think positive.. 

 

Not that just thinking postive will fix this.. But something about letting ones emotions and fears get them best of them with a setback can make it worse and harder to recover from..

 

It can just get real bad so I did postive talk to myself.. Calmed myself down...

 

Stress can aggravate alot of conditions as well. It just does.. I know it's hard to do because she must be real upset at this time.. But we do what we must..  

 

And there is nothing else to do.. Be supportive and hopefull whatever it was that set her back.. Will calm down in symptoms over time..

 

Too bad she doesn't have a good acupuncturist who can work with her nerves and her jaw and ears.. Mine was great.. And I think if it wasen't for her..

 

I would have been worse off then I was..... Be supportive like you are and reasureing that we can get past this.. And remind her of the progress she had made.. So that means.. It's possible to do again..

 

So has things calmed down some for her ????      How is she doing.. Emotionally in dealing with this.......


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JoeM

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Reply with quote  #20 

Lpitts,

 

They most likely won't find anything with an MRI for SM/TTS, and don't worry, and MRI is totally safe.

 

If your doctors are not believing you about the SM/TTS, it is because most ENTs don't know really anything about it. I can recommend some docs that do. But if you see that your docs are at least giving the idea some credibility, stay with them. Even if they say, they are unsure, but are willing to help or cut the tendons if you let them.

 

I have a lot of info on this, as I spent 4 plus years dealing with this and going through everything under the sun related to this.

 

Joe


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lib

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Reply with quote  #21 

i have not found 1 person yet that had anything show in an mri.....so dont worry. i have found a ton of myoclonus people though....where are you located?

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lpitts

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Reply with quote  #22 

Hi guys, thanks for the info.  I'm located in halifax, ns canada so I'm not sure if any of your recommendations will help him.

 

My main problem is that last april my brother went in with stomach pains and they told him it was nothing and sent him home.  He went back, same thing, will give you a cat scan but don't worry it's just ulcers.  Next thing you know its pancreatic cancer and 8 months later he is dead (my brother was only in his early 30s).  Needless to say, this couldn't be happening at worse time for me mentally.  I'm not ready to go back to hanging out in hospitals and pacing back and forth waiting for the results of my MRI.  If this would have happened before he got sick, then I wouldn't be too worried but now that I've seen the other end of the stick, I am of course a jumble of nerves.

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JoeM

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Reply with quote  #23 

Lp.

 

I see why you are worried. But from your initial post, this is myoclonus. Both Lib and I both underwent a great deal of tests, MRIs, CT scans, etc. etc. etc. They found nothing. All hearing tests were normal, all other ear tests were normal.

 

Basically, think of it like this: you know when you're tired and your eyelid twitches, or some other muscle twitches because maybe you have been sitting on it too long...it is just a muscle twitch...and if you were to go to a doctor, they would never see anything if it didn't happen right then and there. You would be otherwise normal. But with the ear, the tendons that hold the ear bones to the muscles are smaller in diameter than a human hair and are inside your ear, so seeing it move is VERY difficult. Although it is possible, but hard. My neurotologist had me do a quick make-shift test where I created noises that would set off my ear spasming while he looked at the eardrum with his otoscope. Although my ear was going crazy with the noises I was creating, it still took him 2 minutes to actually see the ear drum dimple. That is what he was looking for. That meant the tendons were pulling on the eardrum and therefore he diagnosed me with tts/sm and he was very correct.

 

But the docs have to cover their butts by doing all the tests first...such is medical life. But keep giving them all the info you can about it...if they are good docs, they will eventually listen. Ask Lib if you can email Dr. Sismanis and then maybe your docs can talk to him and it would save you some time. He knows his stuff.

 

Bring in those two articles I posted links to above.

 

Joe


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Leah

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Reply with quote  #24 
Wow, that's interesting if some acupunterists (sp?) know more about the ear/nerve/jaw thing than ENT's.

Or maybe they're just smart enough to mention and share this.

Okay, I'am off to sleep.  Night!


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Ricochet803

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Reply with quote  #25 

I have cut and pasted my story below and in another thread.

 

I now take TRILEPTAL and it seems to help alot!

 

Here is my story:

 

I have the following symptoms: *During quiet (e.g. sleep, etc.) periods I had no symptoms *When subjected to sound above a certain threshold I heard clicking sounds only in my right ear. *Certain types of sounds seemed to trigger the clicking. The worst sounds were running water, shower, rustling of paper, etc. *The clicking stops just after the noise stops. It has some other weird behavior. Lets say I start the shower running and the clicking starts I can put my finger in my ear (making it quiet and applying a slight pressure in my ear) and the symptoms will stop. Then I can sometimes pull my finger out of my ear and the symptoms will not start back even though I am hearing the exact same input that started the symptoms, etc. I can always get the symptoms to stop by briefly putting my finger in my ear. The symptoms may or may not come back. On good days only running water, shower, etc. and not talking people will set it off. On bad days any moderately loud sound will set it off clicking. It only happens in the right ear. So when it is quiet then there is no problem. When I run water in the sink then it starts rapid clicking. As I tried to express earlier. Certain sounds are much more susceptible to set it off. For example loud toilet flushing will readily set it off (unless it is in remission). The sound has something to do with triggering it, but what I find strange is the fact that I can stick my finger in my ear (blocking the sound or slightly changing the pressure) and I can get it to stop. Then I remove my finger and frequently it will not start back. Even though the ear is now experiencing the same sound (trigger) that it was. Some possibilities palatal myoclonus stapedial spasms (myoclonus) or tympani spasms 

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robert

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Reply with quote  #26 

Lynn,

 

i have a questiion for you with regards to your hyperacusis success. i was just wondering...did you have fullness in your ear and did that improve as part of your recovery? thanks

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LynnMcLaren

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Reply with quote  #27 

Hi Robert,

 

Yes.. I had fullness.. The whole hyperacusis thing. Burning , throbbling , fullness, pressure, pain ect.. My right ear cleared up totally..

 

My left ear still has some burning once in awhile not much.. And a voidness feeling.. But mostly.. The worst of it all went away for me..

 

I almost missed your post.. I came back to post this link... Clicking or crackling sounds..

 

http://boards.hyperacusis.net/read.php?f=1&i=4478&t=4478

 

There is a whole bunch of them on the archive board.. Lots of people crackling there thou they are no longer there anymore....   


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robert

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Reply with quote  #28 

thanks Lynn. i just want to personally thank you for all of the positive input you contribute around here. i know many of us are depressed and angry about what we are dealing with but we need the success stories too. i have wanted to try TRT for a while but i guess my condition was liveable for the most part for many years that i just didn't bother..not to mention i simply can't afford it. however it's gotten consideraly worse in the past year and now with the tensor spasms i'm experiencing  it's time for action.

 

 

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tomjam

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Reply with quote  #29 

HI,

could the popping be a flaccid eardrum making noise as it vibrates. The doctor i saw yesterday said my problem in my right ear is a flaccid ear drum - like a loose drum skin which vibrates too much when i hear noise(a crackling sound like a broken speaker when i hear certain loudish noises  -some loud talking, car motors, and more). It lasts for just a second. The doctor looked at my eardrum with a microscope and said this was most likely the cause (from loud music - i have other effects from acoustic trauma too - tinnitus). It makes sense but sometimes the doctors really seem to not know anything definitely. I pretty much recovered from a mass of ear problems due to acoustic trauma 12 years ago and just had very low level tinnitus, but went to a loud club a few months ago and this pain is being revisited by me again. Last time i recovered with time but i still dont know eally whats going on physically in my ears for sure.

you have a popping sound and the sound im experiencing is like a broken distorted speaker - so just a suggestion about flaccid ear drum.

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lib

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Reply with quote  #30 

these are symptoms of myoclonus, the muscles in the middle ear are spastic.....

a good neurotoligist can dx this.

where do you live...i rthink you need a second opinion.

lib

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LynnMcLaren

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Reply with quote  #31 

Hi Robert, (((( Smiles ))),

 

I just wanted to come back to tell you that I never did TRT.. I did it the Jack Vernon way or... The pink noise way.. I did not follow his poticol to the T as I never used earphones while doing it..

 

And I had advice from others with the TRT protical they were going thru at the time... Kind of mixed there suggestions in to my package of helping myself back then...

 

Plus I did it the only way I could handle it at the time.. Starting off at non-audible to others level of volume. Yet I could it hear it and it effected my ears neverless.

 

But I got to the point over time where I could turn it up alittle more and tolerate alittle more sound which was good for me because I was at the start of.. The middle of..

 

My story is long.. Of a crash...total hyperacusis collapse of tolerances..

 

So I had to do the therapy my way.. Slowly but surely and was better but still not well when I got here months after I had the tape..

 

But I added sounds from that starting point in time when I could.. To music therapy where I could finally handle more sound music sounds.. To a sound machine at night by my bed.

 

Then full ahead with voices and the sounds of a vehical.. Just tackling sounds.. One at a time about. Were I could build up to them to be able to handle them again..

 

To me.. It seemed like the same concept of after a stroke.. Relearning.. Retraining.. One limb at a time.. One brain cell at a time.. Exercising..

 

Re-teaching yourself long lost skills.. That was wiped out like after suffering a stroke.. And then comeing back by starting all over again..

 

It was kind of like that for me...  

 

 


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LynnMcLaren

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Reply with quote  #32 

Hi Tomjam,

 

You wrote ....

 

I pretty much recovered from a mass of ear problems due to acoustic trauma 12 years ago and just had very low level tinnitus, but went to a loud club a few months ago and this pain is being revisited by me again. Last time i recovered with time but i still dont know eally whats going on physically in my ears for sure.

 

--------------------------------------------------------------------------

 

Yep.. Thats kind of how it is for me.. I pretty much recovered from my acoustic traumas and my tinnitus which was progressive in sounds and reactive to sounds and which was one of the things that held me back longer in exposeing my ears to more sounds..

 

I was fighting both.. But now.. My tinnitus is not what one would call reactive anymore though going to a loud event may make my tinnitus go back up in volume for hours or more like a day or so but otherwise..

 

Its mostly at a low level to not being heard at all sometimes.. And it's worth it for me.. Just to be able to enjoy myself and go out and I just try to ignore my tinnitus reaction.

 

But it's no where where it use to be.. And you said a super loud event " Club " brought your condition back.. There is no true cure for hyperacusis or defined cure..

 

And as we just happen to be the kind of people who can get hyperacusis in the first place from all sorts of cause's plus the unknown..

 

I stay away from club's...

 

Yet.. I've been in some loud situations.. Going to the mall, walking by traffic, freeway overramp circleing safeway , music in resturants, playing arcades, ect.... without ear plugs..

 

And it may effect my tinnitus after a day of being out for awhile.. But it's worth to me and has not brought back my hyperacusis at all.

 

But I have read alot of storys of people being fine for years or so and then wham ! A real loud event brings it back.. So.. I have fun.. But not to much fun as hyperacusis.. Was no fun at all for me for quite along time.. 


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KristyC

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Reply with quote  #33 
I have almost the exact same symptoms as lpitts. However, I do have a question - is the crackling/popping really loud, or just annoying? Mine's just annoying. But it's been going on long enough that I'm getting pretty sick of it. At first, I thought it was wax buildup or water in my ear that was causing it. But after several attempts to both dry my ear and remove wax, with little or no relief, I'm finally starting to wonder if it's something else. Could it be anything else, or am I definitely looking at tensor tympani syndrome or stapedial myoclonus?

Thanks in advance for any help.
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lib

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Reply with quote  #34 

kristy,

what triggers the crackling and popping? do you have any other symptoms?

lib

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KristyC

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Reply with quote  #35 
I hear it when I'm speaking (most, but not all, of the time) and when there are moderately loud to very loud noise. The timbre of the noise seems to make a difference, too. I noticed some others mentioning dishes and silverware setting them off - my ear definitely does a lot of popping when I'm unloading the dishwasher. My dog barking or a door closing firmly will also make a pop. It's usually just two or three pops in rapid sucession, stopping just a split second after I'm finished speaking or the noise ends. I can also feel a little popping sensation while I'm hearing the sounds. Sometimes my ear is itchy or sore as well - but I'm guessing that's as much from my mucking with it, (in my attempts to get the popping to stop) as anything else. I've read that for some, there is an anxiety component - and that they will get popping just from anticipation of a loud noise, but that's definitely NOT the case with me. It's nowhere near debilitating, just annoying. And it's been hanging around for a while. A couple of years at least - although whereas it started out pretty intermittent, it's moving closer and closer to the "constant" category. Sound familiar?
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JoeM

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Reply with quote  #36 
Yup,

Sounds a LOT like tts/sm.

Joe

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KristyC

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Reply with quote  #37 
Thanks. Although it sounds like surgery is my only option, then? I think it would have to get worse for me to consider that worthwhile. I also read something about pink noise therapy? Would that be for TTS/SM, or more for Hyperacusis? And if it is for TTS/SM - does it really work?
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JoeM

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Reply with quote  #38 
TRT does not work for tts/sm in my opinion. It is for Hyperacusis.

And if you can live with it, then by all means, don't have the surgery. But if it gets worse, don't worry, the surgery is quick, effective and has minimal side effects.

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lib

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Reply with quote  #39 

yes that certainly sounds like myoclonus....had all those symptoms.

line up a good dr and a diagnosis just in case you need help!

good luck

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LynnMcLaren

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Reply with quote  #40 

Hi Joe, (((( Smiles ))))

 

Even thou I have hyperacusis disorder it did help me with my tensor spasms to sounds.. They are totally all gone for me.. 

 

On Feb 27' th 04 I wrote it just felt like a light touch was all that was left.. Then they went away..

 

I don't know if it would work or not with someone who didn't have any sort of hyperacusis.... 

 

But it's worth a try but it took a very long time of pink noise and sound therapy for me before they went away for me...

 

Plus I allso did a therapy that exposed myself everyday without earplugs to the voices that caused theses spasms for me.. A therapy of sorts..

 

I found the tensor spasms was a big component in my hyperacusis and when they went away.. My hyperacusis was alot better but not totally gone..

 

But I was on the road after that to better and my hyperacusis is about all gone it seems.. Like 95 or better.

 

There should be more research done on theses things as a person can have very mild to non existent hyperacusis... I do..

 

But my tensor spasms to sound went away along time ago..

 

And I had it real bad too...

 

So I don't know if a person could have mild hyperacusis and tensor spasms..

 

Does anybody out there know or have mild or moderate hyperacusis disorder and still have the tensor spasms to sound ???

 

But I know tensor spasms react to sounds.. And they can react violently with force.... As well as less so with soft sounds.. 

 

That was a terrible thing to have.. Glad it went away for me... But I know I had have hyperacusis....

 

So I don't know if it would work as the same concept or not..  What makes them go off " wacky " in the first place..

 

There has to be a trigger.....................      


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KristyC

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Reply with quote  #41 
Just wanted to thsnk everyone for the feedback and information. It's psychologically helpful just to know that there is actually something medical going on - that I can stop the frustrating cycle of unsucessful attempts to "clean out" my ear to get relief. If it gets worse, I will definitely find an ENT to explore my options. And I will arrive well-armed with some great information, thanks to all of you!
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