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LynnMcLaren

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Author: aspergian 
Date:   06-16-04 20:51

I need help, please... I'm going to check this out with a physician if it continues but I wanted to ask here first because I know there are some very knowledgeable people here.

I have mild tinnitus because of exposure to loud music, and I know what the dizzying, uncomfortable ringing is like But in the last few weeks, something else has come up. What happens is:

In my left ear (and left ear only), after a loud, short sound like a clap or a door closing or even when I yell a short syllable like "Aaaa!" I hear a popping noise in my left ear, it's hard to describe but it's irritating and annoying and it's like sometimes when you put your finger into your ear and wiggle around, you can hear a sort of popping crunch thing -- or when you basically pop your ears. It always happens after a loud, short sound and never goes away. If I clap my hands next to my ear over and over, it keeps happening.

This has been going on for a few weeks now and am increasingly concerned because it has not gone away. Does anyone know what this condition is called, and if in the meantime, there are treatments I can help myself with (apart from staying away from loud noise) like medical supplements or anything like that?

Thanks so much, I'm worried.

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Author: Tony<>< 
Date:   06-17-04 10:30

Hello, Aspergian- I have had similiar sounds for years after hearing a sound. I never have figured out what it is, but I feel like it is one of many 'cusis symptoms. You don't indicate that you have 'cusis, but having it myself, I feel like this "after sound" just goes with the territory.
I'm sure there are others who will answer who may know more what this is. I'm wanting to really know myself. Mine is more of a rumble or rustling sound. Hope you get better soon!

 

 

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Author: Fiona Lamb
Date:   06-20-04 20:10

Hmm yes. I get this from time to time too. It's like an after effect of the noise. Like taking crockery out of the dishwasher I get like a clap in my ear right after the noise. It think it has something to do with the stapedius muscle in the middle ear reacting to sharp noise instead of suppressing the loud noise it does the opposite.
Fiona

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Author: astrid 
Date:   06-21-04 01:52

hi aspergian,

its a myoclonus ( spasm ) in the middle ear. look on the web for the two middle ear muscles ' tensor tympani ' and ' stapedius muscle '. one of the two or both can get into spasm, hence the most horrible ear-sensations in response to sound.

with this condition, youre VERY vulnerable to get hyperacusis, so stay away from loud sounds. with this myoclonus thing in my ear, i underwent the noise of MRI and this made the already existing sensitivity to sound extreme.

im curious if you have noticed more symptoms,

keep hoping,

astrid

 

 

 

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Author: aspergian 
Date:   06-22-04 05:31

Thanks everyone for your help and support... yes, this is really what I'm experiencing. I have an appointment at the hearing clinic soon. I hope it goes well, I have been distressed lately because I have not been able to work (on my music). I hope I do not have to live with this for the rest of my life.

Is there a cure for this myoclonus, astrid? I am Googling up info but I am curious how you treat it.

Thanks again.

 

 

 

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Author: astrid 
Date:   06-22-04 07:20

hi aspergian,

i wish there was ! muscle relaxants and anti epileptic meds have proven to be unsuccessful. a thought is to have the muscle-tendons cut but this operation, though known to be succesfull on pubmed ( medical library online ), sounds scary and doubtful to me. also, no ENT seems willing to do this because it destroys something that is basically allright, just not functioning well. i wish i could talk to someone who underwent this surgery.

i believe the underlying cause of myoclonus must be treated. i suspect its within the jaw joints or surrounding tissues, ligaments and cartilage. im now wearing a splint to no avail, after having tried different medications to stop the spasms. nothing works.

i wish i had better suggestions ! regards from holland,

astrid

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Author: aspergian 
Date:   06-22-04 13:16

Hi again astrid, I'm sorry to hear you have gone through so much and nothing has successfully worked Has anyone here ever been effectively been treated or cured of this myoclonus, and does it ever go away after awhile or does it stay for the rest of one's life?

 

 

 

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Author: astrid 
Date:   06-22-04 13:46

hi aspergian,

one claimed to have been helped by an anti-seizure drug trileptal. i took the same but for me even high dosages didnt work AT ALL.

for others it seemed to have subsided over time. i believe this tremor can be minor to severe. only the worst myoclonus-cases on this board recognize themselves in the symptoms. others say its just ' hyperacusis ' or a part of ' hyperacusis ' and dont seem to recognize that they in fact have a myoclonus. i think it can last from a few days to many years, depending on what the reason of it is. im just so afraid this will never go away. i would go nuts !

astrid

 

 

 

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Author: Fiona Lamb
Date:   06-23-04 20:01

I believe I had myoclonus but one day this past January it suddenly improved. I was taking no medication or anything. So I really can't know what happened. It started suddenly a year earlier and got gradually worse and worse. I thought it would just continue that way. I certainly did not expect it to improve. So I guess there is hope!
Fiona

 

 

 

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Author:Lynn McLaren

Date:   06-23-04 22:11

Hi Aspergian,

Been reading your post. It can be disturbing when that happens. I've had my ears thudding out loud enough where I could hear it for days to 2 weeks " in the past " to go lower in volume to a constant rumbling sound inside my ears.

And I've heard my ear makeing the pop pop pop " audible to me " . I mean hearing it.


I had exploding head sydrome and I didn't know what that was " till Tony wrote a post on it ". It happened only once and it was loud. Like an exploding lightbulb. My medical provider told me it was my E.Tubes. Didn't know E.Tubes where capabile of doing that.

This was before Hyperacusis and it was so loud " I'm suprised it didn't give me hearing loss ". It was like an explosion. I heard it outloud.


Plus I can crackle my ears and for the longest time my ear drums felt like a hammer was wacking it with every sound " like a taunt drum ". Plus it was twitching inside to every click and clank. Sound was painfull. Sound hurt terribly.

As Fiona said : it just went away. I don't think there is any Doctor you can see out there that is capable of doing this. I think this is something the body itself may only be capabile of doing at this time. Sorry to say but at the same time " good news ". It must be a body healing thing.

But as Fiona said :It started suddenly a year earlier and just keep getting worse and worse and she never thought it would improve. Thats how I thought. It just keep getting worse .

It was so bad I was doomed as damaged goods. Nothing that bad could ever get better. Once it's damaged like that " I thought " how could anyone fix that. I guess nobody else can. I guess our bodies are the best medical providers in the world " when it works right ".

Well it took me a year or so " but it suddenly got better ". Nothing sudden about it " as I had it for so long " but it was a sudden thing because it was amazing how it just changed.

It was not anything I could think of doing " besides talking out the plugs to normal sounds " and listening to pink noise and letting sound in. I mean makeing myself listen to sounds. Makeing noise on purpose. Turning up the volume on things.

Before that:
Silverware, locks ,bells, dishes. Even ripping pages out of a magazine or just turning the newspaper gave my ears a reaction.Just typeing on my keyboard my my ear EEEEEEEEEE with sound clicks. I even got that with listening to pink noise.

I thought my haircells where giving way and I was hearing each one passing away with each EEEEEEEEEEEEEEEE " tonal" sound. But Marsha Johnson set me straight on that one. She said its the muscle in the middle ear that is doing that. Boy was I relieved " because they were going fast " and by that rate " I would have no hearing left ".

And now: I don't get the middle ear reactions anymore. And if it does ever happen " by chance " its mild. Very slight. Hardly felt. Maybe a problem like this " is a biggy " because its allways being used " and you can't stay off it . Like not standing on a bad foot. Limping when needed. Maybe thats why it takes so long to reset. Its a long term injury disorder.

And this takes time. Lots of time. But whatever it took " it went '. I'm not hyperacusis free but my symptoms have improved 65 percent from where I was before.

Doesnt mean that its totally gone. Just means " I don't know ". Maybe it is totally going. Whos to say for sure. But I want to give it another year before I can say " sure about anything ". Untill then" its still healing " or whatever.

So I have to play it like its a fresh injury that could come back " if I push it " at this time. Not fresh enough to be like yesterday. But still not that long ago to be forgotten. Just have to take it slowly but surely. I mean this happened to me in the first place " for a reason". So I'm not one to say Hyperacusis does not exist. Or is possible.

I'm not hitting any nightclubs soon. Or anything that loud. I have a defect. And somethings " that can give you hearing loss " you don't push. You heal and take it slow. And when it resets or fix's itself " does that mean 100% normal'. I don't know for sure. But whatever it is " I'll take it ".

Maybe it was not muscle damage " parsay ". Maybe it was the nerve going to it or whatever.

But that whatever " is that ever 100 percent normal again " after injury. I don't know for sure. Is any haircells or nerve cell damage left over? Whatever is left over " as long as I can use it and hear out of it again " thats pretty like fixed to me ".

Maybe we have alittle something up there we can afford to lose and still function when everthing is said and done " well enough ". Only our stories and stories of thoses that have taken the path we have " before us " will let us know " for sure ". Then we can know whats possible or not " and what is the final outcome ".

Time will tell. There will be future studies of where we all are 20 years from now " in Hyperacusis research ". . Then we will know the final result.

Take Care
Lynn

 

 

 

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Author: K
Date:   02-06-04 23:28

Has anyone else ever felt this? I have had 4 ENT's look in my ears and have NEVER seen fluid in my ears.

If I bend over, say to pick something up, I hear/feel a waterfall rush of what feels like fluid falling up, then when I stand up, I feel it fall back down. I have mentioned this to ENT's and they say it is just a perception.

It seems to me that it would be more physical considering gravity would make that happen and gravity is not perception.

Anyone else ever feel this?

 

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Author: Lynn McLaren
Date:   02-06-04 23:48

Hi K,

I've had the preception of fluid or water in my ear before. Even the feeling of fluid running out thou my pillow is not wet. I don't hear it . Its a feeling of fullness and something fluid in my ear moveing around. I don't know what it is. But I've precieved it myself. May have even posted about it way back in time on a post.

Take Care K
Lynn

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Author: k.
Date:   02-06-04 23:52

Hi Lynn,
I've never felt like it was leaking onto my pillow. It is just a strange sound I hear and feel, almost like air rising and falling. Very strange that docs have no explanation.
Karen

 

 

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Author: Lynn McLaren
Date:   02-07-04 00:06

Hi K,

I've felt like something needs to come out and I have felt that something may be comeing out at one time but nothing was there that I could feel. It was just a preception of fluid that needed to come out that was running in there. Doctors can't explain my symptoms either with a test. I should be happy as my hearings fine. Well I am about that. But..... as we all know for those of us that passed the hearing tests, thats as far as the happiness goes.

Take Care k
Lynn

 

 

 

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Author: Fiona Lamb
Date:   02-07-04 18:35

K it could be patulous eustachian tube dysfunction. I have that and I often feel like air is rushing all over the place inside my ear and I too notice it when I bend over. Also water-like sensations - squishing, popping noises. It's not a terrible condition and I have gotten used to it now.
Best wishes!
Fiona

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Lynn
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Reply with quote  #2 

Author: Joe M.
Date:   04-16-05 21:11

Hello,

Some of you may already know me. I am the one who most likely has TTS (tensor typani syndrome) and/or SM (stapedial myoclonus) in my left ear only. I have a more than mild case of tinnitus, but for me, it is liveable and it doesn't really bother me even though I know it is there.

But here is the problem. Up until now, I have been vary wary that I may have H. I do not have the main symptom of "all sounds being too loud" but there are so many things that overlap for me (things that also fall into H, that I have as well.)

I should mention I know I do not have recruitment, as all of my hearing tests show that my hearing is basically normal, except for a marginal loss in the affected left ear, but it is all in the normal range, unlike H, where it can fall into the supersonic range.

Let me first say that for me, having lots of sound around me is GREAT. Like being at a party/bar, lots of white noise of the radio on. This stops my ear from THUMPING from high-pitched sounds. But in a quiet room, turning a page, or the clinking of dishes, my own voice, other's voices, car keys rattling cause my ear to go thump (like the feeling of a little troll inside my head kicking my ear drum.) This sensitivity to high-pitched sounds falls under H. Quick shifts in noise intensity, like turning off the radio or a voice fluxuation will cause the impending thump or crackle or pop (a lot like rice crispies!) This site mentions that many T sufferers have H. I definitely have T.

But the thing is, ALL sounds for me are not too loud, just some of them. Or at least I think they are? Does that make sense? Probably not. Maybe my ear/brain is thinking they are too loud (even though I do not perceive them as TOO loud, just barely or slightly louder than normal) and the result is the stapedius or tensor to react in a way that it shouldn't. But this is only in reaction to certain high-frequency noises. For example: I can talk to my dad on the phone because he has a deep voice and be relatively ok, but talking to my mom or my 5-year old neice causes Booms!

Also, I have a feeling of fullness, like H sufferers. I will occasionally have ear pain, (usually a 2-3 or a scale of 10) for about a minute but this only happens once every 3-4 weeks for about a 2 day period, in bouts of 6 or 7 times (roughly).

I also have moderate to severe TMJ (and bruxism) and have taken meds that are known to cause myoclonus (WelButrin and Paxil). Tinnitus and hearing loss and other hearing problems run in the family.

I have also noticed that in this site, H is often used as a synonym for T. (Unless I am reading this wrong. In the category section. It reads, "Catagory 0, Tinnitus (hyperacusis) is a minimal problem." With H in parenthesis, that would seem to me that they are one in the same, but I don't think that is the case?

I had surgery to repair an oval window perilympatic fistula (a hole in the cochlea) in May 2004. After that, so much of my symptoms went away. But now they have returned.

Anyways, so many of my symptoms overlap with H, (except for the main one of all sounds being too loud) I SERIOUSLY WONDER can I have some form of H or am I looking more at just SM or TTS?

Joe.

 

 

 

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Author: lib
Date:   04-16-05 21:22

joe,
if it helps...i was the same way, i dont think i have true h, i think i had mild h, due to the myo, now its better.
i think the myo makes us aware because of the spasms.
talked to poe today....he is willing to botox the tvp, if i want....i love that doc!
maybe if your that concerned a trip to him would help....hes the best!
lib

 

 

 

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Author: Joe M.
Date:   04-16-05 22:09

Hey Lib,

Isn't it sad, we are both on here on a Saturday night! I am going to Wiet on Thursday, with ultimatum. Cut the muscles or else! I don't want Botox. I want to schedule surgery. I don't care if you don't understand this. Just accept the fact that I have more information about this rare condition than you do. I know that both my sm and tt are spasming. (I just read the Stapedial Mycolonus post by Fiona...very informative).

I am willing to sign any waivers. I am 100% sure that the muscles are spasming. What I don't know is why or how or who or what, just that they are the cause of my agony. I have done so much damn research on this, it is sickening. You know, you have done the same.

I can't imagine going in there and them wanting to not do this for me or wanting more tests or more theories. If they do not agree to schedule surgery for me, I am on a plane to NIH as soon as I can get there to tell your docs whats going on with me and ask them to do the surgery. Did you give your docs my notes? Did they say anything?

Joe

 

 

 

 

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Author: j 
Date:   04-16-05 22:23

Hey Lib,

Isn't it sad, we are both on here on a Saturday night!


who says you have to go out on a Sat Night!!!

 

 

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Author: Joe M
Date:   04-16-05 22:26

Anyone know who "j" is? Besides, it was just a little humor...

 

 

 

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Author: Lynn McLaren
Date:   04-16-05 23:05

Hi Joe,

Paxil can cause myoclonus ? I didn't know that. I took Paxil for about all of 6 days and I phoned my medical provider because it caused my childrens voices to sound like they were talking in a swimming pool area...

She didn't think it was a big deal and I should just continue takeing it but I had dizzyness feeling like I was going to faint couldn't sleep just all sorts of fun symptoms so I just stopped takeing it and ended up in the emergancy waiting room real sick.

Should have never tried it in the first place. I wrote about this is on the board long time ago. This was probably when my children were very young. Maybe 5 or 4 yrs old. I can't remember but it was long before hyperacusis or tinnitus...

Thoses where hard days with my kids and Paxil did not take off the edge at all. I don't think that is responsible for my problems now because of the gap of time yet it did effect my ears at the time....

Medications can cause problems....

Take Care Joe

Lynn

 

 

 

 

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Author: lib
Date:   04-17-05 08:46

hi joe,

if you get no where go to dr sismanis in richmond, he will do the surgery, he is going to do a guy from fla that came up on thursday.
i think botox may be an idea also, i talked to my dr in boston and he is willing to do it if i want.
maybe both need to be done the surgery middle ear and botox the e tube.
as far as sat night...yes and no, i sat out by the pool with a few watermelon martinis....lap top, beautiful weather...down loading from itoons....not to bad.
hang in there and remember dr s is just a phone call away!
lib

 

 

 

 

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Author:Lynn McLaren
Date:   04-17-05 11:11

Hi Lib,

Sounds good to me. The watermellon martinis.. The weather is warming up .. At least its going back and forth as today its drizzle... Yesterday it was very warm and I spent lots of the day with my kids out back getting weeding and gardening done.

But maybe botox for the E-Tubes... I keep think about my E-Tubes being involved with theses muscle air flow thunder roar booming thing. Maybe not the total chain but the E-tube has to set off some kind of reaction unless there is a muscle that does not like air hitting it.

Or to be disturbed by certain movements or pressure. But I've had lots of experience with botox. Not in my E-Tubes of course but in my neck and I had it once in my forehead for tension reasons.

I never got sick when it was shot in my neck before but when they did my forehead... This was a different doctor not my regular one.... I got a headache and flu like symptoms right after.

I have to think about the E-Tube thing. It might work and I know Botox eventually wears off and you have to go back and get another shot again.. Botox will numb the muscles but not the brain signals or change the nerve signals to the muscle.

It will just stop the reaction by stoping the muscle reaction. But its an interesting concept. How well does it work for the E-Tubes...

Will it stop the crackling ???

Take Care Lib

Lynn

 

 

 

 

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Author: Joe M.
Date:   04-17-05 11:19

Lynn,

Yes Paxil is one of many SSRIs take will cause myoclonus. I took mine for six years though. I wish I had the specific site I found where I got my info, but if you search "Paxil and Myoclonus" or SSRI and Myoclonus", you will get a lot of results.

But you know, all the drugs the pharm. companies are pushing are so NOT safe! They don't really know want kind of harm these drugs really do in the long run and even if they do, they don't care, because it is all about the money to them. Because if we develop another problem resulting from their drug they will just have another drug for that new problem. (And all of which we would never be able to prove anyways and even if we did, going to court against these beheamoth trillion dollar corps would be like trying to blow up a building with a firecracker).

Lib, sounds like a relaxing evening. I guess "j" couldn't understand that it was just a dumb joke, besides, I saw him/her get deleted off another board anyways.

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Author: Lynn McLaren
Date:   04-17-05 12:05

Hi Joe,

I only took Paxil for all of 6 days........ And it effected my ears and whole body but my medical providers thru expirence with me found out I'm a low doser when it comes to medication and my daughter wa diagnosied with the same problem from the regional center Doctor.

I have a report on it. I forgot whast its called and I wrote it out a long time back so I got the worst of Paxell back then. My daughter is on no medications at this time.

It just made her worse or just real drugged out looking and not much better. You should have seen her school picture that year. It just wasen't working and I was so happy that I got a year or so of Trazadone that worked so well for me.

You don't know how happy I was for that.

I don't think I could have made it thru my tinnitus and early days of hyperacusis without it. Sleep was all I got that made me happy and peacefull back then.

And who's " j"... I missed that post. I'm not allways on so I miss alot.

Take Care Joe

Lynn

 

 

 

 

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Lynn
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Reply with quote  #3 

Author: Joe M.
Date:   04-17-05 17:03

Oh, "j" is one of the posts above. I don't know who it is and I don't want to start anything with anyone here on the boards because all I am here to do is learn how I can help my situation and hopefully help others.

Take care too Lynn,

Joe

 

 

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Author: lib
Date:   04-17-05 19:24

hi joe and lynn,
yes Js post was just a distraction....meaningless ....i guess. what other board are you on?
any way, i think about botox, it does worry me.
i will look into it more and then decide. not sure it will stop the crackling....i would hope.
joe have you had a cold with this?
i seem to do better, not sure why.
take care you two!
lib

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Author: Lynn McLaren
Date:   04-17-05 23:00

Hi Joe,

Don't worry about it. I know your not. You just brought it up for Lib.. I missed it..

What a day I'm so tired. I've come along way. I told my husband while we were sitting under all thoses hanging like ceiling lights at black agnus restaurant that I would be hearing all the wiring on the ceiling beyond the lights and from the lights at one time.

I would not have been able to sit here and all thoses lights would have drove me crazy..... He said I know it.....

It feels so good. But I know my limitations. Thats why I don't want to ever go back to the days of before. It was really bad back then. Just terrible...

I hope I get even better but I don't know. This is O.K. for now.

Take Care Joe

Lynn

 

 

 

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Author: john
Date:   04-18-05 04:58

Hello Lib, I seem to remember that you had some sort of operation on a muscle or muscles within the middle ear. Could you please explain what the operation was for, what the surgeons did and what was the end result? I am interested in the function of these muscles (what they do) , and what can go wrong with them. What were the symptoms you experienced and what was actually wrong and how did they fix it?
Thanks a lot Lib.
Cheers
John

 

 

 

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Author:Joe
Date:   04-18-05 07:08

Lib,

No I haven't had a cold in a long long time. Sorry, didn't mean another board, I meant another thread here. I agree with your email, I don't think TRT or pink noise will help, since this is a muscular disorder.

I have been thinking about Dr. S. lately, since my appt is Thursday with Wiet. And just in case he still says let's wait, I will be seeing Dr. S. But here is the thing. I would probably have to go see him for an initial appt and then go back for the surgery, right? How did this guy do it from FL? Did he just take a month off or such. Because I know he would probably have to do the initial meeting and then schedule surgery, which may be a month later.

God, my ear is really bad today. THUMP THUMP THUMP THUMP THUMP AHHH GET OUT OF MY HEAD!

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Author: lib
Date:   04-18-05 07:20

hi joe,

well he quit his job over a year ago, and does something from home now. he drove up and stopped at family in nc, he will schedule surgery. he will stay in richmond the day of and head home the next day. it will be two trips, one ear at a time. i think i waited about 2 weeks for surgery, not to bad.
you could always fax him ahead of time so you can make the most of your visit.
lib

hi john,
well, long story....you can look up my posts and read it all here, that might be easier.
i had the tendons cut in both ears, the tensor tympani and stapedial in r ear and tt in left to relieve the middle ear spasms, i also have it in my e tube and am considering botox...
the symptoms in the middle ear are much better, the flicking, thumping, kicking feeling, the noise induced spasms and spasms to my own voice are all much better.
please feel free to ask anything.
what are your symptoms?
lib

 

 

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Author: Jamie
Date:   04-18-05 07:33

lib,

how is your Tinnitus?

 

 

 

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Reply with quote  #4 

Author: Lynn McLaren
Date:   04-18-05 13:05

Hi Joe,

What you are saying could be true. Even thou with pink noise and time my tensor spasms to sounds of keys, dishes, silverware, metal locks, newspaper, paper, voices and other sounds got better over time then finally went away.

And my hyperacusis sound sensitivity has improved and my loudness tolerance about came all back. Maybe is all back but I'll never test that to the extreme. I still have the booming thumping thing.

Which I know was caused from that antibiotic with weak ears in a room I slept in all night with a double window fan on hi close to my bed.

I guess the weak ears the noise and the antibiotic just did something to my ears and the thudding started with that. Did not have it before that. And that was when I could handle loud double fans on hi........

My ears have been thru alot and my hyperacusis has improved alot but it seems that the thumping is about the same as the crackling....

So can pink noise cure thumping and cracking... I don't know and nobody has answered my question over the years of this....

But I know when it came to to the sound sensitivity situation the pink noise, music therapy, being braver and time did help lots. Everything else pretty much went away but the problems I have now.

Was it worth doing the pink noise and other things... Yes... For me it was. I was real bad off.

Will it ever relieve my thumping or crackling. Maybe not. That may be a seperate damage condition issue. What do I do now ?

Just wait and see and continue on.

I've been from hell and back. To me... This is good... Real good.

Take Care Joe

Lynn

 

 

 

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Date:   04-18-05 15:45

Hi Lib,
You had the muscles in the middle ear cut do you know anything about the function of the middle ear muscles?Ive had the middle ear bones removed, this would most likey mean that there will be no muscles left either. I've been trying to find out if this has been the main reason for my ear not dealing with louder sound and therefore being susceptible to damage. Apparently the mucles have something to do with compressing the louder sound, its just interesting to know if the complete lack of a middle ear would still mean it would be more prone to damage. Ialways thought it would be less(no/less conductivity)in my case it looks like sound was able to damage my inner ear and cause the subsequent T and H.

Just asking you really, because of your personal experience and perhaps in the US your consultants explain a lot more post op then we get here in the UK, I would have really appreciated the knowledge after the operation but was told very little, perhaps the US is the same, but if your paying you want the full service, here in the Uk you can be just a number at times, although many in the organisation are excellent ie nursing, etc...just the consultants are so pompous!

Incidently, the E tube thing, is it responsible do you think for the roaring sound that often accompanies my Tinnitus, I get it when im talking(Im probably just a wind bag!)but its difficult to get a grip of what is happening there...talking..its a problem, the t goes up and the roar...its getting more bizarre,is it the E tube and the air releasing into the emptiness of the middle ear? I need a form of hypnosis where I can just imagine myself as before it all happened..what a cure that would be!

Care and hope,
Jim

 

 

 

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Author: lib
Date:   04-18-05 16:06

hi jim,

wow, im not sure if i understand your e tube symptoms, when you say roaring with t can you explain what you hear and feel.
for me they severed the 2 muscles in my r ear and the tt in the left ear, this has helped with spasms. i sometimes hear my voice or outside sounds louder as a side effect, but not to bad...i can tell the difference between the 2 ears.
the muscles are there to dampen sudden loud sounds and also to dampen your voice when you tell or talk loudly. with myoclonus they are worthless in my eyes because both will cause terrible symptoms.
i hope i have helped.
lib

 

 

 

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Author: Lynn McLaren
Date:   04-19-05 00:41

Hi Jim,

I think I understand what your saying. Is the roar like a roar of wind thru your E-Tubes that spikes or stirs up the tinnitus while its happening...

Is that what you are describing ?

Take Care

Lynn

 

 

 

 

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Author: John
Date:   04-19-05 05:02

Hello Lib, thanks for answering my letter. I have tinnitus (not bothersome) and hyperacusis (bothersome). My symptoms are like everone else. Normal sounds appear very loud to me. One thing I have noticed though, is immediately after hearing some sounds I feel a flutter in my left ear. As though the eardrum is reacting to that particular sound. It seems as though my eardrum is still vibrating after the sound has
disappeared. I believe that these muscles are failing to tighten the eardrum after the sound has gone. My question to you is, --- is this what these muscles are supposed to do? What is the result after cutting them?
Thanks Lib.
Cheers
John

 

 

 

 

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Author: lib
Date:   04-19-05 07:12

hi john,
it is what i had but mine just continued to get worse, it would react to outside sound and my own voice...cutting them relieved the rattling, fluttering moving eardrum.
i think its an over active muscle....its over doing its job.
so for me, the surgery provided some relief.
i also have it in my e tube muscles, so that horror is still there....but i am much better than before.
lib

 

 

 

 

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Author: Joe
Date:   04-19-05 12:18

Lib,

Since I am still going to push my doctors (Thursday is my appt) to cut the "bleepers", the one question I do have is this:

Now when you hear outside sounds like rattling dishes, metal clinking, turning the page on a book, etc., do you still get the THUMP sound and feeling?

Ok, sorry, second question, in your right ear, can you describe how much louder your own voice is? Is is when you yell, you really can't because it too loud or are you still able to yell but just with slight discomfort?

Have your neuros come up with any other ideas why these muscles funk up? If I didn't have to work, I would honestly just go out there and talk with them just to trade theories with them and see what they have to say. I mean, I need relief, and I know from you that cutting will provide relief but I am still unsure for me, that it may cause side effects that will be just as bad. I know at this point, it is completely naive to think in the next few years they will be any closer to finding an alternative to cutting the muscles to relieve the agony, or finding a reason why the muscles are spasming.

Last night, I went from a 6-7 to a 2-3 in a matter of minutes. I don't know why. But every time it happens, I feel less pressure in my left ear and more in my right but the result it less thumping in my left (and fortunately none in my right). I still have a theory that my TMJ, which because of its nature, clenches muscles right underneath the ear (and are connected) cause E-tube dysfunction, and in turn because the e-tube isn't regulating the pressure correctly, causes the inner ear pressure to be faulty and this causes the whole inner ear to dysfunction (including the muscles). This makes a lot of sense for me because the less pressure (or more open my ear/e-tube feels) the less sense of thumping/fluttering I get). Dr. Nagler...your opinion?

 

 

 

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