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krebnac

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Posts: 16
Reply with quote  #1 
Hi everybody. I am just new to this website. The reason i guess the same for like everybody. When i listen people, high picthed noises, metalic, glass objects i hear crackling and also i have hyperacusis. Both of them finished my life. I cant focus anything anymore. I cant go to kitchen, meet with friends, no social life at all. I would love to learn the reason why i hear crackling the noises. Doctors cannot say anything at all. One doctor told me hearing lose started and that is the reason i hear noises crackling, broken speaker, but it didnt make sense to me cause my hearing tests looks pretty fine. I see JoeM had surgery with muscles and says he healed. I couldnt contact u with private messaging and if u read this can u please contact me JoeM. I really need your advise and experience. And also other members please help. [frown]
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Trashboat

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Reply with quote  #2 
Just posted about this:

http://www.chat-hyperacusis.net/post/fihd-broken-speaker-sound-in-ear-megathread-9511904?pid=1302056661
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BCX

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Reply with quote  #3 
Just wondering but does your own voice hurts you too?
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krebnac

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Reply with quote  #4 
That is the worst. Yes it hurts a lot. Also crackling hearing makes with high pitched noises. What about you?
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BCX

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Reply with quote  #5 
Quote:
Originally Posted by krebnac
That is the worst. Yes it hurts a lot. Also crackling hearing makes with high pitched noises. What about you?


Yes, I experience it too. I have a very deep voice and it hurts me a lot. I tend to change the tone of my voice just so it doesn't hurt me and I keep my conversation very short. I try to avoid talking as much as I can. And yes, high pitch noises and crackling sensations. Do you experience other symptoms as well such as, when I touch my face or ears, yawn and chewing it flutters or vibrates.
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krebnac

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Reply with quote  #6 
Yes. I feel u. Exactly the same feeling. Sensation of fluttering when i touch aorund. I was thinking i am the only one with that. But looks exactly same problems.
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BCX

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Posts: 39
Reply with quote  #7 
I read somewhere in this group about myoclonus. It's similar to what I have described. When touching my face or area around my ears it flutters/vibrates. I really don't know yet but I can assume that myoclonus is what I may have. I won't be seeing my ENT til 2 weeks from now and I'm going to question them non stop about my ears. I've heard that ENT are no help but I still want a sense of hope to see what I really do have just so I know where to start.
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krebnac

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Reply with quote  #8 
My friend. I am having this since 7 years. I saw many ents. It is easy to say muscles but no cure for any. I dont know also how a muscle do that. Vibrating fluttering. And also crackling with me when i talk listen or noises. It hurs a lot. What about you. You have the same? Crackling broken speaker hearing. Maybe muscles do that. I dont know exactly. Maybe would worth trying to paralyz them with botox. I know sound is scary but this is not normal botox. Botox for ear. They paralyz that muscles but as i heard 3 4 months later effect gone and starts again. Maybe at that time muscles will rest and heal. Maybe not. Maybe not 3 months maybe 1 year. Doctors know better i guess. Byt around me no any doctors knows about all these. Also important to which doctor.
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BCX

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Reply with quote  #9 
Quote:
Originally Posted by krebnac
My friend. I am having this since 7 years. I saw many ents. It is easy to say muscles but no cure for any. I dont know also how a muscle do that. Vibrating fluttering. And also crackling with me when i talk listen or noises. It hurs a lot. What about you. You have the same? Crackling broken speaker hearing. Maybe muscles do that. I dont know exactly. Maybe would worth trying to paralyz them with botox. I know sound is scary but this is not normal botox. Botox for ear. They paralyz that muscles but as i heard 3 4 months later effect gone and starts again. Maybe at that time muscles will rest and heal. Maybe not. Maybe not 3 months maybe 1 year. Doctors know better i guess. Byt around me no any doctors knows about all these. Also important to which doctor.


I have T for 1 year and H for 8 months. I never thought of anybody would still have it for that long. I live in Cali and im not even sure if theres any specalist who may know of H. I swear, its like they dont even want to help us even if they can judt invest in resrarching it or doing more than what they learn in school.

And yes, i hear many abnormal sounds like you do, crackling broken speakers and many more. Have you try TRT therapy yet? It suppose to be effective for H but its a slow progress, better than nothing. I never heard of botox paralyzing the muscle that controls the ear and the way you describe it sounds terrifying. Have you try it yet?
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BCX

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Reply with quote  #10 
Another question: You mention that you went to go see many ENTs, Have they recommend you any surgeries? Have you gone to see an audiologist?
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krebnac

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Posts: 16
Reply with quote  #11 
We have the same problem. Crackling broken seaker. Tinnitus. Hyperacusis.sorry my friend being the same.but believe me this type of life hurts a lot.. noises pain. Life is scary. I lost mre than 23 kg which is more than 55 lbs. I am lost in these all. The last 3 years i visit many countries many doctors in europe. Nobody could help. But they seemed not to help like u said. But believe they cannot help. Just no cure.. i asked trt to doctors. They told me nahh. Dont do that. Now i dont have any choice. It is not a cure but to keep living. I checked in europe many places not see hyperacusis specialist.it looks like i will buy sound generators myself and strat myself doing it. I hope it will help some.it is just hell. Just hell to hear broken crackling sensitive when i open microwave and close it again.. i just had to do that but put me down again. I am so sad. I am 28..what about you? And how did you get these problems.can i learn if you dont mind
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krebnac

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Posts: 16
Reply with quote  #12 
Quote:
Originally Posted by BCX
Another question: You mention that you went to go see many ENTs, Have they recommend you any surgeries? Have you gone to see an audiologist?


They do not know also much about these. I heard on internet some have surgeries to cut muscles. But not one like tensor tympani only. Some people r cutted only tensor tympani and lltgey realized not all problems gone and they cut later stapedi too. Some people cut all myscles in one surgery. Some people said they all relifed but some said no any difference. They cannot tell you what is exact problem and they cannot guarantee you anyting. And to cut those muscles usually in america doctors specialized. I didnt see any around me. They dont do here
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BCX

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Reply with quote  #13 
I am 22 and I'm trying my best to find help if anything. I first had T this year at the beginning of January from an extremely bad cold. I was constantly sneezing, blowing my nose, and coughing. During my bad cold, I had T but it was mild. Didn't have H yet. I was on some antibiotics that my primary doctor prescribe me and my T went away some how. I was an outgoing person at the time, going to festivals and clubbing where they play loud music. I was also an alcoholic at the time and did drugs too. Then at the end of May, I had H. I thought to myself maybe it might be all the alochol and drugs that I did when I was good and everything caught up to me. This was the first time i experienced H and it was extremely painful and I couldn't bear any sound/noise. After that, I was anxious to what I was experiencing and did all the research I could and notice that I have H. Even my primary doctor didn't know what it was. I made an app. to see an ENT during July and my app. wasn't til Dec. 29. I was hopeless and didn't know what to do. But.......

Here's the good news.
I found out that pink noise was extremely effective for H people and I gave it a try. Starting the first week of August to the end of November, I found moderate improvements which was great. It took me 4 months to notice that I was able to handle almost all sorts of sound/noise.

Here's the bad news.
After I got better or recover from using pink noise, the fist week of December, I went to a house party. A couple days later my hyperacusis came back and this time it was worse than before so I think. Then, I got sick again from a bad cold which made it even worse. My left ear was totally damage, but my right ear was still mild from H. I feel like I went back to square one.

Til this very day, I still have T but it's mild and doesn't bother as much, but H is extremely server (only on the left ear), my right ear has H too but it's not too bad like my left ear.

How do I live my life day by day? I simply ignore the fact that H is hurting me. I try to restrain myself and hear all the sounds that maybe loud for me and get use to them again. *IMPORTANT: I'm still listening to pink noise and as of right now, my H is still serve but I can feel that I am able to hear some but very little sound/noise again. Therefore, i encourage you to listen to pink noise or sound generators because it's extremely helpful. It's just going to take a lot of patient and time but I know we both will recover. H has ruin my life and I won't let it happen again. There is still hope.
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krebnac

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Posts: 16
Reply with quote  #14 
Quote:
Originally Posted by BCX
I am 22 and I'm trying my best to find help if anything. I first had T this year at the beginning of January from an extremely bad cold. I was constantly sneezing, blowing my nose, and coughing. During my bad cold, I had T but it was mild. Didn't have H yet. I was on some antibiotics that my primary doctor prescribe me and my T went away some how. I was an outgoing person at the time, going to festivals and clubbing where they play loud music. I was also an alcoholic at the time and did drugs too. Then at the end of May, I had H. I thought to myself maybe it might be all the alochol and drugs that I did when I was good and everything caught up to me. This was the first time i experienced H and it was extremely painful and I couldn't bear any sound/noise. After that, I was anxious to what I was experiencing and did all the research I could and notice that I have H. Even my primary doctor didn't know what it was. I made an app. to see an ENT during July and my app. wasn't til Dec. 29. I was hopeless and didn't know what to do. But.......

Here's the good news.
I found out that pink noise was extremely effective for H people and I gave it a try. Starting the first week of August to the end of November, I found moderate improvements which was great. It took me 4 months to notice that I was able to handle almost all sorts of sound/noise.

Here's the bad news.
After I got better or recover from using pink noise, the fist week of December, I went to a house party. A couple days later my hyperacusis came back and this time it was worse than before so I think. Then, I got sick again from a bad cold which made it even worse. My left ear was totally damage, but my right ear was still mild from H. I feel like I went back to square one.

Til this very day, I still have T but it's mild and doesn't bother as much, but H is extremely server (only on the left ear), my ear ear has H too but it's not too bad like my left ear.

How do I live my life day by day? I simple ignore the fact that H is hurting me. I try to restrain myself and hear all the sounds that maybe loud for me and get use to them again. *IMPORTANT: I'm still listening to pink noise and as of right now, my H is still serve but I can feel that I am able to hear some but very little sound/noise again. Therefore, i encourage you to listen to pink noise or sound generators because it's extremely helpful. It's just going to take a lot of patient and time but I know we both will recover. H has ruin my life and I won't let it happen again. There is still hope.


Good news what you say about sound therapy. But i dont have hyperacusis clinics around me. Nobody knows about it. I will buy sound generators myself and start listening pink noise. But i dont know any idea what db to listen.what to do. As you are the same like me can you guide me some with db and how to do. Idont know youare doing yourself or your doctors helps you with sound therapy.
It is good what you say progress it helps but i dont want it come back. I am scared what if comes back later. And i am sorry for you younare 22. I was 21 when i get this. Last 7 years i have and last 3 years ido nothing. Like a life paralyzed. I dont know how to live until my life finish. It is really hard for me. I was the same hopefull when i was 22. But not anymore. It is just too hard for me. Can you tell me more with sound therapy. About volume db what youare doing.
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BCX

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Posts: 39
Reply with quote  #15 
Quote:
Originally Posted by krebnac


Good news what you say about sound therapy. But i dont have hyperacusis clinics around me. Nobody knows about it. I will buy sound generators myself and start listening pink noise. But i dont know any idea what db to listen.what to do. As you are the same like me can you guide me some with db and how to do. Idont know youare doing yourself or your doctors helps you with sound therapy.
It is good what you say progress it helps but i dont want it come back. I am scared what if comes back later. And i am sorry for you younare 22. I was 21 when i get this. Last 7 years i have and last 3 years ido nothing. Like a life paralyzed. I dont know how to live until my life finish. It is really hard for me. I was the same hopefull when i was 22. But not anymore. It is just too hard for me. Can you tell me more with sound therapy. About volume db what youare doing.


Honestly, I really don't know the db of how high or low anybody should listen to pink noise or sound generators. I am no doctor. But this is exactly what I did from my past experience with pink noise and I hope this will help you too and everyone else who may read this.

What I did:
I downloaded pink noise off from YouTube. I listened it through headphones for 1-2 hours everyday. To be exact, 1hr in the day and 1hr at night. In between those times, I just live my life by trying to maintain sounds again. Even though these sound/noise were loud to me, I just had to man up. I *only wear earplugs when I shower because I cannot tolerate the sound of water hitting the ground. It's too painful. Other than that, I don't wear earplugs at all, even when I'm eating, driving, talking, etc...

How high or low when listening to pink noise?
What I did:
When I first started listening to pink noise, I listened to it very low. Sometimes medium if I was able to handle it. I have this mindset where I always try to test my ears to see if I was able to handle pink noise at such a moderate level. But I couldnt handle it. *Remeber when I mention that I was listening to pink noise for 4 months. Well, I started slowly by listening to pink noise at a low volume for the first month and a low volume where it is most comfortable. I dont know what db it is at but it was pretty low. The 2nd month, I increase it by one db I guess that's what people say. The 3rd month, I was still at the same level as the 2nd month but I was noticing some improvements. The 4th month, I increase the volume day and night a little higher by 2 db and I was able to handle it. And that was when I knew pink noise was effective for me and I was improving.

But like I said thats how I did it. I dont know how other people did their sound therapy but I recommend you starting it low and working your way up by increasing the volume. I hope this help you and remember to stay POSITIVE, Have HOPE, Have FAITH, and NEVER GIVE UP!!!




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krebnac

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Posts: 16
Reply with quote  #16 
Quote:
Originally Posted by BCX


Honestly, I really don't know the db of how high or low anybody should listen to pink noise or sound generators. I am no doctor. But this is exactly what I did from my past experience with pink noise and I hope this will help you too and everyone else who may read this.

What I did:
I downloaded pink noise off from YouTube. I listened it through headphones for 1-2 hours everyday. To be exact, 1hr in the day and 1hr at night. In between those times, I just live my life by trying to maintain sounds again. Even though these sound/noise were loud to me, I just had to man up. I *only wear earplugs when I shower because I cannot tolerate the sound of water hitting the ground. It's too painful. Other than that, I don't wear earplugs at all, even when I'm eating, driving, talking, etc...

How high or low when listening to pink noise?
What I did:
When I first started listening to pink noise, I listened to it very low. Sometimes medium if I was able to handle it. I have this mindset where I always try to test my ears to see if I was able to handle pink noise at such a moderate level. But I couldnt handle it. *Remeber when I mention that I was listening to pink noise for 4 months. Well, I started slowly by listening to pink noise at a low volume for the first month and a low volume where it is most comfortable. I dont know what db it is at but it was pretty low. The 2nd month, I increase it by one db I guess that's what people say. The 3rd month, I was still at the same level as the 2nd month but I was noticing some improvements. The 4th month, I increase the volume day and night a little higher by 2 db and I was able to handle it. And that was when I knew pink noise was effective for me and I was improving.

But like I said thats how I did it. I dont know how other people did their sound therapy but I recommend you starting it low and working your way up by increasing the volume. I hope this help you and remember to stay POSITIVE, Have HOPE, Have FAITH, and NEVER GIVE UP!!!






It is good to hear postive things my friend. I am very glad with the positive energy you have. Believe me i was the same. But you know when you accept the reality people fail. This is how i failed. Ok i understand hyperacusis. Ok i understand tinnitus too but i dont understand that crackling, broken spekaer hearing. The main problem is i cannot talk it just makes crackle noise,sensitivity and blows in my brain. It hurts so much. To talk to listen everything. I would he happy if i dont have it but i have. How i did it. I was clubbing party too. So much. But it was not the only reason. I was in military school. We were training hard. I am from Turkey which means we had to be ready 24/7 because of geological reasons, we have all the time problem in borders with some crazy terrorist groups which never finish. We had to be perfect at shooting. They had to be done without protection because battlefield was not a place you sit and fishing. I felt ine day a ripped noise in my right ear. Everyday it incresed a lot.. it was like a paper going to pieces. And i couldnt stand to my own voice at the end. My eardrum was problem. I had surgery. Later i understood i had to quit. And the last 3 years since then i checked all the places 4 different countries. Best doctors and nothing. I started not to go out of home. 1 month. I was mens physique competitor but i lost more than 55 lbs which mean i am done with everything. Knowing no cure kills me. I want to speak normal i want to hear normal. I dont know if they muscles do that. It is like bone sound. But everything looks ok in mri. No idea my friend.i was thinking to have botox to muscles to paralyze but they dont know here how to do that either.. if it worked i would think to cut muscles later. I was thinking if the muscles would stop abnormal movements after sound therapy. Idont know dod you still heard tge crackles when u do something like talk listen or whatever you know better. Hypercausis got well in time but would be great to learn about also crackles.. and about the sound therapym it is good to hear it helps but you scared me you said it came back. 4 months youndid training and you went one party and it came back.you will not planning every 4 months therapy and going party and therapy and party again and again i guess. Maybe it was gonna come back after some time the reasonwas not party who knows
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BCX

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Posts: 39
Reply with quote  #17 
Yes, talking hurts me a lot too. I hear crackling noises and flutter/virbrations all at once. Its painful. Another symptom that I started to have is when I talk, yawn, or chew, my eardrums tend to vibrate afterwards for a couple of seconds. Does you ears do that too?

I try to ignore it as much as I can. The way how I think is sort of like reverse psychology, if I have to expose myself to sounds again in order for my ear to get better, then I have to talk in order for my ears to get use to it as well. During my 4 month period of listening to pink noise and trying to listen to sound/noise again, I still went out and party here and there but usually my H wouldn't affect me as much until a couple days later. In my opinion, my H prob. got worsen whenever I get a bad cold. When I go out drinking and partying, my ears does feel full and sensitive but only a couple of days. But when I'm sick, my H is worse. So by all means, I think getting sick is the most problematic for me.

Question: You said that you got surgery? How did it not help you? Do you have H on both ears or one?
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BCX

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Posts: 39
Reply with quote  #18 
Another thing is that when I was going out during my 4 month of sound therapy, my ears did hurt me but thankfully I did because I found it helpful that my ears were again use to some loud sounds/noise. Even when my friends are talking I was able to enjoy listening perfectly fine but talking was still a problem to me. During the 4 month period, I knew that talking was gonna be my worse enemy so I decided to talk but kept my conversation short and low. By doing so, it helped me talk louder and coversate more later on. Maybe you should try it.
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krebnac

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Posts: 16
Reply with quote  #19 
I was the same going places keep my life the same but didnt get better. I started feel so much pain also burns my ears something slowly all the time.like a sun burn or volcanic ash in my ears all the time.i wish i was like before but too late. Appreciate your tryings i hope you will get better. I hope ears will technology will improve and they will program our hearing.then i will ask to to hear 80 db which is 120 [smile]) sounds crackling is really problem . Maybe muscle. But doenst go itself. I am tellint you my friend 7 years and got worse. Hyperacusis too. Yes i have hyperacusis both ears but mostly right. Thanks to god left is better. Problems with left too but still better. We are the same problems believe me. Kind of same life style too. Wgen i was living 22 i was doing the same you did.. i am thinking now kortizol or how it is cold. It is steroid to ears to take blood circulation there. It is poor we dont have around me again. But you know ask the doctors. If u can get. U can be injected to ears maybe blood circulation can heal some. They do to american soldiers after battlefield. I saw many times. We didnt have it. America was taking care of their soldiers but my country not.
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BCX

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Posts: 39
Reply with quote  #20 
Thanks for the advice. Maybe I should ask my doctor about Kortizol. It sucks how we are both experiencing the same thing. I live in the US so hopefully I can get cured.
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krebnac

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Posts: 16
Reply with quote  #21 
Quote:
Originally Posted by BCX
Thanks for the advice. Maybe I should ask my doctor about Kortizol. It sucks how we are both experiencing the same thing. I live in the US so hopefully I can get cured.

I dont know. There is no cure. But i just think would be good if we can blood flow there. Maybe helps some. I will ask some doctors too. We have nothing to loose. Why not we can not try. Pls let me know what your doctors say about that. If theyknow that procedure it will be good. I will ask it also who knows that here. I give you my contact. We have same problems. We can share everything. I would like to be better and i want to share also help people with my all experiences.
https://www.facebook.com/can.b.celik.5
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BCX

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Posts: 39
Reply with quote  #22 
Definitely will let you know about it.
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lncarnold

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Posts: 2
Reply with quote  #23 
I just joined this site too! I had no idea it even existed and am thrilled to find it but yet sad to have to even know what it is. Even in typing this my left ear is going crazy with the fluttering. I had surgery on it a few years ago for another issue and in the background I felt I had fluttering in my right ear but never paid attention because of the left one causing weirder problems.  Now the left feels so horrible from the feeling of fullness, fluttering and yes, clicking when I swallow.  I was told that there is nothing I can do.  In knowing, however, that there are others out there, I don't feel so frustrated. I wish you all the best with this and we can all hope doctors don't think of it as "in our heads"..well, it is but you know what I mean! It is real ..and annoying.

BTW: the "other issue" I had surgery for is so weird it is hard to talk about BUT there may be someone out there who has this and needs to know what it is. I could hear the inner workings of my body. I know! How the heck??? The sound of my eyes, my jaw, footsteps, heartbeat, neck etc. absolutely took over my life! I could NOT have a conversation with anyone and the words "mind fog" was so appropriate. If you have this, and are terrified to talk about it, it is called "superior canal dehiscence" and is cause by a small hole in the superior canal of the inner ear.  The brain sets on it and lets sounds travel into your ear from your body. It is horrible and the surgery is not that much fun BUT the surgery works! I just now have to live with this other junk that is horrible too.  It just never ends. Someone out there will help us some day. We may be old and grey by then and it won't matter but....someday, right?  

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