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Trashboat

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Posts: 28
Reply with quote  #1 
Hello everyone.

This thread is devoted to what I have dubbed Frequency Induced Hearing Distortion, FIHD. This thread will serve to unite the disparate posts on different messaging boards and hopefully lead to answers. There is a large number of people with this disorder, and we need a space to sort through what this can be and share coping mechanisms. I chose this forum because I both have posted here in the past, and met a few people with this disorder here, notably Brighter7, who assisted me in reasoning through causes and solutions a few years back. I frequently check the internet for posts that indicate a cure, but I have not been successful, even though many users post about this in many areas. Doctors have been completely useless in every story I've read, so hopefully the force of a group of people can inspire change. I still think this is someone's groundbreaking research just waiting to be published. I also think there are many others who do not post, but like me search for answers. I encourage them to post and share their story here.

I want to start with a description of FIHD. My original thread detailing my symptoms is here:
http://www.chat-hyperacusis.net/post?id=5874432

To summarize, FIHD is a sound, like a broken or blown-out speaker, or crackling noise, in one (only one case I've read mentions both) ears. This distortion is brought on by sounds of a higher frequency and coincides with the normal sound but in an overt and extremely annoying way. The distortion occurs mostly at higher volumes of noise, such as when one listens to loud music with high frequencies, running water, or the clinking of dishes or silverware. The distortion happens only with external noise, and does not present independently.

Now I want to list what I know this disorder ISN'T, so hopefully we can progress to what it is. I've had this condition for 13 years, and I'm sick of dealing with it.

1. It is not allergies. No reported case, including mine, was solved through allergy medication. The only suggestion that holds any veracity is an assertion that the elimination of dairy products helps, but this is an isolated case.

2. It is not tinnitus. Symptoms do not match with that of the ringing described, and the cause appears to be divorced from that of general loud-noise-induced hearing damage.

3. It is not muscular spasms (myoclonus) of the tensor tympani or the stapedius muscles, at least not directly. I also have this disorder, and it sounds like rapid pulses or machine-gun fire. It may also feel like a moth is caught in your ear or that a flag is flapping in the wind. I also have had the tensor tympandectomy procedure, and even with my muscles removed, I still hear the distortion (it is actually much worse, as it now responds to pressure changes by pulsing in a wave-like sound while crackling more severely). Do NOT get this surgery.

4. It is not directly related to traumatic injury to the ear or ear infection, although it may be an unfortunate side effect.

There are several possibilities that I have reasoned may be the cause of this disorder, although I have no proof and doctors in every case can find nothing physically wrong with the ear.

1. Dislocation and loosening of the bones of the middle ear within their sockets, causing excessive vibration at certain frequencies of sound, perhaps arising from frequent muscular spasms.

2. Difficulty in pressure regulation, maybe arising from a defect in the Eustachian tube.

3. Limp or loose tympanic membrane.

I cannot narrow down these options without an exhaustive survey, so I'm hoping you all will post your stories as well as your answers to the following questions (feel free to add questions as well). I will answer them first:

1. Do you have a family history of ear disorders? Yes. Vague and unspecified on my mother's side.

2. Do you have symptoms of any kind in the ear during pressure changes besides the usual popping in airplanes? When do they occur? I have a rushing pulse-like noise followed by excessive FIHD during plane rides or even small changes in elevation, such as an elevator or hill. I also experience these symptoms during weather-related pressure fronts.

3. Do you experience FIHD in one or both ears? Any other symptoms in your healthy ear? My left ear. My right ear experiences throbbing machine-gun-like noises from muscular spasms and small distortions at very high volume and frequency.

4. Has a doctor diagnosed you with anything? Yes, but none were correct - nerve damage, muscular spasms, migraines, allergies.

5. Have you found a cure for FIHD? No. Coping mechanism discussed below.

6. Have you ever experienced traumatic injury to the affected ear? A few small events, nothing major.

7. Do you experience frequent uncontrolled muscle spasms? Yes.

8. Do you experience migraines? Yes.

9. Do you feel that your eardrums are unusually easy to click or pop? Do they feel weak? Yes.

10. Have you been exposed to excessively loud noise for prolonged periods? No.

11. Do you have an anxiety disorder? Which? Yes. Clinical OCD.


Finally, I wish to discuss the only coping mechanism that has worked for me - ignoring the problem completely. This sounds horrible and impossible, but it works. The more you think about the problem, the worse it will get. Your brain will slowly begin to phase the noise out, accepting it as a normal background sound. This is the same reason why you will stop hearing crickets after awhile - the sound is still present, but the noise does not register in your brain. I have been able to live "symptom-free" for long periods using this method, so give it a try.

Thanks for reading everyone, and I look forward to your replies. I will update semi-regularly, as it may take some time to gather us all in one place.

P.S. Here is a useful middle-ear diagram: https://www.scienceabc.com/wp-content/uploads/2017/07/Tensor-tympani-muscle-diagram.jpg
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krebnac

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Posts: 16
Reply with quote  #2 
Hi my friend.
I will tell u about my problems. I have hyperacusis and it is very bad one. I also have on my right ear crackling hearing, hering like broken speaker, fluttering, feeling pressure changes in ears. I was listening very high volume musics with my headset a lot of years. I was also clubbing a lot. I started to hear just little crackling and hyperacusis. I was in doctors and they all said i am all ok. They said i dont have hearing loss or any other problems. I kept listening music. I was also in military school and i was practising shooting a lot from morning to evening all day without any protection. It became a lot in the army. I started hear crackling when i speak, when i listen, when i eat. With any small high pitched noises i hear crackling like broken speaker. But lets make it clear here. When you hear crackling like broken speaker do you also feel muscles fluttering? I was pretty sure it was muscles problem because i really feel the muscles fluttering like a flag in a very bad strong windy weather. Do you also feel the same? Do you have any pain when you hear them? I am hyperacusis so i feel also pain. And my right ear has earache 24/7 no stop. I feel inside something broken. Again inwas thinking muscle is damaged and that is the reason for that crackle, broken speaker hearing. I dont know which is better if muscles are the problem or as you said hearing loss on some frequencies. What you think if they manage to regenerate inner hair cells one day do u think our hearing will be totally ok. My family or their famies they r all ok. They hear perfect, nobody has any medical problems. My friend that is very big problem i feel u. I am sure u can feel me also. Our lifes r taken. I live like a zombi no any motivation or focus to life. I will post u the link hear about inner ear cells . Can you check please and can you tell what u think about this if it can fix our problems in the future? http://www.frequencytx.com/our-company/about-us.php I dont know who told u this about hearing loss on some frequencies? Your doctors or you were thinking that?
You said it is only way ignoring. My friend really hard to ignore because i cant talk.with my own voice it crackles and disturbs and gives so much pain. When i listen other i hear them all the time with crackling. I have this problem since 21 and i am 28 now. I dont have power anymore to keep going, i dont know what to do. I was pretty sure they were muscles because the feeling is something is moving inside. I dont know how you feel? Feeling any fluttering like a muscle with that crackling?
Thanks
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Trashboat

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Reply with quote  #3 
1. Thank you so much for sharing your story.

2. I do not think this is hyperacusis, but the results of suffering through it are the same.

3. Ah yes, the 'moths are caught in my ear' sound. I am very familiar with this. My bad ear did this all the time when I layed down. That is definitely your tensor tympani muscle undergoing myoclonus. If you want relief from that noise, a tensor tympandectomy will solve the issue. However, although the moth/flag noise did go away in my case after the surgery, the static sound got even worse. Looking back, it was one of the worst mistakes of my life. The despair I felt when I took off my bandages, only to hear the same noise....it was one of the worst moments for me.

4. I never had pain in my ear, so I'm not sure about that. This sounds like you may be suffering from hyperacusis originating from your fear of loud noises aggravating your other issue. Even talking so much here about this problem makes me worry and exasperates the problem. Or perhaps you have both conditions. Hard to say.

5. My inclination is that our problem does not originate in the inner ear, which is where the cochlea and the hairs are located. I find it more plausible that it is located in the middle ear space, but I'm not ruling anything out. I also had and still have myoclonus in both ears, and I see you have it as well, so that lends credence to the middle ear theory. My main theory right now is that it originates somewhere along the pathway from the ear drum through the hearing bones. So, I can't say anything about that surgery. It is possibly a cure if our problem is cochlear. If my theory about the loosening of bones due to myoclonus is correct, I'm sure that modern medical science could reinforce or rebuild them. The problem is that doctors don't want to listen, sadly.

6. What kinds of symptoms do you have with pressure changes? Do your ears click when you swallow or move your jaw to an excessive degree?

7. Does your other ear have any symptoms? Can you describe the progression of your symptoms?

8. Most importantly, do NOT give up hope. I've been there. I've considered surgeries to permanently deafen myself, and gone into long bouts of depression. I also hear it when I talk, or really when any sound happens at all at this point. However, I only hear it when I am thinking about it. As I am typing this right now I can hear it, but as I forget my brain eliminates the sound. Just go out and do what you do, completely ignoring the sound. I know this sounds impossible, and it will not be easy, but I did it, and it does work. Do NOT avoid loud noises, as this does not help in any way. Just do things. Forget about it. Over time, without you even noticing, it will go away.
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krebnac

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Posts: 16
Reply with quote  #4 
Hi,
1. You are saying you think myoclonus the problem but you had other muscles cutted. I do not know why you didnt cut myoclonus. Because i feel the same it is more problem.
2. Yes i have pain 24 /7 and it is killing me. I dont know why but i feel like something broken, muscles are ripped , something is damaged there. I had all the test the last 3 years but all the doctors say all looks ok.
3. When i touch around my ear slowly i feel fluttering hearing whopping i feel strains. I dont know why but it is killing me.
4. My ear was fluttering hearing with ambulans noises but now is almost with every noises. It is hard to listen people talking to me cause it hurts because of hyperacusis and fluttering muffling crackling broken speaker hearing. I feel down a lot. I dont know how to deal with this.
5. I hear crackling like broken speaker. It is like comming from the bones inside. But something also fluttering like muscles. When i eat, when i speak, when i listen or any noises from the object. It is enough to have just little noise no matter how much db. I have hyperacusis too so it is with pain.
6. I have jaw problems a lot but they came after hyperacusis and this crackling hearing. I am too much sensitive and with noises strains and jaws started to have too much pain too. My jaws crackling all the time too. But i believe the reason is hyperacusis and rcakling hearings. If i dont have them i wouldnt have stress and jaw problems too.
7. When i swallow yes i hear noise click. Probably comes from myoclonus. I also feel inside my ears like moving verrything there. It turns me to crazy to live with this.
8. I have this the last 7 years and everyday is increasing worse. How many years you have this? You feel it is better in time or worse?
9. What you think what is the real problem? Why it doesnt heal itseld in time?
10. My life is gone. I lost 23 kg. Noises hurts, crackling hearing destroyed my life. I cry too much. I cannot socalize. I cannot go out. I know people will tell me go out. But noises really hurts. My crackling was just a few times a day but after i tried to go out it came very bad now. Happens with every noises.noise no neeed if i swallow, eat it is always there
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Dax

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Posts: 8
Reply with quote  #5 
So I have this too, realized I had it instead of typical Hyperacusis when I ran an LDL test and it came out that I have normal LDLs except for this distortion which starts around 60 DB, especially on lower frequencies.

I will answer questions as best as I can

1. Do you have a family history of ear disorders? Yes. My grand-father was hard of hearing, and my father has Meniere's (according to 3 different ENTs and audiologists, it's impossible I have Meniere's)

2. Do you have symptoms of any kind in the ear during pressure changes besides the usual popping in airplanes? When do they occur? Planes don't do anything to me pressure-wise, except being god-awfully ear-wrecking all the way.

3. Do you experience FIHD in one or both ears? Any other symptoms in your healthy ear? Both ears, except the right ear is much, much worse.

4. Has a doctor diagnosed you with anything? I've been diagnosed with mild hyperacusis, although I do not hear sounds louder. They're just horribly distorted.

5. Have you found a cure for FIHD? No, it's only getting worse so far.

6. Have you ever experienced traumatic injury to the affected ear? A few small events, nothing major. Played drums when I was young, stopped years ago. Went to a few concerts and clubs in total.

7. Do you experience frequent uncontrolled muscle spasms? Frequent no, but it does happen from time to time.

8. Do you experience migraines? Yes.

9. Do you feel that your eardrums are unusually easy to click or pop? Do they feel weak? Yes, they pop all the time when I swallow.

10. Have you been exposed to excessively loud noise for prolonged periods? Not quite. Played in a band when I was younger but we didn't practice much, and we only played 4 shows in total.

11. Do you have an anxiety disorder? Which? No.

Bonus question: Do I have jaw and neck problems? Yes, for the last 1.5 years I've had neck problems, and jaw problems since 20 years old (now 28)

None of the medical experts I saw found any cure to my neck and jaw problems so far, the dentist said that it was basically impossible that my jaw was causing my ear problems, but I know I've had jaw problems for a while now, it dislocated when I was 20 and it never fully cured.

My symptoms are as follows: Any sound which is either too low in frequency or too high, or too low in quality (low quality speakers), it just produces this secondary, extremely annoying buzzing sound akin to a broken speaker that is increasingly getting louder and louder compared to the normal sound as years pass. At first it was just a few key notes on the grand piano, but now I can't even play piano anymore. It's starting to distort everyday sounds like dishes, human voices, my own voice, movies, the TV, loud music, etc. The list just gets larger as time passes.

My hearing loss is mild, around 10 DB, although quite bad in the very high frequencies, but I have 100% normal hearing in the typical human conversation zones.

It's in both ears although the right ear is much worse (hearing loss in the right ear is also slightly worse, though not alarming yet according to audiologist)

Hopefully that helps! 

Obviously I'm seeking any way to either cope with this, or heal it although my hopes aren't very high right now.

Good day everyone!
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krebnac

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Posts: 16
Reply with quote  #6 
1. My parents are all ok. Everybody is perfect i am the only one having big problems. Because i was clubbing too much, i was listening very high volume songs with my headset and i was also sniper for 2 years and i was practising without protection from morning to evening.
2. I have distorted hearing. Crackling broken speaker hearing. Hyperacusis very bad. I feel fullness pressure problems, i feel in my ears everything is moving. It is not happening itself. It happens with noise induced. Any noise induced when i talk listen with object and very distorted hearing with high frequency noises.
3. I trusted too much my family hearing and i lost my hearing as distorted hyperacusis and crackling.
4. Jaw problems came later. After hyperacusis. Because i started to squeeze too much my jaws. So it is all normal to have now jaw problems. Crackling too in the jaws. But if u compare jaw with ear hyperscusis problems jaw problem is nothing to deal. Hyperacusis dostorted hearing is the worse
5. It is mostly on my right ear. Left ear hyperacusis too.but not like right ear
6. My hearing is like around 10db.
7. If you are looking for there is no cure for anything. Especially for us with distorted hearing who can fix this hearing.no cure for hyperacusis no cure for muscles no cure for jaws. But maybe in time will get better this is what i hope but it get worse and worse this is what scares me.it has been 7 years now. I cant take the pains anymore. If somebody gets better with anything in time please let us now. I want to know what is gonna happen 10 years later. Thanks.
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Trashboat

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Posts: 28
Reply with quote  #7 
Dax,

Thank you so much for answering my questions. It is unique that you hear the distortions at low frequencies as well, as far as my reading goes.

I'm constantly afraid that my good ear will devolve into the same condition. I get some distortion at extremely high frequency, loud sounds, and some popping from myoclonus, but that's all. It rattles a little but has never produced the overbearing static or broken speaker noise. How is your good ear? Is it getting worse as well? Mine seems to be staying pretty much the same.
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Trashboat

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Posts: 28
Reply with quote  #8 
Has either have you guys experienced your good ear becoming worse? That's my true fear. I don't want to live with this condition in both ears. My right ear is generally okay but it does have a bit of distortion at extremely high volumes and frequencies. It doesn't seem to getting worse but have you guys had any experience with this?
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krebnac

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Posts: 16
Reply with quote  #9 
I am the same. My right is totally broke. Left ear is has hyperacusis too and problems too but not like right ear. My right is got worse the last 3 years . Much more worse. Even if i protect my ears they were getting worse. Now i am really scared and wonder if it will get worse my better ear or can stay the same
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BCX

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Posts: 37
Reply with quote  #10 
My right ear is my good ear. There are times when its more sensitive than my left ears from loud frequencies which is weird. But my left ear is worst than my right ear. I just hope that my right ear doesn't become like my left.
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Kribu

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Posts: 43
Reply with quote  #11 
I had crackling and thought it was technology related. I was working in a call center with headphones. I often complained of static on the line. No one did anything. It was worse when we were very busy (hmm). That was when things we're fine. Then I got injured when caller yelled into conference speakerphone mic. (They thought they were being helpfu)l. Now I have hyperacusis and pain and increased tinnitus. Note: I have hearing loss since childhood. No change in loss, just sensitivity. Wore hearing aids until injury last March. Need new hearing aids before can try therapy (LDL only 10-15 dB above threshold). I'm wondering now if that crackling was a warning indicator that ears were being affected. Don't remember hearing it without hearing aids in. (But maybe it's below my threshold) don't know if this helps at all.
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Alexandra

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Reply with quote  #12 
I have had this for years and years... It started when I was around 14. I am now 20. When I was younger I went to ear doctors and they could not figure it out. I had an MRI and everything... One ENT even told me "Oh, some people are just more sensitive to noise than others." I was thinking "No, this is more than just sensitivity." Certain noises echo/crackle in my ear. I have chronic Eustachian tube dysfunction (my ears pop every time I swallow) but it only bothers me when they suck in and get pressure, which mainly happens when I get a cold. I am not convinced entirely that this echoing type effect is just from the Eustachian tube dysfunction. I've been saying I have hyperacusis, but now I am not so sure.

An example of noises that bother me are dishes and high pitched sounds. At one point it was so bad that even people talking would trigger this feeling/sound in my ear. I can really make it happen if I take water and put in my hands by my ear and suction it and make a sound. I eventually had to get specially molded ear plugs to help me cope.

It seems rather dissapointing that we don't have solid answers to this; I wish that we did...

Also, I occasionally get the spasm things in my ear that make a thumping sound. It's unpredictable and doesn't happen daily, weekly, or monthly. It just randomly happens. Sometimes I wake up to a light clicking noise as well, and strange ticklish sensations.

Another symptom I have is that when I lay upside down, I get head pressure sensations, mostly by my ears. I could not get on an inversion table because of it. It makes my hearing go in and out. For example, say that I lay my head off of the side of the bed when I'm laying on my back. Eventually, the sounds around me will go in and out, dropping in volume, then coming back up, dropping, then coming back up. Not for sure if this is vascular related or ear related...
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Dax

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Reply with quote  #13 
Sounds very interesting Alexandra, your symptoms look a lot like mine.

What steps did you take to try to remedy this so far?
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Alexandra

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Reply with quote  #14 
Quote:
Originally Posted by Dax
Sounds very interesting Alexandra, your symptoms look a lot like mine.

What steps did you take to try to remedy this so far?


The only thing that has helped is wearing earplugs. I had specially molded musician's earplugs made at a hearing place. It has helped. If your hearing is good enough that you can wear them without difficulty, it may be something worth considering. I had so many anxiety attacks from my echoing symptoms I had to do something.
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Dax

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Posts: 8
Reply with quote  #15 
What about standard musician earplugs like 

https://www.amazon.com/Etymotic-Fidelity-Earplugs-ETY-Plugs-Standard/dp/B0044DEESS

Compared to your custom molded ones, how do they compare?

edit: also, have you tried pink noise therapy?
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Alexandra

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Reply with quote  #16 
Quote:
Originally Posted by Dax
What about standard musician earplugs like 

https://www.amazon.com/Etymotic-Fidelity-Earplugs-ETY-Plugs-Standard/dp/B0044DEESS

Compared to your custom molded ones, how do they compare?


Here is the kind I have:

https://www.earplugstore.com/er915and25pr.html

Do you have any hearing solutions places? Many of them offer this and can make it custom fit.

I'm sure the ones you listed would work well too. Not for sure what the decibel reduction comparison is with those, but any reduction should help you cope better.
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Naelyon

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Reply with quote  #17 
damn am I happy to have found this page, I just got back today from the hospital because I had some test done. I have been struggling with what you call FIHD since I was 12 or something like that. My long term memory isn't great when it comes to thing like that.

Anyway, even though I repeatedly told them it was neither a constant ringing or buzzing but more like a blown out speaker, or a scratching noise in my ear that only occured when I'd been exposed to loud high pitched noises and went hand in hand with external noise, in the end it was diagnosed as early stage tinnitus, which I didn't even consider for a half a second before deciding it was wrong.

So it's nice to actually know I'm not the only person in the world with this kind of messed up ears, but part of a group of people with messed up ears instead.

To answer your questions though:

1. The only person in my family that I know has heariong problem is my grandfather, but he has been working with motorcycles and cars for his whole life so I'm 99% sure that's just a case of hearing problems caused by years of daily exposure to loud noises.

2. I experience little no discomfort when taking of in a plane or landing, and there are no extra problems that are caused by the pressure change.

3. I have FIHD in my left ear and the only odd thing about my right ear is that I frequently feel vibrations in the ear while hearing sound with lower frequencies. Also, my range of hearing is better with my left ear.

4. Yes, as I said, I've been diagnosed with early stage tinnitus just today.

5. Nope, I wouldn't be researxhing the problem if I had :').

6. No

7. Not frequent, but it happens every now and then.

8. Yes.

9. Yes, and if I blow even a little to hard when poppiing my ears, it is immediately followed by darkened vision, dizziness, pain, and a high-pitched ringing.

10. I used to play the drums in a room with a lot of echo and no ear protection, because I'm an idiot, and have slightly more than average hearing damage in my left ear between 400 and 800 hz.

11. Not that I know of.

Hope this still helps you.
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chucksters96

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Posts: 3
Reply with quote  #18 
I have your symptoms, OP. We have the same condition. How much do you drink? I feel my symptoms are worse after drinking, SOOOoooo.... I wonder if this could be an inflammatory reaction. Do you have any food allergies? I am tall and thin. I have TMJ on the same side as my distortion. I've seen two ENT's and two audiologists. I have tried hearing aids, wax removal, pink noise therapy, slapping myself silly.... all to no avail. The audiologists do not believe I have hyperacusis, but that my brain is interpreting in strange ways a legitimate discrepancy between ears.

I have manageable (with pills) anxiety, OCD, neurosis....

You mentioned "Dislocation and loosening of the bones of the middle ear" which to me is an interesting idea. There are connective tissue disorders (such as Marfan Syndrome) that MAY (??) contribute to this. All of your theories sound plausible. Good thread! Thanks!

BTW... I posted on another forum thinking I was replying to this thread. Oops.

SURVEY:

1. Do you have a family history of ear disorders? My dad has Myasthenia Gravis which produced temporary hyperaccusis symptoms.

2. Do you have symptoms of any kind in the ear during pressure changes besides the usual popping in airplanes? When do they occur? My ears pop more than what's normal. I can't blow my nose without putting my head between my legs (!)

3. Do you experience FIHD in one or both ears? Any other symptoms in your healthy ear? Left ear only. Right ear experiences intermittent and only occasional fluttering. 

4. Has a doctor diagnosed you with anything? Nerve damage, hearing loss, neurological disorder 

5. Have you found a cure for FIHD? No.

6. Have you ever experienced traumatic injury to the affected ear? Hammering steel without ear protection. Concerts. Recording music.

7. Do you experience frequent uncontrolled muscle spasms? No.

8. Do you experience migraines? Rarely.

9. Do you feel that your eardrums are unusually easy to click or pop? Do they feel weak? Yes.

10. Have you been exposed to excessively loud noise for prolonged periods? Excessive? Maybe not.

11. Do you have an anxiety disorder? Which? Yes. OCD, generalized anxiety, social anxiety
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Jenny51

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Posts: 1
Reply with quote  #19 
Hi. Two days ago I woke up totally deaf. Before that I was deaf in one ear, but just before had shocking tinnitus in both ears. Went to doc and he sent me for hearing test and had lost most of my hearing in good ear overnight. Now all I can hear is constant ringing and when I hear loud sounds it sounds like a distorted speaker or shed doors banging, yes I know it sounds crazy. They reckon I have a viral infection but I'm not so sure. Anyone else ever had this please ???? It's horrible
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Ghirin11

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Posts: 17
Reply with quote  #20 
1. Do you have a family history of ear disorders? My family has a history of Osteogenesis Imperfecta (brittle bones).  It effects the connective tissue as well.  It is due to defective collegen.   Many folks that have this condition lose their hearing at various stages of life depending on the Type they have. I lost some hearing when I got hyperacusis in 10-16.   I may have been losing it slowly prior to that but didn't notice it. 

2. Do you have symptoms of any kind in the ear during pressure changes besides the usual popping in airplanes? When do they occur? Yes, I can get pressure changes from hills, elevators, the weather and planes.  My ear drum feels fuller and like the drum may pop.

3. Do you experience FIHD in one or both ears? Any other symptoms in your healthy ear? My left ear. My right ear experiences some slight pressure at various times.

4. Has a doctor diagnosed you with anything? Yes, a skull surgeon at Mass Eye and Ear did a CT scan to rule out Superior Semi Circular Canal Dehescence.  She said I had thinning of the semi circular canal but she didn't believe it was SSCC.   I later found she wrote on her report "Hyperacusis."  She never mentioned it to me.  Before the onset of this terrible condition I was diagnosed with Benign Positioning Vertigo.   I went to her because I had a spinning feeling of vertigo when I rolled over in bed.  She did a head maneuver and it went away.  That was prior to the onset of the broken speaker issues.   I also have vertebraes in my neck (OI related) that are twisted (C-1 & C-2) and losing the cushions between the vertabraes.  I have done acupuncture, massage,  botox, chiropractic and physical therapy.  I have been to every doctor imaginable.  My case is a bit more complicated due to the Osteogenesis Imperfecta.  Actually because my density decreases with age I could definitely have something going on with the tiny bones in my ears.   Unfortunately, not even the ear doctor on the board of directors for OI had an answer.   He told me to wear ear plugs.   Really?  He truly didn't understand  the life altering issues I was dealing with.

5. Have you found a cure for FIHD? I have used a sound generator for the past 17 months and found to get about 25% improvement. 

6. Have you ever experienced traumatic injury to the affected ear? A small event.  I went to a play and sat right in front of the speakers in August 2016.  This condition worsened in Oct. 2016.

7. Do you experience frequent uncontrolled muscle spasms?  I really don't know if you would call it a spasm.   It feels like pressure to me.  As I said, feels like the eardrum could pop and I am uncomfortable speaking as it causes a vibration in my head and fatigues me.

8. Do you experience migraines? I have read that migraines do not necessarily include a headache and I have days where I could sleep all day, my eyes are sensitive to light and I am more sensitive to sound.  Could this be Migraines?? 

9. Do you feel that your eardrums are unusually easy to click or pop? Do they feel weak? NO to both

10. Have you been exposed to excessively loud noise for prolonged periods? No.

11. Do you have an anxiety disorder? Which? Yes. Generalized anxiety disorder and PTSD.

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Mona Ghirin
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Trashboat

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Reply with quote  #21 
Thanks for all the contribution everyone!

Please feel free to message me on the site as well.

The problem in my right (previously good) ear has gotten worse, and it is basically a slightly better version of the left ear now. Having OCD doesn't help and I've been panicking a lot as well.

The superior canal dehiscence theory is interesting. I wonder if that could have something to do with it.
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Kstar16

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Reply with quote  #22 
Hi I have most of the symptoms you have listed. Since I was born I have had ear infections finally went I turned 12 I had surgery on my left eardrum to close the hole in my eardrum. After the surgery I realized I could hear a lot better but if I hear really loud sounds it sounds like a broken speaker in my head also. My doctor said it maybe because I have Difficulty in pressure regulation, maybe arising from a defect in the Eustachian tube which is what you think may be the issue I’m now 21 and am still having the broken speaker noise in my ear the only difference is if it’s to loud it actually hurts really bad. My dad many years ago had the exact same surgery as me do to rupturing his eardrum and has the same broken speaker sound as me just not as badly. Also to answer your question my ears pop every time I’m in a plane or I’m just driving down the road and I don’t even leave anywhere near mountains.
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Trashboat

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Reply with quote  #23 
Hey guys,

Just checking back in. I'm currently looking into the Dehiscience theory, and I will report back any findings.
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billiejoe87

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Reply with quote  #24 
Can I just confirm guys, is this broken speaker sound like a crackling or static noise in which you can feel something tense up in your ear and the sound in that ear cuts out while it's happening?

If so, I've had it in my right ear on and off for about a decade, and it's just started more in my left ear as well. I have grommets in both ears and it still happens, but I'm still almost certain it's pressure related somehow. It happens with loud noise and also a lot when I am talking.

My issue is how full my ears feel when they this is at it's worse. For what it's worth, the ENT said I have a thinning of the bone on both sides and there a borderline Superior Dehiscience. They did not want to operate though. Wonder if this frustrating symptom is somehow related.

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Dax

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Reply with quote  #25 
A crackling noise sounds about right. It's as if the sound is just... broken. Like a broken speaker -- it's just not natural, not normal. 

However I don't feel pressure or something of the sort all that much. It's just this noise that supersedes everything when it's the right frequency. 

I like to explain it this way to people, since that's how I live it:

You know you love bass right? (they typically answer yes)

Well, for me, bass is actually very high-pitched, simultaneously to being very low-pitched. It's a dual sound for me, as the bass sounds provoke this high-pitched, broken speaker, crackling sound in my ears in response to it, immediately, always.

I miss the true sound of bass. Purely low-pitched, booming, thrumming. Now I have this nonsense high-pitched sound that accompanies it, all the time.

Hope that helps.
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ellieruthless

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Reply with quote  #26 
Hey guys. I've had the same symptoms y'all have listed for maybe the last 4 years. But I've finally gotten sick of it and I'd like to join in on figuring it out.
1. Do you have a family history of ear disorders? No

2. Do you have symptoms of any kind in the ear during pressure changes besides the usual popping in airplanes? When do they occur? I honestly don't notice anything during pressure changes on airplanes. However this summer, I went snorkeling and trying to equalize pressure when I would dive down was extremely painful.

3. Do you experience FIHD in one or both ears? Any other symptoms in your healthy ear? My right ear only. Left ear seems totally fine.

4. Has a doctor diagnosed you with anything? I got my hearing tested a couple years back. They said my hearing was totally fine. At one point they assumed the crackling I was describing was related to TMJD. Since then I've gotten a night guard and my jaw has returned back to normal, but my ear still has that broken speaker sound.

5. Have you found a cure for FIHD? No. I agree with the coping mechanism of ignoring it. When I have a lot going on in my life I don't even notice it. As soon as things calm down it's all I can think about and it's very frustrating. Also, in times where I can't get out of the noise, if I plug my 'bad' ear for a couple seconds and release, it seems to go back to normal for about 10 seconds... then goes right back to crackling.

6. Have you ever experienced traumatic injury to the affected ear? Nothing I know of

7. Do you experience frequent uncontrolled muscle spasms? No

8. Do you experience migraines? No

9. Do you feel that your eardrums are unusually easy to click or pop? Do they feel weak? No

10. Have you been exposed to excessively loud noise for prolonged periods? No

11. Do you have an anxiety disorder? Which? No

Just to add some background:
I find that the crackling is at its worst when I'm driving on the interstate and listening to music. I have to completely turn the music off sometimes. Also, it's so much worse when I'm talking in a semi-loud situation. I also used to love to sing, but often get frustrated because it bothers my ear. It's similar to the feeling of talking when you have a cold; you can hear yourself because you're all plugged up, and you're kind of like "ew I sound like that??" but you realize it probably sounds worse than it actually is. If I plug my ear with my finger for a couple seconds and then release, it seems to completely go away for a few seconds, but then it's back to crackling and feeling cloudy. I worry that sound that triggers it might be affecting my hearing long-term, but I'm not sure how to even test that theory. It's been bothering me a lot more lately, but it might just be because I have time to worry about it. I'm going to try and see a doctor about it soon. I'll let you know if anything comes of it. 
Thanks for starting this thread. Hopefully we can figure out what it is.


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billiejoe87

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Reply with quote  #27 
I really think people are describing two different things with this "broken speaker sound". It will be helpful if people delve further into the actual experience they have.

All over the internet some people refer to the "broken speaker sound" as a similar sensation to what I get, where you feel something tense up in the ear particularly during loud noises or talking, and then the sound in that ear is replaced by like a crackling, static like noise. During this sensation you can actually feel a muscle or something else spasming while this is happening.

The other "broken speaker sound" some people describe is an additional noise on top of normal sounds. Ie. A high pitch noise or ringing on top of bass sounds etc.

We really need to work out who experiences what with their "Broken Speaker Sound" before we can work out what treatments may or may not work.

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ellieruthless

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Reply with quote  #28 
The description of what you get is exactly what mine is like. I had always just described it as “crackling” until I found all these forums and heard the broken speaker reference. I’ve never had an issue with ringing. But I definitely get the muscles tensing up feeling.
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chucksters96

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Reply with quote  #29 
Following up... A neurologist has diagnosed me with Ménière's disease. The "broken speaker" effect is, in my case, a form of tinnitus mixed with unilateral hearing loss and there's no treatment available. The broken speaker effect was present before any hearing loss was detected. Hope this helps somebody.
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billiejoe87

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Reply with quote  #30 
Very interesting Chuckstarters96. Do you get the sensation when listening to louder sounds or your own voice like your ear(s) cut out and feel a tense up of the ear with a static or crunching type noise? What does your's sound like?

I am in the process of probably being diagnosed with menieres disease by the top expert in Australia at the moment. Had a recent exacerbation of this problem right as Spring started here, however this time I am getting the dizziness as well. I have no typical menieres hearing loss at this time.

This issue could very well be a form of hydrops pressure in the ear(s).

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TallDude

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Reply with quote  #31 
How do you describe a "typical menieres hearing loss"?
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chucksters96

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Reply with quote  #32 
I think he's saying that one-sided hearing loss is typical in Meniere's disease.

Yeah, billiejoe87... your description sounds about right. Sound distorts in certain freq ranges...  crunchy. If I hold a phone to that ear, the voice on the other end sounds almost robotic. Headphones sound different in each ear.

Here in the States, an audiologist can't diagnose Meniere's which I found out the long way... but they did refer me to a neurologist who subjected me to a day of tests (spinning chairs, electrical impulses, water injection). In my case, there was enough data for a diagnosis, but he left open the off-chance that some other condition (e.g. labrynthistis) is mimicking the symptoms.

Anyway... . Good luck with your appointments. Looking forward to a follow-up.
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Trashboat

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Reply with quote  #33 
To clear some things up, what I am describing is a crackling sound akin to a blown-out speaker that accompanies certain frequencies of sound, especially at a higher volume and pitch. There is no hearing loss, unless you consider the additional sound being produced masking the true external source. I do not think this is menier's disease, or cochlear hydrops. I am currently scheduled to see a specialist on the possibility of it being a presentation of SCDS. I will report back if I find anything that can help.
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johnr

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Reply with quote  #34 
Don't know if this thread is still active ... but it's the closest match to the symptoms I have so I thought I'd contribute my two cents worth.  First, the answers to Trashboat's questions, and then some further comments below.

1. Do you have a family history of ear disorders? No.
2. Do you have symptoms of any kind in the ear during pressure changes besides the usual popping in airplanes? No.
3. Do you experience FIHD in one or both ears? Right ear only.
4. Has a doctor diagnosed you with anything? No, other than age-related hearing loss (I'm 62).
5. Have you found a cure for FIHD? No.
6. Have you ever experienced traumatic injury to the affected ear? No injury, but trauma from a loud noise (details below).
7. Do you experience frequent uncontrolled muscle spasms? No.
8. Do you experience migraines? No.
9. Do you feel that your eardrums are unusually easy to click or pop? No.
10. Have you been exposed to excessively loud noise for prolonged periods? No.
11. Do you have an anxiety disorder? No.

The symptoms that I have are that frequencies between around 500 and 2000 Hz sound exactly like audio clipping.  As an electrical engineer, I'm quite familiar with the concept, and when my symptoms started I was immediately thought of that as the descriptions.  You can find a couple of Youtube videos demonstrating the phenomenon here, here, and here.  These examples are almost exactly what I hear in my right ear.

I also know the instant the symptoms started:  I was in an auto accident where the air bags deployed.  They are LOUD!  (They also smell really bad and make a mess!)  They symptoms started right then: I recall standing by the road after the accident and noticing that the traffic noise passing by had this weird, distorted sound.  Apparently hearing problem after airbag deployment is fairly common.  The accident was about 20 months ago, and the symptoms haven't changed during that time.

I've been to audiologists and ENTs about this issue, but none of them have suggested a diagnosis other than maybe hyperacusis nor have they suggested any practical treatment.  My ENT commented that hearing aids for my normal age-related hearing loss would probably make the problem worse.

Personally, I'm not convinced that what I have is exactly hyperacusis. The sounds that bother me don't cause pain or other discomfort other than being distorted.  The symptoms are also not "triggered": they happen all the time with sounds within the frequency range and above a certain level.  I don't experience fluttering, spasms, or any of the other inner-ear muscle problems.  I also don't have any symptoms of tinnitus.

Currently, the things that bother are thing like: broad-spectrum noise (such as highway traffic noise). loud restaurants (I'm functionally deaf in those situations since I can't pick out even close conversations from the noise), and loud music (such as at a concert).  I've learned to live with the noise from the sound of my own voice (I bothered me a lot at first).

I'm not entirely convinced that there is a mechanical problem that causes the symptoms, but I haven't ruled it out.  However, I highly reluctant to let someone cut into my ear to try to fix the problem.  I'm more inclined to think it's a sound-processing problem in my brain.  I'm going to try a regimen of pink noise to see if that makes an improvement, but I'm not holding my breath.

Honestly, I'm not too upset with this problem because of what followed after it:  After a few months of living with the problem and seeing no improvement, I went to an well-respected ENT.  Because he wanted to be through, he did a full examination of my nose and throat (the "NT" part of "ENT") and noticed that I had nodules on my thyroid.  Long story short, I had state 3 thyroid cancer and so have been through surgery, radioactive iodine, and thyroid hormone replacement since then.  Had I not had the accident, and the hearing problem, the cancer might not have been found until it was much worse.  Or, I was dead.  So the hearing distortion seems like a modest price to pay for continuing to live longer (the cancer I had has a 93% 5-year survival rate, so I'm pretty optimistic).

Anyway, there you go for what it's worth.

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