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ProfNITSUD

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Posts: 19
Reply with quote  #1 
Hi guys, I've posted here a few times before, but have mostly found help within other's posts.

Let me start by saying I have had hyperacusis for 3 years now. I got it from a series of concerts when I was 18. It has been very bad at times and it has been almost nonexistent at times as well. I did / do a type of TRT called Neuromonics from a tinnitus treatment center here in Denver, Colorado. It had actually helped for a bit but as you all know hyperacusis comes and goes at times. Over the past 3 years my LDLs have fluctuated from 40dB to 100dB. They are at 50dB last I checked a week ago.

But to get the issue i am experiencing right now is something very different, which I have never seen talked about here and can't conclude what it is I am experiencing from anywhere else on the internet.

I will try my very best to explain it.

Sounds are causing a very strange sensations in my ears. Some sounds will cause my ears to have pressure and some sounds will cause my ears to feel like they are filtering the sound to only let parts of it in, leaving me with hearing a kind of broken radio sound, but i feel the pressure of the noise in my ears. This does not happen equally in both ears, each ear responds independently to sounds.

Some sounds will sound differently then they are supposed to, and I feel like I am getting a filtered version of real sounds.

Along with this, I CAN'T HEAR SOME SOUNDS anymore all-together, but I can still feel the pressure in my ear as if they were there. This is very apparent in songs I know well and can anticipate the sounds that I should be hearing. I either feel a pressure in my head and cannot hear that specific tone/sound or it has a different sound that it should.

I also can get dizzy from certain sounds and feel off balance when they come on.

Listening to a song feels like torture as the various instrumentation causes all kinds of different sensations in my ears/head.

Also it does not matter the volume, this can happen at loud volumes or soft ones. If i try listening to a song, I will experience all this at any volume.

This is truly scaring me to death. :'( In my 3 years of hyperacusis, I have not experienced this and don't know what is going on. I am so depressed and have no clue whats happening to me. Its like my brain is broken. I feel like I am going deaf.

Thank you for reading and your support.
Dustin
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briann

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Posts: 141
Reply with quote  #2 
Hi Dustin,

It may be good to discuss with different doctors if the ones you have seen don't have an answer. Someone might have an idea of how to approach this.

What caused your LDLs to drop back to 50dB? When did that happen?

Are your hearing sensitivity tests and LDLs the same in both ears? Are there any frequencies that show hearing loss? I'm trying to get an idea of what is happening when you don't hear certain sounds. Can you give examples of sounds you cannot hear? Can you give examples of sounds that definitely sound different than they are supposed to? Is this always the case or only sometimes?

Is this pressure that you are sensing aural fullness similar to what is felt when changing altitude in a plane? Is this pressure slowly coming on and then leaving or is it rapid? What is the timescale for this sensation? Do your other symptoms only come when you sense pressure?

I am wondering if some of this may be TTTS related. Knowing a sound is about to come on could induce the sensation of fullness. The filtering could also be related to the abnormal contraction of the middle ear muscles but that shouldn't make sounds completely disappear. When you say broken radio, do you mean distortion or narrow frequency range? Anxiety is supposed to contribute to TTTS, so if things improve in relaxed conditions and with reduction of caffeine that may provide a clue. 

The dizziness is a common coinciding symptom of hyperacusis. The first place people tend to look with this symptom is with fluid related disorders like meniere's disease, endolymphatic hydrops, perilymph fistula, and Superior Canal Dehiscence. Generally there are other unusual symptoms if these disorders are the cause. I personally have felt a little unsteady from sound before but not so much dizzy. 

If you are worried it is a processing/brain issue, they have a speech in noise test to help check this but i'm not sure if this works with 50dB LDL. You can ask. Really i'd keep looking for a creative thinking doctor or audiologist if you have reached a dead end with the ones you've seen.

-Brian


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ProfNITSUD

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Posts: 19
Reply with quote  #3 
Hi Brian, thanks for the response.

My LDLs have slowly diminished in the last several months due to stress and high anxiety mostly, I believe.

Both ears have hyperacusis and are at about the same LDL. Last week I was also told not to have any hearing loss. So thats the one thinking helping me keep hope this is some kind of temporary malfunction.

After sitting with this for a few days, I've come to the conclusion it happens only with low frequency / low tone sounds as well as the "sss" sound.

It is very noticeable when someone speaks an "s" word. For the duration of that sound I feel a pressure and hear silence. And same with very many low frequency sounds, especially in music. For the duration of the sound, I cannot hear anything.
The pressure and silence are only present during the duration of that particular sound. So say, I cannot hear the beat of a whole song if it fits within that range of sounds I am not registering.

I also spent the last couple days reading up on these things you listed:
meniere's disease, endolymphatic hydrops, perilymph fistula, and Superior Canal Dehiscence.

It seems like it could be any one of these things, but this stuck out to me in particular:

"Low-frequency conductive hearing loss is present in many patients with SCDS and is explained by the dehiscence acting as a "third window." Vibrations entering the ear canal and middle ear are then abnormally diverted through the superior semicircular canal and up into the intracranial space where they become absorbed instead of being registered as sound in the hearing center, the cochlea."

From the Superior Canal Dehiscence wiki page. This seems to describe exactly what I am experiencing.

I am not sure what to do at this point, wait for change or talk to a doctor?
It just seems so strange and wildly unheard of.

Any ideas?

Thanks, Dustin
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briann

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Posts: 141
Reply with quote  #4 

Talking to a doctor is definitely the first thing you should do. Yes the symptoms seem uncommon but maybe a doctor can diagnose it.

The low frequency hearing loss for superior canal dehiscence is generally there all of the time. This condition can also cause involuntary eye movement. You can get a CT scan to check if this is the cause. It sounds like your hearing is normal in general but dynamically drops out. It is still good to ask a doctor about those conditions listed since you have those dizziness symptoms.

The middle ear muscles can create a sensation of pressure in the ear and also can filter sound. They do not (normally at least) cause a disconnection of sound altogether and I'm still not clear on what is causing the pressure in the head.

1. Did these symptoms show up when you took your LDLs? If so, maybe you could have them check with bone conduction and see if it comes up again. There are also bone conduction headphones you can buy if you want to try yourself with music. If the sound doesn't drop out, then it has something to do with the middle ear. If it does drop out, that still doesn't rule out the middle ear.
2. Does the pressure in the head and ears happen simultaneously or can it sometimes be one or the other?
3. Do you notice pressure in your head even when you are relaxed? I'm wondering if this is related to muscle tension.
4. Does your hearing completely drop out or is it just the low frequency or "sss" sound that drops out in those cases?
5. Would you describe your hyperacusis as pain hyperacusis, loudness hyperacusis, or both?
6. Have you taken any steps to reduce the stress/anxiety that you mentioned?

-Brian

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Johnloudb

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Posts: 1,951
Reply with quote  #5 
Hi Dustin,

Actually the symptoms you describe are quite common for people with both hyperacusis and misophonia.

It's common for people to have setbacks after mostly overcoming hyperacusis. Given what initially caused you hyperacusis - loud concert events - and the fact you recovered is a very good sign. Means your symptoms are unlikely due to neurological damage. 

Anyway, the sensory system works feedback ... not like we are hardwired in the brain. When you have had severe hyperacusis the lymbic system gets involved and can cause all kinds of wierd systems.

Sometimes just not getting enough sound exposure can cause setbacks. Ears need practice with sounds. Worrying about symptoms can cause things to go backwards as well.

 The symptoms you describe are csimilar to what I experienced with decreased sound tolerance. So doesn't have to be damage of any kind. Just too much gain in your sensory system. I have to keep working at exposure and using the ear devices, doing CBT. But my LDLs are pretty high now I suspect.

Neuromonics is not treatment for Hyperacusis. It is designed for tinnitus only. Even says so on their website. That doesn't keep some audiologists from using it for hyperacusis.

So, there is a lot you can learn to help yourself. I think the fact you did recover is a very good sign that you can make a full recovery. May take awhile but, you just have to keep at it. You may to do TRT and use the pink noise which can be helpful. 

Don't distress over your symptoms. Use sound enrichment. Do some reading here: http://www.tinnnitus.org

The are answers for you but most doctors (ENT's, Neurologists, ...) won't have answers as far as misophonia and hyperacusis are concerned. They can diagnose other conditions that cause sound sensitivity. 

don't know if you have any of these other conditions ... but you can always get checked out by other doctors, if you're concerned about it.
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ProfNITSUD

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Posts: 19
Reply with quote  #6 
Thanks again for getting back to me guys, the problems are still pretty consistant at this point, but I am trying my best to stay positive.

On the note of stress, I am diagnosed with pretty bad anxiety and depression and on top of it all I just got a new job and am taking a full load of courses in college...

It appears that sometimes sound comes and goes for my ears but there are still several sounds I haven't been able to truly hear for the last month so thats my biggest worry.

And Brian, my hearing does completely drop out when these sounds are present but only for the duration of the sound, otherwise my hearing is semi normal apart from the hyperacusis. Typically low tones are what "cuts" out. Also my hyperacusis would be described as both pain and loudness.

I am beginning to think this is mostly a hyperacusis thing, as it doesn't seem to fit with the wild dizziness spells of Meniere's disease and I can't imagine I'd have something like a superior canal dehiscence at my age. 

John, I like the way you described "too much gain" in my sensory system. Do you have any recommendations on how to minimize these thoughts? It's just so constant, it freaks me out causing more anxiety, winding up in a vicious cycle of loosing more and more hearing and my head full of pressure. I don't want this to become permanent.

And to understand completely, do you believe my brain is acting this way and canceling out noise, that I don't have hearing loss or anything like that? I want to know that this is just a phase... 

I never wear earplugs so a lack of noise exposure is not an issue imo.

And lastly, my audiologist had used Neuromonics for me for about a year and I think it worked well, seems all this stress is causing a toll on me. I go to Colorado Hearing and Tinnitus center in Denver, Colorado.

What kind of doctor would you suggest I seek out?

Thanks again guys, and apologies for the ramblings, just really want to know whats happening to me.
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Johnloudb

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Posts: 1,951
Reply with quote  #7 
Hi, You say your hearing drops out only around certain sounds? When you are around sounds you have aversion to other sounds can sound quieter or disapear. I had a big aversion to fan sounds and sometimes even quiet fans would drowned out quiet music in the background. How we respond to all sounds is different. Sounds can also sound distorted like talking on the phone. It is related to misophonia.

Everyone who has had bad hyperscusis also has misophonia. I know this can be difficult to understand, but it is what is.

You need to get your LDLs checked and find good TRT help in my opinion.

If you find you can tolerate some fairly loud sounds but quieter ones cause you adverse symptoms then that is also misophonia.

Anxiety over your symptoms just makes things worse ... I know it is hard to control but once you comes terms with your symptoms and understand they are nothing to be concerned about, then you can better deal with anxiety. Demystification of symptoms is a big part of TRT.
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briann

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Posts: 141
Reply with quote  #8 
Hi Dustin,

I would start with an ENT and see about ruling conditions that are known to cause hyperacusis like SSCD. Good point on the age but as far as I know it is not impossible for someone young to have SSCD. I agree it is unlikely but its best to rule out the stuff we do know about first if it doesn't worsen hyperacusis (Need to find out CT dB level though). An ENT or audiologist could help debug the issue if it is related to the middle ear. Bone conduction tests should be done if you can repeat the drop outs with normal air conduction tests. If not, I really do recommend trying bone conduction headphones. If it is not middle ear, then things get more tricky.

For the stress, anxiety, and depression, I recommend seeing a psychologist or someone who may have techniques in improving these conditions. They also may recommend medicinal options.

TRT is not covered by insurance and will not address this hearing dropout directly. TRT focuses on reducing stress related to sound and encouraging sound exposure. I may be reading this incorrectly, but it seems like your anxiety and stress is not rooted in sound and that you are not overprotecting. 

-Brian
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Johnloudb

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Posts: 1,951
Reply with quote  #9 
Dustin said: "John, I like the way you described "too much gain" in my sensory system. Do you have any recommendations on how to minimize these thoughts? It's just so constant, it freaks me out causing more anxiety, winding up in a vicious cycle of loosing more and more hearing and my head full of pressure. I don't want this to become permanent."

Dustin, You should get your hearing tested to check for hearing loss, but also get you LDLs checked to help diagnose your sensitivity problem.

Why would you think this permanent? Head fullness, ear fullness, distortion ... Unlikely any doctor will find anything or have any answers for you. When I experienced those symptoms and more, I got my answers from Johnathan Hazel. It's a limbic and autonomic nervous system response to something you are phobic or have aversion to. I was deaf in one ear for a two week period as I worked at desensization.

Fear and anxiety over my tinnitus, headaches, ear pain is what almost destroyed me, many years ago.

It is good to get checked out and rule out other problems, just don't expect ENTs or Neurologists to have answers for your sound sensitivity.

I thought things like "this could be permantent" or "What if I end up deaf with really loud ringing and headaches?" and so on ...

Best way to reduce anxiety is to start listen more to pleasant you can tolerate ... and put those negative thoughts aside. Use sound enrichment at night if you can. Keep getting out in the world ... Even if you have to use ear protection to do that at times.

I respect Briann's point of view, and agree about getting checked out. But I also see people resort to drugs a lot, and then those drugs cause there own side affects usually and it never solved people's sensitivity or even anxiety problems. Hazel calls drugs an avoidance strategy and only uses them in emergency cases.

It may help some short term, but then it can be hard to get off those. The real source of anxiety and phobias is fear about your symptoms and what you think it all means. Until you come terms with that, you'll have anxiety ...

Doing sound therapy, working at very gradual exposure, and facing these symptoms and thinking "it is okay" "not permant" ... Is how exposure desensization works .... Reduces sensory gain.
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ProfNITSUD

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Posts: 19
Reply with quote  #10 
Hi, guys thank you for the all the comments. They have been helpful so far.

I saw a new audiologist today. She tested my hearing, and it came back completely normal as well as checked my inner ear and said that my ear drum and fluids are working exactly how they should be. Still probably going to meet with an ENT just to check and rule out any physical things inside my hear and inner ear.

At this point I am starting to believe this is entirely psychological creating physiological effects. 

After living with this for several weeks now, its becoming pretty clear that theres very little fluctuation with the hearing dropping out. My hyperacusis changes on a daily basis, but the pressure and loss of hearing seems to stay relatively constant. Its hard for me to explain what these sound are exactly because it happens so intermittently. 

It seems to be most prominent when there are a lot of sounds at once (i.e music) like my brain is struggling to pick up and analyze all the sounds together so it just shuts it off. My ears are like creating a pressure to protect themselves from the sound. (Is what it feels like.)

I've looked into auditory processing disorder, which seems possible. It seems rather uncommon with adults, but I feel like this could be the closest thing to what I am experiencing. I don't know how that can be set on in adults though.

Really though, I want to believe this is a symptom of hyperacusis, it just feels so separate from it right now. Because even when my hyperacusis is rather low, the distortion and dropping out sounds, and fullness from sounds is still there. Its just very hard to distinguish since my LDLs are so low at the moment. 

At the moment I am trying to live a normal life, being around sound, working at noise exposure, I am doing everything I should be doing for hyperacusis and am hoping that this is a bizarre symptom of simply hyperacusis / misophonia that I am reacting to. My quality of life is just so incredibly low right now. I am finding it so hard to stay positive about anything. Its hard to work towards exposure when this is happening even at the lowest volume.

Dustin





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briann

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Posts: 141
Reply with quote  #11 
Hi Dustin,

You may want to ask a neurologist about the brain muting sound intermittently theory to see if that's even possible. Since the pressure is from the middle ear and it sounds like the dropouts happen at the same time as pressure, I think it's worth looking into the possibility that this is conductive hearing loss. Again, bone conduction headphones would be an interesting experiment.

http://www.amazon.com/gp/product/B00JO9XTSI/ref=pd_lpo_sbs_dp_ss_1?pf_rd_p=1944687662&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=B004147G08&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=0BNH977PP4Q9NEY6XQ13

Either way, processing and anxiety are likely factors. So working with a therapist is a good idea for the anxiety aspect. For the desensitization, what happens if you use an equalizer and try cutting out the high frequency and whatever other frequencies that bother you? If that helps, then you can gradually try to bring it back to a flat eq.

Brian
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briann

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Posts: 141
Reply with quote  #12 
I just came across this,

http://www.reddit.com/r/hearing/comments/3be5t8/perfect_hearing_but_cant_hear_people/
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