Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group sensitive hearing

With Auditory Processing Disorder - hearing is normalling normal. When there is lots of noises you may catch one word in 5. By the time you are asked a question, you can't answer because you didn't catch the question in the first place.

Words like Craig and Greg are the same word for me. Robertson, and Robinson are same words. Our and are the same.
I couldn't take foreign languages because the difference in the sounds of words just didn't come to me. I read, and read so I could see the difference in the spelling of the words. I also had a dictionary by my side to understand what the words meant.

Hyperacusis, is when noise causes you great anxiety. Going out in crowds, everyone talk all at the same time, is a big no-no. Ambulance, police, fire truck sirens send me into immediate panic attack. With noise all around I couldn't tell you where the sounds of sirens are coming from.

Most days I sit in a room, with little to no noise. If there is noise, I will not hear someone knock on my door.

There is an autoimmune disease of the inner ear. I have been trying for years to have a doctor test me for it. Like Cushings, Porphyria, Adrenal Fatigues, few doctors know little of these diseases and it is so hard to get a diagnoses.

I went to a teaching hospital to be tested for Auditory Processing Disorder and Hyperacusis. I was diagnosed with severe Auditory Processing disorder with Hyperacusis. Most regular Audilogist know very little about these hearing disorders. I even ran into an Audilogist who was going to cure by Hyperacusis by letting me listen to loud noises. I told him no thanks and walked out. He was going to charge me $2000, for this quackery.

Hope your not dealing with this.

Hugs
Gerri

hi magician,

that last statement you made, made me think of a time period that i went through when i lived back in maryland, back in the early 90s. we moved into a noisy apartment complex, noisy neighbors, thin floors and walls, could hear everything, would be woken in the early morning after only a few hours of sleep. then i'd get on teh noisy bus with the bus driver playing noisy music. every little sound seemed to agitate me. i wanted to pick up that boom box and smash it over the driver's head! good thing i didn't i guess! LOL! and then i developed the gastritis and was sick and tired and needed my rest and couldn't get it. sounds were driving me crazy, making me feel so sick.

and then we moved into a nice quiet house. still renting. but ah the peace and quiet. and my stomach starting feeling a bit better. and then others' noises didn't bother me so much. even the techno on the radio was bus was tolerable.

not saying you are going through the same thing where stress and anxiety are amplifying the effects of noise. but what you said did remind me of that experience.

Hi Gerry:

with Hyperacusis, do you experience pain with these sounds?

Do different frequencies bother you more than others?


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We worked on a documentary film called "Sound & Fury" about a family of deaf people, who were the first generation to be offered the option of giving their daughter a cochlear implant so that she, unlike them, would be able to hear.

The parents were against her having the procedure, one of their reasons was they felt it would be a terrible thing if she were to grow up and not be a part of their deaf culture, they didn't want her to lose that connection

Most people initially find this shocking, could not imagine why anyone who had a choice, would decide against hearing..to never experience music, rain falling on a window...

But as they told their story (speaking with sign language), and as we saw them communicate with each other, audiences began to understand their point of view better, and when the film was over, both sides of the debate learned from each other-

Ultimately, years later, after the film was completed, the parents changed their mind and Heather got her cochlear implant

Hi Dow


"with Hyperacusis, do you experience pain with these sounds?" Yes I experience extreeme pain at times. I have noticed, sirens will cause panic attacks, and bring me to tears. It's like someone stabbing something into my ears. I cannot function, during these attacks.

It seems every day I went to London Ontario, there is always a Crisis. Wish people there would learn how to drive. We witnessed a accident, we knew what was coming. She asked that they tone down the sirens, they didn't. As they didn't I went into a panic attack, she ran from the scene and got me into my truck, and helped me get my head set on.

In London I wear my head set when out on the streets. Even noises from a walk tunnel, will send me into panic attack.

Many people talking all at once, Automated telephone lines, people screaming, crying children, dog whistles (lol), scratching on chaulk boards,(list goes on and on), when I am stressed, when I am in lots of pain. All these things happening together, or separately can cause me get very upset, angry and sometimes even hit out. I have no control. I often in these cases when I know a panic attack is coming on I shut down, or run into another room, to get away from the situation. Sometimes I don't know I am - well into a panic attack, the stress is too much I have hit out. This scares me more than anything.

My trainer now just looks at my face, and realizes that I am in a bad situation, so she has kept me from most malls, especially now at Christmas.

I try hard to focus on Makaylah, when she acts up, I natually pull her aside. Didn't realize until now, that was what happened last night. It wasn't for her as it was for me. I went grocery shopping (stupid - stupid me) - there was so many people -a number of times - I would pull her aside - scratched her nose - she settled - even laid down - when I was able - we moved on. Puppy continues to help me in a lot of ways, even now at 26 weeks.

"Do different frequencies bother you more than others?" I could not ever where a hearing aid, as they make noise louder. I can tolerate, one on one conversation. More than one person communicating - most likely I will miss words - the conversation/answers from me then are always a comic of replys. My friends, sons, are always laughing at my comic replys, and I am not offended.

My audiologist at the time wanted me to tell the differencies in frequencies like high and low of music, I couldn't it all ran together into noise. Having my hearing tested, on a good day when I don't have an ear infection (I frequently get ear infections), I hear very well I can pick out one tone at at time. But the different tones of music run together, and all I hear is noise.

Hope I answered your questions. With Auditory Processing Disorder & Hyperacusis I tend to be flighty with my thoughts, but most times I will get to the answer you seek. Most times people don't have time to wait for me to answer.

Hugs
Gerri

I really don't know, Gerri. I am by nature an anxious person. But with sounds and crowds, I just want to run away. The louder it gets, the more anxious I become. Christmas is a trying time for music is always booming in every store and the crowds are more pushy and oh so rude. I can't handle the atmosphere and rarely go shopping at Christmas.

i don't blame you, i feel the same way about all those christmas shopping crowds. i do a lot of my gift shopping through the year, especially those summer arts and crafts festivals where i can get unique gifts. then most of the last minute gifts are done mail-order.

but i have found a way to shop off the beaten path at christmas time: everyone else seems to hit the malls and big shopping outlet complexes. i go to the little stores, isolated from other things, take back roads. currently my favorite is a little fair-trade co-op store with handmade items from around the world. its in a little shopping plaza, no crowds to speak of. even when i lived in maryland, not far from DC, i found one year that instead of hitting the annapolis mall, i went to annapolis itsself and to all the little shops. it was a cold raw rainy day, no one else wanted to be outside, had the place to myself essentially.

we do not go to the mall between thanksgiving and christmas. we've tried going early, but everyone else shops early so just can't get away from the crowds. i get flustered, its like information overload, or sensory overload or something.

Sorry I went off in a tangent again. Not likely the same

Hugs
Gerri

that is very very helpful to letting me understand what hyperacusis is all about, and what a challenge it is for you, thank you Gerri, for that explanation!

since sounds are actual physical vibrations, invisible waves that enter your ear, I am wondering if the pain occurs when the sound waves hit a trouble spot in your ear. The ear drum is like a little microphone, that physically vibrates to match the sounds that enter, certainly if you have an ongoing infection or some other kind of problem there, that could be part of why it hurts

I can understand why you would not want a hearing aid, that would amplify and increase the sound when you want to decrease it!

I could also see from what you say that any kind of in-ear ear plugs would be problematic as well, because even although they diminish the sound intensity, sitting directly in the ear, they would still vibrate and pass the vibrations on to the inner ear, ow!!

The head set that you wear when you go out, what type are they? Have you tried headphones that fit over the ear? Like the large kind that are used by workmen who are in constantly loud situations, like airport runways? Those are designed to leave a buffer of air between the cup of the earphone and the ear itself, so as to not pass on those vibrations, I wonder if that could help.

(an air gap is the only way to achieve true soundproofing, recording studios use that principle. They all have double-doors, with an air space between them, and the windows between the studio (where the musicians are) and the control room (where the engineer works) have two pieces of thick glass with an air buffer between them)

Probably not as useful would be some of the electronic technologies that are used for noise reduction, like the consumer headphones that have little microphones in the earcups and electronic circuitry that analyzes the incoming sound, making a "fingerprint" of it and does some trickery to sonically reverse that sound so that it doesn't reach the ear. It works somewhat well for constant steady noise, but sudden bursts, not so good!

I am SO glad that you now have Makaylah with you, thank you for answering my questions!


Dow

Hi Dow

"The head set that you wear when you go out, what type are they? Have you tried headphones that fit over the ear? Like the large kind that are used by workmen who are in constantly loud situations, like airport runways?"

I believe they are the type you describe - the signature on them are "Dale Earnhardt 3". They do help, and I take them when I am going away from home. Never know when there are going be sirens blairing.

Hugs
Gerri

Let's put it this way. Two days ago when I went with my aunt, there was NO parking in the entire shopping mall parking lot. It was jammed packed full. And the ignorance of the crowd. Never seen anything like it.

All this shop, shop, shop, shop, shop is way too much. I tell my family: do not give me any presents for Christmas or for my birthday. If they insist, I then say a single pair of socks is fine.