Advice Needed - Adjusting To Has With Severe Sound Sensitivity.

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[QUOTE="appleeater, post: 2469031, member: 70791"

This audiologist was at least polite but says my hearing loss over the last few years is what they expect from sensorineural hearing loss, though granted I'm young for my hearing to be declining.
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I don't think there is any age limit for sensorineural hearing loss. it may happen at any age, any time, and at any speed at any given time.
With this type of hearing loss there is no "young for the hearing to be declining".
It simply to much diverse.
My brother lost his entire hearing in a matter of a year at age of 7 from s-n hearing loss.
while I was losing mine slowly over my entire life, still am.
It's just that some lose sooner, some later - there is no reason nor rhythm with sensorineural HL.
If I was you, I would fire her and seek someone with better knowledge about the matter

Fuzzy
 
That is quite true, but I believe she was referring to the fact that (statistically) most people see a decline in hearing as they age.

I was asking her about why she wasn't concerned that my hearing loss had been stable for so long and had now started to decline because my old hospital had said they would investigate. (Though I do understand that in most cases no cause would be found.)

I am contemplating asking to go back to my old hospital, though. I can't control who I see there and aren't even meant to book appointments (instead I should drop in for hearing aid adjustments every 6 months and have my hearing checked every 3 years) but I have autism and waiting around is difficult for me.

That combined with the fact I know their technology is out of date (she was even shocked that I have 4 programmes on my aids) makes me tetchy. But maybe I'm being oversensitive. After all, my hearing aids aren't bad. I'd like room for a music setting and for them to be bluetooth/wireless but they're okay hearing aids.
 
That is quite true, but I believe she was referring to the fact that (statistically) most people see a decline in hearing as they age.

I but we are not "most people" :)
I agree statistically everyone's hearing decline with age, it's normal "wear and tear".
but sensorineural is a different beast and not necessarily losing hearing faster or at a different time is something
unusual, abnormal or "special".

Regardless, I also agree with you that it is necessary to investigate why are you losing hearing all of sudden faster now.
in this you are absolutely right.
Even if they do not find the cause- at least you will ensure you didn't neglect anything, you didn't lost a chance to save what could have been saved. and that's important, too.
Please, if you can't go someplace better, then do go to your old hospital and insist on having this investigated.
If you think you are unable to go thru this by yourself,
please find via google what governmental department, program would provide a health advocate - or any advocate?- for you
and use that from now on.

You deserve top of the line technology. that being said, if I wanted to I could have many settings on my Phonak HAS
but I hardly use more than two - 1. for general use, and 2. for a reduced background.
So, if you are happy with just 4, I suppose it's perfectly fine.
What matters, though, is that the HA have to have the comfortable "hearing range" for you, they do not whistle, hummm, screech, etc
nor are too quiet or too loud.
And they are comfortable for daily wear. and you like them aesthetically, too. mine are black :)

So, go for it :)
ps:
I hope you won't have to wait too long while dealing with it!

Fuzzy
 
Audiofuzzy said:
Appleeater, OT, do you know this book?:
http://www.amazon.com/House-Rules-Novel-Jodi-Picoult/dp/0743296443

if yes, what do you think of it?

Fuzzy
Click to expand...

I haven't read it I'm afraid. My mum loves Jodie Picoult, so I've read lots of her books. A couple I thought were good, but overwhelmingly I find the less you know about the topic she's writing ably the more enjoyable the book is.

I read one other book of hers with an autistic character, Keeping Faith, where she wrote about a child who could 'heal' people spiritually. One such healing was of an autistic character who, for a couple of minutes, became entirely normal and was able to tell his twin that he loved him.

Though my autism is mild, I have a cousin with severe autism and have worked with a variety of severely autistic children. It would be extremely rare for an autistic adult to show no sign of loving at all - as long as you're not expecting it to look typical.

Keeping Faith, in my opinion, only emphasised the negative aspects of autism and not the joy and fun. (My nephew, for example has no language, can be violent, lives off routines and isn't toilet trained... But he's very much loved, affectionate and funny.)

Based off that, I would say there's a high likelihood of the book being full of stereotypes.

The reviews of House Rules seem to follow a similar pattern - people new to autism are fond of it, plus the odd overstressed parent with the vast majority of people who have contact with people with ASD or have ASD saying that she's shoved every possible symptom in without giving him a personality.


Apparently it also considers the debunked vaccines-cause--autism as a viable cause.
 
I think the BBC's new programme (2/6 episodes released so far) called 'The A Word' does a better job of portraying both the difficulties of parents with a special needs child (in this just case diagnosed). They are very much struggling with knowing their son has autism but Joe himself still has a personality outside of his diagnosis.

I'm hopeful they will come to be more accepting of his diagnosis as the programme goes on.
 
I might be out of line, since I don't know the subject at all, except what I happen upon on documentaries and books like House Rules, or Mark Haddon's "The Curious ......" etc, but something makes me think since autism is such a wide spectrum
(and despite some progress achieved, still so terra incognita) that maybe your cousin was simply never
treated by someone as talented as a guy who treated a girl I saw once in a docu on PBS (I think).
She was like your cousin - violent, delayed and no language. Her parents somehow got in touch with a guy who worked at Dolphin Therapy Centre - I don't remeber where, though.
Dolphins weren't even as important as they were being used like a treat is for a dog. What was clear to me the guy was genius
as psychotherapist. A GENIUS.
SO talented as a teacher and healer.
Using dolphins, he managed to simply train the girl to get the behaviour he wanted from her. and since she yearned to swim with the dolphin, to touch the dolphin, she started to talk and obey simple commands. and after a while she absorbed a lot of positive behaviour!
And this was girl who every other professional in the field declared as "unreachable".
What struck me most he had oodles of patience, was very, very calm and wouldn't take no for an answer (but that doesn't mean
he was a bully, no, he took the time needed).
It was obvious, at least to me, everything can be achieved as long as it is with a special person.
For comparison, such special person to deal with dogs is Cesar Millan. Or, Ann Sullivan was, the Helen Keller teacher.
But ... - how many Cesars Millan or Anns Sullivan are out there, right?
Likewise, how many this talented psychotherapist such as this guy exist, eh? it is easy to learn something by work
and copy-apply 'the learned' into practice, but to do it with instinct, with "feeling the blues" (if you get my drift)- for this
you need the gift.
and that's why I suspect your cousin perhaps could have been better,
but, there simply is not enough such intuitive, gifted specialist out there so he simply wasn't lucky to happen upon such.
what do you think?

Fuzzy
 
appleeater said:
I think the BBC's new programme (2/6 episodes released so far) called 'The A Word' does a better job of portraying both the difficulties of parents with a special needs child (in this just case diagnosed). They are very much struggling with knowing their son has autism but Joe himself still has a personality outside of his diagnosis.

I'm hopeful they will come to be more accepting of his diagnosis as the programme goes on.
Click to expand...
I'll be sure to look out for this, but I am in Canada and not everything BBC offers our broadcasting corpo buys from UK, sadly.
 
Audiofuzzy said:
I might be out of line, since I don't know the subject at all, except what I happen upon on documentaries and books like House Rules, or Mark Haddon's "The Curious ......" etc, but something makes me think since autism is such a wide spectrum
(and despite some progress achieved, still so terra incognita) that maybe your cousin was simply never
treated by someone as talented as a guy who treated a girl I saw once in a docu on PBS (I think).
She was like your cousin - violent, delayed and no language. Her parents somehow got in touch with a guy who worked at Dolphin Therapy Centre - I don't remeber where, though.
Dolphins weren't even as important as they were being used like a treat is for a dog. What was clear to me the guy was genius
as psychotherapist. A GENIUS.
SO talented as a teacher and healer.
Using dolphins, he managed to simply train the girl to get the behaviour he wanted from her. and since she yearned to swim with the dolphin, to touch the dolphin, she started to talk and obey simple commands. and after a while she absorbed a lot of positive behaviour!
And this was girl who every other professional in the field declared as "unreachable".
What struck me most he had oodles of patience, was very, very calm and wouldn't take no for an answer (but that doesn't mean
he was a bully, no, he took the time needed).
It was obvious, at least to me, everything can be achieved as long as it is with a special person.
For comparison, such special person to deal with dogs is Cesar Millan. Or, Ann Sullivan was, the Helen Keller teacher.
But ... - how many Cesars Millan or Anns Sullivan are out there, right?
Likewise, how many this talented psychotherapist such as this guy exist, eh? it is easy to learn something by work
and copy-apply 'the learned' into practice, but to do it with instinct, with "feeling the blues" (if you get my drift)- for this
you need the gift.
and that's why I suspect your cousin perhaps could have been better,
but, there simply is not enough such intuitive, gifted specialist out there so he simply wasn't lucky to happen upon such.
what do you think?

Fuzzy
Click to expand...

Tbh, the dolphin as a reward for dog training is exactly what Applied Behavioural Analysis is - and it's the most researched treatment for ASD.

It's the easiest of the treatments to research because it has very clear goals. I think in some instances it can be useful but, especially in the USA, it's often prescribed for 35-40 hours a week for 3 year olds. People don't even train their dogs for that long!

There are some newer changes some people use (less pure ABA) which are a bit more forgiving, but of those people who have learnt to write many talk about it as quite a traumatic experience and describe PTSD. ABA often involves stopping self-stimulation (hand flapping, etc) which is an emotional regulation technique and to force it to stop can cause distress/pain.

They also talk about how frustrating it is to be forced to do something and then only be given what they want for 1 minute as a reward. Some parents are encouraged to follow this all the time - imagine everything you enjoy doing being forced into 1 minute segments.

There are other ways of teaching children with severe autism, though it's harder to research them. I've worked using these techniques and would vouch for them.

In many ways, ABA is quite similar to the forced oralism techniques employed in the 60s- for some children it will teach them to speak but at what cost? Even now in the UK we see deaf children attaining much less at school than their hearing peers.

Before anyone jumps on the 'Deafness is a variation and autism is a disability', you might be interested to hear that some people with ASD view themselves as neurodiverse not disabled, but would describe deafness as a disability. Though some people with severe autism want a cure, others simply want to be accepted for who they are.

Personally, I think that for me being HoH and autistic is both diversity and a disability.

Regarding my nephew, his family don't follow a strict treatment plan (though they do use a variety of techniques). He's only 5 at the moment but also has GDD and is developmentally about 1. That said, he does understand a lot. He can communicate - the problem is that other people don't know how to communicate with him.

He can be violent, but he's also a very loving little boy. We play using his interests and gradually stretch his interaction - and at this point he does initiate interaction. I'm sure someone could take a 5 minute video and show him as stuck in his own world, but that would be a false representation. I'm not very good at describing things like this - but I promise you he is interested and clued in to the people around him.

There's other aspects of autism - such a sensory sensitivities. Now, I would love for someone to take those away because they cause much difficulty, however no amount of ABA is going to do it.

Oh, and thanks for the thoughts about getting it investigated. I think I will. :)
 
Has your audiologist suggested ear molds with no vent and then a hearing aid with as many channels as possible? Full ear molds with no vent would block outside noises more, and then you would get more sound from the hearing aids. If you had a hearing aid with 16 or so channels to adjust, the ones that caused you pain could be turned way down, and the others left up. With more channels you would have a better chance of cutting out the painful noises, and then the non vented ear molds would block out normal noises (not going through your hearing aids). Of course more channels means more money :(

I have a set of non vented ear molds that I use with my hearing aids when I go swimming, and they block out way more outside noise than my vented ones. I have to have a separate program on my hearing aids for them since they sound so different when compared to my vented molds.

This is all just a guess though, I'm not an Audiologist (though I play one at home thanks to my ConnexxLink :))
 
I actually did consider asking for full moulds but didn't when I was there, whoops. I'm not sure how much of a difference no vent would make as I currently have a 0.5mm vent. I do have only a short length into the canal for comfort and I've definitely had more occlusion on previous moulds.

Once my important university work is done, I will go back and ask about it. I might need to wait until/if I get referred back to my previous audiology department as the current one hasn't upgraded from my hearing aids (NHS) and I'm currently using all 4 channels, I guess I could remove M/T though.

I wish the software for mine was readily available but the NHS control it pretty tightly. :(

Thanks for your advice.
 
Have you had objective measures of your hearing loss? An ABR, OAEs, acoustic reflex testing? Your hearing loss is so mild that it isn't surprising that amplification sounds loud but when you say sounds without hearing aids are too loud, that points to a central (non ear or cochlear) problem or even a psychological issue.
Someone suggested molds without vents but I think the occlusion effect would drive you crazy within a day. And as for channels, I think you jab be confusing programs for channels.
Channels are specific frequency bands that can be adjusted. Most hearing aids these days have many more than 4.
 
I don't know whether I have or haven't. I had lots of testing when I was 7/8 but I don't recall what.

I think I had hearing aids that were too occuled before, when I first got hearing aids but I haven't had it since. At the moment I have a 0.5mm vent but the part that goes into the ear is shorter than usual so it seems to cancel it out.

And, yes - I did confuse programs for channels. I have 6 channels. I think that's pretty standard for NHS hearing aids. I'm going with my grandmother to a private audiologist because my grandmother doesn't want the hassle of the NHS drop in or a waiting list. She's got a very unusual shaped ear bowl (following a surgery) and so wants to know what her options are. I might see what's available while I'm there but feel it's probably a waste for me to have expensive ones.

I haven't really been using my aids - I've been waiting for my university semester to finish so that it wouldn't matter if I lost days of productivity to headache.

They were both sounding really sharp - like certain frequencies are kicking my ear. Now my left ear is sounding really dull again, damn it.
 
My hearing is a relatively similar shape but further down the graph. I have what would be considered a very odd fitting for my loss bit it works for me. I fine certain noises painful and also not that useful to comprehension as I can't tolerate them existing, pls plus it's all distorted. I can HEAR the frequencies, but not in the right order, 8k sounds lower than 4, not higher. Some tones feel like there's a bug in my ear but there's no sound. Audios can never agree what I should do about those in my test, with some refusing to believe it's a possibility.

So I have power domes to block out unprocessed sound, really heavy settings for cutting out sudden sounds, and also quite a strong Soundrecover, even though it's not a match to my audiogram. That means it moves the painful noises to a place where I can make use of them and hear them without pain. They're actually moving sounds to a place where my thresholds are WORSE to help me hear them better. Works for me, and I keep a print of the settings I like and any new aids I tell them "This is crazy, but it's how I want them".
 
RoseRodent said:
My hearing is a relatively similar shape but further down the graph. I have what would be considered a very odd fitting for my loss bit it works for me. I fine certain noises painful and also not that useful to comprehension as I can't tolerate them existing, pls plus it's all distorted. I can HEAR the frequencies, but not in the right order, 8k sounds lower than 4, not higher. Some tones feel like there's a bug in my ear but there's no sound. Audios can never agree what I should do about those in my test, with some refusing to believe it's a possibility.

So I have power domes to block out unprocessed sound, really heavy settings for cutting out sudden sounds, and also quite a strong Soundrecover, even though it's not a match to my audiogram. That means it moves the painful noises to a place where I can make use of them and hear them without pain. They're actually moving sounds to a place where my thresholds are WORSE to help me hear them better. Works for me, and I keep a print of the settings I like and any new aids I tell them "This is crazy, but it's how I want them".
Click to expand...

That is quite an odd fitting, indeed. I don't think my hearing aids have a sound recover setting though I shall see about asking whichever audiologist I see.

I think I've experienced something similar to the bug feeling - sometimes I haven't heard the sound but I've "felt" something and I never know whether to press.

Have you ever been tested for Auditory Neuropathy Spectrum Disorder? ANSD is associated with distorted sounds and audiograms which don't match actual speech understanding.

My wife mentioned that a child with ANSD was joining her school and I looked it up. I wondered if it was what my Teacher of the Deaf had suggested I had (I thought he'd said APD) and it was. I hadn't had it checked because he'd said there was nothing that can be done. However, they do offer CIs for people whose PTA thresholds mean they wouldn't normally be candidates. Maybe useful for you if your hearing is further down the chart? Though it sounds like you're doing well with the aids.

According to my ToD my speech understanding with background noise is much worse than would be expected for my audiogram.

I've asked to be checked for it, since it means they'll have to use an objective measure.

I shall definitely ask about greater occlusion. Whether or not it will make me go nuts remains to be seen!
 
Okay, so I've been suggested to ask my GP for a referral to hearing therapy where they will play white noise into my aids to desensitise me. I'm not sure if it would just stop me being able to hear given that I find it very hard to hear over background noise. Might be worth a shot, though.

Unfortunately, my current audiology department don't offer investigation into Auditory Neuropathy. No advice for referral elsewhere. Just dropped like a sack of bricks.

In any case, I've got a GP appointment for next Tuesday to discuss being referred back to my old audiology department which DO test for ANSD.

ALSO! After many, many years of being overdue my local audiology department has finally upgraded its HAs! Both mine broke down today (one started muting and unmuting and then half way through the day a child I work with elbowed me in the ear and broke the other) so they told me while I was getting a replacement set. I'm booked in for 8th August for my spanking new bluetooth enabled set. Very excited.

Pretty sure this set won't have SoundRecover, though. I think only the aids for more severe loss do.
 
Latest in my saga: Glue Ear.

At around 10am on Thursday, I lost all hearing in my left ear except a tinnitus type hiss that was so quiet I wasn't sure I could hear it. Even my hearing aids produced nothing. I was also in severe pain. At about 1:30pm, I regain a small amount of hearing - just sounds that I couldn't make sense of even with my hearing aids and a relief from the pain. Without my hearing aids I was unable to tell if someone had stopped or started speaking in a quiet room and with them I was able to hear the very loud chatter of 28 children but only as a very quiet noise. I certainly couldn't tell one sound from another.

My wife insisted on me going to A&E and the doctor said there was no sign of an ear infection and gave me prednisone and told me to come back at 11am on the next day for further testing.

This morning (Friday), I regained a little more hearing. With my hearing as good as it had been since I lost it, my bone conduction audiogram came in as almost normal (only a few places 5dB worse than they'd ever been before but not the concern of the professionals at the time) whereas my air conduction showed a 20dB further loss pushing most of my frequencies between 60 and 70dB.

The ENT nurse showed absolutely no deaf awareness - he kept speaking from behind me and then gave my wife a dirty look for signing what he was saying to me. He also refused to believe that I could have lost all my hearing and kept telling me that I must have perceived it as such because of the imbalance between my ears (even though the problem persisted with my "good" ear covered).

He kept giving me all sorts of conflicting information including that 10dB wasn't much difference (even though he and I had read the audiogram as 20dB) and kept giving me different amounts of time I needed to come back in or take treatment for.

He had me blow with my nose pinched and it seems to have made my ears a bit worse. Grr. Anyway, with any luck it will resolve soon.

In the end, he gave me two types of nasal drops - one for a week and one for a month. I also insisted on having my hearing aids updated. He didn't want to because he said it wasn't a priority since it should be temporary but my wife and I insisted that I can't do my job without them. (I work with young children.) I'm going to take off my M+T setting and replace it with a higher volume so that if I do recover between now and 8th August (I'm finally getting a hearing aid upgrade!) then I can just switch back to normal.

As an amusing aside, with this newly moderate-to-severe hearing loss I tried out the specsavers hearing screening app and scored "normal"! This was even with having my wife adjust the volume to her hearing so I wouldn't skew it. Though, the reason we were taking it was because we suspect she might have a slight loss, so who knows?
 
Oh gosh.. so sorry about the sudden hearing loss. If the steroid is helping, could that be infamous sudden hearing loss?
http://www.healthline.com/health/sensorineural-deafness#Symptoms5

whatever it is, I hope you'll regain your hearing, at least partially. and, oh, it would well suit the nurse Ms Ignoramus to read that article, seeying how she is due for a refresher course. if not for any course :nono: :eek:

Fuzzy
 
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