Advice Needed - Adjusting To Has With Severe Sound Sensitivity.

appleeater

appleeater

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My most recent hearing aids, Oticon Spirit Zests (Epoq) which I've had for at least 5 years were trialled with a three week sound increase.

Unfortunately, I found the quietest level too loud with background noise. Though I did try my best with wearing them at home.

By the time they increased to the next level, they were already too painful. The result is that I can only use my hearing aids connected to a radio aid with the hearing aid mic turned off.

I've refused to have them adjusted since 2011, to the dismay of my audiologists. My audiologists won't turn them down any further because they'd be useless - currently they're set 7dB below the very bottom of where they'd expect people with my hearing loss to start experiencing pain. (Which I'm told is still below "normal" hearing.)

Unfortunately, I fear it is time for my HAs to be adjusted as I suspect my hearing is decreasing because they're not amplifying speech very well and I'm finding myself ramping up the volume on my radio aid.

I also experience pain from noises without hearing aids. Recently I've taken to wearing ear defenders at times to prevent this.

Recruitment has been suggested to me, but I've also been told it's unusual for my sensitivity to be so severe considering that my hearing loss is mild-to-moderate. I also have sensitivities from other senses as I have autism.

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(Left and right ear plots are mostly identical, but generally within 5 dB, so I've only posted my right ear.)

I'm increasingly struggling without HAs but I can't cope with them. My current audiology department as very dismissive and mostly deal with old people (something they've said themselves - it seems they favour the factory line approach). So I feel I need to be as proactive as possible with having any information that may help.

Has anyone else not been able to adapt? Is there anything I can do to help myself?

Would a longer gradual increase period be better, or is it unlikely to help after 3 weeks?

Perhaps soft moulds, instead of skeletons would be better for blocking out unwanted environmental sounds?


Settings:
1. Every day
2. Telecoil
3. Telecoil + microphone
4. Quiet

My appointment is on 29th March, so I'm going to try listening on quiet until then except in lectures and with my wife where I'll use my radio aid.

Thanks!
 
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I've got no help. My audiogram is my avatar and as you can see, my hearing starts around 100dB.

Do you have an auditory processing disorder or auditory neuropathy? Your hearing loss is mild with one little dip into moderate.
Get them to turn the sound down but if sounds WITHOUT hearing aids, maybe you should get your hearing tested with an ABR to get an exact measure of your hearing.
 
Thanks for replying!

I'm fairly sure my hearing has got worse and I've got a cold to top it off, so I've been trialling my hearing side while they're sounding a bit crap and it's going better than previous attempts.

Currently quiet sounds much like no hearing aids (which is new). My left ear in particular sounds bugged.

My hearing isn't very far into moderate, no. Usually it's mid frequency moderate and mild in high and low.

Unfortunately it distorts speech quite a bit. I've got about 40% speech accuracy in a quiet room, never had an in noise one. I know it's different to deafness, but I haven't found an active forum for HoH people who aren't either very new to deafness or old. Though I have problems with using hearing aids, I don't really identify with either.

I had quite a lot of diagnositic tests when I was first diagnosed, so I'm pretty sure I don't have auditory neuropathy. I'm an unknown aetiology.

I will ask about APD - thanks for the suggestion.

Can you explain more about how the ABR is more accurate- I've never heard of them being on on the NHS except for those unable to do PTA.
 
Here is an example- when I was tested for cochlear implant candidacy (see avatar photo)
My speech understanding was around 11%. And the very bottom line is what I could hear the As with circles were my aided thresholds with high powered hearing aids. Even with hearing aids that were the most powerful on the market, I didn't even make it into the moderate range.

An ABR is a completely objective measure of what you can and can't hear. Electrodes are attached to your head, you are either sedated or asked to be very quiet (I only know the protocol for children which is sedation). Sounds are played for each ear and your brain stem's response is recorded. Thus you can't accidentally hear tinnitus and report it as hearing a sound. Your brain tells the audiologist exactly what you can hear.
It can give better thresholds for "unusual" patients like you.
I was considered very unusual by being able to understand ANY speech with thresholds at 110dB but I used the pattern of noise and quiet to guess at words.
 
I've often wondered whether/how much tinnitus interferes with NT PTA tests, but I'm guessing because up until the last few years they've been consistent that they must be measuring something right.

I have got in trouble several times in the past for "trying to pretend to be hearing" by pressing the button when I thought I heard a noise, rather than when there was objectively a noise.

I don't think my current audiology department does ABR but my old audiology lists that it does do them on its website - so I'll ask at the end of the month and if they refuse/are generally unhelpful I will ask for a referral to my old place. They said they would investigate if my hearing declined, so it's not outside of the realm of possibility that it would be possible.
 
My trial with hearing aids has been going okay-ish. Better than previously. After a week of olive oil, I will be getting my ears syringed tomorrow.

In the middle of the week, I woke up to my left ear feeling even more dull. I am hopeful that I have a wax clog in my left ear or perhaps just the effects of a cold (does that effect only one ear?) rather than having lost more hearing as Britain's budget has been announced and the social care budget has been raided - so I wouldn't want the upset of trying to get interpreters any time soon.
 
Right ear had wax in, left did not. Off to my first Deaf Club meeting since I was 13 tonight. I want to have things set into place so if/when I do lose my hearing, it won't be isolating.
 
appleeater said:
My trial with hearing aids has been going okay-ish. Better than previously. After a week of olive oil, I will be getting my ears syringed tomorrow.

In the middle of the week, I woke up to my left ear feeling even more dull. I am hopeful that I have a wax clog in my left ear or perhaps just the effects of a cold (does that effect only one ear?) rather than having lost more hearing as Britain's budget has been announced and the social care budget has been raided - so I wouldn't want the upset of trying to get interpreters any time soon.
Click to expand...
Was you putting olive oil in your ears ?
 
I have read recently about people using olive oil to loosen wax or clear up ear infections. I don't know if it works but it seems to not cause harm and non-chemical/non-prescription option.
 
zephren said:
I have read recently about people using olive oil to loosen wax or clear up ear infections. I don't know if it works but it seems to not cause harm and non-chemical/non-prescription option.
Click to expand...
OK ! I never heard of this , I never had a wax build up in my ears . I guess I been lucky that way . I get earaches and the doctors can't find the cause and said it my TMJ .
 
I am thinking maybe it's not the right HA for you. The audio are not always right, even not always honest.
They think they know better what you need than you because they are 'educated' and you 'don't',
but the reality it is you what and how you hear, not them.
In my youth I was told by our local prominent otolaryngology specialist "I don't need HAs anymore because I am too deaf".
LOL.... not only I needed those back then, I still use them 40 years later :)

If your intuition tells you the HA is not working as it should then probably it isn't.

Ask to try other brands as well such as Phonak, Siemens, Widex
and despite what your audiogram shows, maybe you need stronger HA,
or you need different settings,
like if you currently have lots of bass/little trebles - switch to the opposite etc.
For example, I prefer low-low-low tones as I lost capability to hear high frequencies, so I was very surprised
to learn I actually need to increase the trebles in my HA (I have Phonak) not the bass. but it helped overall!

As for the removing earwax - I found this interesting bit:

Excess wax buildup is actually most likely due to an essential fatty acid deficiency, which can be remedied by supplementing your diet with a high quality omega-3 fat.
I recommend taking krill oil, as it has been proven to be far superior to other forms of omega-3 supplements.

http://articles.mercola.com/sites/articles/archive/2008/09/20/now-hear-this-don-t-remove-earwax.aspx

perhaps it's worth taking under consideration..

Fuzzy
 
whatdidyousay! said:
OK ! I never heard of this , I never had a wax build up in my ears . I guess I been lucky that way . I get earaches and the doctors can't find the cause and said it my TMJ .
Click to expand...

Earaches could be not 'earaches' at all - those could be migraines. just so you know.
I have migraine disorder since childhood.
one of my many migraine symptoms I developed last few years is precisely earache. every time I run to the doctor
he doesn't find anything in there. it's just migraine, only instead of a head pain I have an ear-pain, lol...
btw, the famous migraine headache is but only one of the many migraine symptoms.

Why does an Earache Accompany Migraine?

http://www.mdjunction.com/forums/mi...support/1551240-migraines-and-severe-ear-pain
https://migraine.com/blog/unusual-migraine-symptoms-earaches-ear-pain/
http://www.migrainedisorders.org/symptoms/
http://www.healthcentral.com/migraine/c/9357/15238/unusual-ear-pain/

I am not saying, of course, that you for sure have an unusual migraine symptom,
just that it could be one of the possible explanations :)

Fuzzy
 
Audiofuzzy said:
Earaches could be not 'earaches' at all - those could be migraines. just so you know.
I have migraine disorder since childhood.
one of my many migraine symptoms I developed last few years is precisely earache. every time I run to the doctor
he doesn't find anything in there. it's just migraine, only instead of a head pain I have an ear-pain, lol...
btw, the famous migraine headache is but only one of the many migraine symptoms.

Why does an Earache Accompany Migraine?

http://www.mdjunction.com/forums/mi...support/1551240-migraines-and-severe-ear-pain
https://migraine.com/blog/unusual-migraine-symptoms-earaches-ear-pain/
http://www.migrainedisorders.org/symptoms/
http://www.healthcentral.com/migraine/c/9357/15238/unusual-ear-pain/

I am not saying, of course, that you for sure have an unusual migraine symptom,
just that it could be one of the possible explanations :)

Fuzzy
Click to expand...
I start getting earaches after an auto accident , I got hit on my temple and knocked out cold and lost more hearing . I thought my hearing aids got damage b/c I kept
hearing sounds , there was nothing wrong with my hearing aids . The sound was from my injury , I got seizures after the accident too. I never had any before . The right side of my head still hurt today and I can no longer wear a hearing aid in my right ear.
 
Have you been to neurologist about the earaches? it could be related to your trigeminal nerve damaged in the accident.
I would even ask a plastic surgeon for an opinion regarding this.
I am sorry you suffer like this.

Fuzzy
 
Audiofuzzy said:
Have you been to neurologist about the earaches? it could be related to your trigeminal nerve damaged in the accident.
I would even ask a plastic surgeon for an opinion regarding this.
I am sorry you suffer like this.

Fuzzy
Click to expand...
I went to neurologist for something else and he has a accent and I had trouble understanding him . I did check up him and he had some bad reviews , I been trying to find another neurologist but there are none close by . I live in a small city and it very hard to find good doctors . Everyone I know that needed surgery went out of town that not saying a lot for the doctors here.
My sister is a RN and worked with people that has head trauma and she tried to tell me I would be a lot of pain after the accident but I was in too much to take any info in. I was just told by a neighbor who is a RN that getting hit in the temple is the worst place to get hit on your head.
Could trigeminal nerve damaged be why I get shooting pain in my eyes at times ?
 
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A lot of doctors aren't really experienced in more complicated cases. Maybe he didn't even know how extensive your injuries were.
I am sorry you are still suffering. I hope it will stop some time.
And you're welcome! I am glad I could help a little :welcome:

Fuzzy
 
Audiofuzzy said:
A lot of doctors aren't really experienced in more complicated cases. Maybe he didn't even know how extensive your injuries were.
I am sorry you are still suffering. I hope it will stop some time.
And you're welcome! I am glad I could help a little :welcome:

Fuzzy
Click to expand...
:ty:
 
Yes, the olive oil was to soften wax before syringing. It has no effect on ear infections, however.

Some people are more prone to wax build up than others. :)

It turned out that there was no wax in the left ear, only the right.

In any case, it seemed the muffled sound from my left hearing aid was simply that the clarity was now too poor for me. It sounded fine to her and the problem was resolved by turning the volume up in a few frequencies. I also had my right aid increased a little, though she turned some low tones down.

She didn't seem to have any experience with someone with sound sensitivity and insisted I would get used to them, even though I expressed doubt since I find some normal sounds that other people don't find disturbing too loud. In the end she settled on the fact that people have different sound sensitivities but that it would be good if I did wear my hearing aids because I'm missing speech sounds.

I lost another 5dB at a couple in less than a year, but scored 5dB (45dB) more on others, so maybe that's normal fluctuation. Still my lowest ever score at 4000, though.

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. If I have a sudden hearing loss, I should come back but otherwise they'll retest in 3 years though they want me to drop in to have my hearing aids serviced every 6 months. (No mention of a 12 week follow up!)

They still haven't upgraded their aids, so no wireless ones for me.

Now to contemplate whether I should ask to be referred back to my London clinic.
 
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