Just How Far Should You Push Reactive Tinnitus? Should I Protect My Hearing More?

[ErikaS]

To my fellow reactive tinnitus/mild hyperacusis friends:

I am just over 3 months in with my tinnitus. It started as one electric hiss in my right ear with ear infection that became reactive, then I gained tones/sounds in both ears with distortions here and there. I experience no pain with the reactivity.

When sound makes my tinnitus react, all tones go out the window and it just goes to high electric hiss heaven. When the aggravating sounds stop, the electric hiss continues and decreases a little verrrry slowwwly and then the tones slowly come out and are at their loudest (7/10). It can take anywhere from 30 minutes to a few hours to calm down to a level that isn't very overwhelming.

Sounds that annoy it are things like running shower water, running furnace, and certain TV sounds. I can manage those things and it calms down rather quickly, but driving in the car is probably the worst. That's where the high electric hiss is at its worst and distortions pop up more.

So, here I am experiencing this in the car when driving over 5 minutes, but I need to drive to my therapies that are 20 minutes away.

However, I wondered today if I am possibly making things worse and/or cancelling out any possible improvement by driving before and after therapy? Or is this just something we have to deal with and it should get better?

I do not protect ears in the house and I have been lucky to have my mother-in-law vacuum for us while I go outside or leave, so I'm not exposing myself to any real loud sounds and I have not gone to restaurants. I do not protect in the car or when I go into grocery stores because I don't experience pain. However, I'm wondering if I am going about this too loosely. Then again I read that protecting in the car can sometimes be counter productive as the vibrations can still be transmitted through the skull via bone conduction.

I should note I've been listening to light classical music during the day when I can and I've been having light background sound (nature sounds or light wind chimes in the wind) on when going to bed. I can't turn our furnace off as we need heat, so I've been acclimating for that low hum.

I guess I'm just wondering if the reason my reactivity isn't getting better is because I am pushing too much with the 15-20 minute driving to and from my therapies, letting everyday home sounds in, and quick runs to the store. Also wondering if I need to invest in some custom ear plugs rather than rely on the foam ones or noise cancellation. Any custom or musician ear plug recommendations are appreciated

 

[DeanD]

I'm in a similar boat to you - mine is 2 months in.

I was wearing hearing protection all the time, but I slowly started to stop wearing them in the house.

I put the TV on volume 3 for a day, the next day volume 4, the day after that volume 5 etc - the reactivity, although there, had started to diminish very slowly. I was becoming more tolerant of sounds, whereas only a few weeks ago I was spiking badly to things barely audible to me, like wind outside, fridge hum, PC fan etc.

My current 'rule' is to not wear hearing protection in the house unless I'm in the kitchen (2x setbacks and both in the kitchen, hence this rule) - but I do currently wear hearing protection outdoors.

I know this is never usually advised, but I know I am still susceptible to new tones. I had planned to start, in small doses, relax the hearing protection further outdoors in a controlled way but I visited an ENT consultant on Thursday who did (another) hearing test. I already refused the pressure test to the audiologist as I didn't want anything to worsen it so they knew my situation, but this audiologist (for some reason) played low level white noise for about 10-15 seconds during the bone conducting beeps, which has caused an almost immediate spike that is still continuing and worrying me now !

I've done a few beep type hearing tests and no audiologist has ever played white noise - so I wasn't suspecting it, or thought to ask them not to.

I add this because although I was able to let more sounds in which seemed to be starting to very slowly reduce the reactivity - I now have another setback (my third) because I put myself in the hands of others.

My point being, around the house you have an ability to control the sounds around you and can gradually increase them but outside you are in the hands of others.

I guess it also depends whether your spikes always go down - and whether more tones are being added.

If you feel relatively stable, it may be that you can follow the general rule to treat the hyperacusis or sound sensitivity by letting normal sounds in, but carry hearing protection in case - but if you feel new tones are added too easily maybe noise reduction earplugs when out and potential to be around loud sounds in the early days may help avoid setbacks.

I wish there was a more specific answer to individual cases but guess we all have to try and learn as we go.

We don't want to hinder potential progress, but also know how a 1 second incident can set us back.

Hope yours continues to stabilise and improve.

 

[Jupiterman]

I put the TV on volume 3 for a day, the next day volume 4, the day after that volume 5 etc - the reactivity, although there, had started to diminish very slowly.

....

I guess it also depends whether your spikes always go down - and whether more tones are being added.

When you say volume 3, volume 4 on your TV; is that 3 and 4 percent of maximum volume?

I agree that if an external sound causes your tinnitus to increase but it returns to your base level WITHOUT an additional tone being added, then that external sound should be alright to listen to and hopefully should help with tolerances.

 

[DeanD]

When you say volume 3, volume 4 on your TV; is that 3 and 4 percent of maximum volume?

I agree that if an external sound causes your tinnitus to increase but it returns to your base level WITHOUT an additional tone being added, then that external sound should be alright to listen to and hopefully should help with tolerances.

As my TV goes from a volume of 0 to 100, then yes, those numbers can be used as a percentage of the TVs overall volume.

 

[Jupiterman]

As my TV goes from a volume of 0 to 100, then yes, those numbers can be used as a percentage of the TVs overall volume.

Thanks, @DeanD. Do you have any adverse reaction in listening to loudspeakers/digital audio?

I can't put my TV above 4% without feeling a reaction.

 

[DeanD]

Thanks, @DeanD. Do you have any adverse reaction in listening to loudspeakers/digital audio?

I can't put my TV above 4% without feeling a reaction.

I had bad reactions at the start 8 weeks ago. Even the TV at volume 1 or 2 (which I couldn't hear due to the tinnitus) would spike my tinnitus.

This extended to PC fans, heating system and any digital audio source.

As I allowed more sounds in around the house, I noticed it didn't spike so much with the refrigerator or oven, so I attempted the TV and started working my way up the volume one day at a time.

Unfortunately this changed on Thursday when the stupid audiologist used white noise during a hearing test. I can only think it was due to the fact I kept pressing the beep button when there wasn't a beep because of the tinnitus - and so she played low volume white noise to mask the tinnitus so I could hear the beeps better (?).

I told her I wouldn't do the pressure test, or have paper mask fitted over my eardrums because my tinnitus was incredibly sound reactive! What on earth do these people think, and this was a place where they specialised in tinnitus too!

Since then not only has the volume of my tinnitus gone to unimaginable levels and not come down, but it's back to being as reactive as it was.

I can't put my TV above 4% without feeling a reaction.

Has yours been like that from day one, or has the reactivity improved or got worse?

 

[object16]

Hi, it's a delicate balance.

Several years ago, I was outside, and a truck backfired from at least 300 feet away. It knocked the sh** out of my tinnitus, and the spike was at least 6 months, I almost ended up in chronic psych ward.

My colleague said don't take chances. Since then I always wear Bose QC25 noise-cancelling headphones, this is a light form of protection that will prevent you from getting a spike for - loud overhead paging, shopping carts crashing, illegal/no car muffler, etc etc etc. Mostly in the house I don't wear them, and I have a quiet office, I may or may not wear them, but if I am wearing them, I have a FLAC player with restful rain soundtrack set on low. Raiinfall is pink noise, which is good for hyperacusis.

I have low frequency hypersensitivity, hyperacusis, and generalized sound hypersensitivity, just about as bad as it can go. I have a good stock of Bose QC25, they do eventually break/wear out, such as the internal wire will break and then disposable cheap Ch***** garbage sold for high profit, to you, at high price, which I resent, but what can you do?

If I'm in a noisy part of the building (still considered safe by occupational health, no one wears hearing protection there), I will wear sponge hearing protection plus the Bose. If someone says something to me, I pick up the Bose, so I can hear them. They all know I have tinnitus, a chronic neuropathic pain disorder, so everyone respects that. If I did not do the above, I would be a total wreck. My dentist is also aware, she is extremely considerate, drill for second, off for a second, only do as conservative procedure as possible. I'm missing a front tooth, I can't risk the tinnitus spike from getting an implant, I can afford it from the finance point of view, but not from the tinnitus spike point of view, so I just go around with a missing tooth. My colleague just says it makes me look bad-ass. A lot of people around here have missing teeth, just not at the place I work - they can afford dental care, so everyone's teeth are great, I mean dental problems are common, missing teeth are common, and you do apparently lose lifespan from missing teeth, but it's all a compromise for me.

The main thing that deep-sixed me, was years ago I used to wear sponge hearing protection 24/7 including sleep. Overuse of hearing protection gave me hyperacusis and tinnitus. I was admitted to hospital with it. After being discharged from hospital, no one knew anything, and no one told me to not wear hearing protection at night. That is the totally worst. You have to have very quiet music or restful rain soundtrack all night, that will keep your hearing healthy. I actually am gradually slowly slowly getting better. And it is slow, such as snail's pace, you are talking neural rehabilitation, such as rehab from a stroke, it is painfully slow. You have to prevent it from getting worse by using appropriate hearing protection, and help it to get better with proper diet, exercise, and give your ears constant low level stimulation. Just like you would treat any chronic pain condition. Bad back? Don't lift heavy things, and keep your back straight and lift with your legs. You may need some pain killers, maybe even long term. That's just part of life. I enjoy my life. I'm not going to get into an end it all thread here, that's not the good answer, it may be the case for some very rare person, and mine has been about as bad as can be imagined, crying for hours, until there aren't any tears left, realizing crying did nothing except lose my supply of tears. I just keep going, I don't know how, but I certainly wear hearing protection as required, and outside, with trucks and harleys, hearing protection outside is mandatory. Just light protection, such as noise-cancelling headphones. Overprotection leads to worse complications.

 

[Jupiterman]

@object16, is it reactive (as per title of thread) tinnitus you have?

@DeanD, I got worse after a further exposure.

 

[dan]

you do apparently lose lifespan from missing teeth, but it's all a compromise for me.

Huh?

 

[momus]

Driving and therapy are two separate things. Unless you're driving w/ your windows down and hearing horns and such (boom box cars anyone?), it's the stress from driving these days. People are on their phones, eating w/ one hand, maybe stoned or on meds, it's a mess out there.

My suggestion is very simple. Stop driving. I did that 30 years ago and couldn't be happier. There's Uber, Lyft, cabs, walking, and I make sure to live where public transportation is available. Having lived before in big cities where driving and especially parking was almost impossible, this was old stuff. I also have an eBike that I use every day for exercise, errands, etc. You'll probably save money over owning a car. Say goodbye to tags, annual inspections, auto repairs, tires, gas, insurance, you name it, not to mention a lot of stress.

Plus, I love riding a bike, it's almost complete freedom and a continuation of my daily meditation. If one isn't tuned in 100% to the present moment while on a bike, one is usually dead as a door nail. That keeps me on my toes even at 70 years of age. My reflexes are still quite good. Don't forget, if you are going to therapy for your tinnitus, that only works so far. You should make every effort to find all about how you can mask the sound, avoid stressful or noisy environments, keep abreast of how others are making it work for them, etc.

 

[Wrfortiscue]

@ErikaS, I would protect while driving and being in places where you can't control the sound. I started off with light reactivity but a year and a half later I can't tolerate digital audio, any fans, or driving. I still expose but if I expose to triggering sounds for too long, my tinnitus reacts with what used to be a light soft buzzsaw but has turned into a piercing laser cutting through my brain.

I am still trying to figure out a way to desensitize using filtered earplugs but not much success.

 

[ErikaS]

@ErikaS, I would protect while driving and being in places where you can't control the sound. I started off with light reactivity but a year and a half later I can't tolerate digital audio, any fans, or driving. I still expose but if I expose to triggering sounds for too long, my tinnitus reacts with what used to be a light soft buzzsaw but has turned into a piercing laser cutting through my brain.

I am still trying to figure out a way to desensitize using filtered earplugs but not much success.

Thank you for the feedback. Ugh it's so annoying, if only we had ONE area of professionals that truly understood all of this and knew how to go about rehabilitation, but we don't and therefore it's a shot in the dark for all of us.

I didn't have tinnitus at all before the ear infection 3.5 months ago, and it just sucks because it was my right ear that was affected from the infection, but the loudest tone is in my left ear? But my high static reactive/wind up sound is in my right ear. Awful. I am hoping if I can address inflammation from all areas and get my sleep and anxiety under control, it will help, but again, a shot in the dark.

 

[Darrenb111]

Your situation sounds very similar to mine when i developed a sound sensitive tinnitus and hyperacusis from a suspected inner ear infection.

I'm happy to say that now, 25 months later, my hyperacusis has completely gone and I am fully habituated to my now, a lot less intrusive, tinnitus.

My thoughts on what worked for me have been mentioned by some already. I used ear protection at the beginning out of fear but gradually weaned myself off little by little. Sounds like running water, cutlery, my baby daughter's high pitched giggles were horrendous and I would still wear silicon eaplugs, not to remove sound altogether, but to lower the dB of life around me. I saw a private audiologist (I am from the UK and the NHS service is terrible) who issued me with a hearing aid that adjusted certain levels which I can go into more detail on if needed but it had the net effect of playing a low static sound in my problem right ear.

Over the course of 1 year of wearing the hearing aid continuously, outside of sleep, my hyperacusis gradually healed and I can comfortably be in loud environments with no sensitivity or reaction to my tinnitus.

I'm currently typing on my phone as I have caught the flu from my kids! Illness used to be a big player in tinnitus level but it's only slightly raised at present.

Happy to add more, I'll keep an eye on this post. I hope this helps in some way and gives you confidence that hyperacusis can be eased.

 

[ErikaS]

Your situation sounds very similar to mine when i developed a sound sensitive tinnitus and hyperacusis from a suspected inner ear infection.

I'm happy to say that now, 25 months later, my hyperacusis has completely gone and I am fully habituated to my now, a lot less intrusive, tinnitus.

My thoughts on what worked for me have been mentioned by some already. I used ear protection at the beginning out of fear but gradually weaned myself off little by little. Sounds like running water, cutlery, my baby daughter's high pitched giggles were horrendous and I would still wear silicon eaplugs, not to remove sound altogether, but to lower the dB of life around me. I saw a private audiologist (I am from the UK and the NHS service is terrible) who issued me with a hearing aid that adjusted certain levels which I can go into more detail on if needed but it had the net effect of playing a low static sound in my problem right ear.

Over the course of 1 year of wearing the hearing aid continuously, outside of sleep, my hyperacusis gradually healed and I can comfortably be in loud environments with no sensitivity or reaction to my tinnitus.

I'm currently typing on my phone as I have caught the flu from my kids! Illness used to be a big player in tinnitus level but it's only slightly raised at present.

Happy to add more, I'll keep an eye on this post. I hope this helps in some way and gives you confidence that hyperacusis can be eased.

Hey @Darrenb111, thank you for your response. I so appreciate your input and am very grateful that you responded. I do have some questions/comments and would love your feedback.

So, I just realized I have a hearing difference in my right ear at frequencies higher than 8 kHz, which was the ear most affected by the ear infection and where the tinnitus started. Starting around 12 kHz, there is a distinct difference in ability to hear in my right ear compared to my left ear. This was not caught by any ENT as they don't/won't test above 8 kHz. However, this now all makes sense since the first tinnitus sound that came on was a high static/electric reactive hiss sound that is in that frequency range, and it is still with me and my most reactive sound.

I am so upset that this was not known/seen at the time of the ear infection because I could have done intratympanic steroid shots to try to salvage the hearing and/or stop the tinnitus from progressing. I am very much out of that ideal time window, but I am seeing an ENT on Thursday who is going to do a shot to my right ear to see if it has any positive effect on the tinnitus or reactivity if it is inflammation based. I have 3-4 other tones that came on with colds after the ear infection that constantly change pitch and fluctuate with sound. 1-2 sounds are in my left ear which is so frustrating as that ear was not affected with hearing ability, so why I had to get tinnitus in my left ear is beyond me and makes this that much harder and upsetting. I am not sensitive to sounds in the sense where I would experience them louder than normal. I do have some distortions with driving, water running, fridge and heater running. So it's not full on hyperacusis, but very sensitive reactivity.

So that's where I am. 3.5 months in and I'm so scared that because the upper frequency hearing loss was not addressed, I'm screwed and may not see improvement.

Could you describe your tinnitus? Unilateral or bilateral? More than one tone? Did you have any electric or static hiss that was reactive? So interesting about the hearing aid, not sure they make hearing aids that address a loss in the areas that I had. But I would love to wear anything that would block out reactivity.

Thank you for any feedback and encouragement.

 

[DeanD]

Your situation sounds very similar to mine when i developed a sound sensitive tinnitus and hyperacusis from a suspected inner ear infection.

I'm happy to say that now, 25 months later, my hyperacusis has completely gone and I am fully habituated to my now, a lot less intrusive, tinnitus.

My thoughts on what worked for me have been mentioned by some already. I used ear protection at the beginning out of fear but gradually weaned myself off little by little. Sounds like running water, cutlery, my baby daughter's high pitched giggles were horrendous and I would still wear silicon eaplugs, not to remove sound altogether, but to lower the dB of life around me. I saw a private audiologist (I am from the UK and the NHS service is terrible) who issued me with a hearing aid that adjusted certain levels which I can go into more detail on if needed but it had the net effect of playing a low static sound in my problem right ear.

Over the course of 1 year of wearing the hearing aid continuously, outside of sleep, my hyperacusis gradually healed and I can comfortably be in loud environments with no sensitivity or reaction to my tinnitus.

I'm currently typing on my phone as I have caught the flu from my kids! Illness used to be a big player in tinnitus level but it's only slightly raised at present.

Happy to add more, I'll keep an eye on this post. I hope this helps in some way and gives you confidence that hyperacusis can be eased.

How did you manage with the sound reactivity of tinnitus and hearing aids boosting sounds around you?

 

[Darrenb111]

Hey @Darrenb111, thank you for your response. I so appreciate your input and am very grateful that you responded. I do have some questions/comments and would love your feedback.

So, I just realized I have a hearing difference in my right ear at frequencies higher than 8 kHz, which was the ear most affected by the ear infection and where the tinnitus started. Starting around 12 kHz, there is a distinct difference in ability to hear in my right ear compared to my left ear. This was not caught by any ENT as they don't/won't test above 8 kHz. However, this now all makes sense since the first tinnitus sound that came on was a high static/electric reactive hiss sound that is in that frequency range, and it is still with me and my most reactive sound.

I am so upset that this was not known/seen at the time of the ear infection because I could have done intratympanic steroid shots to try to salvage the hearing and/or stop the tinnitus from progressing. I am very much out of that ideal time window, but I am seeing an ENT on Thursday who is going to do a shot to my right ear to see if it has any positive effect on the tinnitus or reactivity if it is inflammation based. I have 3-4 other tones that came on with colds after the ear infection that constantly change pitch and fluctuate with sound. 1-2 sounds are in my left ear which is so frustrating as that ear was not affected with hearing ability, so why I had to get tinnitus in my left ear is beyond me and makes this that much harder and upsetting. I am not sensitive to sounds in the sense where I would experience them louder than normal. I do have some distortions with driving, water running, fridge and heater running. So it's not full on hyperacusis, but very sensitive reactivity.

So that's where I am. 3.5 months in and I'm so scared that because the upper frequency hearing loss was not addressed, I'm screwed and may not see improvement.

Could you describe your tinnitus? Unilateral or bilateral? More than one tone? Did you have any electric or static hiss that was reactive? So interesting about the hearing aid, not sure they make hearing aids that address a loss in the areas that I had. But I would love to wear anything that would block out reactivity.

Thank you for any feedback and encouragement.

In my situation I had complete hearing loss in my right ear. I was given some steroids which I believe helped me recover some hearing, leaving me with complete loss from 5.5 kHz and above. This was quite lucky I guess as most speech is below 5.5 kHz so I do not have any problem with conversation.

The tinnitus I have is in my right ear; it's a hiss that would turn into a tone if I exposed myself to noise throughout the day. Not loud noise, just general noise would make my hiss get louder and morph into this tone. It would generally reset by the next day. I did also develop a low hum in my left ear which seems strange as I have no hearing loss or any type of issue in my left ear. It's all linked I assume but strange none the less.

The hearing aid is where it got interesting for me. The audiologist I saw set me up with a hearing aid, an Oticon More 1. This allowed for her to adjust certain ranges. I have found a copy of her email to me as an explanation...

"Initially when I assumed that it was recruitment, the aim was to try to provide amplification at 6 and 8 kHz to increase your dynamic range in a gradual manner.

Once we started leading to the explanation that it was likely to be hyperacusis, the idea of hyperacusis retraining therapy (HRT) was the treatment we decided to progress with.

We are actually providing mild amplification to the mid-frequencies. Not because you need it, but rather because it acts as a partial masking effect. We are providing barely, if any at all, amplification to the high frequencies. This explains why you are not perceiving these high frequencies louder, and not noticing a difference in your perception of high frequencies with and without the device.

In your initial consultation, we identified that your tinnitus was spiked by loud sounds e.g. cars. The partial masking that we are providing from the device helps to reduce the loudness of the sounds that you find bothersome. As a result, it is less likely to aggravate your tinnitus."​

To be fair I think the outcome of the hearing aid surprised both her and myself. I think I got lucky.

How did you manage with the sound reactivity of tinnitus and hearing aids boosting sounds around you?

The levels she adjusted in the hearing aid didn't seem to boost any sound strangely. As said above, I think she got lucky with the setup that had an instant impact on the hyperacusis.

Also to add, where she had added slight amplification to the mid tones, it created a slight static sound. I wore the hearing aid for all my waking hours for just over a year and the slight static sound, in my opinion, acted like sound therapy which helped desensitise my brain from the tinnitus and gradually lower the hyperacusis.

I did consider that this was a placebo effect when I first started to wear the hearing aid but there were times at home where i would suddenly have bouts of hyperacusis whilst wearing the hearing aid and then my wife would point out the aid was hanging out. It was not placebo

 

[ErikaS]

In my situation I had complete hearing loss in my right ear. I was given some steroids which I believe helped me recover some hearing, leaving me with complete loss from 5.5 kHz and above. This was quite lucky I guess as most speech is below 5.5 kHz so I do not have any problem with conversation.

The tinnitus I have is in my right ear; it's a hiss that would turn into a tone if I exposed myself to noise throughout the day. Not loud noise, just general noise would make my hiss get louder and morph into this tone. It would generally reset by the next day. I did also develop a low hum in my left ear which seems strange as I have no hearing loss or any type of issue in my left ear. It's all linked I assume but strange none the less.

The hearing aid is where it got interesting for me. The audiologist I saw set me up with a hearing aid, an Oticon More 1. This allowed for her to adjust certain ranges. I have found a copy of her email to me as an explanation...

"Initially when I assumed that it was recruitment, the aim was to try to provide amplification at 6 and 8 kHz to increase your dynamic range in a gradual manner.

Once we started leading to the explanation that it was likely to be hyperacusis, the idea of hyperacusis retraining therapy (HRT) was the treatment we decided to progress with.

We are actually providing mild amplification to the mid-frequencies. Not because you need it, but rather because it acts as a partial masking effect. We are providing barely, if any at all, amplification to the high frequencies. This explains why you are not perceiving these high frequencies louder, and not noticing a difference in your perception of high frequencies with and without the device.

In your initial consultation, we identified that your tinnitus was spiked by loud sounds e.g. cars. The partial masking that we are providing from the device helps to reduce the loudness of the sounds that you find bothersome. As a result, it is less likely to aggravate your tinnitus."​

To be fair I think the outcome of the hearing aid surprised both her and myself. I think I got lucky.

The levels she adjusted in the hearing aid didn't seem to boost any sound strangely. As said above, I think she got lucky with the setup that had an instant impact on the hyperacusis.

Also to add, where she had added slight amplification to the mid tones, it created a slight static sound. I wore the hearing aid for all my waking hours for just over a year and the slight static sound, in my opinion, acted like sound therapy which helped desensitise my brain from the tinnitus and gradually lower the hyperacusis.

I did consider that this was a placebo effect when I first started to wear the hearing aid but there were times at home where i would suddenly have bouts of hyperacusis whilst wearing the hearing aid and then my wife would point out the aid was hanging out. It was not placebo

Thanks so much for sharing. So odd, I too developed a lower tone in my left ear and it is my loudest! Makes no sense, but none of this does. Did that lower tone in the not-affected-ear subside for you at all?

Has your hiss stayed the same, and is no longer reactive or intrusive? Do you still wear the hearing aid?

 

[Darrenb111]

Did that lower tone in the not-affected-ear subside for you at all?

Has your hiss stayed the same, and is no longer reactive or intrusive? Do you still wear the hearing aid?

The lower tone has gone, it lasted around a year. I can't hear it even if I try.

The hiss is about a 1 or 2 out of 10 now but originally was very loud and very intrusive. It is no longer reactive to sounds.

I don't wear the hearing aid. After a few months of not needing it anymore, I sold it on eBay.

 

[ErikaS]

The lower tone has gone, it lasted around a year. I can't hear it even if I try.

The hiss is about a 1 or 2 out of 10 now but originally was very loud and very intrusive. It is no longer reactive to sounds.

I don't wear the hearing aid. After a few months of not needing it anymore, I sold it on eBay.

So glad to hear things got better for you, I wish there was a hearing aid to be used for frequencies about 8 kHz to cancel out my reactive hiss or at least lessen it. Because then my brain could calm down, my mood would lift, and that would allow things to heal/improve faster. And unfortunately I have about 4-5 tones that are all reactive to each other, so it's a lot going on in my ears. Your story gives me hope though and I pray I'm in a similar situation 6-9 months from now!

 

[Sammy0225]

The lower tone has gone, it lasted around a year. I can't hear it even if I try.

The hiss is about a 1 or 2 out of 10 now but originally was very loud and very intrusive. It is no longer reactive to sounds.

I don't wear the hearing aid. After a few months of not needing it anymore, I sold it on eBay.

This is really good information. On my worse days I can only describe mine equivalent to standing in a server room with 4-5 different tones blasting all at once. Thankfully most have subsided. I'm left mainly with a hiss that fluctuates all day long depending on how much noise I'm exposed to. Then it will reset with sleep.

I'm treating it with sound therapy as now I'm convinced that I have a form of hyperacusis without the burning pain. I do get wet ears and itchy inner ears. I'm also hoping like @ErikaS to make the hiss less reactive.

Can I ask how is your daily life now? Can you go to grocery stores or movie theaters without hearing protection?

Thanks.

 

[DeanD]

This is really good information. On my worse days I can only describe mine equivalent to standing in a server room with 4-5 different tones blasting all at once. Thankfully most have subsided. I'm left mainly with a hiss that fluctuates all day long depending on how much noise I'm exposed to. Then it will reset with sleep.

I'm treating it with sound therapy as now I'm convinced that I have a form of hyperacusis without the burning pain. I do get wet ears and itchy inner ears. I'm also hoping like @ErikaS to make the hiss less reactive.

Can I ask how is your daily life now? Can you go to grocery stores or movie theaters without hearing protection?

Thanks.

Sorry for the question over question, but @Sammy0225 - how long did it take for all those tones to subside after they started, to now a hiss?

 

[Sammy0225]

Sorry for the question over question, but @Sammy0225 - how long did it take for all those tones to subside after they started, to now a hiss?

It took about 5 months to see improvement from the multiple tones fading away. If you're wondering how I did it, I had to isolate from the outside world for several months. I ordered online and stopped going to social gatherings. Not going to lie, it sucked, but I slowly started seeing improvement at a snail's pace. The last tone to fade away was a wine glass humming. I still have a slight ring and a hiss.

What I was doing wrong was exposing my ears to sound that my auditory system wasn't ready for, which was adding more tones.

I hope this helped.

 

[ErikaS]

It took about 5 months to see improvement from the multiple tones fading away. If you're wondering how I did it, I had to isolate from the outside world for several months. I ordered online and stopped going to social gatherings. Not going to lie, it sucked, but I slowly started seeing improvement at a snail's pace. The last tone to fade away was a wine glass humming. I still have a slight ring and a hiss.

What I was doing wrong was exposing my ears to sound that my auditory system wasn't ready for, which was adding more tones.

I hope this helped.

So me driving in the car to therapies and popping into grocery stores once a week or so is not ideal... In the meanwhile I was told everyday mild-moderate sounds are good to take in with reactivity. Like I said above, we have NO professional or lead that truly knows this condition.

 

[Darrenb111]

This is really good information. On my worse days I can only describe mine equivalent to standing in a server room with 4-5 different tones blasting all at once. Thankfully most have subsided. I'm left mainly with a hiss that fluctuates all day long depending on how much noise I'm exposed to. Then it will reset with sleep.

I'm treating it with sound therapy as now I'm convinced that I have a form of hyperacusis without the burning pain. I do get wet ears and itchy inner ears. I'm also hoping like @ErikaS to make the hiss less reactive.

Can I ask how is your daily life now? Can you go to grocery stores or movie theaters without hearing protection?

Thanks.

Yes, I can go anywhere now without hearing protection. At the start, I couldn't even walk down the road without the sound of a passing card or a chirping bird having an effect on my hyperacusis and then tinnitus. Now I can go to a loud bar or restaurant and have no adverse effects. My hyperacusis has gone and with it the reactiveness of the tinnitus, leaving me with a non-bothersome 2/10 base tinnitus.

It took about 5 months to see improvement from the multiple tones fading away. If you're wondering how I did it, I had to isolate from the outside world for several months. I ordered online and stopped going to social gatherings. Not going to lie, it sucked, but I slowly started seeing improvement at a snail's pace. The last tone to fade away was a wine glass humming. I still have a slight ring and a hiss.

What I was doing wrong was exposing my ears to sound that my auditory system wasn't ready for, which was adding more tones.

I hope this helped.

This is bang on. I also removed myself from life for many months before I got my hearing aid. By not putting my auditory system into sound I wasn't ready for, I helped my body calm down and lose the initial fight or flight response.

So me driving in the car to therapies and popping into grocery stores once a week or so is not ideal... In the meanwhile I was told everyday mild-moderate sounds are good to take in with reactivity. Like I said above, we have NO professional or lead that truly knows this condition.

Before the hearing aid, I would wear some silicon earplugs to help lower surrounding sounds to a comfortable level to not aggravate the hyperacusis.

 

[Samy]

Very interesting thread... I also have reactive tinnitus with 3-4 tones (normally) that react to cars sounds, fans, shower, etc. but when spiking I have 5-6 tones going crazy (like now). But in my case, it is directly linked to my hyperacusis... After a setback in hyperacusis, I have new tones added for some weeks before they subside. When my hyperacusis was 75% better, the tinnitus was less reactive. So I learned that I need to use earplugs whenever I go out (for now at least) and gradually decrease the «dB protection» of the earplugs until I hope the hyperacusis goes away and the tinnitus won't be reactive anymore.

I'm treating it with sound therapy as now I'm convinced that I have a form of hyperacusis without the burning pain. I do get wet ears and itchy inner ears. I'm also hoping like @ErikaS to make the hiss less reactive.


Thanks.

May I ask how are you using sound therapy? Are you using white noise with the hearing aids?

Sorry for my English.

 

[Juan]

I do not protect ears in the house and I have been lucky to have my mother-in-law vacuum for us while I go outside or leave, so I'm not exposing myself to any real loud sounds and I have not gone to restaurants. I do not protect in the car or when I go into grocery stores because I don't experience pain. However, I'm wondering if I am going about this too loosely. Then again I read that protecting in the car can sometimes be counter productive as the vibrations can still be transmitted through the skull via bone conduction.

I should note I've been listening to light classical music during the day when I can and I've been having light background sound (nature sounds or light wind chimes in the wind) on when going to bed. I can't turn our furnace off as we need heat, so I've been acclimating for that low hum.

I guess I'm just wondering if the reason my reactivity isn't getting better is because I am pushing too much with the 15-20 minute driving to and from my therapies, letting everyday home sounds in, and quick runs to the store. Also wondering if I need to invest in some custom ear plugs rather than rely on the foam ones or noise cancellation. Any custom or musician ear plug recommendations are appreciated

The car is complicated... try to see if driving with earplugs is better.

If I were you I would use earplugs at the grocery store if there's loud music, PA system or people stacking material, or moving stuff around with loud machines. The machine that polishes the floor is also squeaky...

Listening to classical music is a good idea.

The furnace, or the sound of air con, that's a tough one. It's really annoying, so I suggest you use earplugs on and off, so that you don't wear the earplugs all the time, and you are not exposed to the furnace sound constantly either.

When you start using them, earplugs are likely to build up pressure inside your ears, but you remove them and then put them. in again after a while. In the long run you get used to them and can have them on for hours.

For me the biggest relief for my very severe hyperacusis was using hearing protection. It decreased anxiety and in the long run things improved. No one needs to be exposed to sounds that bother, annoy or are damaging... we have hearing protection (earplugs and / or earmuffs) for that.

 

[Nick47]

In my situation I had complete hearing loss in my right ear. I was given some steroids which I believe helped me recover some hearing, leaving me with complete loss from 5.5 kHz and above. This was quite lucky I guess as most speech is below 5.5 kHz so I do not have any problem with conversation.

The tinnitus I have is in my right ear; it's a hiss that would turn into a tone if I exposed myself to noise throughout the day. Not loud noise, just general noise would make my hiss get louder and morph into this tone. It would generally reset by the next day. I did also develop a low hum in my left ear which seems strange as I have no hearing loss or any type of issue in my left ear. It's all linked I assume but strange none the less.

The hearing aid is where it got interesting for me. The audiologist I saw set me up with a hearing aid, an Oticon More 1. This allowed for her to adjust certain ranges. I have found a copy of her email to me as an explanation...

"Initially when I assumed that it was recruitment, the aim was to try to provide amplification at 6 and 8 kHz to increase your dynamic range in a gradual manner.

Once we started leading to the explanation that it was likely to be hyperacusis, the idea of hyperacusis retraining therapy (HRT) was the treatment we decided to progress with.

We are actually providing mild amplification to the mid-frequencies. Not because you need it, but rather because it acts as a partial masking effect. We are providing barely, if any at all, amplification to the high frequencies. This explains why you are not perceiving these high frequencies louder, and not noticing a difference in your perception of high frequencies with and without the device.

In your initial consultation, we identified that your tinnitus was spiked by loud sounds e.g. cars. The partial masking that we are providing from the device helps to reduce the loudness of the sounds that you find bothersome. As a result, it is less likely to aggravate your tinnitus."​

To be fair I think the outcome of the hearing aid surprised both her and myself. I think I got lucky.

The levels she adjusted in the hearing aid didn't seem to boost any sound strangely. As said above, I think she got lucky with the setup that had an instant impact on the hyperacusis.

Also to add, where she had added slight amplification to the mid tones, it created a slight static sound. I wore the hearing aid for all my waking hours for just over a year and the slight static sound, in my opinion, acted like sound therapy which helped desensitise my brain from the tinnitus and gradually lower the hyperacusis.

I did consider that this was a placebo effect when I first started to wear the hearing aid but there were times at home where i would suddenly have bouts of hyperacusis whilst wearing the hearing aid and then my wife would point out the aid was hanging out. It was not placebo

Interesting reading your story. I have unilateral severe hearing loss from 4000 Hz. My hearing aid is useless, really. The idea of boosting the mid frequencies to calm the reactiveness is something to consider. It may be the same as promoting mid level sound enrichment. White noise, for instance, will aggravate me. No point in amplifying high frequencies or matching those with sound enrichment.

 

[Sammy0225]

Very interesting thread... I also have reactive tinnitus with 3-4 tones (normally) that react to cars sounds, fans, shower, etc. but when spiking I have 5-6 tones going crazy (like now). But in my case, it is directly linked to my hyperacusis... After a setback in hyperacusis, I have new tones added for some weeks before they subside. When my hyperacusis was 75% better, the tinnitus was less reactive. So I learned that I need to use earplugs whenever I go out (for now at least) and gradually decrease the «dB protection» of the earplugs until I hope the hyperacusis goes away and the tinnitus won't be reactive anymore.

May I ask how are you using sound therapy? Are you using white noise with the hearing aids?

Sorry for my English.

The reactiveness was definitely annoying.

I isolated myself from the outside world for many months until my ears began to relax. I ordered food online. I stopped going to social events and I gave my ears a break from anything remotely loud. When I noticed my nerves had calmed down and most of the tones had faded, that is when my ears started accepting sound therapy, and recovery started.

I now have a reactive hiss. The sound therapy I'm using is running the tap water several times a day at a calm stream.

I personally feel if you are experiencing more tones and more reactiveness, then you really need to take a step back from everything. Yes, it will suck living like a hermit for a year or so but @Darrenb111 is proof that once you heal, you can go back to a livable life. I rather give up a year of my life than a lifetime of having this horrible condition.

 

[Diego LR]

Your situation sounds very similar to mine when i developed a sound sensitive tinnitus and hyperacusis from a suspected inner ear infection.

I'm happy to say that now, 25 months later, my hyperacusis has completely gone and I am fully habituated to my now, a lot less intrusive, tinnitus.

My thoughts on what worked for me have been mentioned by some already. I used ear protection at the beginning out of fear but gradually weaned myself off little by little. Sounds like running water, cutlery, my baby daughter's high pitched giggles were horrendous and I would still wear silicon eaplugs, not to remove sound altogether, but to lower the dB of life around me. I saw a private audiologist (I am from the UK and the NHS service is terrible) who issued me with a hearing aid that adjusted certain levels which I can go into more detail on if needed but it had the net effect of playing a low static sound in my problem right ear.

Over the course of 1 year of wearing the hearing aid continuously, outside of sleep, my hyperacusis gradually healed and I can comfortably be in loud environments with no sensitivity or reaction to my tinnitus.

I'm currently typing on my phone as I have caught the flu from my kids! Illness used to be a big player in tinnitus level but it's only slightly raised at present.

Happy to add more, I'll keep an eye on this post. I hope this helps in some way and gives you confidence that hyperacusis can be eased.

Thanks for sharing your positive story. I am also in the UK. Who is your audiologist?

 

[Jupiterman]

The sound therapy I'm using is running the tap water several times a day at a calm stream.

Can you give more details on this, length of time etc.?

Also, did you expose to normal sounds around the house, including kitchen and bathroom?