Can It Get Any More Worse? Bad Reactive Tinnitus & Hyperacusis — Trouble Coping with External Noises

[Krolo]

So I really thought it could be rock bottom last week. Like I did the week before that. And the week before that.

My tinnitus is super reactive in a sinister way. If I am in silence my tinnitus gets higher to extreme levels. If I am around any sound my hyperacusis gets triggered with muscle pain all over my head and what I could describe as a cat clawing on your brain, which bites me in the ass day after with my tinnitus being even louder the day after.

I also have reactive tinnitus that just gets worse and reacts with about an octave higher and double the sound of whatever tone hits the mark.

I really have no clue how to cope with this, I do not feel particularly anxious or depressed, I am just in constant pain.

Seems like only way I can live any life is being stuck in a room with my tinnitus and no sounds... Because they just come back and bite me...

How am I supposed to climb out of this?
White noise, pink noise, basically any noise triggers something!

 

[Wolfears]

I don't really have any advice you can use but @Michael Leigh was able to cure his Hyperacusis...maybe he will chime in?

 

[Basshell]

Sorry my friend. There are no answers. Feel your pain.

 

[Krolo]

I don't really have any advice you can use but @Michael Leigh was able to cure his Hyperacusis...maybe he will chime in?

Think he already wrote up to me once.Not sure that there are any solutions right now though. Also not sure clonazepam won't just make everything even worse

 

[another sean]

Seems like only way I can live any life is being stuck in a room with my tinnitus and no sounds... Because they just come back and bite me...

How am I supposed to climb out of this?
White noise, pink noise, basically any noise triggers something!

this is my life. couldn't even use air conditioner and had to sit in a a 100 degree room all through summer. Had to add a power cut off switch to my refrigerator so I can cut it off when I'm in the kitchen. My advice is protect your ears, but not constantly. wear ear muffs and ear plugs when going out so you don't worsen your tinnitus. for me, it started to become a little less reactive after 2 years. my biggest mistake was going out too soon. it raised my baseline when my hearing wasn't ready.

 

[Krolo]

this is my life. couldn't even use air conditioner and had to sit in a a 100 degree room all through summer. Had to add a power cut off switch to my refrigerator so I can cut it off when I'm in the kitchen. My advice is protect your ears, but not constantly. wear ear muffs and ear plugs when going out so you don't worsen your tinnitus. for me, it started to become a little less reactive after 2 years. my biggest mistake was going out too soon. it raised my baseline when my hearing wasn't ready.

Hey Sean, thanks for the tips again Sadly I have so many sounds that are inside the house that trigger my Reactive T. The other option is to be with protection on my head but then I have the roaring tinnitus in my brain.... It is so fucked right now. I can´t get my head around how I am supposed to treat it

 

[Johan_L]

Hey Sean, thanks for the tips again Sadly I have so many sounds that are inside the house that trigger my Reactive T. The other option is to be with protection on my head but then I have the roaring tinnitus in my brain.... It is so fucked right now. I can´t get my head around how I am supposed to treat it

Melatonin for sleeping?

Also, keep in mind: As my ENT says "Prognosen är god".

One month after my latest noise trauma I could not do anything. I could not use the water faucet unless I had double protection, I could not be in by home since if my neighbour opened her warddrobe or something I got pain. I could not stand to use earplugs all day when at home as the T drove me crazy so I went to my work office on weekends and evenings. (it's empty after 17 and dead quiet).

Two months after I could ride buses and subways (though always with earplugs and earmuffs in hand).

Now its three months since the noise trauma and I'm somewhere inbetween because I was stupid enough to eat at a restaurant three weeks ago

...

 

[another sean]

Hey Sean, thanks for the tips again Sadly I have so many sounds that are inside the house that trigger my Reactive T. The other option is to be with protection on my head but then I have the roaring tinnitus in my brain.... It is so fucked right now. I can´t get my head around how I am supposed to treat it

I know. I had to make a lot of changes to my home. My computer is in my closet. I had to order custom 4 inch sound proof panels for my bed room windows. I went through 4 air conditioners to find the quietest one. Just have to make changes little by little to make your home a comfortable place for your hearing for now.

 

[Krolo]

Melatonin for sleeping?

Also, keep in mind: As my ENT says "Prognosen är god".

Hey fellow Swede!

Yeah I have been eating melatonin for about 3 months since the latest noise trauma. Things are not getting better so I am kinds losing faith about getting better since my T is reacting so hard together with my H. Haven't been working for since then since I literally can't be around any noise.. Think my ears react to as low as 40dB... Dunno how much of this is a mental thing but the ear pain isnreal nonetheless...
Thanx for the cheer up and your story. Do take care of your ears!

 

[Acufénico]

I know. I had to make a lot of changes to my home. My computer is in my closet. I had to order custom 4 inch sound proof panels for my bed room windows. I went through 4 air conditioners to find the quietest one. Just have to make changes little by little to make your home a comfortable place for your hearing for now.

Hey Sean,

Reading your story, it looks a lot like mine. My T is also very reactive / sensitive to sound. I can not be near my computer at home or turn on the air conditioning without my T spike, I have a hard time watching a movie with sound ... And like you, this sensitivity to sound began after a long night of use headphones at low volume.
I am seeing an audiologist and she does not want to start TRT with me, she says that in my case it would not be effective, she proposes a guided cognitive therapy. I'm confused. My biggest problem is my work, I'm surrounded by computers and air conditioning, when I get home there are nights I can not sleep.
Any advice for day to day? I would love to listen to music again or use my computer without my tinnitus going crazy.
My hearing loss is at 6000hz, I have tried to equalize the sound by reducing the decibels of that frequency as much as possible but my tinnitus reacts almost the same
Now I live alone and I notice every day farther from the world, isolated.
How do you live like that?

Hug everyone.

 

[another sean]

Hey Sean,

Reading your story, it looks a lot like mine. My T is also very reactive / sensitive to sound. I can not be near my computer at home or turn on the air conditioning without my T spike, I have a hard time watching a movie with sound ... And like you, this sensitivity to sound began after a long night of use headphones at low volume.
I am seeing an audiologist and she does not want to start TRT with me, she says that in my case it would not be effective, she proposes a guided cognitive therapy. I'm confused. My biggest problem is my work, I'm surrounded by computers and air conditioning, when I get home there are nights I can not sleep.
Any advice for day to day? I would love to listen to music again or use my computer without my tinnitus going crazy.
My hearing loss is at 6000hz, I have tried to equalize the sound by reducing the decibels of that frequency as much as possible but my tinnitus reacts almost the same
Now I live alone and I notice every day farther from the world, isolated.
How do you live like that?

Hug everyone.

Hi @Acufénico ,

Well when I leave my home I always wear ear plugs and ear muffs. I know it will make my tinnitus spike when I wear them, but I also know that if I protect my hearing when outside, that I won't make it permanently worse and when I get home and take out the ear plugs and take off my ear muffs that it will calm back down and not affect my sleep. Now I work from home so I dont have the same issue where you have to go to a office environment with other noises but if I were, I would go to work with ear plugs and ear muffs and try ask management if they could put in a quieter location so that maybe you'd only need ear plugs.

I cant, or shall I say shouldn't watch movies with sound. Ive been watching movies and tv with subtitles for the past 3 years. I'm used to it now. If listening to movies only spikes your tinnitus or is it raising your baseline as well? Another suggestion for computers is to find a laptop without a fan. I use a Apple MacBook. they have no fans and no spinning hard drive. They are completely silent like a mobile phone. I also had to change my car and had to get a EV. that helped a lot when traveling. What I do with my air conditioner is I only have it installed in my living room. So when im in my bedroom, I will run it in the living room. after a while the air will reach my bedroom. Its better than nothing.

With listening to music, I have thought about using EQ but they dont cut out the frequency completely. It only lowers it. what you want is a low pass filter. that will cut out the frequency range completely. Another way I've been able to listen to music is by using a vinyl record and using a tooth pick and paper cone as the needle. So there is no electricity and the sound is lower frequency because of the wood in the tooth pick like so.

I understand your isolation. My nights are filled with silence. I cant use a phone either. And it can feel isolating at times. But you have to find ways to keep your mind busy. start a new project. be creative in something. set a new goal in life. Video games is another outlet when at home as well as owning a pet for company.

 

[Acufénico]

Hi Sean,

I appreciate your answer very much. I take note of all your advice, fortunately, now I can work from home some days of the week, this helps a lot as you know.

If listening to movies only spikes your tinnitus or is it raising your baseline as well?

My tinnitus just spike but the baseline the next day stays the same.
Your passive laptop is a very good solution. I have a PC with a powerful graphics card, the tower is outside my room, behind the door to reduce noise ... I think a passive laptop is the best for our situation.

With listening to music, I have thought about using EQ but they dont cut out the frequency completely. It only lowers it. what you want is a low pass filter. that will cut out the frequency range completely. Another way I've been able to listen to music is by using a vinyl record and using a tooth pick and paper cone as the needle. So there is no electricity and the sound is lower frequency because of the wood in the tooth pick like so.

Interesting

I understand your isolation. My nights are filled with silence. I cant use a phone either. And it can feel isolating at times. But you have to find ways to keep your mind busy. start a new project. be creative in something. set a new goal in life. Video games is another outlet when at home as well as owning a pet for company.

Thanks Sean, I'm an engineer software and some of my hobbies require a lot of time with PC and sound through speakers, now everything has changed. There are some things that we can't do anymore but we can do many other things, most of the time I am alone, damn tinnitus ... but I still have friends.

I hope you have a good day today.

 

[another sean]

Hi Sean,
My tinnitus just spike but the baseline the next day stays the same.
Your passive laptop is a very good solution. I have a PC with a powerful graphics card, the tower is outside my room, behind the door to reduce noise ... I think a passive laptop is the best for our situation.

Thanks Sean, I'm an engineer software and some of my hobbies require a lot of time with PC and sound through speakers, now everything has changed. There are some things that we can't do anymore but we can do many other things, most of the time I am alone, damn tinnitus ... but I still have friends.

Hi @Acufénico , I also use a PC for gaming and put the tower outside my room using 15ft USB and HDMI cables. That definitely will work well. I use my MacBook mainly when browsing TT in the late hours in bed My 13" iPad also works well.

My biggest challenge is gardeners. I have to use a security camera to monitor their movements on my iPad so when they get too close to my window with a lawn mower, I have to take cover in a sound proof box or a mountain of pillows.

I've got friends too, I think, but they don't visit much anymore because my tinnitus prevents me from going to noisy places. So its a lot of texting now ....

 

[Acufénico]

Hey Sean,

Hi @Acufénico , I also use a PC for gaming and put the tower outside my room using 15ft USB and HDMI cables. That definitely will work well. I use my MacBook mainly when browsing TT in the late hours in bed My 13" iPad also works well.

Good job

I have the same problem with gardeners and f.ck... blowing leaves, lawn mower.
Yesterday I visited friends in his house and they removed the music when I asked him
It was at minute 1 after entering home ..

I don't like to be caged so long at home ...
Hope.. Sean

 

[Natashasewast]

Im sorry to hear that you are living the exact same nightmare as me. I could have written this myself. It is now 4 months with severe T and H. In this time my symptoms have progresses and continue to do so. I am not even able to leave my home because of it or talk on the phone, watch television etc; The sound of my own voice perpetuates my condition. The ear pain/burning is unbearable. Ear plugs seem to only aggravate it. I keep praying that with time i can improve.

 

[Natashasewast]

this is my life. couldn't even use air conditioner and had to sit in a a 100 degree room all through summer. Had to add a power cut off switch to my refrigerator so I can cut it off when I'm in the kitchen. My advice is protect your ears, but not constantly. wear ear muffs and ear plugs when going out so you don't worsen your tinnitus. for me, it started to become a little less reactive after 2 years. my biggest mistake was going out too soon. it raised my baseline when my hearing wasn't ready.

wow your hyperacusis is as severe as mine, i cannot believe you are still suffering three years later.....................is there any hope for us?

 

[Emperor-Drax]

@another sean

May I ask how is it you need to watch movies or TV shows with subtitles/CCs (I presume on mute) to prevent a T spike, yet you're still able to listen to music, albeit in a limited capacity?

 

[another sean]

@another sean

May I ask how is it you need to watch movies or TV shows with subtitles/CCs (I presume on mute) to prevent a T spike, yet you're still able to listen to music, albeit in a limited capacity?

I have problem with speakers and electrical noise. I still have some issues with acoustic analog sound but not nearly as much. so thats why I can handle analog sound from a vinyl record with no speakers involved, albeit in very limited capacity. I suspect I got my tinnitus from electrical noise because for 2 weeks, before onset, I was wearing headphones all day every day even with no sound, hooked up to my computer and my ears were picking up the faint electrical noise that headphones produce. its like when you dont play any music but you turn up the volume all the way you and you hear that hissing noise? thats what I think damaged my ears after 2 weeks of non stop exposure to it through headphones.

 

[another sean]

wow your hyperacusis is as severe as mine, i cannot believe you are still suffering three years later.....................is there any hope for us?

it has improved slightly over the years. I can handle my refrigerator now and AC at a distance. big improvement for me. but still need ear plugs and ear muffs when I go out at all times. so hopefully there will be further improvement in another 3 years. I just gotta stay focused and not let it get worse and be vigilant and protect my hearing until then.

Im sorry you are going thru the early stages of it. when I use ear plugs my tinnitus rises as well but I still do it so that I protect my hearing because in the end, it will drop back down. And yeah, I still cant talk on the phone either. well I did actually for a few minutes a few times. it defiantly spikes but didn't cause permanent damage but I won't risk it further unless its an emergency. I know it can be really confining not being able to talk on the phone. I miss hearing peoples voices. I feel you will see improvement. just try your best not to let it get worse. protect your hearing like as if you were protecting your child and just be vigilant when outside.

 

[Natashasewast]

Thanks for your reply. I have to say i am really struggling with this condition. The H has gotten worse in a very short period of time and i have been protecting my ears diligently. Of course living in suburbia there is noise i cannot control for example last night at 11pm they let off firecrackers down the road. Of course i woke up this morning with yet another setback. How you have survived so long i have no idea. You are a warrior for sure. I on the other hand am unsure if i will last this long

 

[Elfin]

Hi @another sean i am in a similar boat to you with protection and modifying the home to avoid certain sounds. I also protect my hearing around other people and withint he gone for certain noises (dog barks, etc).

I want to get out of this though as find it very limiting. I wasn't wondering what was th noise exposure which raised your baseline? I want to be less reliant on protection and to go more places but I am being held back by concerns that the noise will increase

 

[another sean]

Thanks for your reply. I have to say i am really struggling with this condition. The H has gotten worse in a very short period of time and i have been protecting my ears diligently. Of course living in suburbia there is noise i cannot control for example last night at 11pm they let off firecrackers down the road. Of course i woke up this morning with yet another setback. How you have survived so long i have no idea. You are a warrior for sure. I on the other hand am unsure if i will last this long

@Natashasewast in the beginning I was making H worse because I was over protecting at home to the point where squeaks in my hardwood floor would be irritating. so I tried to allow some sounds in at home like when doing the dishes. I also installed a custom sound barrier for my bed room windows so that I don't have to worry about wearing ear muffs in my bed room or get surprised when a truck or gardeners next door makes a lot of noise. You still have time on your side to see improvement at least since onset was only this year. A lot can improve within the first year.

 

[another sean]

Hi @another sean i am in a similar boat to you with protection and modifying the home to avoid certain sounds. I also protect my hearing around other people and withint he gone for certain noises (dog barks, etc).

I want to get out of this though as find it very limiting. I wasn't wondering what was th noise exposure which raised your baseline? I want to be less reliant on protection and to go more places but I am being held back by concerns that the noise will increase

Hi @Elfin , in the beginning it was a few things. I was riding in a car with someone and they answered a phone call on speaker phone. I was wearing ear plugs and ear muffs and it still raised my base line. That was the first major increase. Then the second one was when I was on a photoshoot and I got locked outside of the home and then suddenly the gardeners next door fired up their lawn mowers. So I was trapped. I couldn't get in to a car, nothing. I had to patiently wait there and text people inside to let me back in the house. Now, I feel that if I was in those situations again, it may not raise my base line for 2 reasons. One is my reactiveness has lessened over the past 2 years because I started working from home instead and didn't put my self in situations like walking next to traffic. Secondly, I have better ear muffs now than I did back then and that's allowed me to go to more places and avoid major spikes. But I know the ear muffs are not the only reason as I have drooped things at home that don't spike my tinnitus at all now, that would have spiked it for a week in the beginning. So that makes me feel being protective for now is helping and will hopefully lead to further improvements and make my less confining in the future. Is your tinnitus reactive?

 

[Nick M]

So I really thought it could be rock bottom last week. Like I did the week before that. And the week before that.

My tinnitus is super reactive in a sinister way. If I am in silence my tinnitus gets higher to extreme levels. If I am around any sound my hyperacusis gets triggered with muscle pain all over my head and what I could describe as a cat clawing on your brain, which bites me in the ass day after with my tinnitus being even louder the day after.

I also have reactive tinnitus that just gets worse and reacts with about an octave higher and double the sound of whatever tone hits the mark.

I really have no clue how to cope with this, I do not feel particularly anxious or depressed, I am just in constant pain.

Seems like only way I can live any life is being stuck in a room with my tinnitus and no sounds... Because they just come back and bite me...

How am I supposed to climb out of this?
White noise, pink noise, basically any noise triggers something!

Wow brother, I wish I could say I feel you pain but I definitely don't. I can function fine outside and my T fluctuates day to day where some days it's a 2 some days its a 11 some days I have slight H with no T some days I have no H or T...

For what it's worth, I'm in the group that believes you should get as much noise exposure throughout the day as possible. At least for T... Studies have shown that people with no hearing loss who have used earplugs for a prolong period of time have induced T. This backs up the studies that say T is the brain's response to no or very little noise stimuli due to damaged hair cells etc.. Personally for me, the days where I feel my H is more intense, I purposely go into crowded noisy environments. Not loud environments, just places with a lot of background noise like restaurants. At first it's uncomfortable but after a little while, your ears adjust to the noise and doing this knocks out my H for several days believe it or not. However, not everyone has the same ear damage so I can't speak for everyone. The theory I have for my case is that some of my hair cells are damaged but not dead. If I don't stimulate them at all, my T gets much worse. If I constantly stimulate them with some noise, they send some signals back to the brain and this calms my T. Anyway, I hope your symptoms improve and your quality of life improves.

T and H are so neglected in the medical world that I wonder if there will ever be any advances in this area. The medical and research fields mostly seem to focus on HIV, Cancer, Alzheimer and Heart disease for the most part. They seem to be happy with the advances (or not) when it comes to the sense of hearing. They stick an amplifier in your ear developed in 1890 if your can't hear well and if you're lucky and have good insurance, destroy your ear by drilling it out and sticking a electrode with a handful of sensors into your ear that has 20,000 hair cells and call it a miracle. I look at how detailed my personal work is in computer programming where we spend countless hours coding complex structures and algorithms that equal hundreds of thousands of lines of code and yet all a doctor can do is drill out your cochlea and string an electrode in it. I don't like to be pessimistic about the medical field but I honestly believe they are way behind the times, not very detail oriented and more interested in money than anything. Just my personal view...

 

[Johan_L]

@Natashasewast in the beginning I was making H worse because I was over protecting at home to the point where squeaks in my hardwood floor would be irritating. so I tried to allow some sounds in at home like when doing the dishes. I also installed a custom sound barrier for my bed room windows so that I don't have to worry about wearing ear muffs in my bed room or get surprised when a truck or gardeners next door makes a lot of noise. You still have time on your side to see improvement at least since onset was only this year. A lot can improve within the first year.

What kind of sound barrier did you install?

 

[another sean]

What kind of sound barrier did you install?

This one https://www.acoustimac.com/soundproofing-custom-panels

 

[another sean]

How is everyone in this thread doing? Care to give a 3 year update?

As for me, I can now handle everything in my kitchen, except the garbage disposal, without protection. Standing next to the washing machine is no problem. Standing next to the AC is no problem. I can also go outside at night, as long as there are no cars driving right past me, without protection but I only do this when taking out the trash and then scurrying back into my cave. I can also use a phone now. It does cause a very mild spike but calms down soon after. I think human speech is ok thru speakers. But music is still off limits.

I do think overall my base line has gone up, but at the same time it's not as reactive and I don't care quiet as much when it spikes (habituated). So when people ask if my tinnitus is better, it's hard to explain.

 

[IntotheBlue03]

How is everyone in this thread doing? Care to give a 3 year update?

As for me, I can now handle everything in my kitchen, except the garbage disposal, without protection. Standing next to the washing machine is no problem. Standing next to the AC is no problem. I can also go outside at night, as long as there are no cars driving right past me, without protection but I only do this when taking out the trash and then scurrying back into my cave. I can also use a phone now. It does cause a very mild spike but calms down soon after. I think human speech is ok thru speakers. But music is still off limits.

I do think overall my base line has gone up, but at the same time it's not as reactive and I don't care quiet as much when it spikes (habituated). So when people ask if my tinnitus is better, it's hard to explain.

Hey @another sean, I don't know about the others but I am 2 months in with severe centralized high frequency tinnitus that is reactive and your encouraging post is exactly what I was looking for.

So the reactivity has gone for you? Curious how long that has been the case?

The reactivity is the worst part for me and I would give absolutely anything to have the ability to mask. It is killing me.

If you have any reactivity tips and happen to see this I would appreciate your response.

 

[another sean]

Hey @another sean, I don't know about the others but I am 2 months in with severe centralized high frequency tinnitus that is reactive and your encouraging post is exactly what I was looking for.

So the reactivity has gone for you? Curious how long that has been the case?

The reactivity is the worst part for me and I would give absolutely anything to have the ability to mask. It is killing me.

If you have any reactivity tips and happen to see this I would appreciate your response.

Hey @IntotheBlue03, so my reactivity hasn't completely gone but it has improved a lot. It takes much louder sounds to cause a reaction compared to when it did in the beginning. Even creaks in my hardwood floors were a problem at first. But now appliances are fine. So there is hope. Even after years, there is still room for improvement.

I know a lot of people try to mask the sound but it's hard to do when you have reactive tinnitus. Noise machines are a no go. I went in the opposite direction. I wore earplugs a lot and drowned myself in the tinnitus noise to the point where I got used to it really fast. Like hours at a time a couple times a week.

The best thing I think you can do is to not make your tinnitus worse by avoiding loud noises and wearing earplugs and/or earmuffs in unavoidable loud situations. And if you do encounter a really loud noise unexpectedly, take some NAC as soon as possible. If you are planning to encounter loud noise, like going to the dentist, take NAC ahead of time. It can help protect your hearing from whats been said here and in clinical trials.

It's still really early for you so there is potential for lots of improvement still.

 

[IntotheBlue03]

Hey @IntotheBlue03, so my reactivity hasn't completely gone but it has improved a lot. It takes much louder sounds to cause a reaction compared to when it did in the beginning. Even creaks in my hardwood floors were a problem at first. But now appliances are fine. So there is hope. Even after years, there is still room for improvement.

I know a lot of people try to mask the sound but it's hard to do when you have reactive tinnitus. Noise machines are a no go. I went in the opposite direction. I wore earplugs a lot and drowned myself in the tinnitus noise to the point where I got used to it really fast. Like hours at a time a couple times a week.

The best thing I think you can do is to not make your tinnitus worse by avoiding loud noises and wearing earplugs and/or earmuffs in unavoidable loud situations. And if you do encounter a really loud noise unexpectedly, take some NAC as soon as possible. If you are planning to encounter loud noise, like going to the dentist, take NAC ahead of time. It can help protect your hearing from whats been said here and in clinical trials.

It's still really early for you so there is potential for lots of improvement still.

Thanks @another sean, I really appreciate the feedback and am happy you are doing better. You are correct I stopped wearing headphones and/or earplugs about a few weeks ago and because of the reactivity I've been listening to my tinnitus constantly so I hope that means something in the way of habituation even though it's only been a couple months.

Can you tell me when you were able to listen to music or TV on low again? I'm hoping it was sooner than a couple years I am still in silence at home most of the time.