Hyperacusis Can Get Better! Gotta Retrain Your Reptile Brain!

[Wrfortiscue]

All pretty solid advice here.

 

[Chronumbra]

I currently experience "reactive" tinnitus with mild hyperacusis and am trying to figure the best way to go about treating it. Of course, there's properly conflicting information... On the one hand, there are positive stories singing praises for sound therapy and, on the other hand, there are people who tried the very same thing and say they cannot even sit in their own home without the feeling of daggers in their ears.

My tinnitus/hyperacusis came from noise overexposure while writing music. I do not and have not experienced any ear pain. At worst, there have been pretty awful tension headaches coupled with annoyance and fear of all sound. Nowadays, digital audio spikes my tinnitus and I startle at the sound of dishes and silverware clanking. So I'm mild, all things considered. I'm 2 and 1/2 months in and I just want to find out how to get better instead of becoming catastrophic like some others around here...

I say this kindly but with confusion and frustration: How the fuck does one person experience full recovery from sound therapy treatment whilst others collapse into painful hearing at the lowest human hearing thresholds from the very same treatments?

I do not understand. Frankly, between the conflicting advice from over-confident audiology professionals and the utterly jaded horror story victims, I almost feel like it would be easier to have my entire auditory system surgically removed and disabled.

 

[MindOverMatter]

I currently experience "reactive" tinnitus with mild hyperacusis and am trying to figure the best way to go about treating it. Of course, there's properly conflicting information... On the one hand, there are positive stories singing praises for sound therapy and, on the other hand, there are people who tried the very same thing and say they cannot even sit in their own home without the feeling of daggers in their ears.

My tinnitus/hyperacusis came from noise overexposure while writing music. I do not and have not experienced any ear pain. At worst, there have been pretty awful tension headaches coupled with annoyance and fear of all sound. Nowadays, digital audio spikes my tinnitus and I startle at the sound of dishes and silverware clanking. So I'm mild, all things considered. I'm 2 and 1/2 months in and I just want to find out how to get better instead of becoming catastrophic like some others around here...

I say this kindly but with confusion and frustration: How the fuck does one person experience full recovery from sound therapy treatment whilst others collapse into painful hearing at the lowest human hearing thresholds from the very same treatments?

I do not understand. Frankly, between the conflicting advice from over-confident audiology professionals and the utterly jaded horror story victims, I almost feel like it would be easier to have my entire auditory system surgically removed and disabled.

I can only speak for me myself, and this is my experience. But I do understand your situation fully as I've been there...

Sound therapy comes in many shapes, and can be done in many ways. After probably about 3-4 months in, I understood that I had to back off if I was listening to sounds that annoyed - even at the lowest volume.

Personally I never could stand, and still don't prefer, white noise. A more soft pink noise would feel better, to me. I couldn't listen to any music at this point, even at the lowest volume. Everything was distorted, and tinnitus reactive and feeling sensitive with those "eeeees" overriding any auditory input. Sinks, frying stuff, air vents, cars, bags, clothes, sheets, everything and anything was an issue soundwise.

Over time, with counselling, I used many months just to tweak with sounds and find something that bothered me less, and that was sounds that I could associate with something positive. I could still react to it, but given this was barely audible sound I felt comfortable that this never would hurt my ears. And to me it didn't. "My Guard" came down, and anxiety lessened/sleep got better.

I combined this type of sound therapy with doing things I liked and looking at new hobbies (like photography), to get my mind off all the negative focus I had towards the situation for a long time due to a feeling of sort of "a lost life".

With acceptance, and integrating CBT in combination with the above, it slowly got better and my tolerance increased. With increased tolerance, the reactiveness also got way better over the span of a couple of years.

Personally I've used nature a lot. Spending time in nature, and using natural, ambient sounds is to me a vital factor for healing. It stimulates the vagus nerve, and increases my well being. That being said, there are still days were I have reactiveness, and my ears react to wind and such, but it doesn't bother me much if it happens because I know by now it's temporary.

This is a marathon, and it's a non-linear road, but there is hope. Imo, getting anxiety and the fear of sound, and lessen stress to a minimum, is the first step. With this under control, often comes better sleep too - who many struggle with. I would recommend to team up with a counsellor for a minimum of 6 months that is skilled with tinnitus/hyperacusis and CBT, but it has to be a good one that you have chemistry with. This can you help a lot in this phase you are in.

There is no quick fix to this, so one has to be patient - and don't lose faith.

 

[Aaron91]

I currently experience "reactive" tinnitus with mild hyperacusis and am trying to figure the best way to go about treating it. Of course, there's properly conflicting information... On the one hand, there are positive stories singing praises for sound therapy and, on the other hand, there are people who tried the very same thing and say they cannot even sit in their own home without the feeling of daggers in their ears.

My tinnitus/hyperacusis came from noise overexposure while writing music. I do not and have not experienced any ear pain. At worst, there have been pretty awful tension headaches coupled with annoyance and fear of all sound. Nowadays, digital audio spikes my tinnitus and I startle at the sound of dishes and silverware clanking. So I'm mild, all things considered. I'm 2 and 1/2 months in and I just want to find out how to get better instead of becoming catastrophic like some others around here...

I say this kindly but with confusion and frustration: How the fuck does one person experience full recovery from sound therapy treatment whilst others collapse into painful hearing at the lowest human hearing thresholds from the very same treatments?

I do not understand. Frankly, between the conflicting advice from over-confident audiology professionals and the utterly jaded horror story victims, I almost feel like it would be easier to have my entire auditory system surgically removed and disabled.

Tbh the answer to this is pretty straightforward. Some people heal IN SPITE of the fact they are receiving damaging sound "therapy". Others, unsurprisingly, get worse. I myself am one of those people. Ask all these auditory "professionals" to show you a single PLACEBO-controlled, blinded, clinical trial that shows sound therapy works for hyperacusis patients. There isn't one. One needs to remember that sound therapy was something conceived for tinnitus (hardly a therapy for that either) and was then retrofitted to work for hyperacusis. It's a scam.

 

[Michael Leigh]

I say this kindly but with confusion and frustration: How the xxxx does one person experience full recovery from sound therapy treatment whilst others collapse into painful hearing at the lowest human hearing thresholds from the very same treatments?

Hi @Chronumbra.

I understand the confusion and frustration that you feel, especially if you have been reading about tinnitus, reactive tinnitus, hyperacusis, hyperacusis with pain, and for good measure I'll mention noxacusis. All this can seem quite overwhelming and rightly, you're probably thinking will I ever recover? My advice is try and simplify everything which will start to have a positive impact on your mental and emotional wellbeing and thus, your situation won't seem so daunting.

You have noise-induced tinnitus. This condition is often caused by exposure to loud noise or listening to audio through headphones, earbuds or headsets at too high a volume. Your oversensitivity to sound is called hyperacusis. This comes in different levels of severity and no two people will experience it the same. Some people experience pain hyperacusis which can be very debilitating. For now, just accept that you have noise-induced tinnitus with hyperacusis. Reactive tinnitus is not a known medical condition. Most people who say they have it actually have noise-induced tinnitus. The underlying cause of reactive tinnitus is hyperacusis or a sub-net of it.

The treatment for noise-induced tinnitus with or without hyperacusis and reactive tinnitus, is sound therapy and counselling with an audiologist that specialises in tinnitus and hyperacusis management. Since you have had noise-induced tinnitus with hyperacusis since 01/2020, my advice is to make an appointment at ENT for tests on your auditory system, followed by a referral to an audiologist that specialises in tinnitus and hyperacusis treatment.

Noise-induced tinnitus can improve with or without seeking professional treatment, usually within the first 6 to 18 months from onset. However, you have had it for quite a while now and you are still having difficulty coping with it. Therefore, my advice is to be seen at ENT, followed by a referral to an audiologist.

I advise you not to listen to audio through headphones, earbuds, headsets, AirPods, noise-cancelling and bone conduction headphones even at low volume, as you risk making your tinnitus and hyperacusis worse.

Please go to my started threads and read: The Habituation Process, How to Habituate to Tinnitus, Will My Tinnitus Get Worse? Sound Enrichment and White Noise Generators, Hyperacusis, As I See It. Tinnitus and the Negative Mindset, Acquiring a Positive Mindset.

Please click on the links below and read my posts.

All the best,
Michael

New to Tinnitus, What to Do? | Tinnitus Talk Support Forum
Tinnitus, A Personal View | Tinnitus Talk Support Forum

 

[Jammer]

I've thought about removing my auditory system as well, until realizing that this would probably not eliminate my tinnitus and most likely make it worse.

 

[GeorgeLG]

The spectrum of what is experienced here is huge and no 2 people are the same. It only makes sense that what works for one, will work for some others, but not all, maybe not even most. Every experience is still valuable, a tool that gives us more options. In the end, as stated, we must listen to our bodies and go at a measured pace until we know how we will react.

I, for instance, started off really fighting hearing protection because I read so many times that it was our enemy. I kept having nasty exposures like straight pipe cars at the gas station, smoke alarms going off in my house, fireworks outside, Alexa and full volume weather alerts or the glass plate falling off a high counter and breaking on the tile and I was in a rinse and repeat constant pain cycle. I also tried some low volume masking sounds at night like from a fan but that made things worse, I liked silence at night better. At that point I said F it and listened to my body, dropped the masking sounds and protected more and things just got better. After I settled down, I started letting off and when exposures came, then the reaction was less and lasted a shorter time. Concerts, air shows, the shooting range, screeching woodworking tools. No fucking way for this cowboy but as I am regaining the simple things in life - some TV, my music recording at modified volumes/techniques, a restaurant once in a while, that's good enough for me. I don't know how many things there are that I will keep off limits forever, I'll let my body tell me what I can handle and you all should too.

So I believe that one size does not fit all and everyone needs to figure out what is going to work and be safe for them. I also believe that there are many wonderful and talented doctors out there but you may have to go through quite a few to find someone who will listen to your situation and can help you. Most people have real, physical processes that have gone wrong - hair cell death, internal ear muscle abnormalities, damage from infections or ototoxic drugs, etc. Everyone here really hears these sounds, feels this pain and suffers. Even in what must be the very few cases of true hypochondria, or a real case brought on by extreme stress as exists in almost every medical condition, the person suffers and needs help. Dismissing any patient who says they suffer because you don't know what to do is malpractice, especially if the patient does have emotional issues because that can be an even more dangerous situation, not a license to spew condescending, dismissive crap.

I also believe that every single one of us has an emotional component to our condition. It can be anything from the entire cause to a small factor but this is true in every medical and mental condition since the beginning of time. Everybody here can benefit to some extent from mastering some new skills that help us calm down, stop negative reinforcing fear and anger cycles, catastrophic what if thinking and actually causing some rewiring of the brain to help us suffer less. Turn down the feedback cycle and distract our brains with something more positive. Does this cure everyone? No. Am I saying we all need to get our heads right because we all made it up? No. I am saying that after 30 years of research and personal experiences for myself and others around me, I have seen a profound positive impact on many medical conditions, even the suffering of unspeakable pain for my wife as she lay dying in the hospital from cancer. These techniques even helped her where there was no more pain medicine available. The nurses would be brought to tears and ask me later, what were you doing, how did you put her peacefully to sleep? Well, the open minded ones did. Working on your emotional reaction to this condition and learning some skills to distract away from this beast carries very little risk, it's not aggressive sound therapy or risky operations. It's essentially risk free and there are many success stories. Please don't get so dug in by feeling that these kinds of discussions dismiss your suffering or imply that you are mentally weak as many have articulated here and incorporate some of this into your coping routine. I know that your suffering is real and I know that you are frustrated, you have been dismissed and feel like a huge portion of your life has been robbed from you but it has worked for me and I am not cured, but my life is better.

George

 

[ShaunR]

Sorry you feel this way, but people who are success stories usually don't come back because they have moved on with their life.

Assuming that they leave, for the reason of people not agreeing with them is highly unlikely.

Best of luck.

Unfortunately, this isn't always the case. When I was at my lowest (I'm talking rock bottom, ready to leave this mortal coil low) I promised myself if I got better, I'd come back to the forums and tell my success story and what worked for me. I did get better, I still am better. I'm living my life and grateful everyday for it.

I did come back to the forums and I did try help people. However, it became apparent very quickly that it wasn't welcome. My thoughts and opinions were shouted down. Online communities have a core of people, and their followers, who think their experience is the only hyperacusis experience. Any suggestion that deviates from their experience is shut down. Frankly it is damaging for the community as a whole. I quit all the Facebook groups and I stopped talking to all those people who came to talk to me about MY experience. In doing so, I lost nothing. However, some people may have lost a glimmer of hope that maybe this isn't the end of their life (something I searched for every day in those dark days but could never find).

In case you're wondering (because someone always ask "well why are you here then?"), I came back today as I usually do to check out how some people are doing. No other reason.

So in conclusion. Yes, @sjtinguy was dead right with his comment "I can see why some people who get better don't come back here". And it certainly isn't just because they moved on with life.

Cheers,
Shaun

 

[jjflyman]

However, it became apparent very quickly that it wasn't welcome. My thoughts and opinions were shouted down. Online communities have a core of people, and their followers, who think their experience is the only hyperacusis experience. Any suggestion that deviates from their experience is shut down

I'm sorry you feel that way. I have had bad tinnitus & hyperacusis 3 times over the last 15 years or so (from acoustic trauma), each and every time the tinnitus & hyperacusis have faded to zero or near zero.

I have come back multiple times to give members encouragement and hope, and have never felt unwelcome. In fact, the interactions with Tinnitus Talk members have been all positive.

Please keep coming back to offer hope to other members with your recovery story, sometimes the random comment of hope from a stranger will lift someone up and give them the strength to keep going because things will get better!

 

[MadeleineHope]

@ShaunR, being a relatively new hyperacusis & tinnitus sufferer, I, for one, would love to read your success story & hear about what worked for you! I bet there are others here who would too.

On another note, it's great to hear you're doing so well!

Maddy