Loudness Hyperacusis, Followed by Pain Hyperacusis (Noxacusis)

[Lorna46]

Hi All,

I have severe loudness hyperacusis and noxacusis. I never post online, but after months of reading posts, I feel it's time to introduce myself. While I usually avoid these websites, as sufferers, we all know the only people who truly understand are on these forums. The best advice often comes from fellow sufferers. I'm sharing my story in the hope that it helps others understand pain hyperacusis/noxacusis and maybe prevents someone from going through what I did.

My loudness hyperacusis began in April 2023, after being exposed to a loud, high-pitched noise for about half an hour. Immediately afterward, I noticed everything sounded excessively loud, particularly high-pitched sounds. Simple tasks like emptying the dishwasher required headphones. I had read some horror stories online but thought my condition was mild, so I continued with life. I must have improved because I stopped wearing headphones as often and ignored the loudness.

(As for my hearing history: 10 years ago, when we moved into our current home, we installed an alarm system. Due to constant issues, it would frequently malfunction, producing an extremely high-pitched screech when I entered my code. Each time, I'd go deaf for a few minutes, which I believe contributed to my hearing damage.)

Then, in April 2024, my hyperacusis suddenly worsened, and I developed noxacusis. This decline occurred over the course of about two weeks, following a few very loud episodes. Suddenly, everything became unbearably loud and painful. I had forgotten the horror stories I read online and was so busy with life that I assumed it would calm down. But it didn't—it worsened. I became completely housebound, isolated from all sounds, hidden in a room upstairs, away from everyone, including my children. In the past five months, I've only left the house once to see a doctor.

As a mother, this has been soul-destroying. My older children have been supportive, but my youngest struggles to understand. I'm fortunate to have a family that supports me, but it has been hard on them, too. I don't know how anyone copes with this without support.

My Symptoms (April 2024):

• Stabbing/electric pain from even the tiniest noise, particularly in my left ear, radiating down my jawline and teeth.
• Aural fullness in both ears, constantly.
• Fluttering in my left ear, like there's a little bell inside (likely tensor tympani syndrome).
• Tinnitus, which only started with the severe hyperacusis—reactive and musical.
• Severe loudness: I couldn't even tolerate whispering, even with earplugs and headphones on.
• Water sounds (flushing toilets, washing hands, showering) were unbearable, even with double protection.
• Plastic bags and food packaging were unbelievably loud. I had to ask my children to remove items from the plastic and be far away from me when unpacking groceries.
• I could only eat using paper plates and bamboo cutlery, and I could no longer cook or eat with the family.
• No crunchy or hard food whatsoever.
• The TV was on silent—thank goodness for subtitles!
• My husband had to take over almost everything—caring for the children and running his business.
• Isolation in our attic bedroom, away from everyone.
• Even breaking off pieces of toilet paper was too loud, and scrolling or tapping silently on my phone felt too loud.
• Typing on a keyboard or clicking a mouse was intolerable, even with protection.
• Birds outside made it necessary to wear ear protection, even in silence. I ended up sleeping in my son's top bunk because his room was the quietest, away from the birds.
• No conversations with anyone, not even my husband. For the first two to three months, we had to email each other, even though we lived in the same house.

I've improved very slowly. I can now tolerate whispering without protection, but only for short periods. I've been able to cook simple meals for the family, as long as I wear double ear protection. I've also started eating some meals with them, provided they whisper, and everyone uses sugarcane plates (highly recommended), bamboo cutlery, and paper cups. No one talks above a whisper in the house, except for my youngest, who sometimes messes around. Even voices in a distant room are too loud for me.

I read @Marin's success post on this forum, which gave me hope. She, too, had been separated from her children but seemed to improve and has since disappeared from the forum. She tried a homeopathic remedy, which I also took, though I don't believe in homeopathy, and it didn't help me. Marin also used DNRS (Dynamic Neural Retraining System) as part of her recovery. I read several books on neuroplasticity and decided to try DNRS, as it's a structured program. I started it four months ago, and it's been fantastic—I can't speak highly enough of it. It has been my saving grace during these months of isolation and uncertainty about the future. I would recommend it to everyone, but it requires a real commitment. The slow progress, particularly when you're so isolated and want to be there for your children, can be emotionally draining.

I had hoped to post here as a success story, offering hope to others, but for now, I'm just another sufferer seeking answers. My heart goes out to everyone experiencing this. Stay strong, everyone.

Lorna

 

[Jupiterman]

You reference wearing earphones. Do you mean earmuffs?

 

[Lorna46]

You reference wearing earphones. Do you mean earmuffs?

Yes, earplugs and earmuffs. I am trying to not use them as much as possible. It's a balancing act trying not to overprotect but at the same time prevent any further setbacks.

 

[Yellowblue44]

@Lorna46, I'm so sorry no one has responded to you. I'm in the same boat. I have a 6-year-old, and I won't be able to attend things like family meals outside, her nativity play, or a visit to Santa. However, I've made a list of activities we can do together at home. Currently, after school, we paint Christmas cards, and today she's excited about having an indoor picnic.

I'm so glad to hear you've made some progress. I've been learning about DNRS. It involves one hour of daily visualizations, where you speak out loud that "it's just a loop in the brain, a malfunction of the limbic system, and it can be rewired." Then, you describe aloud what your future healthy self would be doing—living your best life and thriving despite the world's beautiful sounds around you. There are many DNRS visualizations available on YouTube. I mention this to help others who might be reading this. You're absolutely right—it's all about consistency.

Anyway, you're doing great! Slowly but surely, you're improving!

P.S. I wanted to mention that I also have severe tinnitus. I once read someone describe it as a "soup of sounds," and I can relate. I have many tones! Mine is reactive, and I also experience musical tinnitus, which has started to mimic certain sounds and music. You are not alone!

 

[Lorna46]

@Lorna46, I'm so sorry no one has responded to you. I'm in the same boat. I have a 6-year-old, and I won't be able to attend things like family meals outside, her nativity play, or a visit to Santa. However, I've made a list of activities we can do together at home. Currently, after school, we paint Christmas cards, and today she's excited about having an indoor picnic.

I'm so glad to hear you've made some progress. I've been learning about DNRS. It involves one hour of daily visualizations, where you speak out loud that "it's just a loop in the brain, a malfunction of the limbic system, and it can be rewired." Then, you describe aloud what your future healthy self would be doing—living your best life and thriving despite the world's beautiful sounds around you. There are many DNRS visualizations available on YouTube. I mention this to help others who might be reading this. You're absolutely right—it's all about consistency.

Anyway, you're doing great! Slowly but surely, you're improving!

P.S. I wanted to mention that I also have severe tinnitus. I once read someone describe it as a "soup of sounds," and I can relate. I have many tones! Mine is reactive, and I also experience musical tinnitus, which has started to mimic certain sounds and music. You are not alone!

Hi Yellowblue44,

Thank you for your lovely reply to my post. I'm sorry to hear you're in the same boat, but it's comforting to know we're not alone in going through this. I completely understand when you say you won't be able to attend your daughter's nativity play. I've just been making my daughter's costume with her, but I know it will be other family members watching it. Like you, though, I'm focusing on what I can do at home.

Thank you for your excellent description of DNRS for others who might be reading this. It has been truly life-changing for me, and I highly recommend it to anyone with hyperacusis. It has been a lifesaver over the past few months. Essentially, DNRS involves retraining the brain through neuroplasticity. Each session requires 'incremental training,' where I expose myself to a trigger—within reason—for a brief period. For example, I might listen to music at minimal volume for a minute or crinkle a plastic bag.

Afterward, I immediately go into a round (visualization exercise). Very gradually, at your own pace, and as you improve, you expose yourself more and more to a trigger before each round, thereby incrementally training your brain little by little that it's safe. This incremental training helps retrain the brain little by little to recognize the trigger as safe. The program also emphasizes learning to elevate yourself emotionally, which is crucial for calming the subconscious brain about sounds and staying positive when normal life isn't yet possible. DNRS was initially developed for individuals with chemical or electrical sensitivities, many of whom are housebound—similar to those with hyperacusis.

I've seen slight improvements since my original post, so I'm staying optimistic that this progress will continue . Fingers crossed for you too!

 

[Yellowblue44]

Hi @Lorna46,

Thanks for your response. I love your post. Despite your difficulties, you remain so positive. I try my best to stay positive too, but I often have sad thoughts throughout the day and forget to do the "stop stop stop" or retrain myself. It is a shame we cannot connect directly to motivate each other.

Anyway, I just went for a walk. The sun was shining, and I have a little park nearby. It is always empty on weekdays, so I walk around it for about 30 minutes. I wear earplugs, but I still hear loud white noise, which I believe is made up of distant cars, lawnmowers, and planes blending together.

Before my setback nearly three months ago, if a place like the park was empty, I would hear silence. Now, I hear all these far-off sounds. It is disheartening. Do you experience this too? How do you retrain yourself when it happens?

I have found another country park, but it is a bit of a drive and somewhat secluded, so I would prefer to go with a friend. It is the only place I have found where, if it is not windy, I can almost hear silence and focus on the lovely sounds of nature.

This is such a strange condition. When I notice minimal improvements, I wonder if it is just me getting used to the loudness or if it is actually decreasing. Nothing feels consistent. I guess I will not know for another few months.

P.S. How do you remind yourself to stay consistent with DNSR?

 

[Yellowblue44]

I just oiled two creaky doors that had been annoying me for weeks. It took one minute—I wish I'd done it earlier. I didn't have any other oil, so I used extra virgin olive oil. (Yes, really!)

I've been thinking about how you approach DNSR after exposure. For example, when you hear the sound of foil or a crisp packet, what visualization do you use afterward? Do you just quickly visualize opening a packet of crisps and enjoying them? This condition feels so nonsensical that it's hard to even remember how we were when we were healthy.

With children, it's even trickier since we can't always slowly desensitize. There are some things we just have to endure. For instance, I have to pick up Aimee while my husband handles drop-offs. I wear ear defenders for this, but my reactive tinnitus isn't pleasant at all. I know I probably shouldn't be doing this, but I don't have much of a choice. On most days, I also drive for a couple of minutes with earplugs as part of my desensitization efforts. It's been a couple of months now.

P.S. I purchased the Gupta Program, and it worked instantly for my lingering COVID-19 fatigue, but unfortunately, it's not helping in this case.

 

[MindOverMatter]

I've been thinking about how you approach DNSR after exposure. For example, when you hear the sound of foil or a crisp packet, what visualization do you use afterward?

What I used for some time early on was introducing "positive soundscapes" to train my brain to focus on them instead of the noises (reactivity and hyperacusis) I experienced in my head. You can choose any soundscape you find soothing. Just make sure to use a high-quality speaker and play it at a low, barely audible volume.

Of course, this is not a quick fix. It takes time. It's a process.

I used this approach frequently while at home.

 

[Lorna46]

I just oiled two creaky doors that had been annoying me for weeks. It took one minute—I wish I'd done it earlier. I didn't have any other oil, so I used extra virgin olive oil. (Yes, really!)

I've been thinking about how you approach DNSR after exposure. For example, when you hear the sound of foil or a crisp packet, what visualization do you use afterward? Do you just quickly visualize opening a packet of crisps and enjoying them? This condition feels so nonsensical that it's hard to even remember how we were when we were healthy.

With children, it's even trickier since we can't always slowly desensitize. There are some things we just have to endure. For instance, I have to pick up Aimee while my husband handles drop-offs. I wear ear defenders for this, but my reactive tinnitus isn't pleasant at all. I know I probably shouldn't be doing this, but I don't have much of a choice. On most days, I also drive for a couple of minutes with earplugs as part of my desensitization efforts. It's been a couple of months now.

P.S. I purchased the Gupta Program, and it worked instantly for my lingering COVID-19 fatigue, but unfortunately, it's not helping in this case.

Hi @Yellowblue44,

You really sound like you are in a very similar situation to me at the moment. I am certainly not positive all the time. My husband will vouch for that! It is really tough in so many ways. I admit I also struggle with being consistent in doing the DNRS rounds, but I mostly manage to do at least 40 minutes a day (two 20 minute rounds). I cheat a little by doing one round during my dog walk. I am very lucky to live in the countryside where I rarely see anyone nearby, so I can concentrate. However, there are always the exact noises you described, such as distant cars, tractors, lawnmowers, planes, helicopters, noisy birds, barking dogs, and most recently the loud crunch of fallen leaves.

I wear earplugs and a hat to block out any breeze, and I keep ear defenders in my pocket for unexpected noises. For the first few months, I was mostly stuck inside, so it is such a relief to at least be able to go for a walk now.

Did you purchase the DNRS program, or are you just following suggestions from YouTube? I ask because I have found the program really helpful. It offers so many ideas for raising your emotional state and thinking positively. I also joined a weekly Zoom group that meets for 12 weeks. I keep the volume off and read subtitles to follow along. When I contribute, it is through the chat feature. It is a bit odd not being able to hear or speak directly, but it has been so helpful to connect with others dealing with equally challenging conditions. The facilitator has given us so much advice. One thing she says, which I find particularly helpful, is that no round is a bad round. Even if you cannot do an hour, just do your best each day.

Some people in my group have been doing DNRS for a year or so and have seen real improvements in their symptoms. There is also a DNRS community forum. I have not posted there yet, but it is a great resource for ideas.

As you mentioned, having children makes things even harder, especially with the unpredictable noise levels. I sometimes wonder if I would have improved more quickly if I had been alone for a couple of months. But I do not think hyperacusis is that straightforward, as many people say silence did not help them. For me, being with my family, even when they only whisper around me, has been the most important thing keeping me grounded and positive.

You mentioned school drop offs and pick ups. I have not been able to do those yet either, and it has been unbelievably sad not to be there. My husband, parents, friends, and more recently a local girl on her gap year have been doing them for me. Is there anyone who could help you with at least some of the pick ups? I know it is hard to ask for help, especially when you do not know how long you will need it, but it might be worth exploring. Everyone's lives are so busy, but sometimes people are more willing to help than we expect.

I sometimes wonder if my minimal improvements are real or if we have all just adapted. Our home is set up to be as quiet as possible, which might make it feel like progress is slower than it really is. But I know I have improved slightly because the aural fullness has lessened. I can tolerate much longer whispering conversations, cook while wearing ear defenders, and go for walks. I still have fluttering in my left ear, as though something is loose, which is likely TTTS. What I really want now is to talk normally again and have regular conversations, not just whispers.

This condition is unimaginable. Nobody could make it up if they tried. I recently watched A Quiet Place and noticed so many things we would find noisy that the producers did not seem to realize. They should have consulted someone with severe hyperacusis for accuracy!