Warning for People with Noxacusis: For the Love of God, Protect Your Ears!

Thank you for the comprehensive post. It sounds like you have a lot of fluctuation with your symptoms. I really do not have any pain from my issues but the loudness hyperacusis has greatly impacted my quality of life. I have also treated with Ben Thompson. He indicated that the counseling is probably more important than the sound therapy. I have generally not improved with TRT. The tinnitus seems very reactive. I am concerned about the level of tinnitus and hyperacusis in the future, but I am hopeful given that the passage of time seems to be an important factor.

 

Hi, I just read the story and I’m sorry you have to suffer thru this hell. I’m going to share my personal experience with hyperacusis.

At the start of 2019 I started to notice that music I was playing in my headphones felt louder than usual. I did not think much of it as it was only transient. It would be bother me for a few days but then I was back to my normal headphone volume. I never listened to max level but I did listen for many hours everyday for years so what I understand now is the damage is cumulative.

As 2019 went by I had to reduce the headphone volume much more often always lying to myself telling me it will come back as it always does if you give it a week.

Flash forward to May 2020. I’m listening to music thru my headphones once again and I feel something snap in my ears. That’s when my life changed. Now everyday sound felt very loud without earplugs. From there I started using earplugs for everyday life again. I was watching a movie, there was a sword fight, my ears snapped again when their swords clapped. My sensitivity decreased again. Next week I was in the kitchen with my dad. He was using a knife to cut some food on a plank. My ears snapped again. Since then I’ve been homebound using earplugs plus earmuff 24/7, only removing the earmuffs to sleep.

I feel like there is no floor to how low my sensitivity could go. It’s been getting worse since then, sometimes improving a little bit but it’s like one step forward, 2 steps back. I can’t eat loud food at all or I get a setback. My setback are permanent; no coming back from it.

I did try TRT but I don’t think it helped because like said I will improve a little bit but then a setback will make me come back. I just get gradually worse. I can’t even use my keyboard anymore. I type on my iPhone.

I only suffer from loudness hyperacusis and I have tinnitus as well up to 10 different tones but I’m kind of used to the tinnitus.

My advice to people starting having hyperacusis is to take it seriously right away because it can get way worse and there is no going back.

For me there is no way I can protect 24/7. It would just crush my ears’ sensitivity to levels I don’t even know how low it’s possible to get.

I’ve been in the house almost 2 full years now. Only leaving 2 times for an ENT appointment which were of no help, even the contrary. Telling me to keep living my life, to get used to it and giving me bad looks for overprotecting.

 

I am sorry to hear about your situation.

Are you working?

I can take walks outside, go to the fitness center, drive myself to the store, type on a keyboard, watch television, and drive myself to run errands. I do not have pain as a result of the hyperacusis. I am trying intermittent fasting.

 

Hello Guys,

I am soooo sorry to hear that you struggle so much. I think I might have joined the club and I am scared to death so I would appreciate any advice.

Long story short - I developed tinnitus and hyperacusis from a caloric test in October last year. Tinnitus started with a hissing sound and kept adding new tones. Now I have 7-8 tones and it feels like every week or so it keeps adding new tones and increasing the baseline.

My hyperacusis was very bad at the beginning but it slowly started improving. I did not leave my apartment without earplugs and I was able to do most of the stuff with them - socialize, going to the grocery store, going to the office, travelling with car, train, visiting the mall for shopping etc. This did not affect my hyperacusis as long as I was wearing earplugs.

There were a few setbacks from the kitchen and Valsalva maneuver that lasted only several days but hyperacusis got back to its normal levels. Slowly, low level sounds started not to bother me so much - flushing the toilet, flipping switches, paper rumbling etc. At home I was not wearing earplugs and I used a fountain to enrich myself. I played masking sounds at night with no problem. I was able to listed to the TV or music at a moderate volume without hearing protection.

However it all changed after I stupidly decided to go to a cafe/shisha bar for 30 minutes. I made a 5 minute break, I was wearing my earplugs but It felt too loud so I left. Tinnitus was impacted right away and hyperacusis struck the next day. My tolerance dropped so much that I had to listen again to the TV on volume 1 or 2. After a week it got stable but not to the previous level. However, I was able to do most of the stuff with earplugs again.

But maybe my ears got much more vulnerable after this. I went home for Christmas using a two hour train ride which I had done 5-6 times since hyperacusis started with no issues at all. However, this time my tolerance dropped significantly. Then after a 2 hour stay with my relatives (again using earplugs) I felt how intrusive it can get. Everything hurt. For the first time I had to rely on earplugs all day and even then sound kept hurting my ears.

This did go away and I improved a little for a week. Then I took a train again with double protection to go to my parents' house and I was okay. Next day I was able to speak with them without earplugs and only occasionally their voices hurt. It was like my normal level.

Then I felt two setbacks which would not set me back for sure before. First one was a bomb outside my house which was so loud. My hyperacusis was impacted almost immediately. A day afterwards a guy honked in front of me and this is what brought my tolerance to this nightmare level - now every little noise irritates me, I have pain (sometimes behind the ear, sometimes in the ear canal from low noises. Sometimes I would wake up with it).

This was a month ago and I have not seen any improvements since then. My tinnitus is horrible, super reactive, and I keep adding new tones and spikes from talking now.

I try to stay inside as much as possible but I can't isolate like this. I go out for a walk in the late evenings but now I have to wear earplugs and earmuffs and even then the sound of a passing car or people's voices hurt. It was not like that at all before! My voice is too loud for me, my breathing and every little sound is irritating. I cannot seem to find the balance. I tried with pink noise before I got severe, but it irritated my tinnitus so I stopped. I am so scared because before this honks and other loud stuff did not set me back as long as I had earplugs in. And if I got a setback from something, it would always go back to my baseline in one week tops. I only had pain from time to time.

Now it has been a month - no improvement. I barely go to work using taxi and try to stay away from the several people in the office. It is really quiet there but I have to have my earplugs in at all times because noises hurt.

Please let me know what I can do, some remedies, supplements, tactics, diets - anything I can try. I am so scared that I might not go back to where I was and I feel worsening in hyperacusis and tinnitus every day.

I was considering stem cells before my hyperacusis worsened so much. Now I cannot say if a 4 hour one-way trip to the hospital will set me back even more and irreversibly. I want to do it but I am so scared. I even contacted a homeopath that cured several cases of hyperacusis but her taxes are just too much - 450 dollars initially, then 400 dollars for next visit, 300 from then on etc. you get the point. I am so beyond despair that I am willing to pay.

 

I just started fasting the first four (4) hours of the day. I have not noticed any benefit yet but plan to give it more time as it has helped some people. I am not a big believer in alternative treatments, but I am giving it a try. I am not certain whether I will try a more extended fast but I have thought about trying two (2) twenty-four (24) hour fasts during a one week period. If I could figure out a way to calm my central nervous system to a significant degree, I believe that the tinnitus and hyperacusis would improve. I have some days where I get up in a good mood and these issues are not as bothersome. By the end of the day, however, my auditory system starts feeling fatigued.

 

So you don’t get physical pain from sound? It feels more like extremely loud and makes your ears sore? Does your tinnitus spike with it?

 

In your case I don’t think you are doomed. Definitely try a low histamine diet and rest your ears as much as possible. Don’t leave your house without earplugs in, exercise, get enough sleep, stay away from meds, and lower your anxiety levels. I had that snap too. I still can’t figure out what it was. For me I think it was something middle ear related. I had pain only from high pitch noise. After I yelled months later I heard the snap.

Since the snap I could easily tell most frequencies in my ear were much more painful and loud. Never had problems with my voice until that. I have been thoroughly reading about pain and loudness hyperacusis. The key is figuring out if your pain is middle ear, inner ear, or both, then treating it. There are certain symptoms for middle ear hyperacusis and inner ear hyperacusis that can differentiate them apart. There’s also brain hyperacusis which I call it. Where the brain turns up the volume to compensate for damage.

In my experience, and I, unfortunately, consider myself a hyperacusis expert at this point, hyperacusis caused by the brain is, for most people, treatable with sound therapy, rest and living a healthy lifestyle. You don’t have to do TRT but you know, just slowly ease out into sound exposure again avoiding setbacks. Middle ear hyperacusis is usually caused by the tensor tympani, or the stapedius muscle. If these get damaged they can cause hyperacusis and pain. Silverstein proved some people have hyperacusis from a hypermobile stapes. In my case my personal sound therapy with a fan almost cured my middle ear issues but made the inner ear hyperacusis worse. I think middle ear stuff has a better chance of recovery. The worst and most complicated is the inner ear nerve fibers connected to the outer hair cells.

For the worst cases of pain hyperacusis people destroyed these nerve fibers or the outer hair cells causing over excitation. This definitely does not respond well to sound therapy for most people. It seems to excite the nerves more. Researchers say that ATP, a chemical leak in your inner ear can cause continual excitation. Some people believe lowering histamine in your body can reduce ATP leakage, and allow middle ear issues to heal with Ambroxol. So far the diet is not a miracle for me but I definitely notice a difference. I have other co-factors keeping me from healing.

 

@Brian Newman, would you mind listing what does your diet include?

 

I would also like to hear about the diet and any resources regarding same.

 

I had a snap too. It was when my acoustic trauma first happened though. Loud music in my car and I felt a snap/pop in my left ear. Pretty mild though. I didn’t have any tinnitus or anything till the middle of the next day.

I feel like I have all three “layers” to hyperacusis/noxacusis. When I first got it so many things sounded ridiculously loud. Like the microwave beep and fridge him sounded on par with voices and things, but it wasn’t like everything was just louder. Like to say voices sounded normal, but the shower was insanely loud. I was staying at my fathers and the air conditioning unit outside of the house sounded so loud and felt like it was drilling a hole in my skull, though it wasn’t particularly painful. This seems to have gone away almost entirely over time.

Then I had lots of middle ear issues that I feel like time, supplements and physical therapy helped. Those seemed to be my main issue as I improved from October 2020 until November 2021. Whenever I was trying to listen to music before things got much better I’d feel the tightness in my ear from the tensor tympani and stapedius.

Early on I’d have the ear fatigue thing where conversation would even make my ears feel tired. This improved considerably within a couple months I guess because I didn’t have it often after that. Then I started having it again in early 2020 as I first tried listening to music on a low quality portable turntable and some other speakers I had attached to my laptop. So I stopped trying to listen to music entirely for like 6 months. For some reason I feel like this type of fatigue is associated with the inner ear.

This latest setback I had from music at the record store feels most like the third type with the ear fatigue. Or at least initially. I was having lots of fatigue, but now it’s just lots of pain and my ears seem more sensitive than ever to getting pain from noise vs sound discomfort and tightness from like silverware clinking.

I don’t understand why I would have such a flare up or worsening of the inner ear type from 15 minutes of exposure to 75 dB or less music after all my improvements. I mean I wasn’t wearing ear plugs most places in public at this point and wasn’t having problems with one off sounds that were way louder like babies screaming, dogs barking, car horns etc.

I feel fucked right now though. Before any setbacks were usually for a few days. I had 1-2 that were around 2 months, but gradually improved. Now it’s been nearly 3 months since the record store and I’ve had no improvement per se. Some types of pain have lessened, but others I haven’t had in a long time have reappeared like shooting nerve pain in my forehead. The pain is low level, but pretty much constant now. At first I was having lots of ups and downs. It’s like it’s settled into a constant now.

But the reactivity sensation of the middle ear isn’t really there. I have a little bit in my left ear where I can feel certain sounds tighten it, but mostly nothing from silverware sounds, paper crinkling etc other than mild pain sensation.

Sorry if I’m rambling. What other co-factors do you feel are keeping you from healing?

 

Well everything pretty much started after I got barotrauma from a heavy deadlift. I think I have a perilymph fistula because it gave me hyperacusis in both ears. I think fistulas can definitely cause conductive hyperacusis, and one can affect the other ear. I think that’s a big culprit.

But it’s hard to explain. Yeah I get the ear fatigue, I usually stop when it ramps up the pain. Something in my middle ear is fucked for sure. Probably the stapes being hypermobile, I know I definitely have that but I can’t tell if it’s causing the pain or not.

I had the booming sound in my left ear that hurt to talk or chew crunchy food but it was short aching and would subside. It also gave me severe loudness hyperacusis in that ear. That got better with sound therapy. But the sound therapy made the cochlear noxacusis worse. Much worse. Then in December I tried a nasal spray and now I get a third pain. The cochlear noxacusis is getting slowly better but it’s extremely sensitive ever since the nasal sprays and saline; I woke up a day later with horrible stabbing and acid pain in my middle ear close to the cochlea.

Ever since it’s been difficult to chew and swallow. Swallowing with earplugs in triggers it again. It’s all very selective. I somehow managed a 4-hour car ride, but then last night I made a little snapped noise on my jacket and pain came back horribly. I clanked a pan the day before, but I was ok. I don’t get it.

But I do think after September-December wearing Peltors 8 hours a day definitely gave me some kind of TMJ. I never got pain from chewing before. Only that loud booming noise from my stapes. Now chewing makes my bad ear just start aching and stabbing in the middle ear. Crazy stuff.

 

Jesus man, I’m very sorry you’re dealing with all that. That is one of the things that I hate most about this shit. It seems to create a myriad of different problems that there’s seemingly no way medicine will ever get to the point of addressing all of it.

I often wonder if the regenerative medicines fix the hair cells and cochlear damage, if anything else will fall back in line or become less of a problem to a degree that is truly livable. I doubt I’ll make it long enough to find out though.

 

Did someone try Ubiquinol Q10? I read that it has helped some people.

 

It’s basically an extremely healthy diet. There are some other things you can have but it’s extremely limited. Nothing processed, no dairy, no nuts, nothing made in a factory, all you can pretty much have is cauliflower, broccoli, green beans, rice in a bag (not a box), and all meat has to be frozen. It has to be plain meat, chicken, steak, pork, salmon. It’s hard finding stuff that’s completely plain with no sweetener, flavorings, or anything. Since I can’t leave the house it took my mom a bit to find it but at our Publix she found plain chicken breast that’s organic, plain and frozen. Then I defrost it in warm water, you can only put salt pepper and garlic on it, cook it in a pan or oven, with rice and that’s your every meal. The idea is that histamine grows more on food when it’s cold and not frozen, the longer the food is out, the more histamine it has.

With this, you can’t have leftovers which is hard so you have to freshly cook every meal, leaving any food in the fridge will produce histamine. Once a day I put a slice of grassfed butter on my rice. That’s it. I used to eat 5 meals a day being a bodybuilder. Since I can’t workout anymore anyways, I eat 3 times a day because cooking 5 meals is overkill. It’s pretty much chicken and rice with pepper, garlic, salt, and olive oil on the pan. And here and there I’ll throw in salmon or steak. You also have to take digestive enzymes with it before every meal.

This diet is supposed to allow things to heal, and apparently histamine can cause ATP leakage which is a suspected cause for inner ear noxacusis. I have so far seen and talked to three people who have brought their noxacusis from catastrophic to moderate or mild-moderate doing this diet. It’s not a miracle yet for me but it’s definitely helping. My setbacks are shorter. And my inner ear inflammation does not last as long.

 

I wrote the diet above.

 

I hope so with my life. Their way, those Type 2 nerve fibers get triggered by outer hair cell damage, or by damage to the Type 1 fibers which are synapses. I think there’s a good chance this stuff will help or their will be a way to calm them down.

 

This sounds interesting. I wonder if the paleo area at the food bar at Whole Foods (very plain cooked chicken and plain rice in a separate container) would comply with this diet. My hyperacusis is significant but does not sound as bad as your own. I might really benefit from it.

What do you eat for breakfast and what do you mean by taking digestive enzymes before every meal?

I am happy to hear that it helps you.

 

Nice strict diet. Thinking about trying it myself.

I was also thinking, maybe you should try incorporating intermittent fasting to compliment that strict diet. There might be some added value to it. Autophagy which is achieved through fasting can help in the reduction of whatever inflammation there is in the body. I also heard fasting may have benefits for the brain as well. Something about increasing generation of new brain cells and nerve tissue for better brain performance/memory, mood, and focus. Who knows...

 

Good idea. I thought about doing that too, two in one would be a greater benefit. I’m going to stick to regular for another month and see what happens. I heard stories of people treating their tinnitus with fasting too.

 

Yeah with the diet you pretty much gotta make everything yourself. Because most places with good quality meat have it in the fridge, then they cook it. It has to be cooked from frozen. And there’s special enzymes that help stop histamine production in your gut.

Pure Encapsulations Digestive Enzymes Ultra | Supplement to Aid in Breaking Down Fats, Proteins, and Carbohydrates for Digestion* | 90 Capsules

 

What is the theory about why this type of diet helps with hyperacusis and/or tinnitus? Does it help calm the chaotic hyperactivity going on in the auditory system and the brain?

What is your dosage of those enzymes? Do you take one before every meal?

 

Never had pain since I got hyperacusis, just gradually more sensitivity. Everything sounds super loud and it keeps getting louder anytime I have a setback. I used to recover from setbacks but not anymore.

I’m 30, I went back living with my parents. They live in a super quiet house.

I work from home. I’m a trader.

 

Very sorry to hear that, @simonD. Do you have any measurable hearing loss? I think permanent loudness hyperacusis of that severity is very uncommon unless there's quite significant hearing loss.

 

Nice man. I want to get into trading too. Perfect job you can do anywhere. It’s perfect having hyperacusis tbh.

Have you tried sound therapy at all? I seriously think it’s worth a try unless your tinnitus gets louder and louder. My loudness hyperacusis was severe. Touching a wrapper sounded like an explosion. After sitting and sleeping next to my air purifier as much as possible it got much better. It made my pain hyperacusis much worse though.

 

@Brian Newman, I was just in a Zoom meeting with Dr. Ben Thompson and he advised me of sound therapy for a trial first with my earplugs for short period of time and then if I get more comfortable to keep going.

I don't feel like it at the moment because even talking spikes my tinnitus.

He also said they don't have the tool of managing the pain part of the hyperacusis because it is misunderstood but gave me some hope I might get better.

My question is - did you feel uncomfortable while sound enriching yourself? Did you at the time had noxacuais?

Currently I am not able to stand any fan noise without ear protection.

 

Yeah he told me the same thing, he can’t help with pain hyperacusis. Yeah I felt discomfort from most noise, I would play Xbox and try to distract myself. Because if you don’t you will just fixate on it the whole time. Maybe do it while you’re trading so your mind’s distracted. So before I started the therapy my pain hyperacusis was very complex. I had severe stabbing pain from squealy car breaks and high pitch stuff like that, talking felt really loud in my left ear, and would ache and stab for a bit afterwards. A lot of artificial audio hurt. The pain was more moderate but severe on bad days if I set it off. In the beginning I would get aching in my bad ear, then it would fade. After a month I could shower comfortably with no earplugs, talk a decent amount with no issues, most TV still caused pain though, and light switches and flushing the toilet no longer hurt my ears. Most other noises stopped setting my loudness hyperacusis off.

I think hard of what went wrong but I just remember my buddy came over and I remember my fan and air purifier was just making my ear ache more than usual. Thought nothing of it. Then within a week I started getting extreme pain and aching in my bad ear from noises that weren’t high pitch squeals. I kept telling myself it’s part of the healing process. That’s when I had to stop driving and leaving the house at all because noises just started going right through my earmuffs and triggering the aching pain. I do remember a few nights my ears felt raw and I would try to ignore it and keep sleeping with all the noise on and would wake up and be fine. Then I started waking up in pain at which point I realized I had to stop it. By then it was too late and my bad ear got so much worse pain wise. The loudness hyperacusis was still better so I didn’t want to stop but I knew the pain is more severe and harder to treat.

My advice is don’t overdo it. If you don’t have pain hyperacusis, you probably have nothing to worry about. My ear damage is incredibly complex and I am positive I have middle ear pain along with inner ear pain. Too many mechanisms at work in my ears that are damaged. Start small and go by months. I think I went wrong by doing it 14 hours a day even though I felt fine in the beginning. Have to give your ears a chance to slowly adapt. Start with a few hours a day for a while and see how your ears react. Then keep upping and upping it. Your tinnitus will most likely spike, just make sure it’s not spiraling out of control.

Everybody is different with this ear stuff and what bothers them the most. Do not be afraid of your hyperacusis if it’s not causing you pain. I lived with my LDLs in the 60s for months and just stuck it out. I kept doing stuff with earplugs in and ignored it the best I could. Because even if I felt discomfort I knew it would be ok once I got away from the noise. As long as it wasn’t a loud one. When the pain started clearly getting worse and lasting longer and escalating that’s when I had no choice but to stay home. They are two totally different mechanisms after I have suffered from both severely. Your biggest worry should be your tinnitus if you don’t have pain hyperacusis. Just take things really slow and see how your body reacts. Don’t overthink it.

 

How do you do sound therapy with earplugs? Is he referencing using earplugs while listening to pink or white noise using a portable sound generator?

 

I think he means to reduce the levels even more than just turning the volume down. Like maybe a 15 dB plug just to start and see if he has a pain reaction or reactive tinnitus or something. If not then he could extend durations, then use a lesser plug like 7-10 dB reduction and then start the timeframe increase over till he got to a point of using normal volume without ear protection.

 

I am seeing Ben Thompson (virtually) and we are using above the ear sound generators and using pink noise. I am not really seeing any improvement, but I might try the low histimine diet. Some people apparently have also seen improvement by cutting out all dairy.

 

This is what he meant yes. I am trying for 3-4 minutes of every hour. My ears are so damaged that I have to start really low and gradually try to increase the time and reduce the earplug usage.

Last two nights I am awaken by burning pain near the ear canal and behind the ear. It is unbearable.