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

Sorry to hear that, it seems harder and harder to get better from setbacks. Not all of us get second or third chances, I know.

Btw do/did you have hyperacusis with burning pain or just loudness? Can you live a semi-normal life at least?

 

No pain at all, just a terrible constantly changing high pitched tinnitus. I would say that I am aware of it 95-98% of my awake time. I can live a pretty normal life. Hopefully I will adjust this time around again.

 

I see it as a good success. But did you had ear pain in the past? Asking because we are on the noxacusis topic and not sure if your noxacusis was cured or if you only had loudness hyperacusis and tinnitus. Thanks.

 

This is very reassuring to hear. I'm on month 8 of dealing with this shit. I hope I'll be able to recover enough to partially resume a career in music, given enough time.

Can I ask what helped you to recover? Did you just go the standard route of reducing your noise exposure until your ears could tolerate it?

 

Hey, sorry for the late reply.

To answer your questions. Well, I enjoy games and art. I try to play some mobile games on my phone and iPad and also color in those adult coloring books and sometimes paint wooden boxes or maybe a table or something like that. I'm looking at more things I can do to distract myself.

I'm still working on weight loss but one of my biggest worries is, I'm going to be getting a new bone anchored hearing aid in a month and a half and while I usually get pretty excited about getting a new hearing aid (I usually have to get an upgrade every 5 years or so), my severe reactive tinnitus is kind of making me dread it. I really want to enjoy my new hearing aid but I just know that with invasive sound sensitive tinnitus, it will probably affect my enjoyment of the new hearing aid a bit. I have no option of going without a hearing aid since I was born 75 percent deaf. Hearing aids were never an issue with mild tinnitus til it turned severe. I don't know if I should tell my audiologist to calibrate it a certain way so it doesn't cause too much discomfort. I worry I'll have to quit my job if the new hearing aid makes this even worse. I read about people's reactive tinnitus getting much worse with hearing aids but I don't have the option to go without one and I don't want to go without one.

 

@Brian Newman, you said you can’t work out anymore. Is that due to the noise of weights or does any physical activity create too much noise or vibration that causes irritation?

I’ve noticed when I’ve tried working out a couple times after I got pain to try and distract myself that the pain seems to get worse. And I’m talking pretty low grade activity like walking or light jogging in circles around my garage.

 

So you sleep protected also? I have to now. How long for you to see any improvement?

 

I wore earplugs for simple things like driving a car and loud places, basically any consistent noise above 70 dB.

I heard you weren't supposed to do that so I slowly stopped wearing them for every day activities and only for loud places. Probably after about 6 months.

I also avoided wearing headphones other than to DJ, earplugs underneath - stuck to this for years, about 5 years later I started using headphones and didn't notice any pain.

The pain occurred less and less as time went on, then I realised it was non existent around 18 months later.

 

Exercise actually helps the pain a lot. It’s the only thing that works. But remember before my noise traumas I got a perilymph fistula or some leak in my head.

Before I even developed noxacusis I was having issues with my right ear having this deep pressure feeling and distortions. Every time I would work out I would wake up with worse loudness hyperacusis, every time. My nose would be clogged, my head would feel funny, and the sensitivity kept worsening. Sound therapy definitely worked for that.

After getting the noise trauma on top of that it seems the two injuries are working together to fuck me. If I work out now the pain won’t change much but my head and dizziness, distortions and loudness hyperacusis will worsen by a lot. If my loudness hyperacusis is severe, my voice sets off the pain more. I bought gym equipment and set it up, got everything I needed in July. I kept working out and the loudness hyperacusis just worsened aggressively. It was bad, so I knew exercise was to blame. Or it could be my synapses still disconnecting over time cause it seems like that’s the case. Not sure. If I don’t find relief through meds this year or anything else I’ll have to bite the bullet and start working out like crazy again.

 

Have you done the bed rest approach for the fistula?

 

Regarding protection and overprotection.

I had an acoustic shock like 8-9 months ago, but every time I use hearing protection it feels like my sensitivity rises.

I have a 6-month-old at home that can be pretty loud. How should I do with that? Like what level of sound would cause harm?

I have also a slight stingy feeling in my bad ear, which seems to get worse with anxiety.

 

Lucky man, I’m glad you got better.

Yeah dude, I literally did bed rest for 4 damn months. Head stuff a little better, dizziness about the same, the amount to set the inner ear pressure off was a little better. As soon as I did a few body weight squats it all came back. Hard to think that re-opened it. I had a blood patch done in January, the inner ear pressure got much worse and instead of walking fast or bending over with earplugs in, simply walking around would make my ears feel like they were going to explode. That got better, but my pain ear is not in my fistula ear. Right after the injection I could not hear shit, it felt good. My pain ear felt instant relief too. Very strange. This could back up the theory that one ear can control the other. It explains why Silverstein’s patients for the surgery saw improvement in both ears. I really need to do it. Badly. But once I do, regenerative meds are off the table.

 

Yes, since late 2020. Improvement came after months. But I am still protecting. I feel my ears need a few more years of protection.

 

Damn man, it’s ridiculous that we try all these things and they may help just a little, but that improvement is so fragile and easily taken away.

I feel like one ear can control the other too. After my original trauma I felt like my left ear was my more sensitive hyperacusic ear, but when it would get agitated my tinnitus always spiked in my right ear, which was my main tinnitus ear. I barely had tinnitus in my left ear most of the time, till this new fucking hum developed since I’ve been protecting 24/7.

Two times now I’ve had a plug come out in the middle of the night or come partially out and in both cases I had pain in both ears and increased irritability/sensitivity in both ears afterward.

Have you researched the CRISPR therapy that they say may be able to reduce chronic pain? I saw it in a thread in the Health Talk section. It looks like it hasn’t gone into human trials though:

https://gizmodo.com/gene-therapy-might-one-day-treat-chronic-pain-1846447969

We need this stuff yesterday. I was wondering if they could just do something like radiofrequency ablation of the Type 2 afferents. Like just get rid of my pain. I don’t plan on going somewhere loud they will cause me acoustic trauma ever again. What do I need these for lol.

 

How is your tinnitus when you are protecting 24/7? Mine is driving me crazy and I’ve developed a few new tones recently. Not sure if they are related to 24/7 protecting or not, but my tinnitus was fairly stable for quite some time before this. And after my noxacusis setback initially several months ago, it didn’t change at all. It’s definitely much quieter for me than when it started almost three years ago. Before this setback I was fairly habituated at times. But now it’s grueling again since it’s mostly all I can hear while protecting.

 

You'll regret it. I don't recommend that.

 

Interesting. Yeah some people think Kv7 potassium channel modulators could help. Similar thing I think. It’s a pill. From the article I’m not sure how they administer it but same thing. Could definitely help a lot. We are in the age of revolution I’m sure of it. Our lives will be much more livable this decade. We just have to make it that far...

 

@Ava Lugo, will you ever be a candidate for cochlear implants? As I understand most people get a drastic improvement with tinnitus once the implants are turned on. Even if I do not have too much hearing loss, I would consider cochlear implants in my darkest moments but I would never get anyone to perform it.

Also please also think about subconscious habituation. It can only be done with sound enrichment 24/7. I know it’s hard with reactive tinnitus but, as I see it, I have no other choice.

 

My tinnitus has improved by doing 24/7 protection. Initially it was also too bad to sleep with earplugs. However the 10+ hours of sleep like a baby is also not possible at the moment for me.

 

Ok, so you are not in a state where you have to sleep protected. Maybe you said that and I just forgot. I have to sleep in earplugs or else I wake up in pain at this point. Were you at a stage where you had to sleep in earplugs to avoid pain, or has it always just been a choice to help strengthen chances of improvement?

 

I don’t think I’m as strong willed as you are. I am struggling to make it through each day. The prospect of years to almost a decade is very daunting. If I could sleep without protection at least, or just get something back maybe I would feel better about it. 24/7 is just so suffocating.

Do you think tenotomy is likely to help if it’s largely middle ear related?

I’ve already undergone one major surgery trying to improve my tinnitus. Originally I had an inner ear osteoma in each ear that were found via CT scan.

There are case studies that have shown improvement in tinnitus after osteoma removal, and I was kind of in denial in the beginning that my problems were from acoustic trauma. I guess because a surgery offered a possibility of hope.

I had the one in my right ear (loud tinnitus ear) removed and it did nothing beneficial. The recovery from the surgery was actually way longer than the 3-6 month timeline they give you. In fact, I’d say the clicking in my right ear that developed came from the surgery. And I’m certain a great deal of inflammation and all the sensitization on the side of my head did. I couldn’t sleep on that side of my head for over a year without getting debilitating headaches.

So while I’m desperate again, I’m apprehensive to dive head first into another surgical approach that, as far as I know, doesn’t have much, if any, scientific backing.

 

It was not pain, but if I slept without earplugs I could feel my ear muscles were tensing up in the morning. I don't know how it would be now. But ears take quite some time to regain some strength. So I will continue to do this for the next few years.

 

Is your low hum a sub frequency? Like 80 Hz?

Sorry I haven’t been following your story, feel free to give me any of these details if you can.

Do you have hearing loss? Age? What was your acoustic trauma?

 

It sounds like appliance hum, so yeah it’s pretty low. It’s only developed since I’ve been protecting 24/7. About two weeks into it. Not certain what brought it on.

My original trauma 2.5 years ago was loud music in my car. A few months ago I went to a record store where the clerk decided to play music. There’s a thread about it in the Hyperacusis section. The music was not loud enough to cause what is considered acoustic trauma, but it setback my noxacusis and it’s been downhill from there to the point I’m in 24/7 protection after other aggravations that were also in “safe” volume levels.

I’m 40. My hearing loss last time I had it tested about 2 years ago was only appreciable in the 14-16 kHz range. I had it tested all the way up to 20 kHz.

 

Yes.

 

@Brian Newman, how has it been for you making it to doctors' appointments and things? You went to see Dr. Silverstein, right? Have any scheduled appointments contributed to your worsening?

I am having several doctors wanting me to come in, but I'm afraid of worsening and basically I know they can do nothing. My mother is pushing me to “start somewhere” though.

 

Thats an absolutely normal range of hearing loss for your age. Most noise induced loss is 4-6k. I still don't think very high frequency loss can create a low bass hum. I am however investigating whether 100hz and under is a range that can uniquely suffer damage from noise as well as the usual upper frequencies. After all, exaggerated subwoofer volume has only been commonplace for the last 30years but had little research done on it from what i've seen. So there may be room for a unique type of damage, whether that be physical on and non cochlear based or simply certain outer hair cells.

How often did you listen to loud music/go out during your life? What was this trauma? these things wouldn't usually happen from a one off unless it was extreme.

 

I only went to clubs and concerts occasionally. Probably less than 20 times my whole life. Not much of a social butterfly.

I played the drums as a teenager. I also had “systems” put in several of my vehicles growing up. I listened to a lot of music from these loud car stereos.

Which trauma? The one that gave me tinnitus, hyperacusis, noxacusis etc was loud music in a car for a few minutes. The record store incident set me back and started the spiral to where I am now noxacusis wise, though the volume level was in a “safe” level, below 85 dB.

 

Yes the car trauma, what kind of volume were you operating at? You mentioned it was 2.5 months before it started. What was unique about those few minutes that hadn't happened many times in your life? Assuming your car systems were pretty bass heavy?

 

2.5 months before what started? I’m sorry, I’m confused. I said this happened 2.5 years ago. My tinnitus and everything started the next day.

I no longer souped up my cars. This was actually the stock system in a Toyota Prius. I cranked it up to near max though. It certainly wasn’t as loud as my other cars in the past. The song I was listening to was bass heavy.

I didn’t get this bass hum tone until a few weeks ago though. After being driven into 24/7 protection by a noxacusis setback.