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

How often do you take those enzymes (you sent me a link for the bottle) each day?

 

Are you now able to have a conversation with another person? I recall you referencing that this was difficult for you at one point.

 

Before every meal.

 

Yes, I went for a walk with my mom about a week ago and had conversation for about 2 hours with no issues. Sometimes the pain in my ears will randomly flare up momentarily and I can't talk while that happens. My mom called me a couple days before we went on the walk and I could feel my ears were not up for talking right at that time, so I had to cut her off quickly. The slight pain I felt went pretty quickly after that. Like maybe 15-20 minutes later.

 

I have to talk on the phone at work and it is not comfortable. I do not necessarily have pain but the sound (including my own voice) is annoying and too loud.

 

Do you take just one?

 

Phone conversations are not easy with any form of hyperacusis. I feel ya. I think you have loudness hyperacusis though, so sound therapy may help you.

 

I have been listening to pink noise with above the ear generators for six months but no improvement. The tinnitus may even be more pronounced. The use of sound generators and sound therapy in general is very controversial.

 

If you are not seeing any improvement after 6 months of use, and tinnitus has even worsened, I would stop doing it. Pink noise is not for everyone.

 

I have an appointment with the audiologist tomorrow and I am going to discuss this with him. I am not certain that it is the sound generators that are causing issues or just stress, exposure to other sounds, etc.

 

@Brian Newman, did the people who have benefited from the low histamine diet have pain hyperacusis or are you aware of other types of hyperacusis (loudness, etc.) who have also benefited from this approach?

 

They all have pain. Their loudness did improve a little though. It’s worth a try if you want your hyperacusis to improve. It’s extreme but that’s why I kept waiting. Then I got so bad I didn’t care if I had to not eat for weeks on end, I just wanted the pain to get better.

 

Can you see if drinking a Ginger ale or Ginger tea makes the burning better?

I have had horrible noxacusis with burning pain in the past and it is moderate now. One thing that seems to help it these days is consuming Ginger.

I just tried to listen to some music thru my sound system for about 15-20 minutes now and the burning came back. Drinking some Ginger tea and will see what happens.

I do think the burning sensation of noxacusis can go away, mine was very bad in 2017 and then more or less went away for a long time. Came back around 2019 and went away again. Then came back this past November of 2021. But it’s not constantly there, only after listening to music or being exposed to louder stuff like leaf blowers.

 

Thank you. Have you tried overprotecting and staying as quiet as possible? I know that this goes against conventional wisdom but some people have apparently improved with this approach (but one person indicated that they got worse).

 

The audiologist wants me to stay with the sound therapy. Some people have improved after several years and I have only been using this approach for six (6) months. I am not very optimistic about it but one can never be certain. Some people have tinnitus that inexplicably vanishes for no apparent reason.

 

I had a telephone call with Ben Thompson today. He is a nice person and seems sincere but I have been disappointed with the counseling part of TRT.

 

Hyperacusis surgeries and options...

Just decided to stay on this thread. I will be applying for compassionate use for NHPN-1010 - the Hough Ear Institute pill. Gonna see how that works out.

I’m on a low histamine diet, helps around 10%.

I will be getting massive amounts of exosome and stem cell injections through IV and IT which is in my ear.

I’m pretty sure I have a perilymph fistula in my right ear (my better ear). After getting a blood patch, both ears felt better and the noxaxusis in my left ear felt temporarily better too. I will have to try more blood patches to see if it seals the leak for good.

I have many more conservative things on my list to rule out. As you all know traveling with severe hyperacusis and noxacusis is horrible.

After a few more drugs and therapies, if nothing still brings me even a little more relief, I will I have to start doing surgeries.

I truly want to wait and see how all the trial results come out this year with FX-322, OTO-313, OTO-413, and PIPE-505. As you all know they are IT injections too, so if I acted too fast and got my round and oval windows packed, these drugs would have no effect on me and I would be dealing with this the rest of my life. All of these treatments should be coming out this year, latest early next year. Then we got Sound Pharmaceuticals’ Ebselen, and potassium channel modulators that could help as well but those are oral. I just need to make it another year. If everything seems like it will fail, which is unlikely, I will have the green light. There’s also Susan Shore’s device for tinnitus which could help a lot if my tinnitus got worse.

For those of you who don’t know, the Silverstein surgery takes tissue from your body and packs it in your inner ear covering the round and oval windows, and he also uses it to reinforce the stapes which can cause hyperacusis and pain as well. For all I know my stapes footplate could be getting yanked like crazy which is causing my pain. I am worried about my tinnitus but most people seem ok tinnitus wise after the surgery. I think it would help me around 20-30 percent, I’m not expecting any miracles. I also have been reading and it seems disconnecting the middle ear bones is another last resort option. I risk my tinnitus getting much worse but from what it seems my tinnitus is not from hearing loss, it’s more nerve and synapse damage.

Round and Oval Window Reinforcement Surgery

Seems this has been done before, but for people who have bad hearing already. It seems it can act as a super earplug and could give up to 50 dB in hearing loss. Many people without hyperacusis are worried about tinnitus and hearing loss, my hearing is no longer an issue to me. Being in this much pain has far more effect on me than being deaf. I could live pretty happily bring deaf, especially only in one ear. My audiograms are probably one of the best on the planet and I don’t mean that in a bragging kind of way.

My audiograms are scary, I hear pretty much negative decibels all the way up to 16 kHz. Let that sink in, I hear 5-10 negative dB where most average people hear between 10-20 dB if they have healthy hearing. I have had 20 audiograms. I wish I was making this up. I mean it’s just that bad. My hearing has been this good ever since the fistula. My LDLs (loudness discomfort levels) have been in the 50-60 dB for a year and I was still going to the gym and working and pushing through it. It was not enough to stop me. When the severe pain came in from the car accident it changed the game.

I still left the house for 5 more months until the pain got so bad I would start throwing up. Like the issue is that every time I set the pain off, my LDLs permanently worsen and the pain gets easier to trigger, and gets more severe every time with minor recovery. The silence and time I need is virtually impossible for a human to withstand it. I would have to lock myself in a soundproof box for 5 years, not eat, not sneeze, and make 0 noise. That’s not even possible.

If anybody has any input is middle ear disconnection I would appreciate it. This is literally second to last resort, besides completely destroying the cochlea. I need to get my game plan in order, because if it keeps worsening, I won’t be able to function to finish the plan and my next move. It seems middle ear stuff can be fixed or reconnected through surgery. So it’s not a "forever I’m screwed" kind of thing. Cochlear destruction definitely is.

I truly think if I had 50 dB of hearing loss in that ear it would help tremendously, and on top of Silverstein surgery, theoretically I should be able to start living life again. With an earplug in, my LDLs could go up from 20 dB to around 70 dB. That should give my cochlea enough time to rest and for the overexcited Type 2 nerves to calm down. Just a theory...

 

I've thought about that, just in case things would get really severe for me in terms of perpetually worsening tinnitus due to reactivity. I'm curious just how much a person hears if the middle ear bones are removed. I guess there would be quite a bit of sound still being heard in louder environments through bone conduction? I think the vibrations from riding a car would be heard quite well, for example.

 

This is interesting regarding your age. I had this at the same age. I’m 35 now. Things stopped after about 18 months.

I had a career in music and continued to make music even through the pain at super low volume. I wore earplugs in the car etc

But as I said, things eventually improved once I started living normally and not wearing earplugs around everything. I can’t guarantee that would be the reason but I think based on our similar ages you’d have lots of hope.

I’ve worn earplugs at every event since 23, however I’ve been to 300+ events in those 13 years. My hearing in that ear is considered crystal clear when it comes to the tone test.

So that says something about earplugs working.

I only started experiencing ear pain again and a low hum which makes little sense when you look at a hearing test.

Tempted to push through as I did last time.

But just wanted to let some people know that I made it out alive in 18 months and had 13+ years of a music career since.

 

You read the article on Hyperacusis Focus? I think it reduces like 40-50 dB. That would be nice lol.

 

I’m glad you got better. For some reason some of us only get worse. Like even 3 months after my acoustic trauma and acoustic shock I was not that bad. Slowly over time sounds started getting more painful, and it just kept getting worse the more I exposed my ears. Every time my pain has gone over an 8, it permanently worsens and my tolerance drops. What really made things worse was sound therapy. I think I overdid it. The loudness feeling almost resolved but the deep ear aching and pain got catastrophic. I have a deep earache almost all the time and it is just horrible and worsens like crazy if I’m exposed to anything over 50 dB.

I wish I had it like you man. I’m not a sissy. I have always believed push your body to its limit without hurting yourself. Don’t be scared, man up. With that mentality, I have gotten so much worse with this condition. If I just stayed home for a few years I would probably be ok. I mean there’s just no pushing through it, every time I would push I would end up getting worse pain that would progress over the next few hours that left me throwing up or just passing out from the pain. There’s definitely different kinds of this pain hyperacusis. I mean I know some people in real like that have it, they get horrible pain from sounds and that’s it, pain for a minute, then gone. No worsening. If mine was like that I would say fuck it and just live life. I tried that and realized it will continue to worsen. I need to be able to shower, cook, and do house shit workout horrible pain. For two months I had 0 tolerance to any noise. I don’t even care if I get my life back, I’m not going back there again.

At least I can watch some TV on super low volume and I am so happy I can do that. I’m 10 months into pain hyperacusis and it’s only gotten worse. Who knows, maybe I’ll start healing. I don’t know why I wouldn’t. Before this garbage I was an animal, strongest 170 pound guy you would ever meet, ate healthy, was active, lifted every day, viruses, diseases had no chance, my body just killed everything. I mean my whole life my body has healed from everything faster and more effective than most people on this planet. After a few ear incidents my body just gave up and stopped healing. Not sure what’s happening, probably my fistula or other co-factors, because I still have a perfect audiogram up to 16 kHz, perfect speech in noise test. Don’t understand how my ears can be this fucked. Sorry for the rant bro.

 

Man it’s totally fine.

I started getting the ache again above 60 dB whilst making music so there’s always a chance I’ll be in your situation soon as I’m older now.

It was starting to hurt last year but seems worse now. I can completely imagine your situation being hell and, as I said, it wouldn’t surprise me if I end up there eventually as this definitely has felt different given the low hum and progression of both.

I don’t think you’re not pushing through, I recognise we’re in different positions and I pray I don’t end up there/improve soon.

There’s just no answer for some of these things. It’s actually fucking ridiculous and I can’t believe you haven’t found some kind of treatment that at least helps. It’s also ridiculous that doctors can’t really pinpoint a cause and there are many different reasons.

Mine for example didn’t seem to appear or start from an obvious acoustic trauma.

What’s the situation with nerve pain suppressors? Surely there’s medication for that.

Like what do they give if someone has an inflamed nerve?

 

I know it’s ridiculous how this can’t at least be treated. Yeah there’s nerve pain suppressors like Gabapentin and Cymbalta, and stuff like that. My tinnitus can stabilize but will react to anything that’s not food or basic supplements. When it’s stabilized I can at least sleep ok and relax when I’m not in horrible pain. Almost every drug or thing I have tried has left me with more tones. 2020 I had hissing and occasional ringing in my right ear, now I have 3-4 tones in both ears. It gets to a point you have to ask yourself can I live with worse tinnitus if my noxacusis does not improve. That’s a no for me.

If my noxacusis improved a lot and tinnitus got worse, maybe, but yeah, drugs are such a risk for me. It’s like Russian roulette.

I’m trying to make it till OTO-313 or Susan Shore’s device so if I start taking hard drugs my tinnitus won’t drive me to death. It’s one thing suffering from one condition, but suffering from both while losing everything in your life, not being able to exercise, talk more than a minute, no volume from anything, being stuck at home staring at the wall listening to blaring tinnitus is just torture. Just simply working out or leaving the house helps incredibly with depression and mood, not being able to do that makes it impossible to cope with such an illness.

I’m still on a low histamine diet and started Pulsatilla so I’ll see how things end up. If I don’t improve, I might have to turn to drugs, but it’s just horrifying if I get even more tinnitus.

 

Did Gabapentin and Cymbalta help with the pain for you? Assuming you’re saying they also caused more tones.

When we experience pain, do you think we’re doing any more damage or it’s just a weird reaction that is irrelevant to the long term effect on hearing/damage?

With this kinda pain I’m sure it makes you feel like the ear is fucked beyond repair but I think it’s pretty likely that ain’t the case as we didn’t do anything bad. I know people 100x worse than me when it comes to noise or protection.

To me subs/bass creates a strong reaction and ache. Considering the tinnitus is down there, it makes me feel like there’s some kind of damage and the pain makes it feel like even 50 dB is doing more damage.

I’d at least like to have some idea on that front.

 

Well, I actually didn’t try those meds yet because I’ll probably get worse tinnitus. I tried Prednisone multiple times, diuretics for my head issues, and a thousand supplements.

Yeah at this point who knows what’s damaging and what’s not. I didn’t think noise, even moderate noise, could damage me through earplugs. Now I’m worse. It’s definitely not hair cell damage. It’s probably those Type 2 nerves all pissed off causing more inflammation and getting the whole cochlea riled up.

Synapses getting overexcited maybe? But I still don’t believe noise under 50 dB can cause damage but it sure does feel like it lol. Apparently the Type 2 nerve fibers which are pain sensors don’t get damaged at all, they get triggered by synapse damage or outer hair cell damaged. In some people they don’t turn off. There’s another theory about a chemical called ATP that can keep triggering the nerve fibers leading to non-stop excitation. Gotta be a way to just shut it off. I hope regenerative meds work.

 

This might not exactly be my thread but my tinnitus is crazy reactive for now as a result of a recent noise trauma. Have no pain though so I guess that I am blessed in that aspect. Plugging my ears now 24/7 except when sleeping. I can hear the reactiveness through my 3M soft earplugs. I know this might not be the right approach but I benefited from this strategy before. Sound enrichment even on a low volume dose not seems possible for me for now. Sometime I am thinking of pushing myself through pink noise but I simply do not know what´s right.

Typically when I have this kind of trauma, I take 3-6 month until I start to un-plug again. First in quiet meetings with discussion with just a few people or dinners with my family. Once that works, I can start unplugging more and more. Just seems every time to be a bit more difficult to improve. Can´t afford to mess up again... but I said that before. Problem for me is that even if I protect my ears I will get hurt in loud +100 dB environments and I get permanently weakened ears.

Crazy reactive tinnitus is really tough to handle... even though I understand that having also pain involved in this would make it even harder.

 

@Brian Newman, you're a beast! I read through these posts and man I don’t think I should ever complain again

I wish you the best, hopefully something out there can help you soon and give the much needed relief.

 

Yeah, interesting. I wouldn't assume that meds are going to give you a new tone though. Even though some have in the past. Every med works differently. I agree with you in theory that low volumes shouldn't be damaging it but just being cautious at the moment as I don't want to end up unable to leave the house.

I feel like there are different causes for pain/loudness hyperacusis and people are lumping them into the same category. The reason I say that is because I have something different in each ear. In order to work out and have expectations about each we should probably be looking into that more.

Description below, would love to know how you'd categorise it from what you've read.
And also would be interested to hear what type you think you have.

LEFT EAR - SUDDEN
At loud volumes of a certain frequency it tweets/peaks out when a certain frequency is too loud. I guess you'd say it distorts. It's jarring and sharp, sounds go from normal to loud real quick. Other than that it's not really an issue, I just have worn earplugs in loud places forever. Some would say there is a bit of recruitment going on in that ear above 70 dB. Arguably hyperacusis in the way that sounds are super loud and shocking. I've had that forever and actually can get around that quite easily.

RIGHT EAR - ACHE
I had what I'd call a proper hyperacusis episode there for 18 months about 15 years ago. It eventually went away and I don't remember any pain in that again til now. One interesting thing is that in loud environments sounds are way quieter in the right ear than in the left. I had started assuming that was recruitment in my other ear but don't think so. Anyway, I started getting a low hum a year ago. I noticed my ear would get tired easily and start to ache a little bit. I ignored it because it wasn't too bad. That has gotten worse in that ear. But there is no SUDDEN reaction from loud sounds. The longer I listen to music above 60 dB, or especially bass, the more it aches and takes an hour or so to calm down. Sleep will also calm it down and reset it. By the end of the day it can easily be hurting. I make music for a job (very quietly) and if I don't work on music I can usually get through a whole day without much issue unless I'm talking loudly to people for 15+ minutes. It actually feels like someone slaps my eardrum or even that side of my head if it gets bad.

So to summarise, it's immediate reaction vs. slow ache/burn reaction. I don't see how they could be the same thing.

I can actually live with the immediate one far easier because that would never engage from working on music at home.

Yours sounds more like my right ear, I assume? Do you have any sudden reactions?

 

Yeah, well my left ear just worsens every time I feel pain. That’s the issue. It’s like a deep ache or stabbing or razor wire being dragged through my ears. Sudden reactions I feel a flutter in that left ear it’s probably a middle ear issue. My right ear will swell up from a loud noise and tinnitus would spike. Very strange.

Yeah, the tinnitus is annoying as hell and the pain sucks but the issue is the pain worsens all the time from any noise. If I was in the same level of pain all the time and it didn’t worsen, I would be fine.

 

Hey David. I have been suffering from invasive unmaskable reactive tinnitus for a little over two years now. It started from a cold. Doctors couldn't find anything. This is hell on earth and it's been a living hell for awhile now. I have had good moments where I'm enjoying something but I very rarely get days where the reactive tinnitus is on the quiet side.

I wonder how you deal with reactive tinnitus? I mean, what do you do to distract yourself?

I can't listen to music or watch TV with sound on as the tinnitus is too distracting because it tries to compete with the voices. I hear my tinnitus all day long since nothing masks it. I'm aware of it to some degree even when I'm trying to distract myself. It is very hard to not be depressed by this.

How do you deal with it?