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

Talk with a neurologist, many of us got help from Clonazepam, Duloxetine or their "relatives".

 

@Taw thanks brother.

 

Deflazacort, only after very loud noise.

 

It’s been about 1.5 years since I developed pain hyperacusis. About a year since a massive setback where I couldn’t stand to listen to the water droplets falling off of me in the bathtub. These last few months have been much better with talking and lower frequency noises in general. I have hit a plateau with high frequency noises, but perhaps that too will change in time. I believe that even the worst cases can improve at least somewhat with years of diligence. We’ve all considered taking the quick way out but I don’t think I’d like being dead any better than my current lifestyle. Might as well stick around if you can to see if treatments do happen.

 

I am glad that you improved, man.

Can I ask what could you now and couldn't 1 year before?

For example my pain is 8 hours a day at least and I cannot bare my own voice. In the bathtub I wear earmuffs, that sound is killing many of us.

 

Calm conversation, music as long as it isn’t too high pitched, car rides with my earmuffs. I’ve even taken showers, recently. I’m still bothered by cutlery, electronic beeps, squeaky doors, sirens etc but even that has improved. Those noises don’t “cut through” my earmuffs like they used to. Also, it used to be that when an emergency vehicle passed by, even at long distance, I would hear the noise long after it had passed. That hasn’t happened in a long time. I think in another 2 years I might be close to normal, if this pace continues. Problem is, a major setback could reverse all of this progress, which is the true horror of the condition. Just have to survive long enough to reach a treatment that can at least soften the blow of setbacks/speed up recovery.

 

Yeah, that's so true.

Good luck! The more I read and research, the less I believe on a possible treatment for this to be developed soon...

 

Totally agree, almost the same papers as 8-10 years ago. Someone older said that for tinnitus there are the same papers for 30 years and he is already 70-80 years old.

 

Sooo true, indeed. I fear the worst the dentist. If I will have an accident and some teeth are damaged, I am screwed. One cannot have good teeth without fixing them from time to time and the drill is horrible.

Btw, can you fly, can you use the bus or subway?

 

Probably, if I doubled up with plugs and earmuffs. I’m not sure because I’ve lived as a hermit during the pandemic even before I had hyperacusis. I’m scared of getting sick because it can cause tinnitus, and I live with my immunocompromised mother so I don’t think I’ll be using public transportation anytime soon.

 

In order to restore natural hearing it is very likely that gene therapies are needed, or stem cell therapies. Many countries do not even allow scientists to pursue those investigations, let alone that it is very complicated stuff.

The old articles about the "magical hearing pill" that restores hearing are now history. From time to time there are "researchers" and some charlatans that try to revamp those old articles saying the same thing in a different way...

Going back to old articles is just downlifting, very disappointing, because things have not improved one bit in decades.

 

Yeah, me too.

I understand that your hyperacusis and sound tolerance has improved, but how is your pain? Do you still have pain episodes?

 

I do still have immediate pain in response to loud high pitched noises. It’s not as intense as it used to be, and it doesn’t linger very long, unless multiple noise events happen in one day. Usually, a good night’s sleep is able to reset the pain. I wear earmuffs whenever there’s a chance of a painful noise, such as when I’m in the kitchen, so it doesn’t happen very often.

 

I am glad that you improved. This is such a dreadful disease, so we have to consider all small improvements a victory.

When I read that people improved a bit after 2-3 years, I wonder how they got through this. But then I know people with fibromyalgia who are in constant pain (my pain hyperacusis is also almost constant) and not even morphine work on them...

 

@Brian Newman, hi man,

I have tinnitus and I am sensible to sounds in both ears.

All started a week ago when I went to a caloric test - I did not have any previous problems with my ears. I so do regret that...

First the tinnitus started and then several days after I noticed sensibility to sounds and my ears started gradually to feel pain.

Do you have any advice for me? Is this just a tinnitus and hyperacusis and spike or I am going to suffer a long time... (although I had maybe 0.5-1/10 tinnitus my whole life and I was happy with it and did not know it is even a condition. It was nothing for me.)

I did already went to a ENT and otoneurologist who only gave me sedatives... I am having trouble sleeping due to the high pitched noises (hissing and one fluctuating)

Even clicking on the laptop's keyboard irritates me.

Also how do you manage to wear earplugs without noticing your tinnitus?

Best regards,
Freerunner

 

Usually hyperacusis improves over a period of 2 years. I am 95% cured of hyperacusis but the tinnitus remains mostly unchanged, but maybe a bit lower than the first year.

After a sharp noise trauma - the explosion of the air bags in your case - hyperacusis does not start right away, it takes about 10 days to 2 weeks for the nerves to start detaching and damaged nerves pain receptors start to be exposed and create the pain you experience with sound. I think that the brake noise was just a coincidence since it was about 2 weeks after the explosion.

You can improve nerve healing by doing light source therapy (powerful LED light in the 650nm to 1000nm frequency), aka LLLT, there are studies to prove that it helps nerve healing for a range of injuries, brain injuries etc.

Also, airbags can be easily deactivated by the owner, but mechanics are not allowed to do it to their clients, depending on each country laws. As for me, I opened the center console where the airbag computer sits, and simply did unhook the yellow electric wire which connects the computer output to the airbags, so that once the collision sensors are triggered, no electric current can reach the airbags and they cannot deploy. That's what I did to my car... of course I may be dead in case of a major collision but I take the risk.

 

Hey Freerunner, sorry that happened. I have heard some stories of the caloric test messing with people's ears. What were you doing the test for? Dizziness? And my best advice is to protect your ears as much as possible. Did you get any hearing loss from the test? I don't think you're screwed forever but your ears are vulnerable now, they need to heal. If I was more careful after my trauma I would not be where I am today.

Don't stick anything in your ears for a while, no headphones, no clubbing, anywhere that exceeds loud noise wear earplugs, and be careful with nasty high pitch and metal noises. That's what started making my noxacusis severe. I think you will be ok if you're careful for a while.

 

That’s smart what you did to your airbags. Wish I did that, or at least was wearing earplugs. And that makes sense about the nerve detachment. I have been looking into laser therapy and stem cell therapy. There’s a place in Saratoga Florida that’s 2 hours from me and they offer it. I have been going back and forth with somebody there and they think it could help. Definitely worth a shot but it’s 10 treatments and it’s $3k. My noxacusis is so bad I can’t drive, it could kill me. So still debating it. Also debating stem cells, maybe it could promote nerve healing.

Also been looking at creating my own Hough bomb blast pill, since they say it helps nerves, maybe worth a shot. Still considering oval window reinforcement. I know it’s not gonna cure the nerve damage but maybe give me a little relief. I also suspect some pain is middle ear related so stapes reinforcement could help too. Being very careful with my next step because one more worsening, I won’t be around.

 

Do you want to wait for the results of the guys who are doing the HEI project or do it before?

 

Hi @Brian Newman,

I am very careful with noise exposure. I do wear earplugs when near the traffic or in the metro. Also when I am with other people, because conversations could be noisy. Hyperacusis feels a little better but not significantly much.

I did not have any hearing loss from the beginning. However, several days ago a dog barked right next to my ear (he was behind a fence I was walking right next to it) and since then my ear has been muffled and it won't let go event for a moment. I was wearing earplugs that day but just unplugged the right one in order to speak on the phone and this happened. At the same evening this ear started being louder with a higher pitch tone than before. I have an appointment with an otoneurologist tomorrow.

What brings me down Is that I cannot see people's tinnitus improving after a hearing loss of some sort. Have you heard such stories?

 

Wait for my report on stem cell secretome (basically exosomes) which have been shown to work in mice after acoustic trauma or ototoxic medicine. I am going for my infusions at the end of November.

For that you need a laboratory. I am a researcher and can tell you that to make large quantities of it, you will have to use rather large quantities of toxic solvents, so you should use a fume hood.

 

I'm 23 as well and have run in to a lot of the exact issues you have.

My advice: Ask your dentist to do as much manually as is possible. Not use any machines wherever possible.

And for ear cleaning I suggest asking (or rather demanding) for a fully manual cleaning. No water and no vacuum. The vacuum makes noise. Having it manually scraped out has been the best for me.

Wish you the best.

 

@Brian Newman, I can guarantee that your hyperacusis will cure itself after 2 years, provided you don't re-expose the ears to very loud noise again. Normal noises are fine. Just be patient, you are still very young so that helps. But the damage will remain for life so no more loud clubs, shooting guns or concerts etc, even with earplugs. Normal driving will become fine again in due time, until then just wear earmuffs. I drive all the time, but I did buy a different, quiet car.

 

Yeah I know a guy who lost his hearing from clubbing and his tinnitus went away after a year. There’s tons of stories of people’s tinnitus going away even with hearing loss. I mean I had hearing loss for a year and it came back. The hearing tests are garbage. It does not mean it’s permanent. In the beginning my tinnitus took 14 months to go away and all I had was hissing for years. Before I got severe I learned my lesson and would have plugs in as soon as I leave the house and not take them out until I was guaranteed safety.

It’s an annoying way to live but better than getting worse. Even if yours does not go away, as long as is not catastrophic, I have met a lot of people who stop caring about it. It only bothers them sometimes.

 

Well let us know how your exosome treatment goes. I have heard good things about it. Could potentially help.

And yeah I have a friend who’s a pharmacist. I’m still discussing it with him, if he doesn’t risk his career he will make them for me. Tricky thing is, the dosage. Some people I know who made it said 6g of NAC and 6g of HPN-07 a day. Every couple hours. Since rate I think were I think 300 mg or 500 mg... I can’t remember. I do think this drug has the potential to help noxacusis.

 

I appreciate your positivity. That is definitely something this community needs. I have been studying tinnitus, hyperacusis, noxacusis, for 5 years intensively now. I know there are cases that weren’t reported or when they improved they never returned. When I recovered the first time form mild tinnitus and moderate hyperacusis I never came back. Wanted to never talk about it again. In my specific case I have only gotten worse over the past 8 months. Only a few people I have met who started out moderate like me and got severe. Especially the way my ears are feeling and reacting to sound.

I already gave up shooting, clubs , sporting events, anything loud years ago. The reason my case is so bad is I get worse from noises under 70 dB. I get worse from noise under 60 dB. And it only gets worse. I really doubt I will naturally heal to the point I can even go in public again even with earplugs in.

I absolutely hate being negative on here, nobody needs toxic mindsets. I hope every second of the day your right, but it will be a miracle if I even recover partly from this.

 

I am encouraged by your reference to hyperacusis curing itself within two (2) years.

I have had it for fifteen (15) months and have seen no improvement. I wear above the ear sound generators and receive counseling. I do not overprotect with earplugs nor do I expose myself to very loud noise.

Is your statement about it curing itself in two (2) years tailored for Brian Newman or for all folks?

Although perhaps uncommon, there are some people with significant hyperacusis who do not improve and become somewhat housebound.

 

He’s probably talking about me because I never had problems with my left ear which is my bad ear. For me curing it means getting stable and being able to leave the house with earplugs. That is enough for me to be happy. I get setbacks from chewing and sneezing lmao. I got this shit bad.

My tolerance is 0 on bad days, on good days I can listen to the TV on minimal volume and listen to running water and be ok. I learned from this condition that people think they have it bad sometimes when it’s not. It definitely sucks on any level but yeah it depends who and how. Like my ears could possibly recover but my tolerance will never go above 60-70 dB, there’s just no way, they’re too damaged. People who are moderate usually don’t get their full tolerance back but to a point where they can do most things. There’s no knowing with this.

 

There is a very interesting article written by an audiologist named Norma Mraz and one other person and it discusses a severe case of hyperacusis and the process for improvement. You can probably find it by Googling her name. The patient went to extraordinary lengths to avoid sound.

 

This is my update too by the way:

Yeah I just read it, I have read probably over 100 stories like that. Gives a lot of people hope. It really depends on how long the person has hyperacusis and what the damage is from, and where in their ear. Hyperacusis can be caused by so many different things. Honestly it’s sad but a lot of people with loudness hyperacusis will act like that. Same story as what I read about that guy who was in his house for 6 years. There are many many forms of hyperacusis. In my opinion sound therapy can be helpful to those who don’t horribly worsen from noise. My loudness hyperacusis in August was severe. Every noise sounded like an explosion. Touching a piece of paper felt 100 decibels.

At the time if I talked I would get actually aching pain or if I was pushing through my hyperacusis too much. And I got severe stabbing pain from high pitch noises like car breaks and metal squeals. I thought I was bad, then sheesh, was I wrong. Earplugs worked then. I could make short trips to the grocery store, eat dinner at my parents, go for walks, shower with earplugs in. I was in pain but it was more like temporary pain as long as I was careful. After reading all the crap from Jastreboff, all the articles and hundreds of claims of people recovering from hyperacusis, mostly loudness and some from pain hyperacusis, I made a online appointment with Ben Thompson. Really nice and helpful guy. I explained my situation and he was confident my personalized sound therapy would help but he was weary of the pain hyperacusis.

He told me loudness hyperacusis can definitely improve and the pain hyperacusis could too but I need to be careful with it. I sat in my living room, put a fan and an air purifier next to me and played video games 12 hours a day. At the time I was decently comfortable in my house from outside noise unless it was an airplane or really loud car.

Within 6 weeks I could sit in the shower (75 dB) for an hour with no earplugs and not be bothered at all. I could talk for a short time with no issues. The buttons on my Xbox controller stopped hurting. There was a period of two weeks I actually saw hope. But then one day I was in bed listening to my fan and the air purifier’s noise started to make my ears ache. I thought nothing of it and went to bed. I woke up and I was fine. But I had more and more discomfort of my sound therapy over the next 2 weeks. I started getting aching pains in silence, and it kept getting more painful. I kept telling myself don’t give up, push through it.

One day I wake up and my nose was leaking like crazy, honestly I don’t know if it was just allergies or CSF fluid. It was a lot. It kept pouring out. My ears felt better after my nose drained. Then the pain aching I kept getting was happening more frequently and getting more severe. One day I sneezed 20 times. I took a shower thinking it was ok, one loud puddle of water hit the floor and I felt the same snap I heard in May when my ear starting getting bad.

Soon enough my pain got so severe I started throwing up, walking hours barefoot until my feet bled. My loudness hyperacusis was still temporary gone, but my pain tolerance kept dropping. Soon it started hurting to chew any food, to shower even with earplugs in. I had to stop leaving the house completely. I had a few setbacks that left me in so much pain I would wake up in the night having light seizures from the pain and losing control of my body, I would get up and run for hours until my feet bled again.

December 2021 was the lowest level I have ever been had, I truly almost killed myself. But I’m not going to give up so soon. At this point I was getting severe pain from every single noise. I lost all hope. I started an extreme low histamine diet and I started seeing baby progress.

On good days I can now shower with earplugs in, watch comedy shows on low volume, and talk to friends with earplugs in for a short time. I still get horrible pain but it’s a little less and does not last as long. Still completely debilitated. I also was suspected of a perilymph fistula in my lower pain ear and somehow made a two hour drive to get a blood patch. The drive I thought was going to kill me literally. Surprisingly the worst pain I got was from some ass with his flip phone on full volume in the waiting room. I made the drive back and my ears felt a little better sensitivity wise.

Tinnitus definitely spiked though. My injection ear was sore and hurting from the injection. It’s recovering more and more every day. A few days ago I made a risky decision to test my ears since the blood patch and a month of the low histamine diet. I left the house with no hearing protection on, only earmuffs on my neck just in case. It was 2 am though, I’m not ready for daytime stuff. Normally sprinklers, the pool units, and ac units from houses would trigger the pain. Everything seemed less amplified, and I made a hour long walk and made it back with no pain.

Past few days I was getting better seeing improvement, then one day I cooked my chicken wrong and it turned out all chewy. All the chewing and noise I made eating it started up the middle ear pain again, then made it’s way to my inner ear. I’m in pain as we speak and I am very upset, but I hope it will go away with a few good nights of rest. I definitely have some middle ear pain, along with neck and maybe some TMJ triggering the pain who knows. I also talked for over 3 hours to a buddy on Xbox. I still can’t stand artificial audio really I had it on subtitles. But talking that long was a win. Now it hurts again to talk. I hope with time it will ease up again. I am getting weary of how careful I have to be it’s exhausting and tiring. One wrong sneeze or crunch chewing and I have to start all over.

It’s insane how bad and painful this can get. Truly, there is probably not too many people on Tinnitus Talk who had or has this condition to the severity as me. I know a few who are worse than me actually. There were definitely quite a few people who had it worse than me and improved with time. I am definitely not the worst, but I am up there. Only these people with true pain hyperacusis will understand the horror and despair of this condition. The people who have it the worst have severe pain even in silence, pain triggered from every noise, tinnitus spiking to everything. Every time they feel pain their tolerance drops, and the threshold for pain is lowered.

My LDLs were truly at 0 for a few months and man was it an absolute nightmare. So terrifying and painful. I am thankful how I can recover fast on this diet but my setbacks happen extremely easily. I am thankful my tinnitus is not catastrophic because that would be the end of me. I am still in a lot of pain, but I have some sound tolerance.

My point about the sound therapy is that unfortunately it does not usually work for true pain hyperacusis people. It can work for people who feel pain temporarily and their loudness hyperacusis is severe. But people who have long lasting severe pain that worsens with noise I think sound therapy is not a good idea. Sleeping, eating right, silence, taking the right supplements is key to recovery.

I really don’t like those articles talking about severe people getting treated with TRT. They make it seem like the patient was exaggerating and that sound therapy works for everybody. It truly does not, especially for pain hyperacusis. It is much worse than they realize and there are many co-factors people need to discover and treat, to give their ears a chance. I wish it was as easy as wearing generators and slowly upping the volume every couple of weeks. Those audiologist don’t realize you can’t make somebody with a broken leg walk. You just allow healing. Then slowly ease your way back in. Pain hyperacusis can be 10x worse than any leg injury. I read some stories of people with pain hyperacusis giving themselves years of silence, then slowly doing their personal sound therapy.

Who knows, everybody is different with this crap. I hope I improve much more in the next couple of months, I am excited for 5 drug trial results coming out this year. It’s a big year for all of us. If they all fail I will be going to Silverstein and getting surgery on both ears and possibly having him disconnect my middle ear bones and cut my tensor tympani. I’m not living with it this bad forever. I can live a quiet life but not having to worry about chewing and only leaving the house at 2 am. This December I will know if any drugs have a possibility of getting to market, if I don’t think any have a chance I will decide if my hyperacusis is the stubborn type that does not get better after two years.