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

What is it about the yogurt that causes such an adverse impact? I am just curious.

What is it about yogurt that causes issues? I have been eating a lot of it lately, and my issues seem to be more pronounced, but eating yogurt may just be a coincidence.

 

Hi @AbeS -- I use my index and middle finger tips to apply a very light covering over my whole ear. I then apply it behind the ear as well, all the way to the hairline behind the ear. I don't drip the oil into my ears or anything, but I do stick my index finger slightly into my ear to coat the entire outer ear. I usually put heat on them for about 20 min. or so.

 

Probably not just yogurt generally, it was that brand (Skyr) that messed with me. I was fine with Chobani. I think I was having too much dairy overall. I was having bathroom issues for weeks and was eating more dairy in those few than I have in my whole life. I was having massive amounts of dairy every meal.

 

Thanks for all the information.

I'm still not better and I'm in a really bad place right now. Some days I wake up almost without pain but all it takes to set it off again is a quick shower or talking to someone for a few minutes.

How long have your minor setbacks lasted generally?

I stayed at home in silence for over a week but I've been outside a bit the last days, or else I would go insane. Would you say it's OK to drive to the woods and take walks or do I need to be even more careful?

 

I'm currently going through the same as you. Last time I had a setback like this, it was maybe 3 or 4 weeks until it really started getting better. Usually then I just forget how bad it was and live a bit more normally.

We need to expose ourselves to noise again eventually so go for it but start very small and if you get into pain with anything then stop right away/put on earmuffs/earplugs.

It is a very slow recovery but it will happen. Going back to silence as soon as your ears start to hurt seems like the best tactic. I'm still trying to figure out what's best myself.

 

I wish I had the right answer for you. This condition is so different for everybody. It’s hard to give one advice but I will say do your best to avoid noise that triggers pain. When everything triggers pain, you have to do the best you can. Mine has a mind of its own and sitting in silence is the only thing I can do because if I don’t, it gets worse extremely fast. Silence never really did much for me but the pain definitely wouldn’t worsen from it. I had a horrible setback from an allergic reaction and the pain that finally was getting better came back full force; almost killed me. After 8 weeks of hell I’m finally getting a little better only because I have kept doing acupuncture and I keep running at night. Those things seem to help. Before I started them, I never saw improvement with the pain.

My advice for you is listen to your ears. I can’t tell you what is safe or not because we all have different versions of pain hyperacusis. So if you’re not catastrophic, I do agree with some of the statements, to not completely withdraw from society because there’s no truly going back. Keep trying to do little things like you’re saying but just don’t push it. I write down exactly what I do, my pain levels and tolerance so I know not to do something again if it worsened me. Write down the noises you must avoid. Log everything. It comes in handy.

My smaller setbacks are a few days to a week. My bigger ones are permanent worsening with less ability to tolerate the sound that set me back. It also leaves me with worsened chronic ear pain I have to deal with that gets harder and harder to calm down every time. All this depends on your case and if you’re a person who doesn’t improve much or not. I do think with pain hyperacusis there’s hopefully a level of slowly exposing yourself to low level sound to see your progress. Still have to avoid all my trigger noises at all costs, but when I first got a little better, I would talk until I felt the pain kick in, try to watch a little Friends on HBO, only show I can watch weirdly, run the sink without earplugs, sit in the living room and listen to the fridge, only if it’s not causing much pain. One wrong noise can worsen me and I have to start all over. I’m definitely not a believer in sound therapy for pain hyperacusis, but I’m more testing the waters on what I’m ok to be exposed to. Noise never helped my pain hyperacusis ever. But it definitely helps with the loudness hyperacusis.

I’ve had people question me when I was getting a little better, and be like "fridge, or talking? How do you do it? It’s not that bad." No, my tolerance was 0 for a while. I just haven’t had seen many people with my pain levels. There’s definitely quite a few people with worse sound tolerance who don’t get as severe pain if they’re careful and don’t overexpose. When my bad ear gets really bad, I just leave an earplug in and avoid every single noise or the pain will go nuts. And my issue with door squeals and high pitch noise, I cannot hear those noises at all or I permanently worsen. Those noises aren’t even loud either. I’m sure there’s worse people than me out there for sure, most of them are drugged to hell. I wish I could drug up but my tinnitus goes bonkers.

Not sure how bad you are exactly, but when you go for walks, put earplugs in, have earmuffs In hand just in case. That’s what I do only because crickets outside and air conditioner units hurt me. I won’t go outside during the day at all, my street is too busy during the day. It hurts really bad. Night it’s controlled and I can do much more.

 

I want to start running too, so what do you recommend? Running at night without hearing protection, or running with earmuffs on? Does the running help the stabbing pain at all?

 

That’s the tricky part, before my last setback I could manage much better. Now I have to take days off to recover. Certain earplugs have less occlusion. And depending how deep you have them affects it too. If it’s bad booming, my pain will get triggered very fast and if I keep running I’ll be in bad pain. I had to try a bunch of different earplugs to find the right one and had to keep adjusting until the occlusion wasn’t bad. My left ear is the bad one. My right ear I get more middle ear pain and maybe a little cochlear but it’s fine now being outside at night as long as crickets aren’t too loud. I leave my right ear unplugged because it heals as well. Sometimes I have an earplug in my left ear and earmuffs over it and my right ear exposed. I think having one ear open helps a lot too. If both ears are equally bad, maybe a trainer or some cardio equipment inside is safer. Took me over a year to find the perfect times to run and have guaranteed silence.

Between 2:30 and 4:00 are ideal times for me. All the loud crap cars are home from the bars, police helicopters that always get me stop at 1:30, crickets are a little quieter, frogs croaking are quieter, no traffic at all actually. Any other times I get hit with noise, then get worse. Running definitely helps the pain, my bad ear does feel better from cardio, depression better of course, sleep, and my head issues feel better too. If my pain is below a 6, running kills the pain for a short time too. Over a 7 nothing stops it. If I could tolerate crickets and AC units, I could just run without earplugs because otherwise it’s so quiet.

 

Which earplugs do you find the best? Most I have tried always give me pain after an hour or two.

I really agree with exercise helping the pain. It helps mood so much too which probably does also affect the pain according to some research. But being healthy in body is obviously just beneficial overall.

 

Mack’s Comfort seem to have the most protection of anything I’ve tried, and for running Black Noise earplugs (it’s a different foam, lighter, less occlusion.)

 

This is the longest lasting setback I've ever had. Usually the pain lasts for 2 - 5 days, and now it's been over two weeks. Maybe I'm slightly better than a week ago, but it's very minor.

Have you seen any improvement yet?

You are really strong and brave for living with this, it is one of the most horrible experiences I have ever had. Over two weeks now with near constant ear pain. I have the same experience as you with smaller setbacks, so this one lasting this long is really worrying.

I would say I'm severe at this point but maybe not catastrophic.

 

Thanks for your kind words. My longest bout of pain was 8 months nonstop. Absolutely horrible. Hopefully I improve with time. All I can think about is the other side or if there is one. One day right.

 

The first really bad day was about 2 weeks ago where I had ear fullness, VERY bad stabbing pain that lasted only 2-5 seconds but happened once every 20-30 minutes all day. I also had a fluttering in my ear which lasted a few seconds and happened every so often.

I'm about two weeks in now. The fullness is almost totally gone. The fluttering is totally gone, it lasted a week maybe. The pain is still there but the worst pain never repeated like it did the first day. I have an ache almost all the time but sometimes I get a much worse burning pain and I'm not sure why.

My pain is almost always delayed so I don't often know what exactly is causing it because I have pain in silence too anyway. I've been getting pain in my "good" ear too but think this could be some psychological thing just because the pain in my bad ear is so bad. Like how Silverstein surgery people heal in both ears after getting surgery in one ear, not sure.

I'm just wearing earmuffs and earplugs almost always and not leaving the house until it gets better. It is slightly better already although the burning pain is still bad.

I'm hoping I'll have recovered more by next month and I want to travel internationally to get stem cell treatment somewhere and pray that it helps even a little.

I have read of people with mild pain hyperacusis getting better after stem cells but people usually recover naturally anyway so it's hard to know if it works or not. I think the science behind it is solid though and I will report back when I do it so maybe that would be an option for some of the worse cases. Even if it means taking out a loan to get it done, it would be worth it.

 

I’m truly sorry OP what’s happened to you. I do think there is a cure on the horizon.

Your post is really helpful. I have hyperacuisis and intermittent noxacusis which has gotten worse lately.

I’m wondering if it’s because I’m not protecting myself from dishes clanking and such. I do get reactions to sounds that hurt and I have some panic attacks. I live 300 feet from a country road, surrounded by trees. If a loud truck goes by I will put my fingers in my ears.

What I don’t get is these trucks aren’t high in decibels, 50 dB max. But should I use my Earasers earplugs to take the edge off? At 5 dB attenuation it doesn’t seem like they would do much.

My ringing is also getting worse and not going down so I’m wondering if it’s some noise exposure I don’t know about.

I can’t drive in a car because of vibration so I’ve been trapped in home since May.

After your post I’m wondering if it’s because I’m not protecting my ears, but I’m not around loud music or bars, it’s everyday clanking sounds, or the like that that I’m not protecting enough from?

When you say protect your ears at all costs, is there some guidance?

 

How are you doing now?

3 weeks into my current setback. Today was the longest I went without pain. Wearing ear protection all the time though still. Took my earmuffs off because the tinnitus was driving me insane but then the low noise of my PC sent me into pain again.

It's really frustrating but gonna get through it eventually.

 

Hey Sam, thanks for your kind words. I would be careful with clanking dishes for a while, just have some earmuffs in the kitchen and throw them on. I stopped using dishes entirely and eat like an animal lol. If I have anything that needs a container I use plastic tubs and plastic forks. Before the kitchen was hell, now there’s no issues, it’s nice. Ears do whatever they want to be honest and we can never know what’s gonna happen.

And when I say protect your ears at all costs, I mean wear hearing protection in any environment you can’t control, if you already have noxacusis. The environments you can’t control is when you will get screwed. If you live alone at home, I would wear them only when you need it. I would stay away from anything earbud related, even with moderate tinnitus before noxacusis I still didn’t put my AirPods in my bad ear. Grocery store, restaurants, anywhere anything loud has the potential to happen, it can’t hurt to wear plugs. Use Mack’s Comfort earplugs. They are skin colored and when I have them deep in you can’t tell I’m wearing earplugs at all. I like black earplugs or those Mack’s. You said you’re not driving, so this doesn’t apply but always wear earplugs in the car, I can’t stress it enough. Those airbags will ruin your ears.

Part of the reason why I’m so bad is because I couldn’t accept having this condition. Like any young guy I said I’m not giving up my life just yet and kept trying, but it kept worsening. I’m worse than many many people with this condition, and I protect less than some of them. There’s quite a few people I know who are nowhere near as bad as me, but they are so scared they wear double hearing protection and don’t leave their room ever. My house is usually quiet so I try to let my ears breathe as long as I can.

Everybody has different pain triggers too. When I got really bad from sound therapy, everything hurt like crazy, then I started to get tolerance to some frequencies. My trigger ones never recover and I cannot be exposed to them or I will be in terrible pain. From May to June I was doing better and had pain free days. I was exposed to thunder when I was inside my house, no pain, double hearing protection to acupuncture and back and be ok, had friends over and talked without hearing protection for hours, I was ok. But if I was exposed to one wrong noise, the pain would come right back. I cannot hear door squeals, car brakes, most artificial audio, anything in that region or I will suffer horribly. Even through double hearing protection I will think I’m ok, then 10 minutes later the pain will kick in. I’ll get severe pain right away from really bad triggers.

I think it’s important for every sufferer to determine which noises their ears like and which noises their ears don’t. I definitely think of this like a torn muscle approach but 100x worse. There is the healing time, then you slowly work your way back to noise you can handle without pain. A lot of the long term noxacusis people who were like me but got a little better, they all said their tolerances capped out at a certain point and made sure to not go over.

The longer I go without pain, the more my chronic nerve pain reduces. Truly I need 5 years in a sound proof chamber but that’s not going to happen nor do I have the will to do it. I don’t know, this condition is so different for everyone but my point is, avoid noises that cause you actual nerve pain. It has to be nerve pain, not ouch, that’s too loud. My loudness hypy got better from sound therapy, but noxacusis got worse.

 

So you just sit in complete silence with earmuffs on until you don’t get any pain? And your tolerances improve? Seems I’m like that, after setbacks I need silence for a while, then I start exposing to super low level noise if it doesn’t hurt.

 

This is a new tactic I'm trying out. Last time, a few months ago, I didn't go total silence but kept sounds lower for a few weeks/months until my tolerance improved, then slowly kept getting back to normal but eventually went too far and now I'm worse than ever.

I think my issue was not going into more silence when I started to get a little pain. I think a dog barking is what tipped me over the edge but really not sure.

My tinnitus sound is a very high pitch noise which is driving me slightly insane wearing earmuffs all the time. I do try to get a little noise in sometimes. I think I'm getting better slowly. It's very hard for me since the pain I get is not usually instant and can last for several days in silence so I'm never sure exactly what causes it.

Some of my most recent days I was just getting pain in the evenings so I guess whatever I do all day just is too much. I changed my keyboard to a more quiet one yesterday so maybe that will help. I might need to move my fridge to a different room.

I am very confident that my tolerance will improve over time but that doesn't make it much easier. I want to book a long distance flight soon but need to recover before I do it probably. I need to test driving with earmuffs soon.

 

Yeah my issue, when I get bad pain, is I get angry and go out for a walk or try to talk to my parents or I do something that makes it worse and worse. I’m not thinking and accidents happen. When you get it this bad you start to go crazy. My entire body is bruised up from punching myself so often. I walked outside a few nights ago without hearing protection, no pain, it was quiet outside, then got stupid and got exposed to some trigger noises that sent me over the edge again. They are not even loud which is weird. Little squeals and most artificial volume gets me instantly of any volume. Hearing protection barely helps. But I could flush the toilet and be fine. Weird stuff.

 

Artificial noise is what’s getting me too. I think that’s why you worsened with sound therapy and why I didn’t improve. Very odd indeed.

 

Yeah, I was ok with artificial volume up until September of last year and like an idiot I drank the TRT Kool-Aid, and kept pushing through the discomfort and mild pain thinking it’s good for my ears; it will retrain them. Lmaoooo. Then kept getting more pain and more pain. Then reached the limit and boom, setback. When I get a setback from a certain noise, that noise becomes a pain trigger. Wish I was smarter lol.

 

This was me recently too. I thought I could push through the pain as it was part of the retraining thing but nope. In the early stages it was good to push through some small pain but once it started to get worse and worse quickly it was a bad idea. Extremely difficult to manage since there is not really any good info from any official source about this. It is a very rare illness. Lucky us!

I get a strange tinnitus noise from my PC only, not loud, just whatever electrical noise it is triggers a unique tinnitus noise for me. I probably do get pain from just odd noises too, I think when my shoe squeaks loudly off the ground sometimes that that's bad. It's very hard for me to tell with how I get delayed pain all the time.

We can't be too hard on ourselves with this. There really is not much info on it at all and most of the advice given by professionals is better for the majority of people but it makes us even worse. How were we supposed to know to do the opposite of what the doctor tells us lol.

Actually thinking now, it might have been the clinking from the plates on the barbell while lifting that caused my setback. I also went to a bar without any protection but was fine for several weeks after that. I was bad the first day after though, so maybe that triggered a reduced tolerance, then all the extra things after set it off. The cumulative effect is pretty important, it would seem.

 

Yeah exactly. I mean I always tried to avoid my trigger noises, screeching metal noises my ears have 0 tolerance for, but noises that weren’t super painful I kept pushing through. It definitely seems that before my setback, with noises at a low volume of a good frequency, my bad ear would start ramping up pain and if I caught it, I would not get worse. Every time I tried to do what idiots say, push through it, I got worse every single time. If I start getting moderate pain from one of the few noises I can tolerate now, I avoid it for a while, then I can usually go back.

 

I was doing this for several months when I was listening to music at low volumes. When I started to get pain, I just lowered the volume and then eventually after many months I was able to handle more noise but I pushed it too far with I don't even know what to be honest. I'm not even sure what is giving me more pain exactly these days which is quite frustrating. Seemingly I have an extremely low threshold for pain now. I think some sounds through earmuffs are causing me pain. What a nightmare.

Yesterday I was wearing earmuffs the entire day and only playing with the volume on the very lowest level and I was OK, but today it is brutal. I think dogs barking next door this morning is what caused the worsening but not sure.

 

I get severe pain from a door squeak through double protection, lol it’s ridiculous. I cannot be around those noises, artificial volume, or car brakes at all, cuts through, worsens me and hurts extremely bad for weeks after. Pretty crazy tbh.

 

That is really insane. I've been having the same feelings recently while getting pain through earmuffs, not as bad as you are but still pretty insane. I can't always tell though since my pain lingers for so long.

Have you looked into BPC-157? I think it might actually be good for noxacusis in particular. I'm going to order some soon so I'll let you know how it goes.

It's really frustrating how so few people have this particular level/type of noxacusis because there's not as much discussion about it anywhere. So many people report getting better after a few months or a year though. I'm almost a year in and I was much better, but setbacks have me as bad as ever.

 

If you have visual snow, I would be weary of BPC-157. At least two people have worsened from it.

 

I do not have visual snow. My plan was to maybe just squirt some into my ear and leave it there for 10 minutes and maybe some of it gets into the inner ear. Local applications are usually best and I obviously can't inject it into my ear.

It is obviously one of the riskier things to try but it doesn't seem that bad and I'm getting to be pretty desperate.

If the issue with pain is coming from the tensor tympani muscle, then BPC-157 could really have a shot at fixing it. I did have TTTS for a small while so it makes sense that it could help me.

 

So as you may have read already my experience with taking Flupirtine was a total disaster. A paper published this year discovered that cannabidiol opens Kv7.2/7.3 as well. As far as I know, CBD in the treatment of hyperacusis, in particular, hasn't really been explored yet. I still need to do some research but as of now I am planning on starting a trial with CBD oil soon. You can read my post and the paper here: Prof. Thanos Tzounopoulos Receives $2 Million Grant.

 

Yesterday I accidentally set off the car alarm. I had industrial earplugs in.

I suspect your thread may have literally saved my life.