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

Are you using a portable sound generator? It sound like you are not using above the ear generators but I am not certain.

 

Yes, for now I use my portable JBL speaker since it produces a good quality sound. I also tried listening to the pink noise for a while without hearing protection but my ears are such a mess that they get fatigued after 2-3 minutes. I am not overdoing it for sure and taking it slow. I am taking 1 month off work and testing my luck here. If I reach to only the loudness hyperacusis state I reached before my setbacks, I would be more than happy. I am not optimistic for now though if I have to be honest but time will tell.

If I can get to the point where I can travel again - I am going for stem cells treatment which I already arranged before this fucking setback a month ago.

 

I have significant loudness hyperacusis where sounds of a certain frequency (squeaking floors, plastic bags, water running in sink) causes discomfort and annoyance. My own voice and listening to others speak causes issues as well. I do not necessarily feel any pain except that my ears feel a little sore on occasion. I have had this condition for fifteen months and it has not backed off since that time. I am encouraged by some people who take years to see improvement. I have had three hearing tests and they all came out the same: minor hearing loss consistent with age (worse on the left) and 100% word recognition scores.

How are stem cells administered? I have read some postings about it but it has never been recommended to me by any medical provider. Please educate me about it.

 

The particular treatment protocol that I was going to undergo was specifically for tinnitus and of course no guarantee. I was going to get 150 million stem cells (autologous and MMSC) with injections behind the ear and intravenously.

 

How long were you on the low histamine diet before you felt that it was helping you? I read that being on this diet for more than thirty (30) days is not advised so I thought that it was kind of a short-term detox. I have been going it for three days and l feel like I have low energy and kind of a low mood. My body has probably been conditioned to a lot of carbs/sugar. The first week of this diet is hard for a lot of people.

 

Yeah, first week I felt like complete shit. I have lost 20 pounds so far. Lots of muscle. I noticed a difference 2-3 weeks in.

The diet is supposed to go on for 3 months if you want full effects that last. Just eat enough rice and chicken and you will be fine. It has to be enough because they are low in calories, that’s the biggest challenge. Must eat a lot to keep up calorie intake.

 

What is the theory about why this type of diet helps with hyperacusis and/or tinnitus?

After two to three weeks, did you feel that your noise sensitivity was less?

 

Histamine can cause ATP leak, inflammation, and nerve excitation. Lowering histamine can lower all that and allow healing. My noise sensitivity was less, and when I get setbacks, instead of horrible pain for weeks, I get it for a few days. I am a severe case so it’s hard to measure to be honest. But I can definitely tell a difference.

 

Can you eat eggs (both white and the yolk)? What about dairy products? I know that some people with auditory issues have cut all dairy out, but they are not necessarily on a low histamine diet. I bought some cottage cheese today which is apparently low histamine. It does have a fair amount of sodium.

Also, I am curious how you are getting setbacks if you are generally housebound? I realize that it is certainly possible to get them within a home. I once accidentally slammed the door to the washing machine down and I set off the burglar alarm last week by mistake.

 

If you want to experiment, try doing a multi-day water fast (to your capability) and then transition into 16/8 intermittent fasting we mentioned earlier. Along with your low histamine diet, hopefully you’ll get some wild synergistic effect that benefits your ears/brain/nerves. I know a few people who did a water fast. They told me that their body felt “cleansed” and “free” whatever that meant lol... I never pried for more info about that... I’ll try to get in contact with them, but i guess it doesn’t hurt to try.

I’ve been thinking about your case lately... I really want to see you along with many others here get better.

I’m also about to consider doing this myself as my diet has been trash lately, but the low histamine diet seems too difficult to do consistently.

 

Yeah it’s definitely worth a try. Afraid of losing more weight. I lost 20 pounds and I feel like a twig now. I can’t workout any more so I have to keep on as much muscle as possible. It’s all going away though, it sucks. I appreciate it though, if I can get better from this, anybody can. I did get blood injected into my right ear for the fistula. It helped temporarily. That gave me an idea I probably have one. I know I broke something in my other ear that’s fixable.

Probably the stapes causing half my pain, or the Tensor tympani. Something in the middle ear hurts like hell. Hurts much more when I’m talking, swallowing, and chewing. I put off the low histamine diet for months because it was so difficult. My parents are like 10 houses down so they bring me the food. My next step is keep healing and get another blood patch, then try to get my hands on the Hough Ear Institute drug for compassionate use. I definitely need something to help my damaged nerves. If I can’t get that, I’m going to have to get some stem cells or exosomes. I get major setbacks from little noises now but I get back to my low baseline faster now. The low histamine diet is definitely helping. Just not enough. I have been doing extensive research, those stupid Type 2 nerve fibers don’t get damaged, they respond to other parts getting damaged and then don’t shut off. I must find a way to turn them off.

Definitely something regenerative. I have an extremely long list of things to try, all in order. But a few more down the list, the risks get greater and greater. My tinnitus is pretty annoying but I could not live with it being severe on top of all this. Trying to hold off until there is a decent tinnitus treatment so I don’t get screwed. Hoping Otonony or Susan Shore have good results.

 

The diet is extreme. It’s not just low histamine, it’s like 4 in 1. If you want maximum benefits, no dairy at all, I love eggs so it sucks. Only frozen meat, broccoli, califlower, rice in a bag, not a box.

And believe me, when pain hyperacusis gets bad enough, you get setbacks from sneezing, chewing wrong, talking, noises outside, showering too long, any volume from my phone. I had mild hyperacusis and did not believe it could be this bad. That’s why I got worse. Before all I had to do was avoid loud noise and I recovered. Not needing to avoid every noise. I got worse from sounds under 65 ydb. If I only had setbacks from loud noise I would not be here. I would be living my life. Also if my pain did not worsen and get more severe and last for hours I would still be living.

I will not downplay anybody who has any ear issues because they all suck and are horrible. But after suffering every level with this I can say people think they have it bad until they are in extreme pain all the time and get setbacks from little noise in their house. I have so many co-factors that are making me worse. Too many things happened last year. I had 5 incidents of injury. I had relatively strong ears until all this. But because I won the lottery 5 times I have to deal with this level.

 

I'm curious why you only eat such few food items? Can you elaborate on that? When I read around on low histamine diet, there are listed more you can eat. Like eggs, kale, sweet potatoes, coconut milk, blueberries, etc... Aren't you scared of malnutrition? Or do you take a multivitamin? You won't get sufficient vitamins and minerals on only chicken, rice and broccoli.

I ask because I was thinking of trying a low histamine diet. Right now I'm in a pretty okay place though and don't think I will go on it, but it's good to have in the back hand just in case things go haywire. I'm scared of it though. I'm twiggy enough as it is. My BMI is like 17.

 

Hey, @Brian Newman,
I'm so sorry to hear about your struggles with noxacusis. I myself only have a pretty bad case of "brain"/"loudness" hyperacusis. Thank you for your awesome contributions in this thread, it has really given a great insight into the complexity of hyperacusis.

Did your tinnitus at any point spike to the sound enrichment when you treated your loudness hyperacusis? Did this spiking get better? My understanding is that spiking to sounds that aren't objectively loud are related to hyperacusis, it seems to be my experience anyway.

Do you think one who has loudness hyperacusis have a greater risk to develop noxacusis? Anecdotes of pain hyperacusis seem to begin with loudness hyperacusis, but to me it seems that both types are different, pathologically.

My heart goes out to you, and the rest of us on here. It truly is heartbreaking.

Stacken

 

What you describe is truly heartbreaking and I feel for you. Please persist and keep going. Mainly, I'm just devastated by what you wrote. I'm 65, so I've got fewer years ahead of me than behind me. I've done things, that few people can dream of. I'm not one, who seeks solace from the inside of a body bag, but my actual life, was as if I was actually in one. If I hadn't persisted, I would never have been able to get out, and to see things, that I never would have imagined. I'm here for you.

 

Would a low carb/no added sugar/no dairy diet arguably work or is it the low histamine nature of the diet that is key?

What do you eat for breakfast? I bought some steel cut oatmeal and eat it with blueberries.

I played live music at a loud level for decades without protection and listened to music at a very loud level as well. I woke up one day with hyperacusis in September of 2020 at the age of 55 after several months of anxiety and insomnia. I have been fortunate to avoid pain from it but it seems to be staying the same and possibly worsening as I expose myself to normal, everyday sounds and listen to pink noise at a low level through above the ear sound generators. I do experience some soreness in my ears and very rarely spontaneous pain but not as you describe.

 

Did you experience improvement in your hyperacusis?

 

You reference being in a “pretty okay place.” Has your hyperacusis improved?

 

The low histamine thing also involves taking some enzymes to degrade it when you eat as well as avoiding foods that aren't fresh as that's where breakdown to histamine occurs from histidine.

Your body also makes histamine from histidine. Theory is to deplete mast cells that over react in the ear.

It could also have to do with the middle ear muscles if they contract too hard and that's often hard to know without Botox. It could even be they are atrophic which as skeletal muscles probably could be if not used enough.

Muscle relaxers are also worth a shot.

 

Malnutrition is not a worry of mine. I’ve done the chicken and rice diet many times in my bodybuilding days. Just had BBQ sauce. You just have to eat enough of the food because it’s few calories. I’m getting enough protein for sure, carbs in the rice, fats from olive oil. In the beginning I was only having meat for a few weeks. The lack of carbs cut 15 pounds off instantly. I was confused too when I looked up on Google and how there are other low histamine foods.

This diet is more than just low histamine. And I take vitamin D, C, Lipoflavanoids, Magnesium, and Zinc.

 

Yes, as of now it has. I'm so afraid of jinxing it by speaking out loud about it. I still don't expect the improvement to last. But as of now I haven't had any longer lasting pain from noise, for quite a while now, and I can tolerate more noise. There has been a few slight pain spikes here and there, but they are very short, like 1-2 hours tops, often shorter. Still have a bit of trouble speaking, but that has also gotten better. Went on a walk with my mom about a week ago. Spoke for 2 hours... no effect on my ears afterwards.

I might have had a longer lasting spike from the vaccine then I was aware of... although I feel it has gotten slightly better then my pre-vaccine hyperacusis. But I also have been isolating more, and wearing 3M 1100 earplugs if I go out where there's traffic or other noise. I think that has helped.

 

Thanks for the prayers man. It means a lot. I really appreciate it. And when I was doing the sound therapy, I used an air purifier and a fan and felt totally fine doing it. At that time my noxacusis was only from high pitch noise and would last up to an hour max if it was bad. I had aching in my ears from talking, that would last maybe 30 minutes never really worsened. My tinnitus baseline maybe rose a little but was pretty stable the whole time surprisingly. I still had hell distortions and sound therapy will not help or make those worse.

My loudness hyperacusis was so bad that a light switch sounded like a gunshot. Showering was difficult. Talking was difficult, I thought it was bad but the pain was not severe yet. After a month I could shower full blast with no issues, I could talk again, light switches, flushing the toilet, everything didn’t bother me anymore. I keep trying to remember when things went wrong but I remember one day before bed I noticed my bad ear was aching from the noise, I shrugged it off and kept pushing through it thinking the aching would subside. Then more often I would get the inner ear inflammation and aching, I remember one day the aching started to worry me. I started getting the aching pretty bad that would last for hours. I remember one day I sneezed 24 times for some unknown reason. I have CSF/PLF issues that affect my sinuses and head too, which make my ears worse. I took a shower and I felt my ear spazz for a second, then after that day it got much worse.

My sound therapy started making my ears ache like hell and I lowered the volume fearing my progress would be ruined if it stopped. It just pissed the pain hyperacusis off more. Loudness hyperacusis and noxacusis are definitely different mechanisms without a doubt. If somebody has no pain hyperacusis, I don’t think they can get it from sound therapy if it’s low. I had the aching before it, it just only happened to loud continued noise. My case is one of most complex cases I have ever heard of in 6 years of being part of this community because too many things happened within a year. Strangely on bad noxacusis days, if my inner ear is hurting, certain quiet TV shows can mitigate the pain. Literally makes it vanish. But that’s only from the severe aching from my cochlea. If my stabbing occurs in my cochlea, that ear rejects all noise for a few days. I also have middle ear aching and stabbing, I know because it’s farther out in a different spot. This doesn’t care to much about the TV, it reacts mostly to me talking and chewing and stuff like that. By the way I have 4 TVs, I can only stand the volume on my high quality soundbar, any sound out of the other TVs is immediate pain.

This makes me wonder more and more. I read a few stories of guys who had severe noxacusis but had to rest and find the right noise to help them. One guy had to create 6 different pink noise sounds from 4 different speaker systems till he found one that works. Sound therapy is incredibly difficult and takes extreme diligence to find the right noise your ears like. I think it’s worth a try especially since my loudness hyperacusis got that much better in a month. I think the key is paying very close attention to how your ears are handling the noise. And if you get any more pain than usual, stop and take a break. Tinnitus wise it’s ok to have spikes, that happens, but you gotta make sure you’re not getting new tones or your tinnitus getting horribly loud.

 

That means a lot. Thank you. Yeah having this at any age is horrible. I truly wish I had had a little longer before getting this. I really do. It makes you think back on how good your life was. I lived more than most people in the first 18 years of my life. For that I am blessed. If I survive this I will have a completely different outlook on life for sure.

 

The nature of the diet is key. Steel cut oats are actually ok. Blueberries aren’t. It depends how bad you want to get better. I was waiting a while to do it this strict but I simply could not take the pain anymore. It’s only for 3 months, then you can slowly add some foods back in. You don’t have to go as extreme as this, but the more extreme, the better the results. Fasting works for some people too as I was talking with @ZFire. I know a girl who cured her thyroid cancer doing 5 day fasts. I read stories of guys who cured their tinnitus doing it. Definitely doesn’t work for everybody, nothing for this ear stuff does. I believe everybody has something that could help them. There’s so many diets, therapies, medicine, alternative medicine, lifestyle changes, exercise, surgeries that can possibly help. Some come with risks too. So it’s a guessing game to do the safest ones first.

 

Thank you for your all of your responses. What do you eat for breakfast?

 

I am glad that you have improved. Have you tried any sound therapy?

 

I don’t know if you consider this breakfast because I wake up at 3 every day lol but chicken and rice. Second meal rice and salmon with a little grass fed butter, last meal steak and rice or chicken and rice. I’ll throw in some broccoli every few days.

 

No, not white noise generators if that's what you mean. It's generally not recommended when you have hyperacusis with pain.

 

Do you eat any fruit such as apples?

 

I don’t but apples are actually allowed in the diet. Sweet potatoes are too if they are plain, and broccoli.