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

Okay well CBD helps middle ear pain. It helps all pain when I’m on it. When I get off it I get this weird shocking pain in my cochlea. Hard to explain but it hurts and feels like I’m having a nerve attack in my left ear. Going to stay off it.

I’m going to keep doing acupuncture. After the first treatment I woke up the next day feeling different, like I woke up from a year-long nap. Ears are maybe 5% better for a day, then goes back to normal. The rashes on my hands are gone, my headaches are better, tinnitus little lower but not anything to report on. She is good, I’m not going to lie. I’m going to go back to my Chiro soon and give that another try. It’s next to a stem cell center.

 

What CBD oil are you using?

 

Lazarus Naturals. I got 3 kinds. THC free, full spectrum, and sleep CBD. Going to wait till I get the other two, the THC free bothers my bad ear, it’s stupid.

 

This is a random question so my apologies in advance, but did Chiro have any impact on your distortions?

 

No that’s a good question. Me and my Chiro before the car accident thought my neck was causing the issues. I had subluxation in C1 and C2. Maybe it helped 5%? Nothing to really go crazy about though. Pretty sure it was ear damage from barotrauma, probably a PLF. Not sure at this point.

 

Hey @Brian Newman, it's not in this post, but in another post you mentioned you keep developing new tinnitus tones and called yourself the habituation monster.

Are these new tones linked to noise incidents? If so, are they at volume levels that are “safe” or only at levels that are normally considered risky?

I’ve been protecting basically 24/7 with some small breaks here and there because it’s so isolating and to let my ears breathe. I’ve got some pain from this, but once it starts to set in I put the hearing protection back on.

I have been getting spikes and new tones like crazy in the past couple weeks. I now have a low tone at slightly different frequencies in each ear that literally makes my body feel like it’s vibrating. It’s the worst tinnitus I’ve ever experienced. Just trying to figure out where this is coming from.

 

Well, I got new tones from Prednisone, new tones from driving for 4 hours, new tones from being exposed to noise from outside my house. They’re pretty settled now. I mean I have a bunch of tones and they just keep changing too. On good days I have like 3-4 tones, other days like 5-7.

Who knows, I try not to think about it. The more I think about it, the crazier I get. The tinnitus in my noxacusis ear does not seem to get worse with the pain which is good. It gets worse from me talking too much or car drives, and stuff like that. If I’m in the house I don’t get too many crazy spikes now. My few louder tones drown out the other ones usually. I even noticed for my pain hyperacusis, the more you think about it the worse it gets. This stuff is the toughest mental battle you could ever go through. The mind is ridiculously powerful. The only tones that made me want to jump off a bridge are my distortions, my right ear picks up low sound and turns it into shit beeping, fluttering, wavering shit. When it’s bad I’m very anxious. When my main tones get louder it doesn’t bother me as much because it sounds way better than the shit I’m usually hearing.

I do get more bothered by the super high pitch squealing tinnitus. That does bother me sometimes. The lower ones I just don’t care anymore. It’s definitely not as loud as some people on this site. The distortions on bad days are definitely complete hell. When it’s not bad I can tune it out. But those bad days the distortions are like 70 dB off a 40 dB fridge, that’s why it’s so bad.

 

Do you use double protection to drive? Sometimes I have to drive but lately it has been spiking my tinnitus and noxacusis. How the fuck am I supposed to drive now if I can’t even be safe with double protection.

 

So I didn’t drive for like 4 months. I pretty much sat inside and played video games with earplugs in 24/7. I had to stop going to the grocery store in August. My mom’s been bringing me groceries ever since. I started acupuncture in April, after 3 treatments I noticed a difference. It’s not a cure but definitely helps the pain. Before my acupuncturist went on vacation I could wear double protection and drive there and back a few times a week and be ok. Then I was able to talk at low volumes without pain. Then I started waking up and my left ear that felt like an open wound 24/7 stopped feeling like that. Depression better, sleep better. Then I started working out again, makes my tinnitus horrible and distortions hell but helps the pain too.

I actually had pain free weeks, but I was living very quietly still. The wrong noise would bring it back right away. Still homebound besides going to my acupuncturist. She had been gone for 2 weeks for vacation. Pain started coming back after a week. I have two more to go. My ears are getting worse again. Trying to get through this. I haven’t spoken of this because being such a bad case I don’t want to jinx anything. Getting back to normal life will probably be impossible until regen meds, but that was the only progress I saw in over a year. Silence didn’t help much, it just kept me from aggressively worsening. Noise made it worse. I’m going to keep perusing this. My acupuncturist is not a normal acupuncturist, she’s definitely a very specialized one. When she gets back we will see how I do. I was on the couch for 8 months brother, in so much pain. Being a success story going back to normal life with my state probably won’t be an option. Just trying to get to be pain free being homebound and I’ll take it.

 

Hi @Brian Newman, I really feel for you man.

Did you ever consider taking the anti-epileptic Keppra? Some users reported improvements in their hyperacusis with it.

 

Thanks brother, I have thought about Keppra too. That stuff scares me. Obviously I would try it before dying. I’m just not quite over the fence yet. Who knows what would happen tbh. If I got any worse, not sure what I would do. I’m going to keep doing acupuncture for half a year and see where it gets me. I might be on to something. I’m just trying to make it will the regen meds. Probably 3-5 years.

 

I'm so glad I have the Internet and this forum. I can't imagine how terrifying this condition would be if I had no idea what it was.

 

Imagine if we only had ENT doctors to turn to who'd tell us it's all just in our head and we need to stop using hearing protection... This forum has literally saved my life.

 

Do you think it will be between 3-5 years before we have an actual treatment?

 

I feel like this number keeps moving.

 

Hi @Brian Newman -- I find acupuncture helps me as well. At one point it helped stop an episode of my ears burning after just one treatment. At other times, it helps bring a much deeper calm to my body and psyche, and my perception of tinnitus changes. From feeling like it's eating me alive, to more feeling like a noise I can tolerate (though not like). It seems to take me out of fight or flight mode.

Last night I was feeling especially out of sync in so many ways, like there was a tug of war going on inside of myself. This of course made my tinnitus even more difficult to deal with. As soon as I laid down, I knew I wouldn't be able to get to sleep. So I did my normal self-acupuncture routine, and 20 minutes later I felt totally calm and relaxed, and then had a very good night's sleep. Being able to do this on myself at anytime gives me a much greater sense of self-empowerment.

 

@Brian Newman, do you have any advice for lifting weights? I remember you saying you experienced an increase in tinnitus and hyperacusis. Did you lift overly heavy weights, in other words exerted yourself? I'm currently very overweight and just had a health scare and been advised to lose weight as soon as possible. But I'm too worried about increasing my tinnitus and hyperacusis.

Are you still working out in whatever shape or form?

 

I’d advice going on long walks. Exercise exacerbated my tinnitus and hyperacusis. Only thing that I can do is go on walks.

 

For noxacusis, man who knows, but I do think if OTO-413 and FX-322 got out, it should definitely help. Noxacusis is most likely from outer hair cell or synapse damage triggering Type 2, so it should calm stuff down.

 

Yeah I went in the third day and my 10/10 pain went to a 5. It’s more temporary but it seems accumulative. I felt that too after my first appointment. I felt my mentality and entire mindset change, it felt like I was reborn. Stuff is no joke. It helps.

 

Well, the only reason why I stopped working out is because months before I was exposed to airbag deployment. I most likely blew a hole in my cochlea lifting 495 lbs. That mixed with the noise damage was a recipe for disaster. And I was taking many doses of Prednisone, then also damaged my stapes and tensor ty,pani from yelling months later. That is what caused this catastrophic case of pain hyperacusis. I only stopped working out because it seemed every day I would work out I would wake up and my loudness hyperacusis would be worse. Every single day. I didn’t know it was helping the pain.

There’s a reason why I was never sick or had any health problems my entire life. My body healed from everything. I recovered from tinnitus and hyperacusis once. It was not this bad though. Working out 5 days a week for 12 years had more effect than being ripped and looking good. It kept me extremely healthy, more than I could have possibly imagined. After 8 months of not moving I lost everything I worked so hard for. Such a horrible feeling.

Everybody is different when it comes to exercising with ear issues. You have to find what works for you. This entire time I was going for mile walks, and I always felt a little relief when I got back for a few minutes. Other than that it did nothing. Once I started running with acupuncture I felt my bad ear actually start to feel a little better. I’m not cured and will not be getting back to normal life anytime soon. I think a good diet, with good cardio, and moderate lifting is the sweet spot. Before my tinnitus always spiked from working out but settled. Now if I work out and strain too hard I feel like my head is going to explode and I have all sorts of other issues I think from a CSF leak or a fistula. Since you probably don’t have that, I definitely recommend exercising with this and see how your ears feel. It’s not cheap but I bought Rogue Fitness stuff and set it up at my place. Going to a gym with severe noxacusis is a big hell no. I run at 3 am, only issue I have are crickets.

 

Those treatments are mainly for tinnitus, correct? What if they don’t help noxacusis? If they don’t, I’m fucked, well we are fucked.

 

3-5 years in mouse years.

 

I think a major reason acupuncture helps is because of its ability to harmonize energy flows in the head and body. Most people, and certainly conventional medicine, rarely think in term of the way energy is flowing (or not flowing) in our body. But I think it's a major factor in tinnitus severity, in addition to how well a person can cope with it. Another thing that helps me significantly calm and harmonize my own neurological system and energy flows is castor oil packs.

 

Brian, sorry, you probably answered this a million times before but how do you know you got stapes and tensor tympani damage? Did you get some sort of scan proving it? I want to see if there's a way to examine the damage but I'm coming up short and most ENTs dismiss me wanting to explore it.

 

Yeah well, it doesn’t do a whole lot for my tinnitus tbh. Maybe helps like 5%. My left ear stapes is most likely broken, my tensor tympani is messed up, and my Type 2 nerves are fully fired. It’s definitely calming all that down. I would finally wake up and my left ear didn’t feel like hell after a year. My acupuncturist said she was channeling the energy like you said to promote healing in my ears. I didn’t think it would help tbh. I was so wrong. I’m glad I tried it.

 

No, they are for hearing loss. Noxacusis is because of hearing loss. When hearing loss is fixed, noxacusis should stop. I hope at least. Same with tinnitus, the root cause is hearing damage. Yeah a treatment specifically for noxacusis will probably never happen. We all see how tinnitus and hearing loss took many years to finally pick up a little. There are probably less than 10 thousand people who have noxacusis. Well true noxacusis, not moderate hyperacusis or moderate ear pain. And severe homebound cases probably are a few thousand. I will probably end up doing the hyperacusis surgery too. My stapes is definitely fucked.

 

I've made a couple posts about this already, but I am pretty certain Kv7.2/7.3 channel openers will treat and eventually cure our noxacusis. A study published in 2015 found that opening these potassium channels in mice "suppressed the type II fiber’s response to hair cell damage". There are people on this forum who claimed to be helped and even completely cured from hyperacusis by taking the potassium channel openers retigabine or flupirtine for a couple of months. Due to side effects these drugs had to be pulled from the market. Currently there are three medicines in development for various illnesses that target these channels; XEN-1101, QRL-101, and RL648_81 (developed specifically to prevent or cure tinnitus). Best case scenario XEN-1101 hits the US market in 2-3 years.

Because I do not want to wait that long, I am planning to take flupirtine (in coordination with my doctor) for a couple of months to see if I can cure my hyperacusis. I think I've found a way to acquire this medicine. It will probably be next week or the week after when I can get my hands on it. I will report back of course.

 

I'm just worried about pulling something and making my hyperacusis worse but on the other hand I need to lose weight ASAP and a clean diet has done nothing so far.

You say you recovered from hyperacusis and tinnitus before, would you put that down to being in shape or because it wasn't as severe up until your accident?

 

The hyperacusis surgery is Dr. Silverstein’s surgery right? Will you wait to see if any treatments are developed first, or are you doing the surgery after the treatments come out? Do you know how reliable the Dr. Silverstein’s surgery is for noxacusis? Sorry for all the questions, I ask because I also have noxacusis, which has left me almost completely home bound.