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

My tinnitus seems reactive as well. I also have hyperacusis (which some people believe is the same as reactive tinnitus).

Do you have hyperacusis?

 

You may have already addressed this in a separate post, but have you ever tried Gabapentin for your pain?

 

It's real fun when you try to mask and instead you hear distortions in your opposite ear and ringing over top of it all until it starts to cause stabbing pain. Then you're in earplugs listening to screaming chaos instead.

The only help masking is for me is the fucking thuds like someone is banging on my wall and high toned wavering distortions aren't "stuck" in my head as much. It's still fucking annoying, they are still there and I notice them to the point of mildly annoying to completely and utterly distracted and cannot concentrate on anything... and once it starts hurting you're just fucked no matter what.

The gaslighting I get (they don't seem to grasp beyond "ringing in the ear") and apathy from the medical system makes me fucking mad. This condition is fucking hell.

 

No, I have been thinking about it or Cymbalta. Seems every time I take something I get a new tone. That’s what’s keeping me from more trial and error. Already with the tinnitus, distortions, and noxacusis, I can’t get any more tones. It’s rough. Gonna try CBD first.

 

Thanks brother. I appreciate your kind words.

 

It really is fucking hell on earth.

 

My distortions got bad the past week. Honestly they were much better till the blood patch. I remember hearing them in the car on the way back. I was like no, not this shit again. Reactive tinnitus distortions are just so so horrible. I got two more tones this past week but I don’t care, like tinnitus keeps getting worse but I could care less. It’s loud now and distortions are bothering me but nothing compares to the pain. I would definitely like some piece and quiet lol, I’m so used to hearing shit and I’m sure you are too, it’s like oh, new tone, yay... two days later habituated. I mean the panicking over tinnitus just doesn’t happen for me anymore unless I get a tone that’s louder than a car horn. My brain is like yeah, you’re gonna hear fucked up shit all the time. At this point I call myself the habituation monster hahahahah.

 

Out of curiosity, what do you do to distract yourself from this shit? I know you can't really tolerate sound so is there any quiet activities you do? I'm struggling myself after 2 years with severe reactive tinnitus. I have no pain, just the uncomfortable invasive unmaskable tinnitus I got from a cold 2 years ago and that alone is hell.

 

I’m glad you are strong willed.

 

That sounds like you got an inner ear virus or something. What a shitty way to get it. The first 2 months I was absolutely stressed to hell. Only things that helped was intense exercise, and keeping my mind so busy I had no time to think. I worked 10 hours, then straight to the gym after a meal, then straight to the bar with my buddies, then video games, then sleep. I had to keep my mind as busy as possible.

I mean with severe tinnitus and distortions there’s just no way to mask them but you can eventually kind of ignore them to a certain extent. Kind of like that habituation stuff you see everywhere, and believe me, I said the same thing, I was like there’s just no way in hell I can train my brain to get used to it or not have me it bother me, that’s crap. Luckily mine did lighten up after 4-5 months but would be much worse after working out and exercise because I have a perilymph fistula. I still hear it all the time, a combined sound of hissing, ringing, beeping, fluttering, wavering, just everything you can think of. I mean waking up with two new tones and distortions would destroy a lot of people, but I was stressed for like a day, and now I’m like alright I guess.

It’s much harder now to deal with it since I’m housebound, because if you can go out and do things, use that to your advantage. It’s seriously not easy. You have to find something that’s so addicting that your brain pushes it to the background. It’s possible. I found that some video games distracted me to the point where I was oblivious to anything going on around me. That’s when I realized some of this tinnitus crap is a mental game. I have read thousands and thousands of stories of tinnitus. I know people with tinnitus. I know people who have panicked over tinnitus that’s maskable by most noise. They let it ruin there lives. I know a guy who has tinnitus as loud as a jet, dude literally doesn’t care. I know he was not exaggerating because I saw his testing and he has never lied to me. The issue with tinnitus is that one pitch in a certain volume will bother one person more than another, everybody is different in what they can handle mentally and physically.

It’s kinda like some people are in so much pain from something other people will not have it as bad. I have realized that the brain is extremely powerful, more powerful than any of us can possibly imagine. Everybody has a limit on what they find annoying and what they can mentally handle tinnitus wise. Because that’s the only explanation for how some people have the worst tinnitus possible and don’t care and some are suicidal from ringing that’s maskable by a fan. I will admit this reactive tinnitus, like we have, and distortions, are the hardest to ignore. Always changing in loudness and pitch and mixing with 8 different noises, it is awful. And usually people with severe tinnitus are at least bothered. I’ve never talked to somebody who was happy about it. But some just don’t care as much.

My distortions got worse after my blood patch. All I hear right now is my fridge beeping and wavering and going berserk, with static hissing on top. I was stressed this morning saying why do I have to deal with more, now I’m sitting here and I’m like I’m done, I don’t care anymore. It’s bothering me but it’s not killing me like it once did.

Lol sorry, this sounds like some Jastreboff crap. He is right, for some people it’s possible to just habituate, and have it bother you less, and the louder it is and the more tones you have, the harder it will be. Some people’s brains are just not wired to handle this as well as others. I can say I was that person, depressed and panicking over tinnitus that was like a 4/10. I thought if it ever gets worse, I will never be able to survive with it. Now I have 8 tones instead of 2, and I’m still ok, and now I have catastrophic noxacusis. It’s incredible what the human body is able to endure sometimes. Remember until regenerative medicine comes out, we’re going to have to sit this out a while longer and suffer. I don’t think we will be stuck like this forever. It definitely seems forever though.

 

The term hyperacusis is poorly defined and is sometimes used with terms like “kindling” and “winding up”. I prefer to use the term reactive tinnitus. It is easy for anybody to understand.

So in my case I do not have any physical pain but a discomfort because of the reactiveness. If your tinnitus reacts to sounds, I think it is logical to stay under those thresholds. Over time your thresholds typically improve.

 

Hey @Ava Lugo, first sorry to hear about your pain. I have been there too.

For me it is basically only one thing that works. Distractions. For me it is my work. I love my work and can sit for hours with my blasting tinnitus, totally aware of it, and still be very productive. I also distract myself by talking to friends and family, watching TV, sometimes with earplugs but I can totally follow anyway. I know distraction is damn hard in the beginning. At first I could distract myself just for a few minutes at a time but then over time it improved greatly.

I also used a benzo and SSRI in my early days but now just occasionally.

Walks in the nature are great. What do you enjoy? I think some people have very good results with TV and video games.

Do you have your gut under control? That is also essential.

 

I think he meant if you experience some sounds to be louder than they should, especially high frequency sound. That's usually what we refer to as loudness hyperacusis, and in many cases, it seems to be the root culprit behind tinnitus that spikes to low-moderate levels of sound.

Then there's tinnitus that reacts to sound and immediately goes back to baseline when the sound has ceased. This is quite a bit different, and many also calls this reactive tinnitus.

 

I was also thinking about CBD, but in what form? Pills, oil, cream?

 

I have read the article before and it was interesting (except that I believe that he notes how difficult it is to treat reactive tinnitus).

 

The CBD oil you put under your tongue. From Lazarus Naturals. It’s definitely worth a try. I’ve read some posts on Tinnitus Talk with it helping their tinnitus. I’m going to try THC free, seems the THC is a risk, the CBD isolate has such little traces of THC it’s nothing. Going to try that, then I’ll try the full spectrum one. Seems the drops under the tongue are the most effective.

 

This is fantastic advice and I wish everyone would follow this.

Distraction is how I improved quite a bit. Just focusing so much on gaming, work, having fun with the kid, etc. hearing the ugly tinnitus and saying “ok it sucks but keep busy”. Over and over while focusing on everything else. Brain lowered the sounds quite a bit. I still struggle but it’s a game changer.

My tinnitus is screeching at the fan and fluttering a bit but I expect it now.

 

Yup it’s seriously not easy. It’s so damn hard but it’s possible. Even the pain I can ignore if I’m focused on Xbox. Just when it gets like a 8 or above I have to go walk around the house for a few hours.

 

But still very treatable. Most of us here have some nasty ingredients to our tinnitus. Kind of the reason why we come and go here.

 

That is some great advice, so thank you for that. Out of curiosity, do you know video games I can play on mute besides puzzles and racing games? I mean I like those games but I also like those adventure open world games and those role playing games and while I'm aware that I may miss out on some game music or whatever, I think games are a good distraction.

I'm just wondering since you play video games, can you think of video games I can play that don't require listening to them? I'd play it with sound if only the tinnitus didn't try to compete with it lol.

I own a Nintendo Switch Lite.

 

Sure. I mean most games you can play without volume and they have subtitles. I have an Xbox and play Forza, Call of Duty Warzone, Gears 5, Skyrim, everything. The only games that suck to play without volume are when you’re playing online because you’re at a disadvantage of other people. I still do very well in those games, it just takes practice. Your eyes get better an better and help you compensate.

And think of it like this, if the games on a really low volume don’t permanently make you worse, just keep doing it. My distortions would go nuts but focusing on the game trying to focus on the sound helped me habituate to all the craziness I heard. Definitely give it a try. Since you don’t have noxacusis I think you should be ok. Just keep it very low and keep track of your tinnitus. My tinnitus spikes all the time now but I can tell if it’s permanently worse or not.

 

I am becoming increasingly frustrated by the lack of progress after seventeen months but I know that progress does not necessarily progress in a linear fashion.

 

I highly recommend Slay the Spire. This game is an card based rogue-like and if you give it a chance, it will consume you. It is a masterpiece of design. Incredible variety, balance, and its very simple to get into. You don’t need to play with volume as it’s the least important thing in the game. It doesn’t affect the overall experience. It’s available on the Nintendo eShop. The game tends to go on sale frequently, so keep a look out for it when there is an eShop sale happening . It’s still pretty cheap compared to most games.

I would look into other games in rogue-like genre as well. They’re addictive and are never ending. There’s a lot of role-playing elements in it and a lot of them have a progression system where even after losing, you’ve gained something positive out of it.

Some titles in this genre:
- Binding of Issac
- Dead Cells
- Spelunky
- Hades
- Enter the Gungeon

IF you’re looking for RPGs and open world stuff:
- Octopath Traveler
- Diablo 2 resurrected
- The Legend of Zelda: Breath of the Wild

 

What do you consider the best treatment for reactive tinnitus/hyperacusis? I have read Bauman’s discussion about it but do not recall him being very specific about suggestions. I am wearing above the ear sound generators but not experiencing any improvement and it seems like normal, everyday sounds create a cumulative aggravation.

 

When I first got tinnitus, it was also reactive. I treated it reasonably well with sound generators and SSRI. This was like 5-6 years ago. This time around I seem much more sensitive and it's hard to implement them. I need to take it with very small steps.

Do we really have any other options than the sound generators? I can simply not wear earplugs 24/7.

 

So the games you listed besides Slay the Spire, are there other games that might be playable without sound on? Those all seem like good choices and yes I’ll look into more games as well.

 

There are lots of alternative approaches (acupuncture and craniosacral therapy, etc.) but the passage of time seems to be important as long as you try to go about your life and not overprotect, etc.

 

Yes all can be played with no volume. I think maybe Hades could use some sound, that's partly because it has some really good voice work. Buts it's still very much playable with no sound.

Another game recommendation you can play with no sound is Animal Crossing: New Horizons.

 

So you had hyperacusis 5-6 years ago, it got better using sound therapy and SSRI and now you are worse?

 

@Taw, yes I messed it up over the years with 4-5 traumatic sound incidents. Made it a little worse every time. It seems much harder for me to tolerate sound enrichment this time around. I do not see to many other realistic alternatives. Tried pretty much everything already.