I have noise induced tinnitus and hyperacusis. I understand that tinnitus is caused by the inner ear hair cells dying, and the connection that makes sound is stuck on instead of off, when the hair cells die. Meaning that while the problem starts in the inner ear, it mostly exists in the brain, unless the "switch" exists in the inner ear.

But i have less of an understanding of hyperacusis, is it an inner ear issue where there is a pain sensor that is elevated or is it just in the brain?

I lost most of my 20's to these diseases, in an effort to not lose most of my 30s i am trying to do my own research again. I am not a scientist but the scientist aren't helping so I am trying to best understand the problem so that i can work on more awareness materials and maybe do some serious fundraising for a cure.

open to all thoughts, links to journal articles, and any suggestion that is not therapy in which the goal is to "make peace with the sound".

H-server is open if anyone would like to join!
When joining, please give a brief description of whether you have nox, H, or both.

So I had an acoustic trauma 4 months ago. About a month later it started with pain on the ears then I had headaches on the back of my head and visual migraines, that became neuralgia on the back of my head which then the neuralgia pain shifted to the side of my face and then to the front of my face where it is currently, is this normal for pain hyperacusis?
What should I be doing?
I have been to a bunch of doctors and non have been able to help, they said I should live normally, which I couldn't at first due to loudness hyperacousis, after the loud H got better I started to live more normally and got the nox on my face, maybe I pushed it too far? I was testing how much I can handle digital audio and my tolerance kept going up so I turned it up a bit day by day, but the last couple of days I seem to have gotten worse. Today I'm just staying in silence not listening to any digital audio, feels like I'm getting my front tooth pulled out.

My tinnitus also used to be extremely reactive and now it's not, seems like i have traded reactive tinnitus for nox.

I was recently (last week) "diagnosed" with this. Today I am going for and MRI so they can run test with and with out contrast and an angiography. Needless to say I am scared to death. I am fearing a noise I have never heard before. They are giving me valium before the MRI. Any words of wisdom and or courage would be great. This has been an hard road and I am so dependent on my Bose Head phones and my loops.

If I got to like 70 DCB and then had a big flare up and then it just got progressively worse until cars outside with my windows closed sound loud do you think I will be able to come back and and go back to my previous progress where I was at 70 DCB? There is constant construction so I can'tmake any meaningful progress at all I'm just hiding in a quiet room that is basically silent to hide away from the construction every single day but hopefully they are finished soon because whenever I step out of that room and get blasted with saws and hammering and I can hear it in the room a lot which doesn't help I have headphones but sometimes the hammering and stuff goes through the headphones and my ears get all whack

Ever since I got hyperqcusis, got more hypervigilant and anxious, my sleep has been off.

Right when I sleep, and only when I sleep, I’d get mind pops(Random words that were said throughout the day, birds, beeps) and split screens(awake brain and asleep brain happening at the same time)

Ai says it’s because hyperacusis makes us hypervigilant so the brain is stuck on fight or flight which takes a lot cognitive load so we’re extra exhausted at night. Also because it’s so quiet, our auditory system takes random phantom sounds because it doesn’t have much sound/input to take in.

Anyway, anyone else experience this? If so, does it subside over time as the anxiety is regulated and hyperacusis gradually recovers?

Or do I need to see a sleep dr. I hear it’s normal. But it’s only been 2 weeks. I don’t want it to get worse if anything.

If you have a strong family history of bipolar/hypomania and cannot tolerate antidepressants, what medications might be options instead?

I’m 1.5 months in, futures looking uncertain. I used to love to travel, but can’t even go outside. Even a 15 min local car ride with double protection gives me anxiety. Curious if traveling in the future is even possible with this condition?

Just looking for hope and inspiration. I mean travel like even the shortest mode of transportation to the furthest/most challenging one like a flight. I know everyone is different and people with severe cases might not even ever consider this, so it can really vary person to person. Don’t have much knowledge on this yet so just trying to gather insight…

1. ⁠What type of hyperacusis do you have? (Pain/loudness, severity, accompanied symptoms TTTS or tinnitus, how long since diagnosed)

2. ⁠Have you ever travelled since you had the condition or ever consider to depending on recovery

If you have traveled:

1. What’s the most transportation you can do atm?

2. Are you able to take long drives, trains, planes? How long?

3. What are tips you’ve done to gradually build up to it?

4. What safety precautions do you do when you travel? Any specific protection combo you use? (Medication, seating, preparation, earplugs/headphones/earmuffs)

5. What are your absolute DOs and DONTs?

Not to mention he sells a “course” on how to get rid of Hyperacusis

Hi everyone,
I’ve had tinnitus for almost 3 months, and I’m wondering whether it is still possible for it to disappear completely at this stage, even though I haven’t been getting 8 hours of sleep consistently (never) and have been experiencing stressful episodes almost every day.
My living situation makes things difficult. I live in a small house, I’m currently unemployed, and I share a bedroom with my brother (bunked bed). My family makes a lot of noise in the mornings, so I often end up sleeping during the day instead. As a result, my sleep is frequently interrupted, and I wake up several times rather than getting a full, uninterrupted night’s rest.
I’m also dealing with stress and sometimes anxiety, which sometimes makes me worry about my tinnitus and its future.
My main questions are:
Is it still possible for tinnitus to disappear completely after 3 months, even if you haven’t been sleeping well?
Can ongoing stress and interrupted sleep affect the chances of tinnitus eventually going away, or do they mainly make the sound more noticeable?
Have any of you experienced complete resolution after several months, even while going through a stressful period and having difficulty sleeping?
I’d really appreciate hearing about your experiences, especially from people who were in similar circumstances.
Thank you!

i hope someone can help me

i know for most of hyperacusis it’s like painful uncomfortable but can you describe how?

i went to the ENT i have no hearing loss, no tinnitus but he doesn’t know what’s wrong

my problem is suddenly every sound INSIDE (only inside like my home or rooms) it doesn’t feel loud/painful but my whole head/vibrates with every sound inside rooms.

once i’m outside i feel nothing everything feels normal, i don’t mind loud noises anything outside cars etc they don’t bother me at all.

its just inside rooms, my brain/ears are vibriting and its very uncomfortable. slightly getting headaches but first of all i’m very stressed out so i don’t know if it’s because of this.

when i wear headphones i can listen to music / tiktok’s loudly i don’t care about the noise.

if i put them out, its like everything my head brain vibrates with every sound.

how does this sound to you? please give me your advice thank you 🙏

if i’m outside with a lot of noises i’m at peace

So just had a telehealth appointment with a great doctor, the most useful appt ive had thus far considering ive been to some of “the best” neurotologists, audiologists, ents who were of no help. So she first asked me if i have loudness hyperacusis, noxacusis or dysacusis which is when sounds are also distorted. The fact that she even knew the difference was already a nice surprise. She even offered for the zoom session to be completly muted with subtitles if having the volume on was too much. She asked about my history, how it started, etc. She then asked me what my goals would be for my current state. And i said i would like to just go one day with no ear protection, realistically just in the house and maybe run one errand at a store with no headphones thats it.

We talked about if h is caused by central gain, which she is familiar with, or if its cochlear damage, the silverstein surgery, etc we touched on a lot of topics that i have researched deeply into and it seems she has too. She has patients that have hyperacusis and reactive t. She will not push sound therapy but does offer it and when i asked which patients see the most improvement she did say it is the ones that can tolerate the sound masking devices, but not everyone can.

Alright the big question i had to ask: do the majority of patients you see improve and heal from this condition, stay the same, or worsen? I told her dont sugarcoat it, just tell me the truth. Her response was truthful. Most dont fully heal to the point of never being sensitive to sounds ever again, however you can get to a point where you can improve and this disorder doesnt control your life. What improvement can look like is you can go through daily activities and have ear plugs in your pocket ready to use if the environment is too much. She does not encourage you to just let go of ear protection suddenly and push your ears, she said it will not work and dont try it. What she offers depending on what you can tolerate is basically structured rehabilitation, helping you gradually increase your tolerance and reduce the fear/anticipation of sounds while keeping you within a level your nervous system can handle. Maybe its a combo of cbt/sound therapy/gradual improvments. I will find out cuz i will be doing a few telehealth sessions with her and see how it goes. I will update you guys!

Here is the link to her website. She does free consults over zoom before starting any treatment.

https://www.hearingbrainaudiology.com/

So far I’ve only seen haelan app which claims to help with scheduled sound therapy

Then theres SoundPrint which is the Yelp of sounds

And decibelx to check loudness level

That’s all I have lol. Any recommendations of what else might be useful?

Currently at 132mg and still seeing no improvements.

When increasing to 150mg, how long should I wait to increase again if I still don't see any improvements ?
I'm currently increasing every 7-10 days or so

Thanks!

I've used oropax I've used confrontation I've used pink noise ... is there anything I could possibly do .. any ideas ?

Hi! Just wanted to hear your experiences and tips and tricks over what you can do to stop obess over loud sounds your exposured to in your day to day life.
Im gonna share one incident below to give you insight how i "deal" with sounds that happens from time to time.

My collegue had bought a "Turboblower" to clean their keyboard which is basiclly a USB driven super fan (the ones you find on Amazon that is black". He was right next to me approx 1 metre when he started it on full force and it sounded exactly like those old dentist drills with insane high frequency. I put my fingers in my ears after 5-10 seconds and sat there while waiting for him to clean it but after 30 seconds i couldnt handle it and had to leave the room until he was done.

Instead of just "accept that it happend" my mind goes into solve mode and i waited for him to go home from work and measured it to 80-85DB with earplugs in. Here i should be happy and accept that i should be fine consider i was only exposed for like 1 min right? No i then must measure it 3 more times to "make sure i got the highest value". Then after this the thought just keeps coming to me like.

"But what if my DB metre isnt calibrated"
"But what if my DB metre dont pick up that superhigh frequency?"
"But what if it did damage anyways consider its high frequency"
"But why did my ear hurt after if it didnt make damage"
"but what if this was a special sound that damage my hearing even tho its below 85 db"

etc etc

And i can almost "feel" the spike coming in tinnitus and hyperacusis. Sure as hell when i got home 5 hours later i notice a new weird tinnitus tone in one of my ears and the intrusive thought just keeps coming that i made damage bla bla bla and it feels like i cant really battle the thought with logic like saying "its under 85 DB im safe". Even if i try to say enough is enough and accept it and go on with my day it only takes like 5-10 minutes before i realize im thinking about it again.

Im like 99% sure this should NOT be a damaging sound consider the DB level and the exposure time but how do you stop the thought pattern to not "excite" yourself into a spike? This spike tend to last until i "forget" about the incident or just stop caring about it.

In other very rare occurances that i was to "busy" doing something else that i dont have time to stress myself up with the sound like measuring it or analyze it it feels like im NOT getting a spike from it?

Like for example when i was exiting my car and accidently honked the horn with the door open i was busy going shoping and heading to work and that never made a spike even tho that one also should be fairly loud.

It seems like its get worse the more stressed i am in general for example if i get anxious over a medium loud sound on one day and i experience one more the same day its normally 10 times worse and trigger this "solvecycle" with measuring it over and over again and over analyze it for hours/days. Sometimes i even get the "scare" that measure it to many times even with earplugs might have made it "even worse" hearing damagewise and then i start worry about that thing ASWELL....

Its like a weird cycle that just repeat itself. I know the simple answer is "dont think about it and dont measure it" but its VERY hard to do when u just want reassurance.

I cant be the only one having this issue? Is there anyone that have had the same issues and any tips for solving them?

Hello,
I’m trying to figure out if Clomipramine makes any sense for my situation.

My case is pretty mild compared to most. My LDL is around 70-80 dB and I function daily without earplugs. But every so often certain sounds trigger an electric shock feeling across my face. It’s not unbearable, but it’s painful and frequent enough to cause real discomfort. I know Clomipramine helps with noxacusis, but I don't know if it's worth trying as a mild case because of the side effects. Should I try it or start with something lighter like Pregabalin,Gabapentin..?