Suicidal

[dan]

I'm aching to get the hell out of here, but I have to finish my responsibilities.

How loud is your tinnitus? What does it sound like?

 

[Contrast]

How loud is your tinnitus? What does it sound like?

I have a completely unrelated health problem to my ears and it is torturing me.

 

[Chinmoku]

Tinnitus should improve slowly after withdrawal.

I was too poorly. Collapsing to pieces. Tinnitus monster level. Heavy anxiety and depression. I have kids to look after. Had to go back on the benzo after a 48h battle at zero I lost, hopefully for a short time

 

[Chinmoku]

I have a completely unrelated health problem to my ears and it is torturing me.

Medical research is progressing fast. Statistical learning has opened great possibilities. Could a cure be coming up for this other condition?

 

[dan]

Tinnitus monster level.

Can you describe this?... and did it subside?

 

[Chinmoku]

Can you describe this?... and did it subside?

Not even a sound anymore, an electric hiss at an extremely high pitch but not a well defined frequency, it brings about a huge sense of alarm. It also makes hearing difficult. A needle of sound piercing the left ear and the brain. I can hear it inside an aircraft over the jet engine, in heavy traffic, in a loud restaurant. It's reactive and unmaskable anyway but after pregabalin hit zero it went louder and unbearable. With the benzo it keeps a similar quality but it lowers in intensity. It can still be heard but it is more tolerable especially in silent environments. With that level it's impossible to sleep without benzo. Habituation seems also impossible.
Have you ever had tinnitus like this? A diabolical hiss from hell

 

[dan]

Not even a sound anymore, an electric hiss at an extremely high pitch but not a well defined frequency, it brings about a huge sense of alarm. It also makes hearing difficult. A needle of sound piercing the left ear and the brain. I can hear it inside an aircraft over the jet engine, in heavy traffic, in a loud restaurant. It's reactive and unmaskable anyway but after pregabalin hit zero it went louder and unbearable. With the benzo it keeps a similar quality but it lowers in intensity. It can still be heard but it is more tolerable especially in silent environments. With that level it's impossible to sleep without benzo. Habituation seems also impossible.
Have you ever had tinnitus like this? A diabolical hiss from hell

How do you mean it makes hearing difficult... severe tinnitus in itself cannot affect hearing.

 

[dan]

Have you ever had tinnitus like this? A diabolical hiss from hell

I got what you have, plus more sounds AND in both ears.

 

[Chinmoku]

How do you mean it makes hearing difficult... severe tinnitus in itself cannot affect hearing.

It is so loud that I struggle hearing sounds at low volume

 

[dan]

With that level it's impossible to sleep without benzo. Habituation seems also impossible.

Yes it's possible.

 

[dan]

It is so loud that I struggle hearing sounds at low volume

You are mistaken, you must have mild hearing loss then.

 

[dan]

High pitch tinnitus cannot interfere with sound because everyday sounds are a much lower frequency.
If your tinnitus was a loud low rumble, then I could see how it would affect hearing things of similar frequency.

 

[Orions Pain]

As far as I know, Chat Hyperacusis is being heavily moderated and anti-TRT sentiments will quickly get deleted and users blocked. Rob seems to believe pain-hyperacusis is mainly a mental health issue and people just need to let go of their fear of sounds, he's made several posts implying fear is the main issue.

Bryan Pollard from Hyperacusis Research said on a recent Tinnitus Talk Podcast episode:

• In more specific discussions with clinicians, as well as our own survey data, I have found that for those who have hyperacusis with pain, there is some evidence to indicate that they get much less benefit from either Sound Therapy, broadly, or TRT overall, than those who have loudness hyperacusis.
• With pain hyperacusis, earlier this year in talk on treatment for pain hyperacusis, the spokesperson said that we treat pain hyperacusis completely independently now from loudness hyperacusis and it requires a much more tailored approach and, also, we typically don't expect the same outcomes as we do with loudness hyperacusis.

Just want to make this clear: I'm not saying TRT didn't help those people but it doesn't help everyone with pain-hyperacusis and Chat Hyperacusis is very biased when it comes to TRT.

What helped me was to remember that I simply didn't know how much damage I was causing. If you had known what kind of damage you were causing, you most likely would have acted differently. Also, just because you're struggling now, doesn't have to mean it won't get better for you.

Perhaps I'll see how much improvement I can have on my own in a year. Then try TRT since my hyperacusis seems to be loudness hyperacusis rather than pain (for now, praying it stays this way).

 

[Orions Pain]

One thing that frustrates me like no other is when normal healthy people (friends/family) refer to those on forums as "those crazy people online" or tell you to stop reading horror stories since horror stories are mainly the minority.

While I agree to some extent, that within a certain time frame one should hope for a recovery but at the same time, each "horror story" is an actual human being and we can all get there.

I'm sure each one of these people was a "mild" or "moderate" case at some point. Their stories are real, and NOTHING is keeping anyone else from being in the same position which is why it's so frustrating. They're not just "horror stories" they're real people who had hopes and dreams.

If one more person tells me to stop self diagnosing myself and that my pain isn't real, I will seriously lose it. I wish at least my mom would for a second actually take a look at the things I show her and take it into consideration. Not even the horror stories, but just all of the information about doctors doing more harm than good, how "living normally" has had terrible end results, etc. I just want people to understand and show some compassion.

 

[Orions Pain]

I wish we could all just get a huge house in the middle of the country side somewhere and live life out peacefully and not alone (my anxiety thinking about the future when my family is gone) and I have nowhere to go.

 

[Chinmoku]

High pitch tinnitus cannot interfere with sound because everyday sounds are a much lower frequency.
If your tinnitus was a loud low rumble, then I could see how it would affect hearing things of similar frequency.

But if the volume is extreme it distracts you from other sounds. Does not cover them technically but makes them less audible.

 

[Chinmoku]

Yes it's possible.

Tell me how long it will take please

 

[dan]

But if the volume is extreme it distracts you from other sounds. Does not cover them technically but makes them less audible.

Yes I can agree with that... it competes for attention.

 

[dan]

Tell me how long it will take please

2-4 years.

 

[fishbone]

It is so loud that I struggle hearing sounds at low volume

Having very loud tinnitus, can possibly affect our hearing. I will also say that your hearing loss, might also be a possible issue as well.

 

[MrCrybaby]

My 1000 improved from 30db to 10db. It was marketed. I hear crazy better - too much so. My high frequencies are pretty muted to be honest. I lost that in the last few days. So in theory the loss of high did central gain and made low fq too loud. So getting OHC to regenerate may help turn down low fq that began to bother me.

Of note, I had a really bad buzz in my right ear last week. I thought it was T because of my recent spike. Well when the buzz went away, I had a quite for the afternoon. I thought piece at last! But two days later, my T came back and began hearing low fq sounds way too well. I think it means the high fq are most damaged since im having trouble hearing those now.

Hearing thresholds are inadequate as a reliable test to measure damage to the ear. Especially if you are using a headset at home, vs a carefully calibrated soundproof room set up like an audiologist. It's designed to fit a heating aid more than anything else. LDLs are a better indication of hyperacusis, but even then It's a subjective test.

Brain plasticity is very complicated, I personally find the most comfort in reading about the science so I understand it as much as I can. It's hard because not much research is understood yet. I found this site to have a pretty easy to understand but in depth explanation: https://hyperacusisfocus.org/central-auditory-system/

Even cutting edge science is just starting to figure out what's going on in this area, so I'd hold off from giving yourself a highly specific self diagnosis.

 

[fishbone]

With that level it's impossible to sleep without benzo. Habituation seems also impossible.

I have it that loud, bad and my hearing is very BAD. I sleep without benzos. Habituation is not impossible. Habituation is not even 100% possible, it might be, but I don't have it like that. Any habituation helps us live our lives with tinnitus. With habituation, we are able to push a little more forward in our lives with tinnitus and the noise/ringing will not afflict us like it did pre-habituation. All of this takes time, acceptance and working on your life, thinking and planning on a daily basis.

Tinnitus takes work, adjustments and just pushing forward. It's not easy, I never have it easy, but I still push each day. I plan ways, to help myself with this beyond horrible noise that afflicts me 24-7.....

 

[Capstan]

Hearing thresholds are inadequate as a reliable test to measure damage to the ear. Especially if you are using a headset at home, vs a carefully calibrated soundproof room set up like an audiologist. It's designed to fit a heating aid more than anything else. LDLs are a better indication of hyperacusis, but even then It's a subjective test.

Brain plasticity is very complicated, I personally find the most comfort in reading about the science so I understand it as much as I can. It's hard because not much research is understood yet. I found this site to have a pretty easy to understand but in depth explanation: https://hyperacusisfocus.org/central-auditory-system/

Even cutting edge science is just starting to figure out what's going on in this area, so I'd hold off from giving yourself a highly specific self diagnosis.

Thanks it's just so hard to understand why everything is so loud. My app had been very consistent over the past month until the hyperacusis started. I figured that would give a clue to what is going on until I can be seen. I have started hearing things at a very far distance that I couldn't previously. I also now have distorted hearing. Motors and fans are the most overpowering sounds.

 

[Capstan]

I have it that loud, bad and my hearing is very BAD. I sleep without benzos. Habituation is not impossible. Habituation is not even 100% possible, it might be, but I don't have it like that. Any habituation helps us live our lives with tinnitus. With habituation, we are able to push a little more forward in our lives with tinnitus and the noise/ringing will not afflict us like it did pre-habituation. All of this takes time, acceptance and working on your life, thinking and planning on a daily basis.

Tinnitus takes work, adjustments and just pushing forward. It's not easy, I never have it easy, but I still push each day. I plan ways, to help myself with this beyond horrible noise that afflicts me 24-7.....

Have you experienced distortion. For example where motors sound strange and over powering?

 

[El BUZZ]

With that level it's impossible to sleep without benzo. Habituation seems also impossible.

Hi @Chinmoku. My tinnitus started four years and five months ago. It has been intrusive since day one. Unmaskable. Loud. First year took me through the darkest and toughest passages a human being could go through. I felt like throwing the towel every single day. Then, little by little, I started to recover segments from my pre-tinnitus life. I reconnected with lots of aspects of myself which were completely abandoned. I have to admit that I sometimes fell back in the pit but my average day to day was pretty decent despite having that loud hiss/shrill/drill sound in my head. I habituated. I got tired of feeling bad about it or something. Don't know how the magic worked but I felt alive again. It takes time.

Now I am back to square one after a permanent worsening which started out of the blue almost two months ago. I am going through a lot of suffering and mental pain at the moment and I feel completely desperate ironically missing my old sweet LOUD & intrusive tinnitus. Don't want to tell how this crap sounds now... Just imagine it.

 

[Tweedleman]

This is completely my speculation, but I think if you have IHC damage, FX-322 seems like it might work lower than the "3500 Hz and up" range because there are more LGR5+ support cells (the substrate for the progenitor cell activators) around IHC vs OHC. So, if you don't have actual audiogram changes at the low frequencies, I think version 1.0 could still help.

I can't quite recall but didn't you also find out that Frequency is using the same kind of gel (or something) as either Otonomy or Pipeline that, they have said, has no problem reaching the apex?

 

[Eloy Resendez Jr]

You hit the nail on the head @fishbone, we're all a work in progress. We can't let it control us, however we do have to adapt to it. Hang in there.

 

[El BUZZ]

I can't quite recall but didn't you also find out that Frequency is using the same kind of gel (or something) as either Otonomy or Pipeline that, they have said, has no problem reaching the apex?

But seriously, mates. When do you think these drugs will be available for us?

 

[Orions Pain]

Actually feel like I'm losing my mind. Thinking of going to the emergency room, worried about making it through the day.

 

[FGG]

I can't quite recall but didn't you also find out that Frequency is using the same kind of gel (or something) as either Otonomy or Pipeline that, they have said, has no problem reaching the apex?

They are using the same compound (Polyaxomer 407) that Pipeline is and I asked them (Pipeline) if their compound can reach the whole cochlea all the way to the tip of the apex and they said, yes. This started my own personal speculation that FX-322 can also reach the apex but might need a much higher concentration of compound to affect the OHCs at that level (vs IHCs which have many more nearby LGR5+ cells than OHCs do).

This is just me musing and trying to connect some dots. The dramatic word score changes with the low safety dose makes me think that, in addition to UHF OHC regeneration, they may have regenerated IHC much further down the cochlea which would definitely help with "clarity".