I Want...

[aot]

I want to use earbuds and listen to music and my podcasts.

I want to not be scared of any noise that I don't expect, even if deep down I know it's probably harmless.

I want to be able to ride the bus without earplugs.

I want to be able to see a movie, to go to a restaurant, to go shopping, to even start my day without thinking "I hope nothing happens that makes this worse."

I want to be able to sleep in a quiet room without listening to rain sounds.

And more than anything, I want to have not been punished for the apparent crime of... going out and having a fun time with my friends.

Bad feelings lately, everyone. Nothing harmful, just mopey. Send good vibes, please.

 

[Sevv]

I want to use earbuds and listen to music and my podcasts.

I want to not be scared of any noise that I don't expect, even if deep down I know it's probably harmless.

I want to be able to ride the bus without earplugs.

I want to be able to see a movie, to go to a restaurant, to go shopping, to even start my day without thinking "I hope nothing happens that makes this worse."

I want to be able to sleep in a quiet room without listening to rain sounds.

And more than anything, I want to have not been punished for the apparent crime of... going out and having a fun time with my friends.

Bad feelings lately, everyone. Nothing harmful, just mopey. Send good vibes, please.

I feel for you. It's hard when you get punished so severely for misjudging a situation. But such is life.
I have had an interest in buddhism for years and since having this higher level of tinnitus I've had many insights about life dawning on me. Tinnitus has been a good teacher to me, even if also a brutal one. Two of the main precepts of buddhism are that any craving and any aversion to something leads to suffering. Once you realise that you crave for something or have aversion to it, you can let go of it mindfully (which you train with meditation). Craving does not mean that you do not want something, but you do not make it a prerequisite to your happiness (same with aversion, just the other way around).

A couple of my major cravings and aversions I found out for myself and I managed to change to simple acceptance:

- Fearing tinnitus (and all its consequences, like worse sleep, worse relaxation, potential early death if it gets even worse)
- Fearing death/craving life (letting go of this craving does not mean that I do not value life, I just accept that it can be taken away from me anytime; it also means that I do not take my life for granted and hence I am much more grateful for everyday experiences I might have before my end comes, which might well be next year if I screw up again)
- Craving a girlfriend (I've never had one and I might never get one; I have always been miserable about this)
- Craving to appear successful to my parents (which has led me to the wrong career)

I tell you, even though my tinnitus is worse (moderate-ish), I feel so much in tune with myself as it has never been in my entire life. I do not say that I'm better off despite my louder tinnitus - judging often comes with craving or aversion - but I think I can say that I've become more mature and calmer. Still it would be nice to eventually have silence back and leave a bit of a legacy of myself for others. I wish that I can continue like this for the next couple years without another worsening.
Buddhism and meditation are not a panacea, but atleast they allow the pain of tinnitus to be managed somewhat (results probably depend on the severity of your tinnitus).

 

[ASilverLight]

I feel you so much here, for real.

I want to go back to enjoying music and feeling at peace. I've always been one for moderation, and so even my noise exposure was pretty limited compared to most people my age. I didn't like going out so I've only been a few times and mostly stayed outside where it wasn't too loud. I've loved a good gig now and then, but only about 2 a year and with protection. My headphone/earbud use was limited to travel and late night - hardly ever more than that, and I've always disliked having my music loud.

There's just so much I miss, and it's only been a few months. The peace of silence and stillness, the intense joy I would get from hearing a good song... the idea of being able to go out and not be worried... and of course, looking forward to the future.

I don't know whether mine is noise induced as a lot of other stuff is going on, but man. It's so sour being here after protecting my ears the best I could while still enjoying life in moderation.

Hopeful better things will come to all of us. Hang in there.

 

[zombiechick]

I'm sorry you're feeling this way. I am too just wanting to feel normal. My spouse is taking me to the hospital today. I haven't really been sleeping and now my tinnitus is reactive. If my choking phobia wasn't plaguing me, I wouldn't go but I can barely get enough food and now I have no peace in bed. I need some relief. Going back on Zoloft. It didn't lower the tinnitus but it made it less reactive and gave me some of my life back. I just have too many things happening at once.

I hope you are still able to achieve joy in the little things. I hope we both are able to.

 

[Orions Pain]

Couldn't have said it better myself. It's hard to navigate the world when sound has become your enemy.

*sending hugs*

 

[aot]

I'm sorry you're feeling this way. I am too just wanting to feel normal. My spouse is taking me to the hospital today. I haven't really been sleeping and now my tinnitus is reactive. If my choking phobia wasn't plaguing me, I wouldn't go but I can barely get enough food and now I have no peace in bed. I need some relief. Going back on Zoloft. It didn't lower the tinnitus but it made it less reactive and gave me some of my life back. I just have too many things happening at once.

I hope you are still able to achieve joy in the little things. I hope we both are able to.

Thank you, Zombiechick. What's been going on with me lately pails in comparison to your struggles. I desperately hope things improve for you.

I've been considering Zoloft myself, but I'm not sure how to best proceed.

 

[Bill Bauer]

I want to use earbuds and listen to music and my podcasts.

I want to not be scared of any noise that I don't expect, even if deep down I know it's probably harmless.

I want to be able to ride the bus without earplugs.

I want to be able to see a movie, to go to a restaurant, to go shopping, to even start my day without thinking "I hope nothing happens that makes this worse."

I want to be able to sleep in a quiet room without listening to rain sounds.

And more than anything, I want to have not been punished for the apparent crime of... going out and having a fun time with my friends.

Bad feelings lately, everyone. Nothing harmful, just mopey. Send good vibes, please.

The above reminded me of the song about the things the popular 1970s Soviet singer you can see below Doesn't want/like (a rare song of his that I dislike):

 

[zombiechick]

Thank you, Zombiechick. What's been going on with me lately pails in comparison to your struggles. I desperately hope things improve for you.

I've been considering Zoloft myself, but I'm not sure how to best proceed.

It hard at first. Your doctor will put you on 25mg for the first 7 days and that's a rough week. Your tinnitus will go up a bit but you have to stick with it and the next week you go up to 50mg. It can take up to six weeks but it did help and that's the only reason I'm going to do it. It just helped me cope and I was able to live life a little more without always worrying. Thats my experience. Everyone is different.

 

[zombiechick]

Thank you, Zombiechick. What's been going on with me lately pails in comparison to your struggles. I desperately hope things improve for you.

I've been considering Zoloft myself, but I'm not sure how to best proceed.

And I stayed away from the hospital today. My therapist and husband told me to wait for my regular doctor tomorrow.

 

[Foamearplugssuck]

I want to use earbuds and listen to music and my podcasts.

I want to not be scared of any noise that I don't expect, even if deep down I know it's probably harmless.

I want to be able to ride the bus without earplugs.

I want to be able to see a movie, to go to a restaurant, to go shopping, to even start my day without thinking "I hope nothing happens that makes this worse."

I want to be able to sleep in a quiet room without listening to rain sounds.

And more than anything, I want to have not been punished for the apparent crime of... going out and having a fun time with my friends.

Bad feelings lately, everyone. Nothing harmful, just mopey. Send good vibes, please.

Yeah, this pretty much describes how I've been feeling as well. I've barely been listening to anything since moving back in with my parents for quarantine. I miss vibing on train rides, listening to music, more than anything. I dont think I'll ever feel true happiness knowing I'll never experience that simple joy again. I'm tired of not being able to leave my house without putting earplugs in, and I'm tired of being tired. I long to go out with my friends and go to concerts, but I can't anymore. I'll never be able to enjoy my youth.

I'm so, so sorry you're going through this, but you aren't alone. We'll have fx-322 in like 5-10 years, and hopefully that will help. Hang in there.

 

[Lucifer]

Yeah, this pretty much describes how I've been feeling as well. I've barely been listening to anything since moving back in with my parents for quarantine. I miss vibing on train rides, listening to music, more than anything. I dont think I'll ever feel true happiness knowing I'll never experience that simple joy again. I'm tired of not being able to leave my house without putting earplugs in, and I'm tired of being tired.

I'm so, so sorry you're going through this, but you aren't alone. We'll have fx-322 in like 5-10 years, and hopefully that will help. Hang in there.

I really hope it's not 5-10 years. I hope at the latest 2 years, earlier even better. Don't know if I could last 5-10years without a cure. I feel so drained and tired everyday dealing with this shit.

 

[hans799]

I have had an interest in buddhism for years and since having this higher level of tinnitus I've had many insights about life dawning on me.

Same here. Tinnitus was a major factor in my conversion to Buddhism. It teaches the Noble Truths in a painful but very effective way. Life is suffering (which doesn't mean that literally every moment is bad, it only means that nothing ever is truly and lastingly satisfying... and with a constant noise in our head, that one is really easy to see), and the cause of that suffering is craving (just as you've described).

Meditation with tinnitus is hard, though. It often devolves into "mindfulness of tinnitus and feelings of anxiety". But I've been able to do whole 10-day silent retreats with it, so it's possible.

 

[Sevv]

Same here. Tinnitus was a major factor in my conversion to Buddhism. It teaches the Noble Truths in a painful but very effective way. Life is suffering (which doesn't mean that literally every moment is bad, it only means that nothing ever is truly and lastingly satisfying... and with a constant noise in our head, that one is really easy to see), and the cause of that suffering is craving (just as you've described).

Meditation with tinnitus is hard, though. It often devolves into "mindfulness of tinnitus and feelings of anxiety". But I've been able to do whole 10-day silent retreats with it, so it's possible.

I don't really do insight meditation and stay mindful during the day instead. I do metta meditation sometimes though.

 

[Juan]

I really hope it's not 5-10 years. I hope at the latest 2 years, earlier even better. Don't know if I could last 5-10years without a cure. I feel so drained and tired everyday dealing with this shit.

I would like to remain realistic...

 

[hans799]

I really hope it's not 5-10 years. I hope at the latest 2 years, earlier even better. Don't know if I could last 5-10years without a cure. I feel so drained and tired everyday dealing with this shit.

Regen medicine might not be out in 2 years but more bimodal stuff probably will. Susan Shore, improvements to Lenire.

Also, don't forget that treating the symptoms can also bring relief. For example, sleep: there are some super exciting sleep meds on the horizon. Dayvigo (lemborexant) which just got approved by the FDA, and daridorexant which finished its first Phase 3 clinical trial like 2 weeks ago.

Both, but especially daridorexant, seem to be significantly better than current sleep meds: the trial for daridorexant showed it was more effective than Ambien, BUT had almost no next-day drowsiness and no tolerance or rebound insomnia. Meaning you could take it for a long time. A guaranteed good night's sleep every night could really help cope with tinnitus (and life in general).

So we might not have a cure in 2 years but some relief will probably be available.

 

[Sevv]

Two years would be the best possible case for FX-322 with compassionate use in the case it works, on which I'm very optimistic (I'll fly to the US if this happens, probably not possible from outside the country?). But the Shore device should be out earlier.

 

[aot]

Two years would be the best possible case for FX-322 with compassionate use in the case it works, on which I'm very optimistic (I'll fly to the US if this happens, probably not possible from outside the country?). But the Shore device should be out earlier.

I mean, I'm optimistic about the Shore device, but my fear is less about my tinnitus (which I can ignore most of the time and is masked by everyday noise.) And more about it getting worse, and maybe developing hyperacusis. If I could be told, with 100% certainty, that I was stuck with this level of tinnitus for the rest of my life, I could live with that. But sadly that's not the case.

So, FX-322 is what I'm keeping my eyes on. And the Hough Ear pill, but I doubt that'll ever reach the market tbh.

 

[FGG]

I mean, I'm optimistic about the Shore device, but my fear is less about my tinnitus (which I can ignore most of the time and is masked by everyday noise.) And more about it getting worse, and maybe developing hyperacusis. If I could be told, with 100% certainty, that I was stuck with this level of tinnitus for the rest of my life, I could live with that. But sadly that's not the case.

So, FX-322 is what I'm keeping my eyes on. And the Hough Ear pill, but I doubt that'll ever reach the market tbh.

Why do you doubt the Hough pill will reach the market? They are being very savvy imo about designing a study population (cochlear implant trauma) that will ensure it does and relatively fast.

 

[aot]

Why do you doubt the Hough pill will reach the market? They are being very savvy imo about designing a study population (cochlear implant trauma) that will ensure it does and relatively fast.

I don't know, it just seems too good to be true for me. A pill that fixes hearing loss for less than the price of a hearing aid? I have no doubt that it could (and probably does work.) But since Hough has
run into financial issues in the past regarding it, and issues surrounding COVID-19 slowing all of soceity down it seems, I'm not very optimistic.

Compare this to FX-322, who has high investment value (as opposed to the nonprofit Hough.), is known to work some extent, and is on fast track by the FDA. Downside is it's going to cost an arm and a leg.

That being said, you're more knowledgeable about these things than I am. Perhaps I'm misinformed.

 

[serendipity1996]

I mean, I'm optimistic about the Shore device, but my fear is less about my tinnitus (which I can ignore most of the time and is masked by everyday noise.) And more about it getting worse, and maybe developing hyperacusis. If I could be told, with 100% certainty, that I was stuck with this level of tinnitus for the rest of my life, I could live with that. But sadly that's not the case.

So, FX-322 is what I'm keeping my eyes on. And the Hough Ear pill, but I doubt that'll ever reach the market tbh.

Yeah, the uncertainty over whether it will get worse is a real killer and so demoralising. Even if you've improved it feels like you're constantly having to look out for a relapse. This shit never fully goes away - like you, I'm hoping FX-322 will come thru for us.

 

[FGG]

I don't know, it just seems too good to be true for me. A pill that fixes hearing loss for less than the price of a hearing aid? I have no doubt that it could (and probably does work.) But since Hough has
run into financial issues in the past regarding it, and issues surrounding COVID-19 slowing all of soceity down it seems, I'm not very optimistic.

Compare this to FX-322, who has high investment value (as opposed to the nonprofit Hough.), is known to work some extent, and is on fast track by the FDA. Downside is it's going to cost an arm and a leg.

That being said, you're more knowledgeable about these things than I am. Perhaps I'm misinformed.

Hough doesn't work on the same structures as FX-322. They fix broken synapses which is a subset of hearing issues. OTO-413 is trying to do a similar thing but intratympanically so it's obviously a feasible concept. Hough's pill is likely safe enough to use in quantities that would get into the cochlea easily. In contrast, Frequency's drug is not safe in large amounts systemically (but it is safe given IT). Also remember "ototoxicity" wouldn't be a thing if drugs couldn't get into the cochlea orally.

The Hough pill reportedly does two things: stops cochlear trauma from becoming permanent (with it's extremely powerful anti oxidant and free radical scavenging abilities) and repair synapses which can cause hearing issues.

They know it works for both but it is being tried for the first indication because that's easy to show effectiveness for diagnostically. Ie do frequencies adjacent to the CI get worse on an audiogram post implant or better.

Funding is no longer an obstacle now that they have revised their study for that indication and it is basically a "sure thing". Oblato is funding that.

Hough has said they also want to raise funds for a tinnitus "proof of concept study" for their own information but this really shouldn't change when this drug is released and the ability for off label use. They saw indications in phase 1 it works for tinnitus.

 

[ASilverLight]

The scariest thing is having no clue where my tinnitus came from and thus not knowing whether any of the upcoming treatments work at all. Noise seems unlikely although it may be a possibility, but right now it's impossible to get anything tested or figured out anyway and the longer that takes, the more I risk any fixable cause, causing permanent damage.

It's scary times. I just really miss feeling at peace, rested, and enjoying music.

 

[aot]

Hough doesn't work on the same structures as FX-322. They fix broken synapses which is a subset of hearing issues. OTO-413 is trying to do a similar thing but intratympanically so it's obviously a feasible concept. Hough's pill is likely safe enough to use in quantities that would get into the cochlea easily. In contrast, Frequency's drug is not safe in large amounts systemically (but it is safe given IT). Also remember "ototoxicity" wouldn't be a thing if drugs couldn't get into the cochlea orally.

The Hough pill reportedly does two things: stops cochlear trauma from becoming permanent (with it's extremely powerful anti oxidant and free radical scavenging abilities) and repair synapses which can cause hearing issues.

They know it works for both but it is being tried for the first indication because that's easy to show effectiveness for diagnostically. Ie do frequencies adjacent to the CI get worse on an audiogram post implant or better.

Funding is no longer an obstacle now that they have revised their study for that indication and it is basically a "sure thing". Oblato is funding that.

Hough has said they also want to raise funds for a tinnitus "proof of concept study" for their own information but this really shouldn't change when this drug is released and the ability for off label use. They saw indications in phase 1 it works for tinnitus.

I didn't consider any of that. Thanks for keeping such a close eye on this. You're a damn fine contributor to this site.

 

[Kriszti]

I mean, I'm optimistic about the Shore device, but my fear is less about my tinnitus (which I can ignore most of the time and is masked by everyday noise.) And more about it getting worse, and maybe developing hyperacusis. If I could be told, with 100% certainty, that I was stuck with this level of tinnitus for the rest of my life, I could live with that. But sadly that's not the case.

I feel a lot like this. I'm fortunate, because during lockdown, my main sound's baseline got to the mild level, but still fluctuates a lot. I live a really quiet life, but every time I'm exposed to moderate sounds with ear protection (eg. blowdryer, car, vacuum), it cranks the volume up so much. So, I'm pretty much ok, if I live confined to my room doing nothing, but that's not possible and there is a risk of developing hyperacusis. And because this whole condition started with a horribly loud low buzz in my left ear, I know how severe it can get and I'm always worried and in numbing fear of what the future holds.

I really just want to get all the things back that I took for granted.

 

[Juan]

I don't know, it just seems too good to be true for me. A pill that fixes hearing loss for less than the price of a hearing aid?

The news about "the pill that fixes hearing loss" have been around for so many years that I no longer believe in any of this.

 

[Bartoli]

Regen medicine might not be out in 2 years but more bimodal stuff probably will. Susan Shore, improvements to Lenire.

Also, don't forget that treating the symptoms can also bring relief. For example, sleep: there are some super exciting sleep meds on the horizon. Dayvigo (lemborexant) which just got approved by the FDA, and daridorexant which finished its first Phase 3 clinical trial like 2 weeks ago.

Both, but especially daridorexant, seem to be significantly better than current sleep meds: the trial for daridorexant showed it was more effective than Ambien, BUT had almost no next-day drowsiness and no tolerance or rebound insomnia. Meaning you could take it for a long time. A guaranteed good night's sleep every night could really help cope with tinnitus (and life in general).

So we might not have a cure in 2 years but some relief will probably be available.

I'm not big on trying new medicine, even with all the safety testing prior to release. Long-term side effects are never really tested. You never know what might happen...

 

[Bartoli]

The news about "the pill that fixes hearing loss" have been around for so many years that I no longer believe in any of this.

In the past the speculation revolved around stem cells and they failed to live up to the hype (or we haven't got methods to fully harness their potential), now they have a molecule that they found is actually regrowing hair cells in a lab setting and some mildly hopeful results in human testing. I understand your skepticism (I myself am like that). But this is not the same as 10 years ago. I really hope it'll work. Doesn't have to be perfect for it to provide some meaningful reduction.

 

[Lucifer]

I'm not big on trying new medicine, even with all the safety testing prior to release. Long-term side effects are never really tested. You never know what might happen...

View attachment 38634

Dafaq lol. Tell me that's fake right?

 

[Juan]

In the past the speculation revolved around stem cells and they failed to live up to the hype (or we haven't got methods to fully harness their potential), now they have a molecule that they found is actually regrowing hair cells in a lab setting and some mildly hopeful results in human testing. I understand your skepticism (I myself am like that). But this is not the same as 10 years ago. I really hope it'll work. Doesn't have to be perfect for it to provide some meaningful reduction.

I hope it works too, but I am still skeptical, and maybe the time it takes to develop a cure to regrow hair cells is a lot slower than we think.

On top ot that, given my experience with doctors, I would be reluctant to be one of the firsts to go on that new path, should the "cure" finally appear...

 

[all to gain]

Dafaq lol. Tell me that's fake right?

Your post is funnier than the actual photo