I Truly Think There Is Nothing That Makes Less Sense Than Tinnitus

[mrbrightside614]

Between medications' simultaneous proclivity to improve or exacerbate, completely unpredictable spikes and non-linear progression, the sheer number of contributors and etiologies, the lack of attention or understanding from the medical and political bodies, the habituation phenomenon and why some are able to achieve it while others are not, and its responding to sickness and herbal medications for some while it's completely unaffected for others—I am convinced that there is not a single thing more upsettingly nonsensical and unable to cope with.

I don't want to be negative. I am a firm believer that a substantial portion of our community will be helped immensely in the next 18 months or so from the novel therapies coming down the pipeline—really, I am. But as an incredibly mentally strong person prior to having this condition who was always able to overcome with a "mind over matter" perspective, I am falling short in the way of coping with this particular affliction. I just cannot stand the sheer unpredictability and numerous social repercussions with which this condition hands you.

 

[Auron]

Lot's of things don't make sense in life, but, as you said, the next 18 months could prove to be huge for us. If anything we will be 18 months wiser and hopefully 18 months stronger.

 

[Harley]

Between medications' simultaneous proclivity to improve or exacerbate, completely unpredictable spikes and non-linear progression, the sheer number of contributors and etiologies, the lack of attention or understanding from the medical and political bodies, the habituation phenomenon and why some are able to achieve it while others are not, and its responding to sickness and herbal medications for some while it's completely unaffected for others—I am convinced that there is not a single thing more upsettingly nonsensical and unable to cope with.

I don't want to be negative. I am a firm believer that a substantial portion of our community will be helped immensely in the next 18 months or so from the novel therapies coming down the pipeline—really, I am. But as an incredibly mentally strong person prior to having this condition who was always able to overcome with a "mind over matter" perspective, I am falling short in the way of coping with this particular affliction. I just cannot stand the sheer unpredictability and numerous social repercussions with which this condition hands you.

You hit the hammer square on the head there.
This has to be the most erratic, unpredictable, elusive and illogical condition in existence.
It almost seems it is playing with you on purpose.

 

[Kriszti]

I just sent this to people who don't understand why I'm not able to "move on" and "get used to it" after 3 months. And I'm not even mentally strong or an optimist to begin with, so the sheer uncertainty is messing up my mind and my life horribly. I don't understand why my brain hates me this much.

 

[all to gain]

Between medications' simultaneous proclivity to improve or exacerbate, completely unpredictable spikes and non-linear progression, the sheer number of contributors and etiologies, the lack of attention or understanding from the medical and political bodies, the habituation phenomenon and why some are able to achieve it while others are not, and its responding to sickness and herbal medications for some while it's completely unaffected for others—I am convinced that there is not a single thing more upsettingly nonsensical and unable to cope with.

I don't want to be negative. I am a firm believer that a substantial portion of our community will be helped immensely in the next 18 months or so from the novel therapies coming down the pipeline—really, I am. But as an incredibly mentally strong person prior to having this condition who was always able to overcome with a "mind over matter" perspective, I am falling short in the way of coping with this particular affliction. I just cannot stand the sheer unpredictability and numerous social repercussions with which this condition hands you.

I am in agreement with you on everything... except where are you getting this 18 months from? Is that in relation to Shore's device?

 

[mrbrightside614]

Lot's of things don't make sense in life, but, as you said, the next 18 months could prove to be huge for us. If anything we will be 18 months wiser and hopefully 18 months stronger.

Yeah I keep hearing the "makes us stronger" silver lining but honestly this disease is just killing me. I'm on more meds, can't focus or do anything as well as I used to and am totally handcuffed from advancing in my career due to this ailment.

I just sent this to people who don't understand why I'm not able to "move on" and "get used to it" after 3 months. And I'm not even mentally strong or an optimist to begin with, so the sheer uncertainty is messing up my mind and my life horribly. I don't understand why my brain hates me this much.

I could even go on longer about how much less sense this makes but I just made this post out of frustration and don't need to dwell in it any longer. It's truly an unnecessarily cruel & misunderstood predicament.

You hit the hammer square on the head there.
This has to be the most erratic, unpredictable, elusive and illogical condition in existence.
It almost seems it is playing with you on purpose.

Thank you. It really does feel that way. Although I am agnostic and don't believe in a participatory god, I feel that I am being tortured and punished. I don't even have a lesson to learn from this. I was always someone who soaked and breathed in every moment while I had it—tried to make it last as long as it could. Now my heart just feels wasted, and my soul crushed while my physical body languishes in what should be the prime of my life.

I am in agreement with you on everything... except where are you getting this 18 months from? Is that in relation to Shore's device?

Both FX322 and the Shore device should be released around then.

 

[bobvann]

I'm having on em days too. Yesterday was faded it's nutso.

 

[all to gain]

.
Both FX-322 and the Shore device should be released around then.

I'd be very surprised to see FX-322 released in 18 months. Even if it was it probably wouldn't be available for general use until much later. Hope I'm wrong though.

 

[mrbrightside614]

I'd be very surprised to see FX-322 released in 18 months. Even if it was it probably wouldn't be available for general use until much later. Hope I'm wrong though.

You could be right, and it could be 2 years. I'm getting a high frequency audiogram just in case they do have to do a phase 3 so I might be able to qualify.

 

[Chinmoku]

Amen

 

[Harley]

Now my heart just feels wasted, and my soul crushed while my physical body languishes in what should be the prime of my life.

I know exactly how you feel.
Complete mental death, but somehow the body never got the memo and it is still alive.
It's like being trapped in another dimension, held for hostage and tortured for no good reason whatsoever.

Something this bad should only exist in a horror movie, where you get to go home after it ends.
But we are somehow trapped inside of it on a 24/7 loop instead.
This condition is inhumane, outrageous and disgusting.

 

[mrbrightside614]

I'm having on em days too. Yesterday was faded it's nutso.

This is why the "brain memorizes it" theory seems ridiculous. Why would it be better, then worse again? I'm 6-7 months in and the patterns make absolutely no sense. Why would people get sudden remission after years? Why would some people notice slight diminishing month after month? There aren't any good answers or even educated guesses. Insanity.

 

[bobvann]

This is why the "brain memorizes it" theory seems ridiculous. Why would it be better, then worse again? I'm 6-7 months in and the patterns make absolutely no sense. Why would people get sudden remission after years? Why would some people notice slight diminishing month after month? There aren't any good answers or even educated guesses. Insanity.

I'm going on 3 years. According to habituation cults I should be 100% habituated by now! Silly me for failing! It's all my fault! TRT and CBT! Both failed..

 

[mrbrightside614]

I'm going on 3 years. According to habituation cults I should be 100% habituated by now! Silly me for failing! It's all my fault! TRT and CBT! Both failed..

Yeah I have to say I think those therapies are worthless. If I ever get through this I'm definitely going to have to speak to a therapist to get over the fact that my late 20's were lost due to a 72 year old driver that shouldn't have been on the road.

 

[MRItechssuck]

I'm going on 3 years. According to habituation cults I should be 100% habituated by now! Silly me for failing! It's all my fault! TRT and CBT! Both failed..

At the time 20 years ago, there was just TRT, which seemed like a scam at the time...I never did it... I habituated in around 4 years. I was 29-30 then... I told myself f@ck it... just press on. I never sat around rating it, checking it's loudness, I never kept a spreadsheet... but it was mild, as I said.

This time around it's much more severe and caused by a person that shouldn't have been working in medicine, and I'm probably f@cked... oh well... one choice is unacceptable... so the other choice is to, again say f@ck it... and press on.

 

[Harley]

I'm going on 3 years. According to habituation cults I should be 100% habituated by now! Silly me for failing! It's all my fault! TRT and CBT! Both failed..

They are very good at creating the illusion that there are all kinds of treatments for tinnitus out there.

If you look at the BTA website for example, you get the impression that all you need to do is pick one that is right for you.

What they fail to clearly communicate is the fact that all those "treatments" only deal with the effect and the fallout rather than the direct cause.

But when those pseudo-treatments fail, instead of apologizing for not being able to deliver a real treatment, they blame your bad attitude instead.

 

[bobvann]

Yeah I have to say I think those therapies are worthless. If I ever get through this I'm definitely going to have to speak to a therapist to get over the fact that my late 20's were lost due to a 72 year old driver that shouldn't have been on the road.

My fave saying to come out of all this... Snake... Oil...

 

[bobvann]

They are very good at creating the illusion that there are all kinds of treatments for tinnitus out there.

If you look at the BTA website for example, you get the impression that all you need to do is pick one that is right for you.

What they fail to clearly communicate is the fact that all those "treatments" only deal with the effect and the fallout rather than the direct cause.

But when those pseudo-treatments fail, instead of apologizing for not being able to deliver a real treatment, they blame your bad attitude instead.

Read my early posts. As I have said. What a racket. Spend thousands of dollars and get nothing or possibly worse in return. Charlatans are alive and well in the 21st century.

 

[Bobby Sinatra]

This condition absolutely shattered any belief in reason and causality in this life.

 

[all to gain]

You could be right, and it could be 2 years. I'm getting a high frequency audiogram just in case they do have to do a phase 3 so I might be able to qualify.

No offense, and I like your enthusiasm, but I'd be surprised if it's released and available even in 5 years time.

I SO hope that I am wrong though.

 

[mrbrightside614]

No offense, and I like your enthusiasm, but I'd be surprised if it's released and available even in 5 years time.

I SO hope that I am wrong though.

They've been fast tracked, and could even be granted conditional approval to hit the market without phase 3 testing. Since there's nothing on the market to compare it against, apart from hearing aids, this could actually happen. Phase 2 results will be released in late fall I believe? Why would phase 3 take SO much longer than their other two?

 

[carolinet617]

I don't know if people have brought this up elsewhere, but what I'm worried about is that I won't be able to afford treatment even if it is available.

Even Lenire right now; I'm so happy and excited for everyone getting to try it but even if I lived in Ireland I couldn't afford the device. Due to my depression and tinnitus I'm unable to work but keep getting denied disability. Without help from my parents I'd be homeless. I know I'm very lucky to have their help and there must be people out there worse off than I am. I don't mean to be all "poor me" about it, but I'm worried that all these devices are going to be unobtainable for a lot of people. I guess the price comes down over time, but that's just more excruciating waiting, especially knowing there might be a cure out there that I'm just unable to get.

 

[bobvann]

I don't know if people have brought this up elsewhere, but what I'm worried about is that I won't be able to afford treatment even if it is available.

Even Lenire right now; I'm so happy and excited for everyone getting to try it but even if I lived in Ireland I couldn't afford the device. Due to my depression and tinnitus I'm unable to work but keep getting denied disability. Without help from my parents I'd be homeless. I know I'm very lucky to have their help and there must be people out there worse off than I am. I don't mean to be all "poor me" about it, but I'm worried that all these devices are going to be unobtainable for a lot of people. I guess the price comes down over time, but that's just more excruciating waiting, especially knowing there might be a cure out there that I'm just unable to get.

Keep in mind that Lenire is not working for everyone and if what I have been reading is right (please feel free to correct me if I am wrong) may have caused someone further acoustic trauma.