"Your Tinnitus Is a Mild Case and Mine Is Severe"

[makeyourownluck]

comparing each other has no value

I think this is the main thing to take away from this post, we shouldn't be comparing. I suppose it's just hard to find a balance on a forum where we all technically have the 'same' condition.

Catastrophic sufferers get offended when people talk about habituation in a way that makes it seem like everyone can achieve it, with just lifestyle changes and positive thinking.

While mild/moderate/severe sufferers get offended when the catastrophic cases minimise their experience.

We don't truly know what another person is experiencing. A member may have another chronic illness which makes them focus on the noise more, stops them leaving the house, causes severe pain, etc. They may have no support network, or be in a toxic relationship, which makes even a mild case harder to deal with.

However, what I do know is that I personally cycle between positive and negative thinking, and that is most definitely correlated with the amount of pain I'm in. For me, positive thinking can only take me so far, when the suffering becomes too intense It's almost impossible for me not to spiral into depression. It's something I'm trying to work on and I hope I can train my brain out of it like @GeorgeLG suggests.

 

[tofurky]

To @tofurky:

I suggest you look up the word "gooberish", since its meaning is fully applicable to you.

To @DaveFromChicago:

I suggest you look up the word "douchebag," since its meaning is fully applicable to you.

 

[DocTors_94]

There would be so much to say about these two lines, but the OP said a lot already.

Yet, please, take a minute to re-read what you just wrote, then re-read the OP's posts. Maybe you will find something beyond the words that resonate within yourself, even though it might sound unpleasant.

I will not go over the details of my case again, you can find it in other threads and I believe it's becoming a bit sad to have to justify your own catastrophic case to be heard.

All of you who are in a dark place can get out of it one day, with or without a cure. I just wish you knew that too.

Stay strong

Do not worry, I will try to stay away from posting here. This will probably my last reply in this thread. I do not want to waste what's left of my energy and my little will to live to argue with people who do not believe what I am going through, and despite explaining my unbelievable situation, they just keep pushing positivity stuff.

I understand your wish to help others, but you have to understand my situation is, unfortunately, too much, as it would be for any human being.

You asked @Chinmoku to try to have a conversation with friends, I do not know if he can or he doesn't but you clearly do not understand then what's a true category 4 tinnitus (which is even mentioned in the lovely TRT books), where it clearly states: "tinnitus or hyperacusis worsened after noise exposure". Now, imagine that but with 30 dB noise, and also getting tinnitus worsening without sound exposure (my case). I have 10-20 spikes each day, and I lost count of the number of tones. The last time I counted I had around 16 sounds. It seems like a cruel joke.

This should be a new category for sure. And even the book says the category 4 are the hardest to treat which is probably an euphemism: it's impossible to treat a category 4 that spikes from minimal noise, because he will have to be isolated 24/7 from noise. So there's no treatment there, just pure survival instinct and survival mode. That's what my life has become.

Do you spike from brushing gently your teeth? Do you need to be isolated 24/7 with earmuffs listening to your tinnitus at music volumes? Do you fast 24-48 hours or even 72 hours some days with your stomach hurting from hunger, just in order to avoid spiking from moving your jaw while eating liquid food while you hear just blaring tinnitus? Are you restricted to stay in your room and not to talk to anyone in order to avoid spiking and try to slow the progression of your tinnitus? Does your tinnitus mimic 30 dB sounds (like the bird chirp I explained)? Do you have a subwoofer and a JACKHAMMER? (I can tell you nothing, absolutely NOTHING gets close to the torture of those tones).

I do not know, but that's my situation. What would you do in my case? If you would try to have a beer with a friend, you are guarantee to worsen a lot, probably 1-2 months worth of worsening... Basically, I am stuck.

Tell me I have not been positive enough and that I am guilty of suffering... I just went to medical appointments a few times, to seek help, with double protection. I got the damn subwoofer tone thanks to one of the trips. I was plugging my ears properly, so no occlusion effect could happen there. Yet I gained a lot of new inhumane tones thanks to 1 damn trip of few minutes. And the car wasn't a Hummer in case you wonder.

And all the doctors there would tell me the same: we can't help you. Maybe I could try some antiseizure meds, I got prescribed some, but it's extremely risky because it has 0 evidence and this antiseizure med I got prescribed has deafness as a side effect (rare, but possible). So basically, I am stuck.

And you can't tell me it is because I haven't been positive, just re-read my post. I visited tons of ENTs, some neurologists, talked to 2 audiologists (who just talked about fight or flight, which, honestly I am way beyond reacting, the tinnitus increases without any anxiety or panic attacks). I also emailed to basically every tinnitus researcher, everyone, to no avail. So I am the last person who is interested to suffer, positivity will not make my suffering lower. I would like to see how many people would have survived as much as I did in my extreme situation... And I am not wishing this on anybody, I am just saying that having people downplaying my inhumane torture and saying that positivity will be a treatment for me, I find it a bit offensive, almost insulting.

Your intentions are probably to help other sufferers, but the issue is that you have to understand there are cases which are beyond mental strength, like mine for example. And I am not someone who didn't seek for help, I have looked for it and realized how doomed I am after seeing how my little hopes of a compassionate use for a few drugs and Deep Brain Stimulation in the Netherlands/France got no response or denied.

So I try to survive as much as I can for as long as I can, that's all I can do if I still want to live.

@GeorgeLG, I understand your intentions are to help other sufferers, I hope your post works for them. Thanks for trying to help, but unfortunately there's a few of us who are just doomed with these massive amount of stupid misfiring brain cells that tortures us to unimaginable levels where positivity can't do much...

Anyways, wish you well.

 

[Chinmoku]

I have done my best to bring what I believe can and will help others and it is my hope that at least a few people will be helped by what I have offered. To those who read this that are on their journey please know that the worst cases of desperate tinnitus are sad and unfortunate but a small number and in all likelihood will not apply to you. For most there is always hope and a path to improvement. Grieve for these unfortunate souls and move forward.

I agree with everything you say here, we the 0.1% are not wishing anyone what befell us. I'm sure Gaby would say the same, as would Allan1967, Brian P, Kent Taylor...

I hope that something eventually helps you find relief. There is beauty everywhere, even in pain.

Here I don't agree, unfortunately. Beyond a given level, pain becomes the only thing that is there and totally dominates your life. There is no positivity that can help you. I'm referring to my own experience of course, but I think it's relatable. When my tinnitus was a moderate hiss, or even moderately severe, I could push through and still see the beauty of life. Now that it's an insane electric scream that dominates all my conscious experience and has physical pain qualities associated with it, I have a life of continued, 24/7 torture. I can still find some moments of beauty, but they are less and less, and if the progression continues, my life will be entirely defined by pain. It already is in large part. But I'm the 0.1%, everyone else should be hopeful, most tinnitus cases improve and are away from this forum, and most manage to habituate, so I agree a message of hope for the 99.9% is a good thing.

 

[Pitseleh]

Do you spike from brushing gently your teeth? Do you need to be isolated 24/7 with earmuffs listening to your tinnitus at music volumes? Do you fast 24-48 hours or even 72 hours some days with your stomach hurting from hunger, just in order to avoid spiking from moving your jaw while eating liquid food while you hear just blaring tinnitus? Are you restricted to stay in your room and not to talk to anyone in order to avoid spiking and try to slow the progression of your tinnitus? Does your tinnitus mimic 30 dB sounds (like the bird chirp I explained)? Do you have a subwoofer and a JACKHAMMER? (I can tell you nothing, absolutely NOTHING gets close to the torture of those tones).

I do not know, but that's my situation.

As a matter of fact, I did go through terrible hyperacusis that lasted for more than a whole year and yes, I did spike from every single detail you mention.

It subsided.

As to your questions regarding tinnitus, I do have a subwoofer and a jackhammer 24/7, among other noises.
I know what catastrophic tinnitus is, category 4 or whatever people call it.

I never mentioned TRT or positivity.

I'm OK with your belief that nothing can be done for you except for a medical cure.

Stay strong, you already are.

PS: are you taking any medication ?

 

[Chinmoku]

@Chinmoku has made a very good point with a very well organized reply. Why has everyone seemingly ignored it?

Because some people overgeneralize their experience and think that because they made it, everyone else will. There is really a total lack of humility in these positions. People like Gaby, Allan, Kent, Brian P, and I know at least 5 more, should not exist or have existed. It's sad. We are not wishing anyone else to enter our 0.1% club. If we could close it, God the blessing. But we are here, we are real, our pain is valid, and CBT/Mindfulness/Hypnosis have not helped us. I meditated for years and years pre-tinnitus, and did everything I could, diligently, rigorously. It doesn't stop progressing to impossible levels. But people will insist it's just me not being diligent enough, not being insistent enough. It's a total lack of humility, it's a sad form of arrogance, it's really sad.

 

[GregCA]

I agree with everything you say here, we the 0.1% are not wishing anyone what befell us.

According to:

"Millions of Americans experience tinnitus, often to a debilitating degree, making it one of the most common health conditions in the country. The U.S. Centers for Disease Control estimates that nearly 15% of the general public — over 50 million Americans — experience some form of tinnitus. Roughly 20 million people struggle with burdensome chronic tinnitus, while 2 million have extreme and debilitating cases."

Extreme and debilitating cases are about 4% of tinnitus sufferers, and 0.6% of the whole population.

 

[Pitseleh]

Because some people overgeneralize their experience and think that because they made it, everyone else will.

We're as much overgeneralizing ours that you are overspecifying yours. Yet, I don't believe it's about humility.

Deeply, it's not bringing me any pride to be here wasting minutes to try and bring a different perspective on suffering. I could be here promoting "miracle techniques" and posting links to my hypnology website to get new clients. I always refused to do that, and you know that because we discussed on a different thread.

I was just here to bring the proof that yes, your mindset can get better, your life can too, even when you believe you're the worst and that nothing can be done.

You're tired of reading it, I'm sorry.

Others will find relief knowing it can happen. It's just not yet happened to you. And yes, maybe it never will. People will still take their lives off, people will still have horrific lives.

Who could be so stupid to ignore it?

Now... where do we go from here?

 

[AnthonyMcDonald]

It subsided

Wish we could say this. I've been with this longer than a year and nothing has ever subsided for me, except for rare singular situations then I got worse afterwards anyways.

If someone answer to "does your tinnitus spike every day from quiet sound or for no reason" is "no", or "not anymore", then they should not push mindfulness and CBT onto someone who is obviously in a very different situation from them, not to mention gaslight them saying things like they're being "too negative" or "you're not doing it right".

 

[GeorgeLG]

OTO-313 plans on reducing receptor hyperactivity in the cochlea. Susan shore's device also plans on reducing misfirings of the fusiform cells in the DCN. XEN-1101, a much safer reformation of Retigabine (which silenced some people's tinnitus) aims to reduce neural hyperactivity. How is this in any way related to perception?

With all due respect, our claims aren't without reason. There are no personal attacks here from us. Our despair is quite different and should not be grouped with those who have first joined with initial onset anxiety, as awful as it is. Yes, I first went though it as well. I had tinnitus that I could "hear" everywhere, and after some months I really did get better mentally, despite tinnitus not changing. Then I was plunged into the 9th circle of hell with daily worsening and hyperacusis that wouldn't allow me to breathe. So I fully understand what it means and how to adapt to loud unchanging tinnitus. I did not, however, coach others who I knew to be much worse than myself on how to improve, knowing full well that what has helped me could not work for them, as they were on another level entirely.

I'm truly glad that you're getting better and I do truly understand what you went through. But do you spike permanently from low level noise? Does your tinnitus permanently increase for no reason every day? I really, really don't understand how anyone can possibly relate to us, knowing well that this isn't the case for them?

I understand that you & others have good intentions, but is it that hard to realize that there are some cases where this, yes, even persevered, CBT and mindfulness doesn't work? Why is it so hard to realize that this can be the case? Mindfulness being considered a cure to tinnitus has pushed back research by decades. Yes, the vast majority of people will never be bad as us, and I hope they do understand that and don't give up hope. But that does not mean that catastrophic unstable cases should be pushed to the side, as little as there are.

@Chinmoku has made a very good point with a very well organized reply. Why has everyone seemingly ignored it? Cases of constant permanent worsening cannot be grouped together even with severe, stable cases. We are, unfortunately, without exaggeration absolutely the worst of the worst.

Does Dr. Hubbard, who advertises CBT to have basically cured him, say that he permanently worsens daily? No, he does not. He can play the saxophone without spiking. CBT and mindfulness certainly can work, but it does not work for everybody. Why is this so hard to understand? Why is it that whenever someone says it doesn't work for them the reply they get is "you're doing it wrong", or "haven't done it long enough"?

@AnthonyMcDonald, you keep asking if hopeful people suffer like you, if we understand that some cases are hard. My tinnitus has flared up horribly from my latest surgery and especially from my chemotherapy last week. It is so reactive today that I could not flush the toilet this morning even with earplugs. I can't use my desktop computer, I had to wear ear defenders to do the dishes last night and go outside to get the mail. A thunderstorm came through yesterday afternoon and I spent the entire afternoon locked in the house with foam earplugs and ear defenders. Yesterday I opened a squeaky door and a spike nearly took my head off.

Is my tinnitus mild or consistent? Hell no it's not. How many tones do I have? About a dozen and it changes all day long, every day. That's my reality today. How long will this last, I don't know. How many more of these will I have, I don't know. What I do know is that the techniques I discuss in this thread have helped me for 40 years and are helping me right now, including today. Most days now my tinnitus does not bother me but I had to do the work. They helped my wife and they have helped my friends. Today I will stay positive and get the very best I can out of another day on this earth. I know I will get better in part because I believe it is possible. I am already better than I was in the beginning. I am here trying to help people who suffer.

Right now you are your own biggest limitation to healing. You are stuck. You're a year in, you don't know what is and isn't possible yet. Examine the phrase toxic positivity and think about what is really bothering you. The self examination that is required is not always comfortable but it is necessary. I have been through it myself. I had a lot of things to work out when I was younger.

I have no idea what you hear, I will never know the details of your suffering. I do know from your words that you do not have a mild reaction to your situation. You have closed off any possibility of what I have written helping you. In the 80's when I learned these techniques, a year wasn't even enough for my suffering to become its worst before I was moved to finally get to work and get better. You are placing artificial limits on what is possible because something else is bothering you.

People talking about getting better is not shutting down research. If there is a financial opportunity and a technical feasibility, a cure will come. My mindfulness is not going to make Susan Shore pack up her lab and retire.

There are practitioners in every field that make unfounded claims especially in the natural health circles. We always have to perform our due diligence and be careful with our medical decisions, wary of false claims. False claims of natural cures did not prevent polio vaccines, the elimination of TB, the development of the surgery that saved my life in February. Not everything is curable however. My wife's cancer was not and neither is mine but there is still relief. Life has pain, we age and parts of our body break down. We have accidents that accumulate. Pain is certain, suffering is optional. I'm a 67-year-old man with back injuries, arthritis, tinnitus and cancer and I have suffered unspeakable loss. I have found relief and I find joy in every day. Comparing yourself to others and deciding with 100% certainty that there is no hope for you is tragic. I want better for you. I want you to have less suffering in your life. I also want the new sufferers who come here for help to know that you can get relief. It happens every day.

George

 

[GeorgeLG]

Because some people overgeneralize their experience and think that because they made it, everyone else will. There is really a total lack of humility in these positions. People like Gaby, Allan, Kent, Brian P, and I know at least 5 more, should not exist or have existed. It's sad. We are not wishing anyone else to enter our 0.1% club. If we could close it, God the blessing. But we are here, we are real, our pain is valid, and CBT/Mindfulness/Hypnosis have not helped us. I meditated for years and years pre-tinnitus, and did everything I could, diligently, rigorously. It doesn't stop progressing to impossible levels. But people will insist it's just me not being diligent enough, not being insistent enough. It's a total lack of humility, it's a sad form of arrogance, it's really sad.

@Chinmoku, it is sad that people do not empathize and support those that find no cure and suffer. I have incurable cancer and get told every week "oh you will be fine". Pretty callous and dismissive to a guy who is facing his mortality all too early. My wife had an ultra rare cancer affecting only 150 people per year. She was 54. The 0.1% club is a rough place to hang out. I know I'm in it too. My most recent cancer has put me in the medical literature. That said, I understand that some people come here for support and for an understanding person to offer sympathy. I understand frustration and venting. You seem like a reasonable guy who chooses his words carefully, I appreciate that. We must, in our frustration and fear not destroy the hopes of the other 99.9% Many of the 0.1% have a lot of energy with strong and powerful words, and dominate some of these discussions. This ironically can make it look to the uninitiated like it represents the 99%. That additional tragedy needs to be avoided. Dashing the efforts of the hopeful does not help even us. I think you know this, I'm speaking to everyone on this thread.

I hope you find relief, it sounds like you are really trying.

George

 

[Chinmoku]

Extreme and debilitating cases are about 4% of tinnitus sufferers, and 0.6% of the whole population.

Yea, I don't know how they compare to us here, there is no way to know, maybe there will be one with the Bionics Institute, but I'm talking about extreme^2 here, and I use 0.1% figuratively. But we can call it 4% club or 0.6% club, the message does not change.

 

[David S]

As a matter of fact, I did go through terrible hyperacusis that lasted for more than a whole year and yes, I did spike from every single detail you mention.

It subsided.

How did you treat your hyperacusis? Sound generators?

 

[Chinmoku]

We're as much overgeneralizing ours that you are overspecifying yours. Yet, I don't believe it's about humility.

Deeply, it's not bringing me any pride to be here wasting minutes to try and bring a different perspective on suffering. I could be here promoting "miracle techniques" and posting links to my hypnology website to get new clients. I always refused to do that, and you know that because we discussed on a different thread.

I was just here to bring the proof that yes, your mindset can get better, your life can too, even when you believe you're the worst and that nothing can be done.

You're tired of reading it, I'm sorry.

Others will find relief knowing it can happen. It's just not yet happened to you. And yes, maybe it never will. People will still take their lives off, people will still have horrific lives.

Who could be so stupid to ignore it?

Now... where do we go from here?

I'm sorry but this is not how it works.

If someone makes a claim that "everyone can be helped by this technique, by a positive mindset" etc, the burden of proof is on them. I need only one counterexample to disprove it, or better a few, but one is enough. One may then claim that the counterexamples are false, they are not authentic, they have not worked hard enough, etc, but that is lack of humility, it's pretending to know that person life and experience, it's doubting and invalidating their pain.

If I had claimed "you are wrong, no one ever gets better from severe tinnitus" then the burden of proof would be on me, and you would have an argument there, but you don't because I never claimed that. This is not symmetric as you imply.

No disrespect meant, your intentions are good and appreciated, but, for the millionth time, there are people who suffer extremely, who have suffered for years, and hearing that it always gets better doesn't help them because that has not been their experience, and they feel invalidated, unrecognized, like they don't exist.

I hope I won't have to repeat this again, it's getting tiring.

 

[GeorgeLG]

Wish we could say this. I've been with this longer than a year and nothing has ever subsided for me, except for rare singular situations then I got worse afterwards anyways.

If someone answer to "does your tinnitus spike every day from quiet sound or for no reason" is "no", or "not anymore", then they should not push mindfulness and CBT onto someone who is obviously in a very different situation from them, not to mention gaslight them saying things like they're being "too negative" or "you're not doing it right".

Build on those rare instances. Think about the circumstances, foods, stimulants, anxiety, calmness, activities. Now you know it's possible. This is part of how I got better, I built on what worked and avoided triggers.

George

 

[AnthonyMcDonald]

Build on those rare instances. Think about the circumstances, foods, stimulants, anxiety, calmness, activities. Now you know it's possible. This is part of how I got better, I built on what worked and avoided triggers.

I really appreciate your positive outlook. I really do. I know you really, truly want to help, and I really appreciate it. But I cannot do any activities as I spike permanently from noise below 25 decibels, have tried every diet under the sun, avoid stimulants. As I have said previously anxiety is not an issue for me, neither is it for @DocTors_94.

I do some activities, like playing online games, and try to stay as calm as possible. But there is no progress when there is no breathing room.

I was in a much better state when I stabilized and could breathe. Now that the tinnitus had taken off again it leaves me crushed and hopeless. I cannot avoid triggers as everything for me is a trigger. Eating, drinking, walking, hell, even breathing causes permanent spikes and more tones. I cannot avoid doing those things. Wish you well.

 

[Chinmoku]

@Chinmoku, it is sad that people do not empathize and support those that find no cure and suffer. I have incurable cancer and get told every week "oh you will be fine". Pretty callous and dismissive to a guy who is facing his mortality all too early. My wife had an ultra rare cancer affecting only 150 people per year. She was 54. The 0.1% club is a rough place to hang out. I know I'm in it too. My most recent cancer has put me in the medical literature. That said, I understand that some people come here for support and for an understanding person to offer sympathy. I understand frustration and venting. You seem like a reasonable guy who chooses his words carefully, I appreciate that. We must, in our frustration and fear not destroy the hopes of the other 99.9% Many of the 0.1% have a lot of energy with strong and powerful words, and dominate some of these discussions. This ironically can make it look to the uninitiated like it represents the 99%. That additional tragedy needs to be avoided. Dashing the efforts of the hopeful does not help even us. I think you know this, I'm speaking to everyone on this thread.

I hope you find relief, it sounds like you are really trying.

I already told you I have enormous respect for you, George. I'm not doubting your experience or the pain you went through for a second.

I think there is a balance to be kept here. Maybe you made your post because you perceived an imbalance of perspectives and you saw the forum as excessively skewed towards pessimism.

I don't know if that is true, but posts like "the power of the mind" etc pop up from time to time.

I think it's important not to scare newcomers, and those should be rapidly pointed to the success stories area.

This is a support area, I would like it to be of support of everyone, both to people who are seeking reassurance but also to people who keep suffering and can find some empathy in other sufferers who don't get better despite huge efforts, and also to people who feel suicidal, who are the most in need.

I think there is room for everyone, we just need to avoid exaggerate claims, one way or the other.

I think you are helping people here, and I never meant to sabotage that, but I'm thinking of the 0.1% (poetic license, before @GregCA corrects me again) who have not been helped for years and years, I don't say they are beyond hope but I want them to know that their pain is valid and that I love them even if they have not managed to improve. Someone should also think about these cases. If one is suicidal because they have fought this condition for years but only got worse, what would they want to hear? Your pain is valid, I'm suffering with you, you are not alone, or you will get better if you adopt a positive mindset? I don't know, but I'd leave the choice to them. One thing does not exclude the other, I think we both agree on this.

Peace.

 

[GeorgeLG]

I already told you I have enormous respect for you, George. I'm not doubting your experience or the pain you went through for a second.

I think there is a balance to be kept here. Maybe you made your post because you perceived an imbalance of perspectives and you saw the forum as excessively skewed towards pessimism.

I don't know if that is true, but posts like "the power of the mind" etc pop up from time to time.

I think it's important not to scare newcomers, and those should be rapidly pointed to the success stories area.

This is a support area, I would like it to be of support of everyone, both to people who are seeking reassurance but also to people who keep suffering and can find some empathy in other sufferers who don't get better despite huge efforts, and also to people who feel suicidal, who are the most in need.

I think there is room for everyone, we just need to avoid exaggerate claims, one way or the other.

I think you are helping people here, and I never meant to sabotage that, but I'm thinking of the 0.1% (poetic license, before @GregCA corrects me again) who have not been helped for years and years, I don't say they are beyond hope but I want them to know that their pain is valid and that I love them even if they have not managed to improve. Someone should also think about these cases. If one is suicidal because they have fought this condition for years but only got worse, what would they want to hear? Your pain is valid, I'm suffering with you, you are not alone, or you will get better if you adopt a positive mindset? I don't know, but I'd leave the choice to them. One thing does not exclude the other, I think we both agree on this.

Peace.

@Chinmoku, I agree with you, I try not to say it works for everyone, if this does not work, you failed, it's a cure, or any of that. I have tried to present this as an opportunity for relief for most and I have recognized the "0.1/0.6/1.0%" as I did in a previous posts:

"For anyone who has tried with an open mind and in earnest to get better and who has and will not see any improvement in their condition, then my heart goes out to you and I am sorry for your suffering."

"The truth is that for every single disease there is a certain percentage that will never get better. This is true, there is always a bell curve and at one tail end is a small set of needless suffering."
​

The studies I presented don't say cure or all, they say improvement and most. I also acknowledged that this forum serves different purposes and some come here for support and are desperate in their suffering. As to balance, there are 1,000 views here and 700K views on the suicide thread. There is no risk of my work bringing balance anytime soon.

Now comments to all on this thread. My issue is that there are those that cannot let the hopeful content stand, ever. They are not content with hanging out in the suicide thread or the threads discussing cure. I spent some time on the suicide thread and it's not for me, my hopeful content was not welcome there. I'm not wired that way and I don't know how to safely help someone who talks about harming themselves and it was too shocking to watch people suggest that others harm themselves or teach them how, so I don't go there anymore. It's the largest thread on this site, it's a big and inclusive place. There are 8,000 posts and 666K (not making that up) views on the suicide thread alone, the largest thread on this forum. The latest thread on South Korea is one of the most active threads this past month discussing a potential cure. I also don't hang out in those medical cure threads. I let those passionate about that work lead those discussions.

I come here to offer help with what I know, with what I have seen work over and over again for countless people. I am addressing the larger population that still has hope and the energy to try something else. But then the usual suspects come wandering out of those other threads to do everything they can to project their 0.1% pain and frustration onto the rest of the population, many who are open and desperate for help - or to criticize the character of someone claiming to have gotten better. This is self centered and dangerous. Imagine a scared, horrified young person filled with hopes and dreams comes here with this new noise in their head, stumbles onto a positive thread and then the dread of the 0.1% washes over them as they watch those 0.1% bash the OP/supporters and read of hopelessness and doom, sending them home in despair and who knows what else. It's mean, it's vile and it's inhumane. We as a group can do better than this. What is the purpose of leaving the suicide thread with so many like minded people and coming here and declaring any attempt at relief complete bullshit and then to start attacking people? That's rhetorical, I know why. I am now talking to everyone who behaves this way - I am telling you with 100% certainty that if you behave this way you have not tried everything because you are filled with anger and rage and I will know in the deepest pit of my soul forever that this prevents healing. I am a trained and certified healer in ancient Chinese healing arts, this and my 35 years of experience with chronic pain and the power of the mind is what I know. You are also hurting people, maybe even pushing them to their "limit". If that is what you want, then that will get handled above my pay grade somewhere else in the universe. If you do not intend this, then please consider the power of your words. We can be better than this.

I have said my peace here and offered the help I have available. I have exhaustively told my personal and painful story in an attempt to connect to just one hopeful person and help them. Hopefully the content can stand up against the "toxic negativity" that washes over any help I have offered that is not a magic pill taken once to provide complete cure with zero effort on the part of the patient. Wouldn't that be nice, if only the world worked that way. If only the universe did not present our lives with challenges that need our strong commitment and effort to resolve. If only it was all completely fair and we got to be at the center.

My offer for help is not a denial of the suffering of the 0.1%. I am not trying to hurt you. I have recognized your pain and I grieve for your suffering. I am in your club in multiple areas. I am here to heal and serve others.

George

 

[GeorgeLG]

I really appreciate your positive outlook. I really do. I know you really, truly want to help, and I really appreciate it. But I cannot do any activities as I spike permanently from noise below 25 decibels, have tried every diet under the sun, avoid stimulants. As I have said previously anxiety is not an issue for me, neither is it for @DocTors_94.

I do some activities, like playing online games, and try to stay as calm as possible. But there is no progress when there is no breathing room.

I was in a much better state when I stabilized and could breathe. Now that the tinnitus had taken off again it leaves me crushed and hopeless. I cannot avoid triggers as everything for me is a trigger. Eating, drinking, walking, hell, even breathing causes permanent spikes and more tones. I cannot avoid doing those things. Wish you well.

I'm sorry that I could not help you. I hope you get it sorted out.

George

 

[LilCC]

George, I preface this by saying that I have great respect for you, for what you went through, for how you handled the care of your dying wife, for your approach to life more generally, and for your personal suffering.

Unfortunately, your thread is turning into a copy of the other one, Unleashing the Power of the Mind to Manage Tinnitus? | Tinnitus Talk Support Forum.

This has been a recurring discussion here for years.

I started from your side, but unfortunately after years of continued worsening and torture, merciless 24/7 torture, I had to humbly accept that people like @DocTors_94 and @AnthonyMcDonald are right.

On the other hand, think of people who haven't made it. Think of Gaby Olthuis. This poor woman stood her ground with impossible fortitude for years and years, she was down to living in a letter stamp, as she put it, because her hyperacusis was so bad and the tinnitus so maddening she eventually couldn't go on anymore. Do you seriously believe that a mother of children with her willpower would have gone that way if any alternative were possible? If mindfulness or CBT worked? If your soothing techniques worked universally? You would be disrespecting her, her memory and her suffering if you claimed this.

So my friend, I'm sorry, I appreciate your positive attitude, I have great respect for you, but quoting Thich Nhat Hnan or the Dalai Lama is not going to work. I told the story in the other thread, but even a mindfulness expert (not a wannabe who becomes a mindfulness therapist with a 6 months MSc) who studied in India for years said there are levels of pain that cannot be helped by mindfulness, unless you are wired like the Dalai Lama. I think the same extends to hypnosis and CBT.

We are probably the 0.1% of cases but we exist, our pain is valid, our desperation is real, our impossible suffering is real, and there is no amount of mindfulness or CBT that can help us significantly. I was an expert meditator for years, you can read my exchange with @StoneInFocus (great guy) in the other thread if you are interested in the details.

But we need a cure for these atrocities, and we need them yesterday, or a few people will continue to die, and it's not their fault, and they will not be saved by CBT or ACT or mindfulness, radical acceptance and the likes.

With respect.

This!

 

[GeorgeLG]

This!

Looks like a good place to wrap this up then.

George

 

[Wrfortiscue]

I really appreciate your positive outlook. I really do. I know you really, truly want to help, and I really appreciate it. But I cannot do any activities as I spike permanently from noise below 25 decibels, have tried every diet under the sun, avoid stimulants. As I have said previously anxiety is not an issue for me, neither is it for @DocTors_94.

I do some activities, like playing online games, and try to stay as calm as possible. But there is no progress when there is no breathing room.

I was in a much better state when I stabilized and could breathe. Now that the tinnitus had taken off again it leaves me crushed and hopeless. I cannot avoid triggers as everything for me is a trigger. Eating, drinking, walking, hell, even breathing causes permanent spikes and more tones. I cannot avoid doing those things. Wish you well.

Hey man, what took you from somewhat severe stable to catastrophic hyperacusis? Or you don't know? Was it overexposure?

 

[AnthonyMcDonald]

Hey man, what took you from somewhat severe stable to catastrophic hyperacusis? Or you don't know? Was it overexposure?

Yeah. It was a haircut with clippers. Then just continuous exposure. Aka "going out and living life" like my ENT told me to do.

 

[Wrfortiscue]

Yeah. It was a haircut with clippers. Then just continuous exposure. Aka "going out and living life" like my ENT told me to do.

Makes sense... many of us have worsened doing just that. I have been telling my audiologist anytime I am aggressive and allow more sounds, my tinnitus goes haywire at night. At least she is understanding and telling me to plug up for now when needed.

 

[Pitseleh]

How did you treat your hyperacusis? Sound generators?

It got better when I stopped trying to cure it and focused on improving my emotional state with hypnosis. To be honest, I was sure it had nothing to do with my emotional state and started working on myself reluctantly, until I realized how much an impact it can have on physical pain, not only psychological pain.

It moved from super aggressive (couldn't eat without earplugs, couldn't wash dishes at all, couldn't bear voices, etc.) to a livable hyperacusis, that I still have.

When my emotional state got better, sounds stopped harming me little by little.

 

[GeorgeLG]

I woke up this morning with a few additional thoughts to add to what I have said already.

To those who have contributed here (and on other threads I have been involved in or authored) with compassion, grace and support in the service of others suffering, thank you. I include anyone who has come without malice and anger and offered their story even if it is to say that these things did not work for them and they struggle to find relief. Thank you for sharing your journey, no matter how difficult. This forum is many things to many people spanning the gamut of research, telling and sharing their story of recovery to announcing their departure, anger, personal attacks and everything in between. Thank you for participating to try and help those lives that we can touch. To those that suffer in perpetuity and for which my words and the support of others here have not helped you, I am deeply sorry for your suffering and I am sorry that I could not help you. I am not trying to hurt you or transfer the blame for your illness to you or criticize your strength or character.

To those with hope looking for help, the vast majority of tinnitus sufferers can get relief, less than one 1% of the 1 billion with this condition have their lives brought to ruin. For that 1% (or 0.1% as it is called here) it is tragic and we must offer our support and kindness , even if they attack us in frustration and anger. For everyone else, please know that you can find some measure of relief not just in this thread but in many other excellent threads with wonderful advice and counsel. If you are still filled with hope, stay out of the suicide thread and read some success stories to know what is possible. I will be starting my 8th decade soon and I know one thing for certain, life throws curves balls at us at various times through the wonderful ride and that as we age some pain is inevitable. The human spirit is strong and our resilience is amazing. Human beings have been overcoming impossible obstacles for thousands of years even as impossible odds have been presented. This condition can be a challenge, on any given day but there is always hope and in virtually every case, relief.

Be strong and passionate about what you want, not what you don't want.

George

 

[jecamp1]

I for one will never give up getting better, not with cancer and not with tinnitus. Life is not about getting dealt a perfect hand, it's about playing the hand we are dealt the very best we can.

Thanks for this reminder. Needed it tonight.

 

[GeorgeLG]

Thanks for this reminder. Needed it tonight.

Glad we could help and thanks for the note.

George

 

[Steph1710]

Don't be your own biggest limitation, you have more power over this than you know.

This sentence resonates with me.

Thank you for your knowledge and sincerity. Your above posts are both touching and truthful accounts of what it can mean to suffer.

 

[Johan001]

@GeorgeLG, thank you for your posts, I have always been very appreciative of them and totally agree with what you say.