Stop Telling Me to Live with It or Habituate

[Gl0w0ut]

This condition isn't taken seriously by the scientific or medical community already, in large part because it is only an annoyance that people are expected to live with.

So stop telling me and others to work towards habituation. That is letting your brain and the tinnitus win.

Swear to fight it.

 

[threefirefour]

I totally agree with you OP. Thing is you won't be getting much other opinion here. Until recently "live with it" was the only school of thought here. I'm glad we're diversifying but the vast majority are going to tell you that.

 

[Markku]

Thing is you won't be getting much other opinion here.

There's a reason the majority have no issues advocating habituation.

The reason is simple.

Habituation is right now most of the time the only thing that can allow oneself to restore some quality of life.

It is very difficult to think why someone would rather, on purpose and willingly, fight habituation than to allow for it to possibly occur.

I would actually go as far as saying that many who think they want to fight against habituation... will actually end up habituating sooner or later.

It's not an active process you have full control over. It can happen even if you vehemently hate the idea now. Trust me. I've seen it happen to the biggest habituation haters.

Feeling neutral - or positive - toward habituation isn't going to make a negative difference to your needs of a cure being found.

You can still raise awareness of tinnitus and highlight tinnitus where it needs highlighting. You can still want a cure too.

Wouldn't all of that be nicer to do when you aren't driven mad by the noise all the time?

It's not giving up when you habituate. It becomes a sound that no longer triggers your emotional responses.

I'm not habituated. I'm far from it. I'm unsure if I ever will.

Yet I would never discourage anyone from seeking habituation.

Nor am I on purpose fighting against it.

And at the same time we're involved in many tinnitus projects, also collaborating with researchers... and will continue to do so.

I wish you guys would re-focus your habituation hate to actually doing something truly meaningful, like grassroots efforts for helping organizations like British Tinnitus Association, American Tinnitus Association, Tinnitus Research Initiative...

But please, at the very least don't put down the people who try to help you and give you advice even if it is something you don't fancy. People mean well.

Just saying.

 

[Lady Lion]

I totally agree with you. The doctors I've seen are so uncaring and unsympathetic. They seem to think that what I have is just a symptom not a disease.

So they don't take the suffering that me and so many other tinnitus patients go through on a daily basis seriously.

That really pisses me off.

That and the fact that they don't have a clue to what caused my tinnitus or how to treat it. What a bunch of incompetent overpaid jerks!

Why the heck would I want to habituate to something that has caused me so much suffering?

These doctors really should come up with another solution.

 

[threefirefour]

I wish you guys would re-focus your habituation hate to actually doing something truly meaningful, like grassroots efforts for helping organizations like British Tinnitus Association, American Tinnitus Association, Tinnitus Research Initiative...

Just saying.

There's a reason people like us dislike it. I can definitely see why it has so much support, and for a lot of us, the main problem is the attitude towards it here. We see habituation stories all over the success stories section, but we don't consider them success stories. They're more of a tease. And people keep saying to aim for that and keep pretending that should be everyone's endgame, when we have our eyes on the real prize. We want a cure. We don't want to fake it until we make it, not "get used to it", we want it gone, and to us the fact a lot of people here aren't as set on that as us is strange to us.

For your quote most of us would agree, and that's what we want.

A lot of people have these questions, and you put it perfectly. I'm kind of a spearhead of this thought around here, so I want to answer it to the best of my ability, from the source itself.

 

[Markku]

Getting used to it is not the awareness message we're sending.

Check for example the videos we have produced on Facebook:

https://www.facebook.com/TinnitusHub/videos

There's quite a variety there, one of my favorites is "The Unrelenting Noise".

Habituation is not a good awareness message.

But they are not mutually exclusive (habituation continues to occur but it doesn't happen to everyone, and many of those who have habituated would choose to get rid of it completely).

 

[threefirefour]

@Markku you're right that they're not always mutually exclusive, but the idea that habituation should always be the endgame is what we mostly hate, and rightfully so. Habituation is not a good awareness message at all, true. But that's part of why people don't care about tinnitus. Medical institutions and governments won't give funding to tinnitus researchers because "they get used to it, it's not a big problem", and when someone of our own Team goes and says "yeah that's right we get used to it" is just stupid. Not only because they're going against their self interest but it drags us down with them.

I'm glad it's not the message you're sending, but it's the message a lot of the community sure is.

 

[Greg Sacramento]

@threefirefour @Markku Most with tinnitus have 1/10 to 5/10 levels. Those with very severe tinnitus are at levels 9/10 to 10/10. This is a blunt statement, but there's a world of difference between mild, moderate and severe. Most with a high pitch have other medical problems that relate to their tinnitus function.

I wish not to post this again, but I received tinnitus over seven years ago from a syringing of ears procedure. For 3.5 years it was a 10/10. I wasn't able to habituate until it dropped - maybe to 6/10. My perception became non threatening. Then there were days were I didn't think about my tinnitus.

About six months ago, I received 10/10 somatic severe high pitched tinnitus from a dental procedure. Unless I can find the problem and get treatment, I don't stand a chance of it lowering.

I really like Tinnitus Talk Forum. I come here to research and maybe able to offer ideas to some with moderate tinnitus. I will say that it's difficult for me to post. Today my T is not only in my ears, but my head. I'm having severe headaches and neck pain.

Love to all

 

[Mettafort]

Wishing you well Greg. My tinnitus is in my head but it has always been that way. I do get neck pain and very bad headaches at times - different feeling to a typical migraine too.

Sincerely wish for you that it drops down to a more civilized level.

mf

 

[DebInAustralia]

@threefirefour @Markku Most with tinnitus have 1/10 to 5/10 levels. Those with very severe tinnitus are at levels 9/10 to 10/10. This is a blunt statement, but there's a world of difference between mild, moderate and severe. Most with a high pitch have other medical problems that relate to their tinnitus function.

I wish not to post this again, but I received tinnitus over seven years ago from a syringing of ears procedure. For 3.5 years it was a 10/10. I wasn't able to habituate until it dropped - maybe to 6/10. My perception became non threatening. Then there were days were I didn't think about my tinnitus.

About six months ago, I received 10/10 somatic severe high pitched tinnitus from a dental procedure. Unless I can find the problem and get treatment, I don't stand a chance of it lowering.

I really like Tinnitus Talk Forum. I come here to research and maybe able to offer ideas to some with moderate tinnitus. I will say that it's difficult for me to post. Today my T is not only in my ears, but my head. I'm having severe headaches and neck pain.

Love to all

I'm so sorry to hear that your t is much worse.

Where are you located? I heard that prof Susan Shore is undertaking further trials for her device in Michigan next year.

Maybe you might qualify?

I've also been reading posts of people who have suffered ototoxic issues from cipro/levaquin and benefitting from IV NAD (San Diego), which is related to nicotinamide riboside.

 

[brownbear]

I don't think that severe sufferers who are trying to habituate should be belittled. Trying to facilitate ones habituation is a major undertaking involving positive thinking, exercise, meditation, cbt, hobbies, immersion in ones life etc. If you think these sound like a load of nothing then I really don't think you understand what a difficult and painfully slow process this is. I am sure that readers on here who are doing their best to habituate will fully understand what I mean. I would give everything I have to have someone take away my tinnitus, but I don't think that will happen and I don't want to lose any more of my life than I already have from this crap. Everyone wants a cure but what if that cure was like many drugs for severe conditions with nasty side effects. Maybe habituation isn't such a bad medicine to take.

 

[Greg Sacramento]

Thank you @DebInAustralia for your post. I'm located in Northern California, but grow up in a town outside of Boston, where medical treatment including for tinnitus is much better.

I have read about Susan Shore, but I can't travel due to complications of my conditions. I woke up a few hours ago from sleeping during the day to an electrical storm in my head. Sounds comes from my head, but my T also moves to ear to ear or will be in both ears.

I received this new T within hours from dental where pressure was applied to my jaw. I was also bending my neck forward and had muscles spasms in my neck. There's so many muscles, joints and veins within the neck and jaw/mouth. My entire neck hurts going up into my scull, but they can't find the real reason why.

Thank you for your concern, support and comments. When I first got tinnitus years ago, I was able to become non self focus. This time I'm not. It likes having my TV volume on level 22 with a high pitch squeal playing.

This isn't a well worded message as I'm now finding it almost impossible to function even with medication.

Added: Thank you @Mettafort

 

[DebInAustralia]

Thank you @DebInAustralia for your post. I'm located in Northern California, but grow up in a town outside of Boston, where medical treatment including for tinnitus is much better.

I have read about Susan Shore, but I can't travel due to complications of my conditions. I woke up a few hours ago from sleeping during the day to an electrical storm in my head. Sounds comes from my head, but my T also moves to ear to ear or will be in both ears.

I received this new T within hours from dental where pressure was applied to my jaw. I was also bending my neck forward and had muscles spasms in my neck. There's so many muscles, joints and veins within the neck and jaw/mouth. My entire neck hurts going up into my scull, but they can't find the real reason why.

Thank you for your concern, support and comments. When I first got tinnitus years ago, I was able to become non self focus. This time I'm not. It likes having my TV volume on level 22 with a high pitch squeal playing.

This isn't a well worded message as I'm now finding it almost impossible to function even with medication.

Added: Thank you @Mettafort

Would you consider the IV NAD?

 

[Raphael7713]

So what should we do? Until a cure or a good treatment is found we need to try to habituate to it. It doesn't mean we are giving up, we are simply putting up with it until we can hopefully and eventually get treated.

 

[vermillion]

@Gl0w0ut
Do you still want to damage your brain?

 

[Greg Sacramento]

@DebInAustralia IV NAD sounds like an excellent idea. Thank you. I have done a general detox and used Vitamins B & C for, but that is nothing compared to what you suggest.

It should help with my immune system and brain function. Recently, I have only used a sleeping aide that also is used for depression. My biggest anxiety is fear of going to sleep. I'm at a 10 level when I'm awake, but when I do fall asleep, I wake up with an electrical storm in my entire head. It's hard to describe, but it's terrifying.

 

[Kolisar]

@Gl0w0ut , as others have responded, habituation is not the true endgame, and any claims that is it are detrimental to the cause.

That being said, for some of us, that is the best option we have. I have had this my entire life, and a recent spike in volume drove me to this forum. I have attempted to take my life, think about it almost every single day, and were it not for a promise I made to someone very dear to me, I would not be here as I know the mistake I made the last time I tried to end my life, and I know how to correct it.

I am old enough that I am fairly certain that I will not see a cure in my lifetime. My ringing is constant, 24 hours a day, and I even hear it in my dreams, I am unable to escape from it, ever, not even for a single moment. It is almost always in the forefront of my consciousness, and for the few moments it is not, it is still there and I am always aware of it.

Like probably every member of this forum, I want a cure, desperately. If I thought that stabbing out my eardrums would stop the ringing I would do so, I would gladly never hear another sound if it meant that the infernal ringing would cease.

One main reason that there seems to be little interest in finding a cure is probably that the drug companies cannot see how to make money from it. That is why there is little interest in finding cures to may problems, the lack of profit potential.

So, the ENTs, are telling you to habituate because, at this point, is the the best option, especially of the other things they have tried have not worked.

 

[Gl0w0ut]

@Gl0w0ut , as others have responded, habituation is not the true endgame, and any claims that is it are detrimental to the cause.

That being said, for some of us, that is the best option we have. I have had this my entire life, and a recent spike in volume drove me to this forum. I have attempted to take my life, think about it almost every single day, and were it not for a promise I made to someone very dear to me, I would not be here as I know the mistake I made the last time I tried to end my life, and I know how to correct it.

I am old enough that I am fairly certain that I will not see a cure in my lifetime. My ringing is constant, 24 hours a day, and I even hear it in my dreams, I am unable to escape from it, ever, not even for a single moment. It is almost always in the forefront of my consciousness, and for the few moments it is not, it is still there and I am always aware of it.

Like probably every member of this forum, I want a cure, desperately. If I thought that stabbing out my eardrums would stop the ringing I would do so, I would gladly never hear another sound if it meant that the infernal ringing would cease.

One main reason that there seems to be little interest in finding a cure is probably that the drug companies cannot see how to make money from it. That is why there is little interest in finding cures to may problems, the lack of profit potential.

So, the ENTs, are telling you to habituate because, at this point, is the the best option, especially of the other things they have tried have not worked.

It is most likely the result of HFHL, so stem cell therapy might help, although I'm not wealthy enough for it.

 

[attheedgeofscience]

This condition isn't taken seriously by the scientific or medical community already, in large part because it is only an annoyance that people are expected to live with.

I would go a step further and state that tinnitus isn't taken seriously by anyone - be it government, the medical community, or even the tinnitus sufferers themselves. Of course, that isn't just limited to tinnitus - it is true for a lot of medical conditions.

Having said that, the research community has actually shown how much can be achieved with even a severely limited budget during the past year. The Frontiers Research Topic is arguably one of the most successful topics ever launched and will surpass a million views later this year:

http://journal.frontiersin.org/researchtopic

Who knows what accumulated interest of investment ("knowledge") all that early stage research will yield in the future? Incredibly, the success of that project is the result of the work of a very limited number of individuals. Are you one of them?

 

[Greg Sacramento]

Besides all that has been said here as to why tinnitus isn't taken seriously, there's many $$$$$ reasons as well.

First is it's time consuming for GPs and ENTs. It could take months of intellectual input from a group of specialists that is overseen by a GP or ENT. ENTs should be the ones planning and directing to see if anything can improve your situation. If an ENT had a relative with tinnitus, then they would spend the hours needed to see it anything could be done.
Most audiologists are caring, but there's other professionals that could help. That's if a GP or ENT would made the authorization for exam and care advice. Sure, ENTs will order a MRI, because they have practicing rights with the hospital that will perform the test. There's a huge profit margin in MRIs for hospitals.

Second is insurance companies. To them, tinnitus is a condition, not a disease and it's very expensive to treat. Cancer treatment is also expensive, but the cause doesn't need to be known. So standard of the day treatment is given. Granted, it's often hard to find the cause of a person's T, but at least try. Would it make a difference if they did find a person's cause or an issue that is contributing to it. Yes, We think so, because when the cause is known, sometimes there's treatment. Certainly care advice can be given. Besides that, the cause problem could possibility be treated. Somatic tinnitus treatment can sometimes reduce the ringing.

Third is the fear of malpractice by doctors. If they advice chiropractic or PT treatment or whatever and this whatever makes your T worse, then it can turn back on the GP or ENT.

 

[Vincent R]

I have attempted to take my life, think about it almost every single day, and were it not for a promise I made to someone very dear to me, I would not be here as I know the mistake I made the last time I tried to end my life, and I know how to correct it.

In the final analyze, duty matters more than personal pain. Gutting it out until the end is preferable to assemble guilt.

I'm not about to kill myself either, but people in these days live too damn long if you ask me. The old Romans went out when they were sixty or so. You and me can live until we're hundred.

There will be quite a bit for us to endure for the luxury to leave with some peace of mind.

 

[Gl0w0ut]

Well since you don't care dying or damaging your brain and eventually experience dreadful symptoms apart from severe tinnitus, you could take a big risk and try Trobalt. Either you will experience nasty side effects, or you may reduce your tinnitus to barely noticeable levels and live again a happy life. Check the trobalt/Potiga thread. Unfortunately the drug is discontinued from the market but members here may sell you their left-over stock. Who knows?

Thanks for the advice.

 

[Lex]

I honestly find it frustrating that T is one of the few (or only?) conditions for which acceptance [habituation] is considered a success story.

My hair is falling out because of stress, so I visit alopecia forums and support groups. My skin is breaking out a bit as well (from stress too I bet), so I go to skincare forums and support groups too. For alopecia and acne, success stories don't involve acceptance. They involve effective treatments that either cured or significantly improved the situation. Of course, acceptance exists but they fall under inspirational stories. Some people have shaved their heads to embrace baldness, but that's not a success story. Some people have stopped trying to hide their scars and started going bare-faced, but again, that's not a success story. The success stories are the ones who found hair growers, had hair transplants, got dermabrasion, took Accutane, tried fillers ... etc.

So yeah, I get why you are frustrated, @Gl0w0ut. But alopecia and acne get much more medical attention than tinnitus do. So for now, acceptance is the only way we have. Of course, you can refuse to call it a success story even if you ever habituate, because it is not.

 

[Gl0w0ut]

I honestly find it frustrating that T is one of the few (or only?) conditions for which acceptance [habituation] is considered a success story.

My hair is falling out because of stress, so I visit alopecia forums and support groups. My skin is breaking out a bit as well (from stress too I bet), so I go to skincare forums and support groups too. For alopecia and acne, success stories don't involve acceptance. They involve effective treatments that either cured or significantly improved the situation. Of course, acceptance exists but they fall under inspirational stories. Some people have shaved their heads to embrace baldness, but that's not a success story. Some people have stopped trying to hide their scars and started going bare-faced, but again, that's not a success story. The success stories are the ones who found hair growers, had hair transplants, got dermabrasion, took Accutane, tried fillers ... etc.

So yeah, I get why you are frustrated, @Gl0w0ut. But alopecia and acne get much more medical attention than tinnitus do. So for now, acceptance is the only way we have. Of course, you can refuse to call it a success story even if you ever habituate, because it is not.

I'll hang myself befor letting my brain off the hook. I will NEVER accept this condition.

 

[Michael Leigh]

I'll hang myself befor letting my brain off the hook. I will NEVER accept this condition.

I am sorry to this @Gl0w0ut If possible try and get some counselling with a Hearing Therapist. You are still new to tinnitus so don't give up yet.

Michael

 

[Kolisar]

I'll hang myself befor letting my brain off the hook. I will NEVER accept this condition.

That, certainly, is your choice. I do not condone suicide, nor would want you to take that option. But, I have to ask, why does accepting tinnitus and fighting to be rid of it have to be mutually exclusive?

You know I have had tinnitus for a very long time. It still drives me crazy, and I still, on a daily basis, want to end my life because of it. I certainly have not given up trying to find a solution (despite my recent visit to en ENT who, basically, told me that after all these years of having it there is nothing that he could do to help). But, I have also accepted the fact that it may never go away. Accepting that you have this and may always have it is certainly not giving up. I will continue to look for a solution, or even any reduction in volume, but by "accepting" that I may never rid myself of it, for me anyways, frees up some of my mental and emotional energy that is better spent trying to find a solution.

I am probably missing something here, what is it that I am not seeing?

 

[Gl0w0ut]

That, certainly, is your choice. I do not condone suicide, nor would want you to take that option. But, I have to ask, why does accepting tinnitus and fighting to be rid of it have to be mutually exclusive?

You know I have had tinnitus for a very long time. It still drives me crazy, and I still, on a daily basis, want to end my life because of it. I certainly have not given up trying to find a solution (despite my recent visit to en ENT who, basically, told me that after all these years of having it there is nothing that he could do to help). But, I have also accepted the fact that it may never go away. Accepting that you have this and may always have it is certainly not giving up. I will continue to look for a solution, or even any reduction in volume, but by "accepting" that I may never rid myself of it, for me anyways, frees up some of my mental and emotional energy that is better spent trying to find a solution.

I am probably missing something here, what is it that I am not seeing?

Accepting it let's my brain win, telling it that it's ok to ruin my life because it doesn't like a gap in hearing. I won't allow that. My brain's hyperactivity will cease one way or another

 

[Kolisar]

Accepting it let's my brain win, telling it that it's ok to ruin my life because it doesn't like a gap in hearing. I won't allow that. My brain's hyperactivity will cease one way or another

I think I understand what you are saying. I, personally, do not think that accepting the possibility that you may not be rid of tinnitus is letting your brain win. I certainly am not going to stop fighting to be rid of this constant ringing, but I understand your perspective. I just hope that you are able to hold out long enough to find an actual cure and are not driven to just end your suffering.

 

[sanj100]

I think a lot of you might be misunderstanding the purpose of/goal of habituation. It's not "giving up" or "throwing in the towel", or even "putting up with it". It is a process of removing the emotional response to the tinnitus and the hyper focus of it so that you think about it less and so that the sound falls to the back of your consciousness eventually, putting it in the background, and not at the front of your mind. Why wouldn't anyone want that until a proper cure comes along?

I understand why some of you are viewing habituation as "giving up" because you are angry and frustrated with the sound, and understandably so, however, and this is kind of counter intuitive, the more you feel like this and the more angry and frustrated you get, the more you fuel the sound and the more it stays present at the front of your mind. I read a quote that makes sense regarding this "whatever you resist, persists".

I do understand that volume makes a difference. It is generally easier to habituate to a quieter sound than a louder one, but there are people on this forum that have habituated to very loud tinnitus and as a result the perception of the sound has lowered, so they have habituated more, further lowering perception and attention of it (a positive feedback loop).

Just my thoughts.

 

[Bobbie7]

I think a lot of you might be misunderstanding the purpose of/goal of habituation. It's not "giving up" or "throwing in the towel", or even "putting up with it". It is a process of removing the emotional response to the tinnitus and the hyper focus of it so that you think about it less and so that the sound falls to the back of your consciousness eventually, putting it in the background, and not at the front of your mind. Why wouldn't anyone want that until a proper cure comes along?

I understand why some of you are viewing habituation as "giving up" because you are angry and frustrated with the sound, and understandably so, however, and this is kind of counter intuitive, the more you feel like this and the more angry and frustrated you get, the more you fuel the sound and the more it stays present at the front of your mind. I read a quote that makes sense regarding this "whatever you resist, persists".

I do understand that volume makes a difference. It is generally easier to habituate to a quieter sound than a louder one, but there are people on this forum that have habituated to very loud tinnitus and as a result the perception of the sound has lowered, so they have habituated more, further lowering perception and attention of it (a positive feedback loop).

Just my thoughts.

Hi @sanj100 - So eloquently phrased and true. I wish ALL members felt the way you do; the road they travel would be a far smoother one.