I Will Not Live with My Tinnitus
- Thread starter foliefortuna
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brownbear
Member
- Sep 24, 2016
- 272
- Tinnitus Since
- July 2016
- Cause of Tinnitus
- Sudden sensorineural hearing loss ? cochlear hydrops
Maybe I'm not clear enough? Let's give it another go.
What they observe is patients who state "I have not habituated" or "I am not able to habituate". It's not an observation on Tinnitus (the "subjective phenomenon" that you are talking about). It's a simple tally of numbers after interviewing patients: there is no subjective reading of it. Either the patient says they are habituated, or they state they aren't. Then the data is recorded, and published. You can distrust their answers or not like them, but they are what they are. They have no incentive to lie.
I'm for habituation as much as the next guy, but hey I think we should all donate to research like ATA and scientific research devoted for a cure for Sensorineural hearing loss.
Of course you don't have to martyr yourself to do so.
I appreciate you wanting me to get better (I never doubted it), but this particular mischaracterization is actually whittling away the chances I have to get better, if it turned out I was part of the set who is unable to (at 2 years in, I haven't lost hope, but the probabilities are getting lower and lower by the day).
This is distressful for the actual set of people who are not able to habituate (per scientific tally), as they feel you are taking away their chances at a real cure. You mean well I'm sure, but to a patient who is not able to habituate, it feels like you are giving up on them.
So it is their subjective statement is it not?
They very well might not be habituated after the treatment, does not mean they won't habituate at all.
Also their interpretation of habituation can vary which is ... subjective.
And again it is a ''observation'' taken out of a small clinical trial, there are ''observations'' from other studies that state as many as 98% of people with tinnitus do habituate to some extent. So which one is the ''fact'' here?
Why would habituation block the attention or funding that leads to a cure?
Seems like a silly statement, with a prevalence as wide as it is the only thing preventing a cure is the scientific limitations as to understanding the inner workings of the brain, funding won't (directly) change that. As of late tinnitus is still considered as a problem of the ear which it obviously in most cases is not.
The task is simply to complex for scientists at the moment not a question of unwillingness to research. However I'm all for more funding towards research.
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I am not fully habituated, but it's very helpful to hear from others who have done so and/or those on a similar path as myself. If I don't agree with every single thing another person thinks, it doesn't matter, it's the big picture that's important - and this site would be better if we all, myself included, realized that.
brownbear
Member
- Sep 24, 2016
- 272
- Tinnitus Since
- July 2016
- Cause of Tinnitus
- Sudden sensorineural hearing loss ? cochlear hydrops
Thanks for being reasonable and digesting his comments. Hope you get better soon too.
Clearly, if you're not happy with patients' reporting in a study, you can question whether they know what to answer.
I'm afraid this is going nowhere, so I'll leave you to your thoughts. Good luck!
I don't have any feelings to their reporting, as I said I don't blindly go by these studies and always keep some leeway for unaccounted variables, this being one of many.
And indeed this is going nowhere.
Thanks for your message @brownbear - I know you mean well and I'm not offended in any way by your statements. No apologies needed.
I haven't given up hope, neither for habituation (in spite of being cognizant of the dwindling probability) nor for a cure (which has the nice property of having an increasing probability due to the fact that we can't stop progress, but that may not be enough to win the race against the (my) clock).
I do have some concerns about the messaging, and feel like it is somewhat responsible for the "state of affairs" (docs telling patients "go home, you'll get used to it" without being very diligent about looking for causes and possible treatments), and welcome the opportunity for a discussion with you around it.
I just read this, I did not see it before my previous comment.
Greg I just wanted to say that I understand what you are saying here but you can't put a time limit on habituation. Some need 3 months someone else might need 4 years or even more.
Who is to say how long it will take, that is also what I mean by the subjective part, this is just very personal.
You will habituate, I am convinced you will, in fact I think most of the people on TT will eventually.
Keep the faith man.
- Feb 17, 2017
- 10,400
- Tinnitus Since
- February, 2017
- Cause of Tinnitus
- Acoustic Trauma
Check out all of the studies in
https://www.tinnitustalk.com/threads/spontaneous-recovery-stats-many-recover-3-studies.21441/
That thread is six pages long, and there are posts that link and quote different studies on I believe all but one of those six pages. Like I mentioned earlier, there are a number of studies about seniors and tinnitus.
I see that you got your T in November. There is a good chance that eventually your T will fade (especially if it had already faded compared to how it sounded at the start of December).
This critique might apply to some of the studies, but for many of the studies the questions that the participants had to answer make it clear whether or not those people think their T sounds quieter.
The above might be true for studies of people who got T as a result of an acoustic trauma. Someone with a different cause of T might expect to experience a different outcome. However, the studies of seniors include people who got T as a result of all sorts of causes.
The whole point of statistics is that when the sample size is large enough, we can extrapolate the sample results to the population being studied. So the studies of seniors (there might be other studies that had looked at a similar population with unspecified cause of T) establish a lower bound on the probability of recovery for everyone. And people who got their T as a result of an acoustic trauma, can use the corresponding studies to get a sense of what they can expect.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
Well... a lot of heated debate in this thread ‒ and ‒ with some arguments better presented than others... But rather than attempting to throw in my own weight, I'd rather make a more distanced observation: if some of you intend to make TinnitusTalk your second home (so-to-speak), then at least consider signing up with [USERGROUP=14]@Team Awareness[/USERGROUP] ‒ there is plenty of "trophy hunting" to immerse yourselves in. As an example, the research by Prof. Shore is worth following up on. And so... in that regard, has anyone from [USERGROUP=14]@Team Awareness[/USERGROUP] actually written her an email and basically said: "Hey... we are the world's largest tinnitus community, would you mind...". And if not, why not? The following thread was an excellent example of liaison building:
www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-petition-to-the-ata.6896
There are ways to spend your energy more wisely than arguing habituation for the 97th time...
www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-petition-to-the-ata.6896
There are ways to spend your energy more wisely than arguing habituation for the 97th time...
tiniturtle
Member
I admittedly haven't read all of the responses, but TMJ is treatable, and your tinnitus could go away. Hang in there.
brownbear
Member
- Sep 24, 2016
- 272
- Tinnitus Since
- July 2016
- Cause of Tinnitus
- Sudden sensorineural hearing loss ? cochlear hydrops
Hi @GregCA. Firstly I want to say that I don't come at any of this from a TRT etc standpoint. My personal view is that sound therapies at best offer little more than a psychological crutch while people pass through the normal habituation process, and at worst might delay it. I am a fan of CBT/relaxation/mindfulness techniques though. I think people clearly fall into different camps with this and they hold their views like a religion which is hard to shake. I try to keep myself outside of this and prefer to try to tailor treatments to what seems to work best for an individual.
Although I have given up on my own tinnitus I haven't given up on other peoples and am happy to search for a reversible cause for as long as the patient wants, as long as I don't feel my investigations are causing further psychological harm through disappointment. I fully agree that an immense level of harm can be caused early on by ignorant GPs and ENTs. Now when I first see a patient distressed by T (which isn't very often I should add - most don't care) I search hard for a cause and I try VERY hard to install a sense of hope regarding habituation.
I'm was surprised to see you said that you weren't afraid you wouldn't habituate. For me this gets to the crux of my concerns. If I was told with certainty that I would be happily habituated in 2025, then I think I would clam down a lot more and probably habituate in 2018! I hate the uncertainty. I also would ask you to question whether or not you will habituate. You have bravely mentioned before how low you were initially and you may be finding it difficult to see progress in yourself. I wouldn't worry about the fact that you are 2 years in. Do you think that if your T started now, and you had your current level of anxiety/depression etc that you might give yourself better odds of habituating well? I think I would personally. Because most of us come into contact with such clunky healthcare systems many people don't start any treatment or road to recovery for ages so I wouldn't put a timeline on it. Mindfulness helps you to exist in this very moment rather than what has gone before or what might come, observing our thoughts as merely thoughts. One is encouraged to 'stand by the riverbank of our thought, rather than being swept away by them'. Sounds like BS I know, but has helped me immensely.
I don't believe that trying to help yourself to habituate and searching for causes is mutually exclusive. I do believe though that for as long as T holds such strong negative emotions for you then you will find it hard to habituate. This can necessitate suspending our normal logical thought processes about how much we hate it and want it gone. I think the more intelligent you are the harder this might be, maybe. I strongly believe that the moment the sound means nothing to you, you will stop perceiving it. How you get there is difficult but I think you need a different strategy to your current one (and probably so do I). I accept your point about diverting attention from proper research, and I truly hope better solutions are found. I suspect they are most likely to be pharma solutions. I just wonder whether we can afford to wait. Many problems are not well understood. Philosophers often debate the 'mind-body problem' and we still don't have good explanations regarding this. Many philosophers believe that a human understanding the mind body problems is as likely as a dog understanding the theory of relativity. I hope T isn't like that but I personally need a solution now so I can get on with my life, and for me it's going to be habituation.
Wow that was a lot of rambling crap. Good luck my friend.
Although I have given up on my own tinnitus I haven't given up on other peoples and am happy to search for a reversible cause for as long as the patient wants, as long as I don't feel my investigations are causing further psychological harm through disappointment. I fully agree that an immense level of harm can be caused early on by ignorant GPs and ENTs. Now when I first see a patient distressed by T (which isn't very often I should add - most don't care) I search hard for a cause and I try VERY hard to install a sense of hope regarding habituation.
I'm was surprised to see you said that you weren't afraid you wouldn't habituate. For me this gets to the crux of my concerns. If I was told with certainty that I would be happily habituated in 2025, then I think I would clam down a lot more and probably habituate in 2018! I hate the uncertainty. I also would ask you to question whether or not you will habituate. You have bravely mentioned before how low you were initially and you may be finding it difficult to see progress in yourself. I wouldn't worry about the fact that you are 2 years in. Do you think that if your T started now, and you had your current level of anxiety/depression etc that you might give yourself better odds of habituating well? I think I would personally. Because most of us come into contact with such clunky healthcare systems many people don't start any treatment or road to recovery for ages so I wouldn't put a timeline on it. Mindfulness helps you to exist in this very moment rather than what has gone before or what might come, observing our thoughts as merely thoughts. One is encouraged to 'stand by the riverbank of our thought, rather than being swept away by them'. Sounds like BS I know, but has helped me immensely.
I don't believe that trying to help yourself to habituate and searching for causes is mutually exclusive. I do believe though that for as long as T holds such strong negative emotions for you then you will find it hard to habituate. This can necessitate suspending our normal logical thought processes about how much we hate it and want it gone. I think the more intelligent you are the harder this might be, maybe. I strongly believe that the moment the sound means nothing to you, you will stop perceiving it. How you get there is difficult but I think you need a different strategy to your current one (and probably so do I). I accept your point about diverting attention from proper research, and I truly hope better solutions are found. I suspect they are most likely to be pharma solutions. I just wonder whether we can afford to wait. Many problems are not well understood. Philosophers often debate the 'mind-body problem' and we still don't have good explanations regarding this. Many philosophers believe that a human understanding the mind body problems is as likely as a dog understanding the theory of relativity. I hope T isn't like that but I personally need a solution now so I can get on with my life, and for me it's going to be habituation.
Wow that was a lot of rambling crap. Good luck my friend.
Hello @brownbear - thank you for your message.
I urge you to take a look at research around sound therapy, in particular Windowed White Noise. Some people can benefit greatly from it, in terms of volume reduction, not just psy help. Like anything, it's not a slam dunk and clearly doesn't work on everyone. I think one of the biggest issues with these types of therapies is patient compliance. These therapies are grueling: listen to something for 4-6 hours a day may not always be possible even if you have the will power.
As a patient (maybe this isn't common, but I'll give you my personal feeling about it), when I first go to the GP/ENT, I want to have hope that this can be fixed and that the doctor is going to be "on my team" to do whatever s/he can to find a solution. This is right after onset, and any talks about habituation are only going to drive my anxiety through the roof. I will perceive it as being given up on because it is discussed so early in the process.
In terms of timing, I would prefer not mention that quite yet. Instead, what would have worked for me is: "ok, this is the diagnosis flowchart we're going to follow: first we need to find out what is causing this, because T is just a symptom" followed by "it looks like you have <insert diagnosis here>, and for this, there is no miracle cure, but some things work for some people, so I suggest a plan where we're going to try them one after the other until we find something that works for you. Here's the list." - and ONLY after we've exhausted the treatments (which is months/years after onset), I want to hear about habituation: "I'm afraid we've tried quite a few things. How are you feeling about it now after 2 years? Do you need any help to sleep/work/etc? We haven't been successful with the current therapies, so we'll work together on a plan to <<hang on>> until a cure is found and make it as comfortable and productive for you. There is some research going on and here are the 3 promising avenues that we should keep an eye on for you: <list 3 research vectors that you feel can help me and a time frame>. In the mean time, there are some psy techniques that can help you hang in in there (talk about CBT, mindfulness, etc). We should sync up every 6-12 months to see what's new and what we can do next. I'll update you on the state of the research while you update me on your management of your condition."
No argument there.
This is probably true, but it's also a "cop out" to have an easy way to blame the patient in case habituation isn't happening.
A lot of psy methods consist of actually telling yourself (sometimes out loud) sentences that you want to believe, like "I will get better", "I am strong", "I can do this". This is a very well known motivational technique. We are brainwashing ourselves into thinking "we're doing good". That seems perhaps like a good idea, until we need to provide feedback to others who will assess how we're doing.
When we go to the doctor who coached us about all this "positive thinking", he will prompt us about progress. "How are you doing?" he asks. If I follow my training and answer positively ("I am doing great!") he will believe I'm doing great and chalk it up as a success in habituation. If I answer negatively ("not really good, doc"), he'll tell me it's because I'm "holding too many strong negative emotions". If it sounds familiar it's because I quoted you. I don't mean this to be confrontational: I just want to show that there is no good way to report non-habituation and be tallied as such.
Some people are so brainwashed that they are even in denial that lack of habituation is a possible outcome. We see it in this very thread, just a few messages above this one. They first claim that scientific research is unreliable, then that it's a subjective assessment, then that patients aren't reliable when they report what they feel. The cognitive dissonance is really hard to recognize and address, and I think the church of "positive thinking" is, to a limited extent, to blame for it.
Anyone with a cartesian mind will be unable to suspend logical thought process: you can't lie to brain reasoning. You can repeat yourself "1+1=3" all you want, your brain is going to see through it every single time. I admit that with time and brainwashing techniques, one's brain could be rewired to think that "1+1=3" is the new truth: I don't need convincing that it's possible, since I can witness it myself from the prose written in this forum. I am happy that this kind of process works for some, as it provides some kind of relief to them, not unlike religion when it comes to touching on difficult subjects such as death. I can't hide that I wish I was part of the believers: it makes life much easier! I'm quite jealous in that respect.
I agree with that. It is in line with my observation above. But I'd refrain from mentioning this too loudly as it can come off as offensive. The same observation was provided to me when I consulted with a Tinnitus expert (an actual doctor, not the kind of experts we find in online forums) in San Francisco.
Maybe, but I'm not sure our bodies can always rewire ourselves to that state. I'm thinking of people who suffer from chronic pain (for decades). Do you think that "the moment the [pain] means nothing to you, you will stop perceiving it" applies to them too?
That "crap" was appreciated. Hang in there, and good luck to you too!
brownbear
Member
- Sep 24, 2016
- 272
- Tinnitus Since
- July 2016
- Cause of Tinnitus
- Sudden sensorineural hearing loss ? cochlear hydrops
@GregCA. Thanks for responding. Lots of good points, some I agree with more than others. I would genuinely like to get into these things in more detail but I expect you will be a step ahead of me most of the time. I can already feel some aspects of my 'religion' being rattled, so in the interests of self-preservation I'm afraid I'm going to bow out. I'm sorry to say that my darkest times went quite beyond suicidal ideation and I really can't allow myself to get back into this in much detail, for my family as much as for myself. Sorry not to take it any further. Hope you understand. Best wishes.
Totally cool, @brownbear - you gotta do what you gotta do! I'm happy that you found a path of hope, and I definitely don't want to steer you away from it. Good luck and keep us posted about your journey: you have one of the most interesting accounts for a variety of reasons, and I'd love to hear more updates on your progress, if it's not too much to ask.
Cheers!
brownbear
Member
- Sep 24, 2016
- 272
- Tinnitus Since
- July 2016
- Cause of Tinnitus
- Sudden sensorineural hearing loss ? cochlear hydrops
- Oct 2, 2017
- 419
- Tinnitus Since
- 09/2017
- Cause of Tinnitus
- Years of excessively loud headphone use
- Jan 27, 2018
- 79
- 23
- Tinnitus Since
- March 2017
- Cause of Tinnitus
- TMJ Disorder
I have a different tinnitus sound in both ears. One is fairly quiet, like a whisper. The other is more like the hum of a refrigerator.
Well I've had this crap for 42 years so it goes to show you can go into hibernation if you so choose. I''m not sure when I decided to hibernate however most of the time, I just focus hard on something I like and let the damn ringing go. It hasn't whupped me yet and I'll be dayuuummmm if I let it whup me now. I'm only 67 years old so I figure to have at least another good 30 years or so before I kick the bucket. Don't let this crap whup ya young Lady! Be strong and focus on exercise, fun hobbies, and anything else to keep your mind occupied on the positive. Hopefully soon you will be hibernating and relaxing as best as you can.
- Oct 2, 2017
- 419
- Tinnitus Since
- 09/2017
- Cause of Tinnitus
- Years of excessively loud headphone use
If it is quite mild, then that is something to easily get use to since it is easily drowned out. It'll get better with time.
- Jan 27, 2018
- 79
- 23
- Tinnitus Since
- March 2017
- Cause of Tinnitus
- TMJ Disorder
One is mild, the other one can be heard over very easilly with a normal amount of noise. I can never lay down and relax.
- Oct 2, 2017
- 419
- Tinnitus Since
- 09/2017
- Cause of Tinnitus
- Years of excessively loud headphone use
Very untrue when it comes being able to relax. Tinnitus is very bothersome to people which in turn heightens anxiety and possibly even depression. Which is what is keeping you from relaxing. Always focusing on it and having a negative response to your T can increase anxiety and this constant hyperactive, uneasy feeling.
Being able to stop reacting to Tinnitus not an easy thing to do. However it can be done.
Its very easy to have a negative outlook on T. Don't listen to people who try to force negativity down your throat about this issue because all it will do is feed into fear. Ultimately anxiety.
An important thing to understand with T is that, this is life now. However, that is not a negative statement. I got Tinnitus and Hyperacusis when I was 16 and my world was destroyed. I was basically disabled due to Hyperacusis. And my non understand and domestically abusive family was not helping at all. So I said to myself, I can either allow this to consume me until my end or bring my life back together. Which I am still in the process of doing. However, this is my life now. Being hindered from loud places, earplugs handy and at the ready, never being able to using headphones again. But that doesn't mean I can't be happy. There are plenty of people in this world who suffer from much more severe problems than you or I do, and they are the most bubbly and outgoing people you'll ever meet.
What I want you to take from this is that, Tinnitus is not something that you should allow to ruin your life. I completely understand how bothersome it is, as does everyone else on this forum. But its important to accept it and not allow it to consume you. Its important to enjoy life, even with a wee ring in your ear.
And hey, the great thing is, is that it can go away on its own.
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