Things People Say When You Tell Them You Have Tinnitus

LOL. I imagine that if it wasn’t loud it wouldn’t be a problem either. Unfortunately I 99% don’t get to have low tinnitus moments, so less screechy is as good as it gets.

 

A lot of people claim to have tinnitus. Not that I don’t believe they haven’t experienced it or have a very very mild case, but not all tinnitus is the same. Just because someone’s has had tinnitus for a week, doesn’t compare to my moderate/severe tinnitus I’ve had almost a year. So I’m glad others experienced something so minor they’ve never had to mention it except for when I bring mine up, but this is a whole different ballgame.

 

Same here. I can relate. Mine is pretty much loud 24/7. Although for some reason it's quiet for like the first 15 minutes when I wake up, not sure what that's all about. I can hear it but it's low enough to where it doesn't bother me.

 

You apparently didn’t really read what I wrote, or can’t understand that I DO have severe tinnitus. Why do I need to explain what I experience daily? We are not all the same. I don’t claim to be habituated. I have no idea what that means. It’s just an internet word to me. I’ve just had far worse things than tinnitus happen to me to give me a little perspective. It sucks, but on the world of maladies and injuries, consider yourself extremely lucky to just have tinnitus.

 

I don't care about what those without tinnitus have to say about tinnitus. They are ignorants.

 

Same for me, when I first wake up and lie in bed I can barely hear it even when I listen for it. Then it’s like my brain fully calibrates and I’m back in hell.

 

Man isn't it the best ever. I just lie there and try not to wake up lol. I think it has something to do once you're fully awake, the neurons must start firing more.

 

I know what you mean, there are worse things than severe tinnitus (looking at you ALS ). That being said, I'd feel far luckier if I didn't have severe tinnitus.

I mean can you imagine just having normal person tinnitus? Then I'd feel lucky. A friend of mine, a very kind-hearted woman, has normal person tinnitus and told me how it's gotten so bad that she now has to put on a fan when she goes to sleep. It seems as impossible to me that a bit of background noise could mitigate tinnitus as that nothing on earth can be done for me is to her. Sigh.

 

Mine is just the opposite. My tinnitus is always at its most extreme when I first awaken. Then it gradually diminishes over the day (usually).

 

TFW you meet your bellend past self from over 15 years ago, but he looks 20 years older than you do now.

▲ Paradoxical.

∴ Poiniency of @tpj's question remains to be satisfied.

You hope for the emergence of an effective treatment, for a "severe" form of a condition, that causes you no distress and has no bearing on your life?

I suppose you also frequent Shingles support forums and keep hoping to see a sign of a cure for your dormant herpes zoster?

No, you clearly don't need a cure @Mattv. In fact, I would be worried that if you were given a cure, you would be putting your internet support forum tough-guy status at risk. You have earned such admiration here. We all look up to you in awe. Your mental resilience is a sight to behold.

Absolutely not, I won't hear of it. I solemnly vow, that should I ever find my self in possession of a cure, I shall withold it from you. And I ask that every other member of Tinnitus Talk who recognises @Mattv's awesomeness, please do the same.

To everyone who isn't @Mattv:

Where would we start with someone as ignorant as this?

Better question is, what would be the point even? We get the same dense people under different names, phrasing a variation of the same dense question at least once a month.

There's probably a thousand threads on Tinnitus Talk clarifying this by now. But these same NPCs cannot be bothered to research just how dull and repetitive their positions are. They genuinely believe they've posed a unique and profound question.

To @Mattv:

For starters, @tpj never drew a comparison between Cancer and Mental Health. So congrats on the creation of that utterly random brain-fart of a strawman.

Secondly. Let me dumb this down so much that even someone who would create an utterly random brain-fart of a strawman, would understand.

Most people with the power to allocate significant funding towards Tinnitus research, do not have Tinnitus themselves. They rely on us, the sufferers, to report levels of distress to people in the field of medicine, and gauge from those reports: the level of of priority for funding and subsequent treatment, our condition takes.

Simple question. If you have people claiming to suffer the severest form of an illness and be largely unaffected by it? What level of urgency do you think that illness deserves for research, funding and treatment?

Which brings us full circle. Why are you even here?

Why don't you do all the amazing people who really are suffering with severe and catastrophic tinnitus - yet contribute positively to our community and work hard every day to push for a treatment- a favour; go live your amazing life, and stop telling people you're a tinnitus sufferer (or should that be a "tinnitus liver"...).

Because the deleterious effects of tinnitus are subject to perspective. Just like the effects of AIDS and MND...

Your ignorance knows no limit.

Firstly, yes, I consider myself so very lucky to have been robbed of my youth and tortured by severe reactive tinnitus for 14 years. It could have been so much worse... blah blah blah, [something about cancer]. Crazy thing, but given the choice, I would rather have lived the best years of my life and died in my 30's. So you can shove your cancer equivalencies up your @*/%.

Secondly, you realise the pathology of tinnitus, like that of Alzheimer's, is that it increases the incidence of additional health problems in the sufferer. It's not like one shitty life event shields you from a second, third or fourth.

Thirdly, additional health problems do not diminish the negative effects of a prior health problem.

Or maybe...

Physics...



...in @Mattv's world:



Physics in reality:



Conclusion:



Next time you see something like this ▲ at the top of a page of search results for tinnitus, remember to say a big thank you to people like @cruise and @Mattv.

 

Applied to tinnitus, all that tells us is that it's horrible even in mild/moderate cases.

But it doesn't change the reality. A case of Asthma isn't going to take priority over Pulmonary fibrosis for a lung transplant.

People can keep trying to muddy the waters all they like. A paper cut is a paper cut, a severed limb is a severed limb. There will always be outliers, but the vast majority of cases are very straight forward. If you're suffering badly after more than two or three years (the point at which tinnitus is no longer a shock to the system) you are probably in the severe category.

All newcomers think they're severe. Anyone who's been around a while knows that. But beyond a certain point the effects on the individual become quite uniform. Mild/moderate cases function well, severe/catastrophic cases don't.

My own life is testament to that fact.

No one is searching for sympathy.

What some of us are aiming to do: is expose the people who claim to be living normally with severe tinnitus, for the liars they are, so that we can prevent them from continuing to damage our credibility, and further aid the successes of psychotherapy in claiming the lion's share of funding for our illness.

Which is why I cannot wait for the day objective measurement becomes commonplace.

At this point, I'm so fed up of the gaslighters, that I'm no longer able to tell what will be sweeter:

• the overdue treatment that brings about a reduction in tinnitus
• or the ability to tell the dollar-store Chuck Norrises getting uppity, to simmer down until they can provide some visual evidence of their "superloud" head noise.

 

The real problem is that tinnitus is typically not a constant. When I first got mine it was LOUD! I can't even communicate how loud it was. I joined The Hemlock Society and was seriously thinking of killing myself. The methods at the time were really lousy though. Since then it has gone up, almost disappeared, and everything in between. Worse, it goes from one ear to the other to both and the frequency changes. The very high "screeeech" is the worst.

I have very high LDL cholesterol, a heart issue and high blood pressure, along w/ tinnitus and kidneys in Stage 3 of only 40%. There's more issues too. I've been to tinnitus support groups, and invariably there were 1 or 2 people who had attempted suicide, it didn't work, and now they had all sorts of seriously bad health conditions from that AND the tinnitus. The successful ones we have no data on because they're like, dead.

So it can be a very, very serious health problem for many, and one that changes our lives forever. My whole life is about managing my tinnitus now, even though it does what it wants to anyway. It's an awful condition, and the worst thing that has ever happened to me. And trust me, almost no one in the medical field understands this. Now I have to switch meds for my cholesterol issue. Left alone at its current level it will cause a heart attack or stroke. I told my doctor that I would do the research on the new meds, not her. I'm the one who has tinnitus. I'd truthfully prefer the things that could happen to me that I just mentioned rather than have my tinnitus increase. So whether it is serious or not depends on a lot of things.

 

Well that sounds like coming from someone who has never had tinnitus.

Incidentally my husband has tinnitus very badly. He can hear it over everything. His mind just tunes it out. I don’t know how he has that gift but he does.

I actually have several friends that have tinnitus that they can hear over everything. They’re not paying attention to their tinnitus until I bring it up and then they’re like geez, thanks, I notice it now. I do think that it’s a continuum of how bothered people get by it.

I would agree that volume has a huge impact on people‘s ability to cope. But I know people with really loud tinnitus who seem to cope fine. I’m not one of them. I’m an awe of those who do cope.

 

You are obviously very passionate about this subject, how is the priority for tinnitus research established or the priority among all competing medical conditions? Is this forum actually a significant source of information for research grant requests or decisions? If the answer is yes, then how do research scientists extract useful information from the 500,000 posts here? If not, what is an effective plan to effect the allocation of research dollars, what can actually generate the focus that you seek?

The top actionable strategy cannot possibly be to suppress habituation threads on Tinnitus Talk.

There are corporations, government agencies, universities, private donors, lobbyists, untold politics and influence peddling, ROI calculations, risk assessments, etc. I have not seen a single post or questions from any of these entities in the time that I have been here.

How do you suggest that Tinnitus Talk be able to help people with the available techniques to get better where it is possible and still be able to keep those who allocate research dollars sensitive to the needs of the rest? It has to be both, suspending all help on the assumption of a faster cure is not an acceptable way to handle any medical condition. Extending suffering of the 98% here for a faster cure for the 2% club is not a good plan. Not everybody who comes here, seeks help, gets it and reports improvement is a liar as you suggest. I know that you are frustrated but tuning out those more fortunate than you and damaging others chances at a similar outcome is not going to balance the scales for those of us who have drawn a shitty hand in the medical condition poker game.

You seek to harm 98% of those who come here for help every month to try to get help for the 2%. Why is that?

George

 

By forming a consensus: That tinnitus is a progressive and in its severest form, deadly condition; no different from FFI (except in its prevalence).

It doesn't have to compete with other medical conditions. That's all in your head.

It only has to take priority over:

• Friendship Benches in Zimbabwe (£700,000)

• Studies into the Flatulence of Colombian Cattle (£15 million)

• Tuscan goats being transported to Afghanistan (£4 million)

• Rich and corrupt Chinese Governments receiving aid (£82 million)

• Historical Grudges (£800 billion)

and

• The Ethiopian "Spice Girls" (£44 million)

You're confusing the issue. No one said anything about scientific researchers visiting the forum to extract data.

(Although, if me and @Toby1972 can do it, there's no reason why they wouldn't be able if they wanted to.)

What Tinnitus Talk is, is the growing foundation and forming bedrock of our community. It may not have reached all who suffer with our affliction (yet), but it is the biggest and best representative of us and our affliction that has ever existed, and thus the narrative that pervades it is highly influential in how our condition is perceived by a huge number of people (on at least two continents), be they: member, researcher, sufferer, philanthropist, politician, reporter, medical expert or common man in the street.

A tinnitus sufferer alone can be persuaded to believe their disablement by a noise in their head is irrational. A tinnitus sufferer united with his or her fellow sufferers can steadfastly assert that their disablement is perfectly natural, in the same way a sufferer of paralysis can.

This is the power of the collective. And it can work both ways (both in and against our favour; dependent on what we vote to project). Not just through our words on the forum, but how we deem to rationalise our circumstances after visiting the forum, and choose to advertise them in the real world as a result.

Likewise, future prospective researchers, students and everyday people, who might want to learn more about tinnitus. They find our group. If 7 in every 10 posts says tinnitus is a highly volatile, often lethal condition; they come away from their 20 minute research understanding that.

Alternatively, if 7 in every 10 posts say tinnitus is only lethal for 0.0035% of sufferers (stats you published), they come away with that impression burned into their minds forever and conclude that tinnitus is not a condition worth trying to solve anytime soon.

▲ This could persuade people who might otherwise have gone on to do brilliant research in the field of tinnitus, that it's not even worth it.

It's not, and I've never proposed such a thing. I have in fact, actively shared on my own experience of habituation, on many occasions.

Why would I knock it?

It's the thin string keeping me alive until the day an actual treatment emerges, and I cling to it in the hope that it doesn't break before then.

That's crazy, because I saw Doris Buffett knocking around on r/neuropathy all the time before she did this ▼

Philanthropist offers $450,000 challenge for Hannah's Hope fund (timesunion.com)

Why do you equate not underplaying the seismic impact this condition has on all who experience it, with declining to offer help and advice to newcomers? Is a better question.

This is a strawman George, and proves you do not do your homework before challenging a person and their position.

Much like the first time we spoke and you assumed I was suicidal because I was posting in the Suicidal thread. You have dedicated little or no time to learning anything about me.

Just a brief sweep through my post history shows that I routinely help newcomers and veterans alike. I advise on supplements and behaviour that will reduce spikes and often reassure them that they will stabilise.

Believe it or not, you can do all this without minimising the condition.

Another strawman (or inability to read).

Never claimed improvement was a lie.

What I said was: people who claim to have severe/catastrophic tinnitus and are unaffected by it, are liars.

But you're right in that I may be wrong to tar all people like @Mattv with the same brush. Some of them are just downright delusional.

"damaging" other peoples chances? By?

• Letting them know how serious this illness is?
• Making it clear that not preventing further damage as a priority will lead to an existence no nightmare could do justice?
• Broadcasting to non-sufferers that tinnitus is not something you ever want to live with or get in the first place?
• Challenging the gaslighters, psychotherapy shills and belittlers, so that we can all have a working treatment more quickly?

If all that is "damaging", then by all means, consider me Perses.

Also, please do not compare yourself to me, patronise me, or presume to understand my motives. For starters you clearly know nothing about me or my life (despite the ease of which you could learn about it), demonstrated time and again by our few interactions.

You preach acceptance of an illness you developed in your 60s (the twilight years of your life) and have terminal cancer. This makes it far easier to say "ho-hum, tinnitus aint so bad, guess we could be waiting on that cure for a while". You've mentioned you had a good career as an engineer. You also frequently raise the loss of your wife and friends as an equivalent for the suffering people on this forum are going through, but never show gratitude for the fact that at least you had a wife, a career and friends.

The thousands of newcomers developing tinnitus are now getting younger and younger (just like myself). Cut down in their prime, they will likely never get to have that experience of being in a happy marriage with a good career and meaningful friendships (or hold down any relationship or job at all, for that matter). This makes acceptance far less easy, and dismissal far more insulting.

No George, you are nothing like me. We share a condition, but the toll it has had, and will continue to take, on our lives, couldn't be more different. That's not perspective, that's reality.

And this is it, right here.

You frequently push this narrative of the 2% club, which you've formerly referred to as the 0.1% and 1% club (when did it increase? and how many more times do you think it will?), a figure you've pulled from your @*/% and self-confirmed is the official tally for those of us here being killed by the disease, and those of us not yet on that slippery slope.

You also seem to think Tinnitus Talk's demographic is representative of the universal number of people for whom tinnitus is a big problem, throughout the world, while never bothering to take into account the fact that:

• there are sufferers that don't have an adequate grasp of English
• there are sufferers that aren't computer literate
• there are sufferers that don't have access to the internet

Additionally your use of the figures for deflating numbers attributed to problematic cases, also ignores the fact that:

• incidence of tinnitus are increasing steadily
• "success stories" and non-severe cases are not static

Funny thing. Tinnitus is the number one military service related disability. And yet, how many ex-servicemen have you spoken to or even seen on Tinnitus Talk?

No George, it's you who is doing the harm, with your psychobabble, bullshit statistics, insulting threads and ultimate diminishing of an illness that has wrecked countless lives, and will continue to wreck even more, if the current staus quo is maintained.

I seriously suggest you start figuring out another way to "help".

 

The thing with tinnitus is this: no two people deal with the same tinnitus. Our reactions and the impact it has had on our lives is also different. There is no one size fits all, when it comes to dealing with this condition. Some are blessed that their tinnitus might come down and reduce in intensity. While others (like myself) don't have that, it's intense and hell level all day long.

All of us are dealing with tinnitus, but the tinnitus can vary in each of our situations. Being mindful and being understanding is what we need. Some might be able to go out and find distractions from their tinnitus. Some might not, we need to respect both.

This is a support forum, let's keep on supporting others. We are all dealing with the same issue here.

 

May I ask how things changed for you? Are you still working out and eating healthy? Do you experience anxiety?

Thank you in advance for reading this and perhaps answering I am really trying to learn how tinnitus affects different people. I understand everyone's different but knowing more about others' experience with tinnitus gives me some peace of mind. I just love to learn. Thank you again.

 

I am no longer lifting weights because my ENT said to stay off them for a while. My tinnitus is caused by an acoustic trauma from 4 months ago, so not sure of his logic but I am taking his word for it. I have been walking 4 miles 2 to 3 times a week, I would like to run but going to ask him about it before doing so.

As far as anxiety, yes I have it now, but never had it before in my life. I used to be one of the most active people I knew, now I just kind of stay home and relax.

 

Too real.

 

Interesting. How does your husband perceive his tinnitus; is the ringing stable; confined to one ear; both; central; can/does he at any time get a sense of being able to 'feel' his tinnitus ringing?

Whenever mine settles into stable mode, I find my mind automatically accommodates it and I can be quite relaxed. But it's capricious and when it goes into palpable off-the-charts hyperactive rattle-snake-tail angle-grinder anvil bashing screechy train track mode it's impossible (for me at least) to ignore it, or 'tune out'.

This will change everything.

 

It really will. I wish all current efforts on tinnitus R&D were heavily focused on finding ways to hear/detect/measure tinnitus. Treatments can wait as far as I’m concern. Accountability which you’ve been stressing is critical here. We need to able to separate the pretenders from the contenders. Hold these tinnitus experts to account (as you say). Objective measurements will become the x-factor in that regard.

In short, objective measurements for tinnitus should be a number 1 priority.

 

The priority should be education of the dangers of loud noise. Had I known about the risk I would have never got this shit and would have never joined this forum.

I am mad, mad at world that this is not taught in schools, that there are no warnings at concerts, no warnings on power tools, speakers, headphones. That noise regulations are inadequate and/or are not enforced.

All the people who could have made a difference - fuck you. And rot in hell.

 

I mean sure, precautionary measures and awareness is fine to prevent people from getting it. But my post is geared towards those with chronic tinnitus and the current state of affairs in tinnitus research. Objective measurements is a game changer for us.

 

The thing is, while I agree noise exposure education should be commonplace in schools and workplaces, many people get tinnitus despite protecting their ears during their lifetime.

My tinnitus stared very mild in 2006-2007 due to EBV or meds associated with treating it.

Then it got massively worse when I got COVID-19 and had an operation on my 14th day of testing positive for COVID-19.

So either COVID-19 or Anaesthesia made mine worse. I’m only 35.

I’ve always protected my ears. I feel some people are just unlucky. I’ve worked with people in mines who have never worn hearing protection and operated bulldozers for 40 years and they have no tinnitus.