Is It Possible That My Tinnitus Is Permanent?

[Emperor-Drax]

I like to live on my own private island and to not work. You can't always get what you want.

I'm seeing a bizarre pattern of contraditions at TT where there are some people who encourage you to continue living your life without being ruled by tinnitus (or ear injuries) but may advise some short term caution. And others who zealously check every corner and over their shoulder and cryptically warn all sufferers they'll need to deal with the effects of the condition for the rest of their natural lives, but almost comically insist that their own lives are still normal (or they've normalised/rationalised their OCD behavioural response to tinnitus) and that their daily lives aren't ruled by the condition.

Obviously there's no consensus here, rather it's more like a fear factory based on the shared experience of trauma, resulting in perhaps the most prominent example of cognitive dissonance I've ever witnessed on the internet. I think everyone means well, but I wonder about their long term mental health and whatever toll this condition has taken on them? Even if their tinnitus fades away, do the mental scars last longer than the tinnitus itself, resulting in less of a "life" and more of an "existence" of chronic avoidance behaviour? There are so many big questions on this one, it'd take a time-rich medical surveyor to properly assess and analyse it.

 

[coffee_girl]

Our lives are normal because we don't allow T to ruin our perceptions of a meaningful life, yes I wear ear plugs when I go to restaurants, yes I get nervous in a car full of screaming strangers, yes I hate it when something loud just appears near by without warning. But those are moments that pass and they are SMALL moments that we habitually train ourselves to watch out for. They are part of our existence but we are not ruled by them, I get moments of frustration but it is so small that it doesn't impact my day or my happiness. Just minor inconveniences.

Acceptance is one of the biggest treatments for T, people think that a cure is the end all of this condition but I learned a long time ago that it is not. So many people cling on to that but frankly it looks really grim, so we remind others to really be careful because it is better to be on the safer side as always than to be too risky.

Edit: My parents are both directors at a research center for Cancer, they are very rigorous about anything concerning T...but they are very frank with me also and say that T is very underfunded and only recently are people starting become more interested in it. Whereas "cancer" is so incredibly invested yet just the bureaucracy/paper work/approval for trials/incompetence...sometimes patients die just waiting to be shoehorned into a new drug.

Like yesterday my dad told me about how he went to Texas to monitor their staff and he said people there don't even know the basics of their job and it was frustrating to guide them through the different procedures...meanwhile their patients are dying. It's just so effed up how the system is working; just look at all the horror stories of ENT's and doctors who are clearly clueless about T let alone asking them for medical advice.

 

[Emperor-Drax]

I guess that's what's led me to read further in this community for the last two months, which is the burning question of persistence and permanency of the condition.

There is no shortage of threads of scared newbies asking rather succintly if their condition will last them for the rest of their lives. And I often see the responses are made up of carefully worded euphemisms that resemble "it may fade but protect your ears from now on" - sure, but a bit vague for many people whose lives are governed by time and would like to know from the experiences of others not just when it will fade, but when they can return to living as they normally did before without the fear of tinnitus returning as a result of a few dishes clinking in the sink. That's the culture of fear I see that permeates here.

I'd imagine maybe nobody who posts here knows the answer to that difficult question because they're still living with it themselves, and for them it still seems like a "forever" condition but that concept is too terrifying for even them to contemplate. And finally those who really did get over it, never suffered another episode and never felt the need to carry a set of industrial grade ear muffs for their grocery shopping simply packed up and left the forum ages ago.

 

[coffee_girl]

Everyone's T is different, what works for others might not work for you, some fade..some don't; some stay permanent, some get worse. Some are spiked by loud noises, others are lowered by it. Some get H others won't, some feel pain...others never know it. Everything is taken with a grain of salt, because no one really knows. We know the exact reasons for some diseases (with no complex variables) yet there are still no cures for them.

Also people move from the forums for many reasons. I left for a while because the horror stories and depressing topics really disturbed me and made recovering very difficult. The more you stick around these forums the harder it is to not notice your T. It's a double edged sword.

 

[Bill Bauer]

That's the culture of fear I see that permeates here.

There is no culture of fear. It seems to me that the choice is clear - you can return to living a normal life, in which case there is something like a 10% chance of your T coming back louder than ever and staying. There is also something like a 90% chance that you might end up being ok. To me this is a no-brainer - nothing is worth taking on a non-negiligible risk of having T come back and stay. But perhaps your preferences are different. Of course the figures 10% and 90% above are just my uneducated guesses. All I know is that the risk is real, but it is likely below 50%. If the real risk is between 1% and 10%, I don't think it really changes anything. I doubt the risk is below 1%.

And finally those who really did get over it, never suffered another episode and never felt the need to carry a set of industrial grade ear muffs for their grocery shopping simply packed up and left the forum ages ago.

And imagine how many people packed up and left who are still living with debilitating T (primary T, or T caused by them pressing their luck and throwing away their chance of getting cured)? I mean, after a while one starts seeing that they seldom learn anything new on this forum, and helping newbies is like trying to stop the ocean tide - the water keeps coming.

when they can return to living as they normally did

I remember reading multiple posts of people having their T return after being exposed to noises that a healthy person would not even notice. So for people who don't want to take the risk of their T returning, the answer is "Never." If you are ok with some risk, then I guess it is sensible to wait a year or two.

 

[Bill Bauer]

p.s. Check out
http://www.env.gov.bc.ca/bcparks/explore/misc/bears/
Would you say that there is a culture of fear around bumping into bears in the forests in British Columbia? The vast majority of those encounters end up with the bear running away [bears had killed around 100 people in this area during the 20th century, while most locals who spend time outdoors (myself included) had bumped into wild bears and had seen one up close], so why do we have all of that taxpayer-funded fearmongering going on?!

 

[Bill Bauer]

bears had killed around 100 people in this area during the 20th century

https://en.wikipedia.org/wiki/List_of_fatal_bear_attacks_in_North_America

 

[Bill Bauer]

As for the people who return to their normal lives and are ok, you remind me of Timothy Treadwell. He was the man who spent 13 summers interacting with the bears in Alaska.
(fast forward to 30 second mark and watch until the end, you won't regret it)

He was the subject of Werner Herzog's "Grizzly Man" film. It is a great documentary that I highly recommend.

Oh, I forgot to mention that during his 13th summer, Timothy and his girlfriend got eaten alive by a bear. I am pretty sure that after 12 years of fooling around with the bears, he was confident that it was pretty safe for him (in the documentary he describes his special technique).

[His experiences also prove how safe the bears really are - you can do stuff like run towards a bear crossing a river and pet it (see the documentary), repeat that countless times during 12 summers and be ok - so why do we have those campaigns to make people aware of the danger the bears pose?!]

Returning to a normal life sounds like a lot of fun, as is fooling around with the bears in Alaska. If/when it backfires, it is no longer fun, though.

 

[Emperor-Drax]

That's why it's called "normal life", not "dangerous life". Living a normal life isn't anything like like playing with grizzly bears (I saw that doco over a decade ago). I'm now wondering how hearing damage seems to warp its victims' perception of the world, because the definitions here all seem to have been put through a blender and have come out of a cuckoo clock.

I think we also need to define "normal" properly too. Normal is being able to go out and do grocery shopping, catching a movie and listening to some tunes without a second thought or worry - basically mundane routine. But I get the sense that "normal" for some people means frequent concert going and head-banging - stuff I was never into anyway.

 

[Bill Bauer]

Living a normal life isn't anything like like playing with grizzly bears

The point is that after your ears had been compromised, the activities that you label as being part of a "normal life" is like playing with bears. Come to think of it - it is worse. First of all the probability of regretting the activity has Got to be higher for T sufferers (recall Treadwell was ok for 12 summers, so regretting encountering a bear is an unlikely event, whereas T spiking after one of those activities has a non-neglibible probability). Second of all a bear attack is intense torture that lasts a couple of minutes, whereas louder T is less intense torture that can last for Decades. So you are right - they can' be compared - with T you have an incomparably more horrific event happening with a much higher probability.

Normal is being able to go out and do grocery shopping, catching a movie and listening to some tunes without a second thought or worry - basically mundane routine.

I stand by all of the points I made earlier - once one's ears had been compromised, this mundane routine (catching a movie in a movie theater, and listening to music using headphones) is crazier than Treadwell's routine when he was relaxing in Alaska.

If you get spikes after being exposed to metal carts rattling when they are being moved, then it makes sense to be careful at a supermarket too. If you don't get any spikes, then I agree it might eventually be a good idea to relax at the supermarket.

 

[Emperor-Drax]

Well I'm not much of a headphones guy for music anyway, but I need them to perform transcripts of interviews I conduct, so they are a necessity.

And I knew you'd pull the "compromised" card, which isn't plain, simple English for most people. It'd help many if you'd elaborate on what that means and if possible, throw out a ballpark figure on its expected duration until people generally heal from that "compromised" state. I work with strict deadlines in my profession where nobody tolerates vague timeframes. A year? Two years? Round about a decade? 50 years? Heck, by the time I'm 83, I expect to be a bit degenerated anyway.

 

[coffee_girl]

Well I'm not much of a headphones guy for music anyway, but I need them to perform transcripts of interviews I conduct, so they are a necessity.

And I knew you'd pull the "compromised" card, which isn't plain, simple English for most people. It'd help many if you'd elaborate on what that means and if possible, throw out a ballpark figure on its expected duration until people generally heal from that "compromised" state. I work with strict deadlines in my profession where nobody tolerates vague timeframes. A year? Two years? Round about a decade? 50 years? Heck, by the time I'm 83, I expect to be a bit degenerated anyway.

I think I read somewhere that your T is going away (congrats!)...I see that you are very hopeful to returning to a normal life. Please take some time to protect your ears as well, the first incident is already a huge flag that your ears are not what they used to be. In some ways, a "normal" life will never be the same for us after T....changes will have to be made but they don't have to control your life.

 

[Bill Bauer]

And I knew you'd pull the "compromised" card, which isn't plain, simple English for most people. It'd help many if you'd elaborate on what that means and if possible, throw out a ballpark figure on its expected duration until people generally heal from that "compromised" state.

When I read a significant number of posts where people describe experiencing major problems as a result of moderate noises that the healthy people won't even notice, I interpret it as "the ears of people suffering from T have likely been compromised, and now it might take a lot less to cause problems for us."

I thought about this, and now I see that (over the past 18 months) I can recall about 2 or 3 people describing beating T, and then many years later having it returned as a result of being exposed to moderate noise. I am not sure what to make of it. It might mean that the risk is low. It is also somewhat consistent with the risk not being so low. For me, it is enough to commit to avoiding moderate noise. The fact that the risk exists, poisons any benefit I might get by doing the enjoyable risky activity. For example, I might like to take a short boat cruise on Maligne Lake in Alberta

but I know that the thought that I might have to pay for it for the rest of my life will poison the entire trip. I can't imagine myself enjoying it, so I will never go on this trip.

The bottom line is that it is possible that the longer you wait, the lower is the risk, and if you are ok with taking the risk, hopefully it will work out for you.