Almost a Year

[brownbear]

Coming up on a year for me now. It's a mixed bag. I genuinely couldn't care less about my tinnitus about 80% of the time but am still aware of it almost always which is frustrating. I went driving with my roof down and music high the other day and could still easily hear my T. It's a joke how loud it is. At times now I do even find it comical. My concern is that it's too loud not be aware of it but maybe it's still early days.

I think my biggest problem early on was that I was not sure AT ALL that I could live with it as it took everything from me. Now I know I can carry on which is a relief. I have had to accept a big decrease in my quality of life but strangely the more I accept that the less my quality of life is affected.

I gave up on trying to do anything to help me a long time ago and for a while I thought I was quite weak to do this. Actually a think it is brave decision when one decides not to try to solve this any more. That said I have the utmost respect for those who continue to try to solve their tinnitus and campaign. Before everyone jumps on that comment I am not talking about the early days when one might find a myriad of reversible causes for their tinnitus, I am talking about those that have reached the end of any realistic therapeutic line. I certainly can't be accused of not trying as in the first 6 months I tried more different options than most would, probably to my detriment.

You can have peace without quiet.

 

[Jomo]

im almost there with ya man....i did things in the beginning as well that helped make the transition easier....now i just go on with life as usual but of course i pray for the day that we can make this hell go away. i still do everything i want to do except play drums but after attending a wedding last week with no issues i think i could even go back to that if i wanted but wont (will just get an electric kit at some point). i am also getting married this year so i have no other choice than to carry on.

 

[InfiniteLoop]

@brownbear

That is very good progress and your T seems to be loud. Congratulations for your very good path to habituation. Yes, the T riddle can not be solved, and the only solution is to embrace the monster.

 

[Fabrikat]

I have had to accept a big decrease in my quality of life but strangely the more I accept that the less my quality of life is affected

The gift of lowered expectations, maybe. These days I am happy just to have made it to the end of another day. I relate to much of what you say. I'm 11 months in and my tinnitus is still searingly loud with no sign of habituation, which I hear too with the car window down and the radio blaring. So I'm impressed that you can continue to function regardless.

I also have moments where I think that the volume is just so laughably loud. A diabolical joke, with sufferer as punch line. Who ever had an inkling ears could turn on you like that? I still have moments of denial that it's actually happening to me. But I am pleased to hear your story of resilience. I do hope I can get to where you are now.

 

[brownbear]

I'm no where near as far forward as I would have hoped to have been at 1 year. I feel as though I have had to brainwash myself into thinking this is not a total disaster. I think lowered expectations is exactly right. Initially I thought surely I would be better in a week, then a month, then 3 months, then 6 then a year! Now I am trying to think much more long term - say a few years of being aware of it constantly and frustrated, then a few more where I notice it less and less. I try to picture myself in 10-15 years where it is all old news. Who knows, though, maybe then I will have a 30 yr plan!

There's no getting around how shit this is. I try to keep occupied but not busy, as busy is not sustainable. One thing that has helped me is to stop assessing how bad it is and comparing days. Now I try my best to wake up and say that the day will be what I make of it. There is definitely variations in volume that are NOT related to my mood but I found that if I identified a pattern to the days and was expecting a bad one, then sure enough it would be bad. I think this was largely a self fulfilling prophecy though as now it is all just a muddle of good and bad that I pay as little attention to as possible.

Good luck to everyone

 

[GregCA]

Good luck to everyone

Thanks. It looks like you're on a good track.

There's no getting around how shit this is.

Is there something that you've learned around this condition that you think would be helpful to feed back into the "doctor circles"? Something that is either misrepresented, misunderstood, or lacks awareness?

 

[brownbear]

That's a tricky one. I probably had an unusual amount of input and interest in the early days given my job. I do look back though on all the advice I was given and treatments I tried and I wonder if it all just sent me into a frenzy and made things worse.

One of the most reassuring things that was said to me was by a psychologist specialising in tinnitus. He said that he probably shouldn't say this, but that he 'knew I would be fine'. Those words have lingered with me.

When I see people first there are two things I have to work out quickly: Is there something I can do to treat them and more importantly how much is it affecting them. Most people I see could hardly care less about their tinnitus so it would clearly be a mistake to start turning it all into a big deal for them.

I will give some more thought to what I have learnt and get back to you.

 

[GregCA]

Thanks for the info.

One of the most reassuring things that was said to me was by a psychologist specialising in tinnitus. He said that he probably shouldn't say this, but that he 'knew I would be fine'. Those words have lingered with me.

I wonder why he'd think he shouldn't say this...

When I see people first there are two things I have to work out quickly: Is there something I can do to treat them and more importantly how much is it affecting them. Most people I see could hardly care less about their tinnitus so it would clearly be a mistake to start turning it all into a big deal for them.

Indeed.
I appreciate your feedback. Thanks for taking the time to collect and write it.

 

[brownbear]

I think he meant it very pointedly. As in, I probably should make any assumptions about you as in individual but in my experience you will get better. And he most have seen thousands of severe sufferers over the last 30 years.

 

[brownbear]

I have been thinking some more and I think the biggest problem I have with healthcare is the loudness issue. Almost no one seems interested in how loud or unpleasant your T is. I can hear it in their voices that they have little interest in this aspect of things and just peddle the same thing I have peddled which is that it shouldn't affect the outcome. I just find this so hard to get my head around.

It is CERTAINLY true that I see lots of people with seemingly loud intrusive tinnitus who are not bothered by it, but I still find this troubling. The only way I can reconcile this is that IF you are going to be a 'sufferer' then maybe volume MATTERS A LOT. If your not going to suffer then maybe it makes little difference.

I just wish that when I talk to people they were more interested in the actual details of the tinnitus (volume, nature etc). I think there has been a big change in my practice in that I do ask a lot more detail now about the noise itself. I think before I was sympathetic but the fine details of their tinnitus was probably not on my radar as much.

 

[GregCA]

I have been thinking some more and I think the biggest problem I have with healthcare is the loudness issue. Almost no one seems interested in how loud or unpleasant your T is. I can hear it in their voices that they have little interest in this aspect of things and just peddle the same thing I have peddled which is that it shouldn't affect the outcome. I just find this so hard to get my head around.

I think I agree with you. I often find that doctors have ready made answers for the "3 sigma people" (i.e. the majority in the bell curve). If you're off by more than that, then you become a "complicated case" that doesn't seem to be worth their time, or that they just don't want to investigate.
I'm sure there are doctors who love challenges and are willing to go the extra mile for these "weird cases" (like Dr House), but I have a hard time coming across them.

I have a weird case of otosclerosis. It just doesn't fit the mold at all, and nobody can explain what happened to me. Yet all the doctors I've prodded to try to look for different causes or learn more about what could be causing it were just not interested, and stopped at "yeah it's strange indeed, I don't know what happened" instead of "yeah it's strange indeed, you know, we should do test A, B and then if C then D - we'll know a bit more about what's going on with you".
But no.
Again, I appreciate that they have limited time and also have a life, so I don't blame them as much as I blame the system that makes our sessions be more like speed dating than thorough consultations, but I wish it was different, or that I could at least figure out a way to find a doctor able and willing to help (even at a higher cost out of pocket).

 

[brownbear]

Yes I think you definitely need to find someone who is interested and has the expertise. Personally I don't see why more doctors don't spend time enjoying the more difficult cases. Most of what we see is routine and not terribly stimulating. It's much more interesting when you are set a challenge. You might not solve the problem but it could still be rewarding for patient and doctor, particularly the patient who wants to leave no stone unturned. That said there is a balance between investigating and raising peoples hopes only for them to be dashed with no solutions. There is nothing worse than lost hope.

 

[GregCA]

Personally I don't see why more doctors don't spend time enjoying the more difficult cases.

I suspect it's just not practical. I keep reading about how much pressure doctors are under to "see more patients": I read that they barely sleep, are super stressed, and that it already takes a toll on their ability to make the appropriate decisions, so I'd assume that dealing with more difficult cases and taking more time is just going to add burden to an already stressed out system.
My guess is that some doctors do want the challenge, but are stuck within that system and feel like they just can't do it.

You might not solve the problem but it could still be rewarding for patient and doctor, particularly the patient who wants to leave no stone unturned. That said there is a balance between investigating and raising peoples hopes only for them to be dashed with no solutions. There is nothing worse than lost hope.

Agreed, but at the same time, once you go down that path, you already know that it's uncharted territory, so your expectations aren't very high. At least give the choice to the patient with a huge disclaimer.

It's a bit of a self fulfilling prophecy: difficult cases aren't investigated deeply, so we end up collecting very little information about them, so the "medical run book" won't contain information about them and therefore they'll always be characterized as difficult cases.

 

[brownbear]

Agree with all of that

 

[Roger]

" You can have peace without quiet".
Its true.
Brownbear. Good words.

 

[Jake007]

Almost no one seems interested in how loud or unpleasant your T is.

I hear ya 100% there

 

[Sonic17]

@Fabrikat These days I am happy just to have made it to the end of another day.

I am with you on that comment, Fabrikat.
Thank you for the thread….I found it helpful.

Angela

 

[brownbear]

Well another month rolls by of excruciating unmaskable tinnitus. Not much further progress for me. Can go a few minutes without noticing it when distracted. Anxiety low mostly. Sleep great (my haven from the metal grinding).
Still on ADs. Don't think I will consider stopping them any time soon.
I have got a few pets and it is really helpful - went a bit crazy and got a kitten, puppy and tropical marine aquarium to keep me busy!

 

[Samantha R]

@brownbear
Congrats on your new additions to your family. Animals are amazing.... and tropical fish have the most amazing colours!

I think you are doing well, of your anxiety is low, well.... that's half the battle.

I have a mild/moderate tinnitus for 14 months and I am not habituating really. Even if I can't hear the tinnitus, I think about it....

You may not think of it this way, but I get a lot of hope from you. You have a demanding and challenging job, yet you still function well despite the tinnitus.

Keep us updated.

Sam.

 

[linearb]

@brownbear two thoughts:
#1 "loudness" and "distress" appear to have different neural correlates. Specifically, people with more distress show reduced brain density in a brain area that people with less distress do not. That said, I think there's an obvious connection there; if we think of something like back pain, most people in their 30s will experience some minor, possibly constant, pain and discomfort. Some will find this very upsetting, others will ignore it. People who have truly searing pain that interferes with sleep are clearly more likely to be upset by it, but even for "identical" pain there is likely a spectrum of responses from "meh this sucks but w/e life is hard" to "this is the worst thing ever and I don't want to be here any more".

We're starting to learn a lot about chronic pain and how it impacts the function and structure of the brain, and I think the most important thing here is that we're not completely powerless. Think of tinnitus as a big, crushing ocean storm bearing down on a little oceanside village called Tranquility. If we want to continue to live in Tranquility, we do not have the technology to stop the storm, but we can perhaps build better walls around the town.

To bring my dumb analogy back into focus on topic - what tools might we have to build these walls? What do we know about them? We're increasingly finding out that the brain changes constantly, both as a result of internal and external data. Several studies have shown that long-term meditators or yoga practitioners handle chronic pain with less reported distress and disability than matched controls. Several other studies have shown how meditation impacts the actual structure of the brain. The thing is, though, this takes an incredible amount of patience and perseverance. It's not like "take a pill, feel different in 2 hours". If anything, if we haven't been practicing good "mental hygiene" (very difficult in the modern world under the best of circumstances), then early attempts at meditation may make us more distressed as we start to realize how scattered and disorganized our mind is. This can create negative experiences, and often people give up because they think it's making them "worse" instead of taking it as insight into things that they can exert control over. @fishbone I'm curious what you might think of this paragraph; I'm not actually sure if you do any contemplative practice or not, but your thinking on these issues always makes sense to me and is generally reassurring.

#2 If you've already got loud tinnitus, for the love of god, do not drive around with the windows down and music blasting unless you want it to get worse more quickly and severely than it might otherwise. Your auditory system is impaired. Help it, don't hurt it. If I had taken that basic idea to heart in my early 20s, I think I'd be in a better situation now.

 

[fishbone]

@brownbear two thoughts:
#1 "loudness" and "distress" appear to have different neural correlates. Specifically, people with more distress show reduced brain density in a brain area that people with less distress do not. That said, I think there's an obvious connection there; if we think of something like back pain, most people in their 30s will experience some minor, possibly constant, pain and discomfort. Some will find this very upsetting, others will ignore it. People who have truly searing pain that interferes with sleep are clearly more likely to be upset by it, but even for "identical" pain there is likely a spectrum of responses from "meh this sucks but w/e life is hard" to "this is the worst thing ever and I don't want to be here any more".

We're starting to learn a lot about chronic pain and how it impacts the function and structure of the brain, and I think the most important thing here is that we're not completely powerless. Think of tinnitus as a big, crushing ocean storm bearing down on a little oceanside village called Tranquility. If we want to continue to live in Tranquility, we do not have the technology to stop the storm, but we can perhaps build better walls around the town.

To bring my dumb analogy back into focus on topic - what tools might we have to build these walls? What do we know about them? We're increasingly finding out that the brain changes constantly, both as a result of internal and external data. Several studies have shown that long-term meditators or yoga practitioners handle chronic pain with less reported distress and disability than matched controls. Several other studies have shown how meditation impacts the actual structure of the brain. The thing is, though, this takes an incredible amount of patience and perseverance. It's not like "take a pill, feel different in 2 hours". If anything, if we haven't been practicing good "mental hygiene" (very difficult in the modern world under the best of circumstances), then early attempts at meditation may make us more distressed as we start to realize how scattered and disorganized our mind is. This can create negative experiences, and often people give up because they think it's making them "worse" instead of taking it as insight into things that they can exert control over. @fishbone I'm curious what you might think of this paragraph; I'm not actually sure if you do any contemplative practice or not, but your thinking on these issues always makes sense to me and is generally reassurring.

#2 If you've already got loud tinnitus, for the love of god, do not drive around with the windows down and music blasting unless you want it to get worse more quickly and severely than it might otherwise. Your auditory system is impaired. Help it, don't hurt it. If I had taken that basic idea to heart in my early 20s, I think I'd be in a better situation now.

I agree with what you have said. For me building a better wall has always been about controlling my fear/anxiety that relates to the issue I am facing. Fear/anxiety is one of the most destructive elements that impact tinnitus/spikes big time. From my experience, as long as the sound is in safe levels, then ear damage tends to be limited. It's the fear/anxiety that raises that tinnitus and creates a spike.

This is from my experience. I was at a networking conference last night and the regular sounds were at 80db, and i was just fine. When it came to 95db, then I knew the sounds were not at my comfort level and it simply irritated my tinnitus...so I left.

Today, I have no spike or anything. Same tinnitus as usual. Now, this can be quite different for someone that has hyperacusis or someone that still doesn't have a grasp on tinnitus and how to deal with it. I been at this for pretty much 30 years and those years of experience have taught me, all that I need to know.

Damaging sound levels should be avoided, reducing anxiety/fear can also be helpful. It takes time to do this, but as i have always said "YOU are a lot stronger than you think!"

 

[brownbear]

@Samantha R . Thanks for your message. The pets are great fun and a brilliant distraction. I lived in Oz for a year when I did my Cochlear Implant fellowship. Such a great place. I was in Sydney. No place like home though and I came back to the dreary UK!

I can always hear my T as it is unmaskable and very rough all the time but I know what you mean about still thinking about it even when it is a bit less intrusive - like a constant rumination and inner monologue about it even when it's not bothering me. I'm amazed my mind hasn't got bored of it already. I have lots of good times though. I thought that when I habituated I would not be aware of it for hours on end. For me it's not like that, but actually when I think about it I am probably aware of it only about half the time now at most. I go a few minutes without noticing it, then become aware and the cycle continues. I am made unaware of it now by the slightest thing - a conversation, buying something, watching TV etc. Sometimes I can go about half an hour without noticing it which is amazing given that it is outrageously loud.

I hope things get better for you, I'm sure they will. You do need to stay positive but remember it isn't possible to positive all the time and you will have bad times but hopefully they get less and less. Good luck.

Is Geelong near Melbourne? I drove the great ocean road and Geelong rings a bell!

 

[brownbear]

@linearb . Thanks for that. Totally agree with what you were saying in your first point.
I must admit that listening to music loudly by my standards is probably not very loud, so no need to worry! Having said that I absolutely refuse to let this thing stop me from living my life as I did before. I have no problem whatsoever with listening to music at a decent volume if I am enjoying it and I will not change that, ever. One of my children has a rare syndrome and various disabilities and is VERY loud, so not much chance for me to avoid loud noise unless I avoid my lovely son! I'm not sure I would go to a concert and stand near a speaker like I used to when I was in my twenties though! I just try to be sensible.

My T is an excruciatingly loud high pitched grating sound like someone is grinding metal in my ear, so I doubt it could get much worse, but you never know. If it does I will either be finished or I will start from scratch.

 

[DebInAustralia]

@Samantha R . Thanks for your message. The pets are great fun and a brilliant distraction. I lived in Oz for a year when I did my Cochlear Implant fellowship. Such a great place. I was in Sydney. No place like home though and I came back to the dreary UK!

I can always hear my T as it is unmaskable and very rough all the time but I know what you mean about still thinking about it even when it is a bit less intrusive - like a constant rumination and inner monologue about it even when it's not bothering me. I'm amazed my mind hasn't got bored of it already. I have lots of good times though. I thought that when I habituated I would not be aware of it for hours on end. For me it's not like that, but actually when I think about it I am probably aware of it only about half the time now at most. I go a few minutes without noticing it, then become aware and the cycle continues. I am made unaware of it now by the slightest thing - a conversation, buying something, watching TV etc. Sometimes I can go about half an hour without noticing it which is amazing given that it is outrageously loud.

I hope things get better for you, I'm sure they will. You do need to stay positive but remember it isn't possible to positive all the time and you will have bad times but hopefully they get less and less. Good luck.

Is Geelong near Melbourne? I drove the great ocean road and Geelong rings a bell!

You've come a long way since your earlier posts. Really pleased to see you habituating, and returning to the forum to share your experiences.

I have a cat and she gives me immeasurable pleasure, long before the t, but even more so now.
We do have a section on the forum where you can share photos of your furbabies. I wouldn't be opposed to seeing them

btw, Geelong is an hour from Melbourne. Yes, Geelong is the gateway to the Great Ocean Road.

 

[Samantha R]

@brownbear
Sydney is a great place to live. My favourite!
I have a sister working in the UK, on Cambridge sat a university there. She loves it!
Yes Geelong is an hour from Melbourne, so you probably passed through going to the Great Ocean Road.
Positivity is key, I am in a better place, but find I take two steps forward and one step back.
I do like you find myself distracted more and not ruminating on it so much. Night time is the worst as
it tends to get a little louder so I am always trying to see if I can hear it over the TV or not and I usually can.
Just curious if you mention your own tinnitus to patients that you see with tinnitus?

 

[brownbear]

Hi Samantha, no I don't normally mention my T as most people I see are doing far better than I am and could hardly care less about their T! When I see severe sufferers I sometimes mention it - I think so that they know I understand and to try to get some credibility with them as most severe sufferers hate us.
I have asked my colleagues in the region to send me their most severe T patients so we'll see how that goes........

 

[Jazzer]

and the only solution is to embrace the monster.

Running away from Tinnitus simply doesn't work.
If you meditate (relaxing in a warm bath is good) with the starting point being 'listening to your tinnitus,' you will soon drift off into a peaceful slumber, and come to associate "T" with relaxation.

 

[Jazzer]

@linearb - Great post.
"mental hygiene" - absolutely spot on.
For those with this horrible affliction, meditation can quite literally save your life.
Habituation comes into view.

 

[Jazzer]

@linearb - Tinnitus is clearly a medical issue,
but short of any effective treatment, much less a cure, coping with it becomes a psychological issue....