How I Feel About Tinnitus Subjectivity

One of the things people say around here and in other tinnitus communities is that it's not the tinnitus that makes people sad, but their reactions.

I feel like this is completely wrong and deflecting the actual problem.

Just because we can't fix the problem doesn't mean it's not the problem. Without the sound there would be no depression, and reaction has hardly any bearing on that. It's matter over mind.

Even if you convince yourself to not react to tinnitus, you still try to not react, think about it, and go to support forums (if you're gonna debate me, remember, you're reading it, here). I feel we need to be reacting to the splinter and not talking about alleviating the pain it causes. That's what I think at least.

 

Really, we all know this to be true. The reaction is about all we can address though, given that the current paradigm of care and research is still what it is.

 

There is no understanding due to docs say deal with it, T people keep thinking there is going to be a cure or looking to recieve better treatment but when docs say deal with it's a merry go around but this site has give me a better clue on how to deal with T.

 

@Markku Your post was well written and discussion on how one can cope depends on level and pitch. Most with tinnitus don't have severe loud and high pitched tinnitus that may be caused or not from ongoing other medical conditions. One example is grinding teeth causing mouth problems before or after getting tinnitus. This adds to more stress.

When I got T over seven years ago it was a 10/10 for three and a half years, Only after three and one half years, it physically dropped to a 6/10. Then I was able to cope with life. Now I have added somatic treatment which is a 10/10, but maybe someday, it will lower again. It's as loud as a fire alarm that moves from ear to ear or stays central. When I lay down, my T will sometimes moves to my ear not on the pillow.

Those who talk habituation with 8-10 levels who don't have a high pitched level, use psychology that I don't buy into to. Those with a 10/10 who talk how they have habituated, I don't believe that their T is a 10/10. Not many of us have a 10/10, but ending my life isn't something that I can do.

 

I'm probably the minority but I definitely want to end it too. It sucks to have one of the worst common conditions, but nobody cares to research it. It also sucks that the community shoots itself in the foot everyday by borderline discouraging people from caring by selling them the poison that's the reason there's no treatments today (habituation). That's what sucks for me. I wouldn't care except I'm part of the tinnitus community and I don't want to be held back because we can't get it together.

@Markku you know what? I agree with you on a lot of it. We can stop deflecting the problem if we find a treatment. That's what we need to completely focus on. If habituation is a thing (not really but might as well pretend), then it happens on its own, and we should completely focus on finding treatments. Less TRT, more research.

P.S in that screenshot, when that guy said "there should be more awareness for habituation", I physically felt sick for a minute. That guy is part of the problem. Other people in other disability communities have that kind of person hurting their chances of finding a cure, but it sucks that with us, they're part of the community

 

I'd be happy with treatment how about if they can figure out how to due sonagrams of the ear or brain that way maybe they can pin point were to start and MRI is not right with high tech today I'd put my camera to my head
And see better. I dont think they want to think out of the box for treatment.

 

Interesting. I have a 3 way chicken and egg thing - I have had arthritis most of my life, I have type II bipolar disorder and I have the H & T. H&T could be caused by my bipolar disorder or it could be caused by all the NSAIDs I have taken for arthritis. I don't know and frankly don't care.

I have 3 conditions that will likely never be cured. You know which one is worse? I don't know and frankly don't care. I am habituated to all of them to some degree. It doesn't mean I don't poke around to see if there is some new treatment that is getting good results. That's why I just joined this forum and why I participate in other forums about my mental health and joint problems. But none of them are ruining my life. I am still healthy enough to participate in nearly everything I enjoy.

T & H is probably the easiest of the 3 to ignore. It's just some noise. Arthritis is actual physical pain and my bipolar disorder can cause me to say things that are an HR nightmare and could get me fired. I take my meds for bipolar and arthritis and I see a therapist. Then I go live my life without worrying too much about all that.

Let's go fishing!

 

Exactly. Considering the technology this inability to produce a tinnitus treatment is inexcusable.

 

Everyone to some degree will react to the tinnitus, some can dwell on it more than others. It's impossible to 100% ignore it.

I'll step up and say that it doesn't matter how loud the tinnitus is, one can still live their life. My tinnitus is a screaming tea kettle from hell and a low tone microwave sound/lawn mower sound. I can be standing on the side of the freeway and my tinnitus is still louder. I been at this for almost 30 years and have had lots of years to learn how to manage this beast. It's not easy at all, but I manage. It is, what it is. I have tinnitus/arthritis/fibro/gastritis. I will not list more issues.

Life is a challenge indeed, but I am driven and no tinnitus will keep me from living my life. Mentality makes a huge difference in our lives....Nice post BTW

 

Screw ignoring it. I've been making absolute sure since I've had it to not ignore it and fight it. I think that's the best way. Giving up and trying to ignore it is the pure cancer that's getting in our way.

 

You are a troll, please find another board to spam with your crap. You seem to chuckle at my posts and yet you wonder why no one likes you here......

 

Sheesh. I try to be self motivational and keep going, and you lash out. I'm not the problem here, nor am I trying to be.

And when do I chuckle at your posts? When I rate it "funny"? You did the same exact thing with me. I assume it's the tinnitustalk equivelant of a downvote.

 

So you spend all day, every day intentionally sitting and doing nothing but listening to it? Or do you actually function? Like read something, watch TV, cook food, clean up, go to work or school, etc. Because doing any of those things is essentially ignoring it. It's letting your mind think of something else first.

And what have you so far done to fight it? What vitamins and treatments have you tried? What testing? Always curious if I've missed trying something.

 

Yes of course I do other things. I also make sure to focus on it every now and then to make sure I don't give up and leave it alone.

So far I've been working on mentally "suppressing" the sound. I've trained myself to make it pulsatile on demand. Now I can have brief experiences of quiet between pulses. I'm trying to expand them and maybe even turn the sound "off".

 

That sounds an awful lot like habituation. Mentally changing it, going periods of time where you do not focus on it.

Have you ever considered that if you do not focus on it, your tinnitus might go away? I've read some theories that the noise essentially gets "stuck" in our brains. The damaged nerve is sending a message with missing frequencies and the brain responds by making the missing frequency. It doesn't realize it can stop making the noise, so it continues to do so.

That's not true for everyone (especially anyone with hearing loss) and that's a very unscientific explanation, but it might be worth a try for you.

 

Maybe. I have not heard that and I tried something like that so I doubt it. I will pursue what I am doing right now, and if it ends up being something important then I'll update you. Doesn't sound a thing like habituation to me though.

 

It's unbeatable. And due to the habituation stories there will never be a cure. If you have severe-intrusive tinnitus there's no possibility of habituation. I really dont understand why TRT supports such a claim. It's a one way ticket to hell. Indeed most of the patients have it mild and the bad cases are way less. Who would care to invest on research for such a thing? Fuck my life.

 

Hi Markku - Since meeting you on here, I have often wondered just how it is for you.
Thank you for being so frank.
The severity of my condition is very similar to yours.
I am very interested in people like us, with severe Tinnitus, who have not yet been able to habituate.

I would like to know more about their coping methods.
Was there a catalyst for their improvement?
I do meditate and use relaxation principles, which can be quite helpful, but in line with some other of my heroes on here, I seem to be left in the position of ‘stoical acceptance.’
Finally, thank you for this incredible website, and all that you do.
I believe you have saved lives,
Dave

 

@Markku

Peace my friend x

 

At a truly desperate time for me, I read this, and it helped.
It gave me permission to believe that my survival was a possibility.
Nobody else told me that.
I was falling fast.
It told me that others had it just as bad, and were determined to survive, and were proving every day that they could both, survive, and lead meaningful lives.
We come from all different life experiences, have different mind-sets, different personalities.
A statement that helps me, rather like a ‘helping hand,’ may infuriate somebody else.
I appreciate everybody on here that tries to make a difference.
We are all “human beans,”
but are so intrinsically different.

 

Markku - I had to answer you this morning, on the run, as it were, so I wanted to come back.
I do feel for you with such a hill to climb.
A few times in my life I felt that I was finished.
I simply could not take any more.
I hurt so bad.
I wasn’t born to be a hero.
None of us ever wanted to take that hard road.
Yet, somehow, almost unbelievably, we manage to pick ourselves up, hold ourselves together, and make a go of it.
Very best wishes always, Markku

Dave x

 

@Jazzer, you are a breath of fresh air on here you really are. You are honest, and more importantly, you are compassionate. You show all the qualities of a brilliant human being. You are also a fine musician.

@Markku, again you are also incredible. You are suffering and yet you step up to the plate to make a visable difference to people’s lives. You go beyond mere words and have actually created a community and a hub that actively participates in the tinnitus community at large. When I had my MRI incident I was in a real bad way. I’m not the best at showing my emotions neither on here, or in the real world. It is a weakness of mine. However, I have turned a corner on that and have accepted the new tone. I’m far from perfect, but I try to help others by sharing my experiences, good and bad.

Keep up the awesome work.

My personal thoughts are well known. I believe we should try and get our lives back on track, but should try and raise awareness - and possibly money - wherever possible. The primary focus should always be to get ones life back to a functional and happy state. It shouldn’t really matter how this is achieved. The word habituation is almost taboo nowadays.

 

A difference for me with my whiplash tinnitus from over a year ago compared to my syringing tinnitus in 2010 is all the other conditions that I now have. I have syringing listed in April 2011, but it happened in April 2010. It was April 2011 that I told my employer that I will never be coming back to work.

I have a cardiologist appointment in a few hours and my wife will be coming home from work before to help me bathe and dress me. Medical things are really bad for me and that makes my tinnitus so much more difficult.

 

@Ed209

Ed, you are very kind.
You and I come from the same stable.
If we can do anything to help, to encourage, to lift someone’s spirits, we will do it.
I have read many of your posts, and time and again you prove yourself to be kind, supportive, and genuine.
(I’d even buy a secondhand car off you!
‘Ows That!)
Of course, I know only too well that, that empathy comes from the experience of personal suffering.
So, we know that a kind word can give so much ease.
We can not cure each other, as we can not cure ourselves.
But we can join hands, and make a difference.
Just love you guys.
Call me a snowflake.
I couldn’t care less.
Dave x

 

The way I see tinnitus is much like poor vision: by itself it's not life-threatening or dangerous, but man, it can really affect the quality of your life. That's why I dislike the phrase "Tinnitus is not a disease, but a symptom". Anything that has to do with one's life quality is a disease. And in the end, we are just our brains, so even though something is not "real", doesn't mean that it doesn't matter. Mental torture is as real as physical one.

 

@Jazzer I agree with a philosophy that you seem to have by not pasting critical judgement of others who have a soul. To judge others is inconsiderate and everyone has certain beliefs that can be based on experiences or their genes. There are times when we do need to comment back, but using respect has class.

I've done some bio medical research in the last month on how some having tinnitus along with certain conditions such as cervical nerve and vein damage must be very careful with noise. Some with certain conditions must be careful on what drugs they use. I don't believe in blanket judgements.