Tired of Suffering

We're nearing the 1 year mark since I first recall being cursed with this disease. Since then only negative things and nothing positive has come to my life.

I have come to distrust psychiatrists, ENTs as unintelligent and worthless, and the scientific community as a bunch of assholes.

No one cares about our suffering. Those that do only masquerade to so they can sell you a 4,000 pair of uselsss hearing aids, prescribe worthless and ineffective antidepressants, maskers, or 20 sessions of TRT/CBT/acupuncture at $100 a session.

No one cares about us, including tinnitus researchers and the doctors or researchers who visit this forum. You are as useless to us as everyone else. I'm sick and tired of feeling shitty after coming g down from Adderall (not the tinnitus' fault but I'm not taking any antidepressants for this), sick of having to rely on medication just to sleep at all. Sick of being depressed, anxious, irritable over a stupid noise.

I am SICK OF IT!!! If my nervous system wants to break down and not function then I may just break it entirely so one of it functions. My quality of life sucks because my goddam brain can't let go of some simple sound. It has to go and shrink my limbic system and hippocampus so I become even more depressed.

I have no real quality of life anymore. Any joy I have is masksd by the tinnitus. There is no treatment for tinnitus, none. It's all to treat anxiety and depression, which should be ignored and allowed to worsen in treat the stressor itself instead.

I am sad, angry, restless, moody, irritable, depressed, anxious, and sick and tired of this. I almost wish I could just have a heart attack my body is unprepared for and cannot stop, prevent, or counter so my metabolic functions cease.

This may seem odd to some of you given how happy I was earlier. Well the mood buffering ends and declines, the noise come back up and so does my false "need" for alertness.

 

***No one cares about our suffering. Those that do only masquerade to so they can sell you a 4,000 pair of uselsss hearing aids, prescribe worthless and ineffective antidepressants, maskers, or 20 sessions of TRT/CBT/acupuncture at $100 a session.***

These very same things that you argue against, make and have made a HUGE impact in the lives of others, including myself. My tinnitus has been super aggressive (More Hellish, than usual) lately and I make use of the very same things that you call useless and it helps me out......

Explain to me, why it can help folks like me (and Multiple of others) and not folks like you? What makes us different?

 

Because they are not tinnitus treatments, but rather anxiety and depression treatments that do not guarantee prevention of relapse. A visit to the tinnitus clinic alone is like $300. And for what? To be told what I already know? I will actively discourage people from going to see audiologists and ENTs unless it is an earwax problem that is easily fixable.

TRT and CBT ass a universal anxiety treatment is shaky at best in terms of its evidence. Antidepressants that involve serotonin have been suggested to worsen or even cause tinnitus, and acupuncture has no scientific evidence that it consistently reduces tinnitus and not anxiety.

Any "treatment" is usually just some professional who lacks the condition looking to get a fast dime off you.

 

I will say this much, TRT was effective for me over 25+ years ago and I am thankful to that audiologist who changed my life. Hearing aids can also be helpful, finding a reputable audiologist who truly understands tinnitus is very important. These things do work, if they did not...I'd be the first one to tell you so.

I am very blunt and honest and if something does not work, i'll post about it

Not everything out there will work, but somethings DO work and CAN make a difference in the lives of those that suffer from tinnitus. By work, I mean they can help us live with tinnitus.....

 

Only thing that has done anything for me is time, and even that proved to be a let down.

 

Just hang in there Your tinnitus is almost 1 year old, I was very lost for more than 1-2 years myself. It can eventually come together and get better. being open minded about things helped me a lot....

 

Why? A month ago I accidentally played a pure tone at a really high intensity and probably induced more tinnius and hearing loss from acoustic trauma. I'm not going to pay $500 for a tinnitus clinic to tell me what I already know, and presribe a $3000 pair of hearing aids that will barely improve my life and won't be covered by insurance.

My hair cells will continue to die and it will only get worse. I'm 23 for fucks sake

 

I've been running in circles from one doctor to another, no body gives shit.
Weather you live or die they don't care!

 

Very well said @fishbone. Medication, counselling and white noise generators have helped me a lot over the years and I'm thankful for that and to the medical professionals that helped me. Some people will accept nothing less than complete cure for tinnitus and are looking for someone or something to blame when this is not achieved. If they were to step back and look at the bigger picture and at the positive things in their life. Instead of moaning and complaining, they would probably start to feel better about themselves.

Tinnitus can be a very debilitating condition when it is severe. I believe if a person is able to work, is not vision impaired. Is not physically disabled in any way. Can feed, wash and clothe themselves. Has a roof over their head and is not sleeping rough or on the streets. Hopefully they do not have any other medical conditions. I think they should count themselves fortunate as things could be a lot worse. If one is able get medical help for their tinnitus such as: medication, counselling, sound therapy etc. Then take them and try to get the most out of life because it's not that long.

Michael

 

Unfortunately, there is no cure for tinnitus. We have quite a few things that we can use to live our lives. If our standards are to have silence again, it can be quite disappointing. I use to have the same standards and at times would even shed tears over it. If we know that such an affliction exists, then we need to possibly find new standards.

There are many tools/techniques to help people that suffer from tinnitus. in order for these tools/techniques to work and help, we need to be open minded about them. If we dismiss everything and remain negative, then we simply hold ourselves back.

That's why I try to be positive on this site. Why should I be positive? My tinnitus is louder than freeway noise and it's a mess. I have no family, i'm alone and in pain 24-7 with fibro. It is what it is, it's life and we deal with it and try to move forward. Being negative simply amplifies the suffering, for me at least it does and I don't need more pain.

It all comes down to mindset, and just how bad we want certain things in life

 

Not long after I got tinnitus twenty two years ago. I also had standards and that nothing less than a complete cure for tinnitus would be acceptable. I found myself being miserable for a lot of the time. This happens a lot to people in the early stages with this condition. I had two choices and that was to sink or swim to coin a phrase. What helped me change my attitude to life and tinnitus, was reading a newspaper article. It mentioned: Nineteen out of twenty medical conditions cannot be cured, although most can be treated.

Michael

 

Or your hair cells will not continue to die and it will not get worse.

 

It naturally happens as we age. It's just a matter of how quickly

 

Sorry to hear of your suffering Gl0w0ut. I am new at this. Been at it for four months and the despair can be palpable. I wake up most mornings and it takes me quite a lot of time to get going due to sadness and depression. Its not pleasant to have the first thing you hear be a loud hissing noise.

However I agree with others that we must endure if we can. I am very much an "in my own head" kind of guy, I prefer peace and solitude and deep thought... T has already wrecked that for me in terms of not being able to relax like I used to.

I live alone and don't have partner/children to keep me "distracted" and I'm unlikely ever to, distracting myself from thoughts of my own life and what it may become is not easy.

Its a grim notion to me at the moment and I don't know how I am going to feel at my 1 year mark, especially if my T gets a lot worse than it is right now.

Do I have fears for the future? All the time... I am hoping however that once I get further down the diagnosis/treatment route that the things like maskers/hearing aids will be applicable to me and help me out.

Am I likely to hear silence again? Kind of doubt it.

I recall reading on this forum that some people have split their lives into before T and with T. Comparing what you once were with what you are now is the fastest way to depression. No matter how much we may want to, it seems to me to be better to live in the here and now, mentally speaking. As much as we can.


I cannot yet speak as to the validity of TRT, masking, hearing aids etc as I am still very new into this, however there are great many on this forum who say that they are a great help to them. So I don't think that objectively speaking, these things are of no help. They are not a straight up cure but aids to help get us through the day.

I can understand frustrations over coping mechanisms rather than curatives... I really can... I think we all want this to go away... T is horrible, I am learning this rapidly. I would instead say that both are equally valid and though we would all prefer the latter, the former can be of great assistance to a great many people.

To deal with T I think one has to develop an iron will.

I do however believe you are wrong about no one caring... we care about each other here on this forum. Is it much help in terms of a physical cure? No...

but support is what this forum is for. Its a bit of a cliche... but you're not alone in all this...

Humanity has always been tribal in nature, we here are the tinnitus tribe we can at least take comfort in each other if nothing else.

Look at how positive people like Fishbone are, despite the nature of his T and other maladies. Inspiring. At the end of it all, its down to each of us to fight our way to some kind of tolerable "norm."

No matter how long it takes, no matter how hard we have to fight...

Take care.

 

The sad part is that people care to a certain point, after that, there's no help coming. That's the killer part and which can make someone depressed in the first place. Before tinnitus, I never had any issues with mental health and I always thought that when you would face problems with your mental health, there would always be serious and careful help. Like there has to be, right? What about all those campaigns and such? Certainly people wouldn't half-ass and take advantage of something serious as mental health, right? Nope, I was wrong, it's all phoned in like fucking everything else. From that point on, you have seen something that cannot be unseen and you've learn that you are on your on in this world, there isn't a real safety net. When I mentioned "Ignorance is bliss" in an earlier thread, this is what I meant. I'd much rather not know the truth.

 

Great post @Alex F .
Giving up is not an option for me, though I have to admit there are times when I’ve thought about it.
I am part of a truly wonderful family that has been struck several times by cancer, that took away both a lovely daughter, and her loving husband, our son in law.
My beautiful wife battled breast cancer and ovarian cancer, and another daughter battled breast cancer.
We are a big family with several children and grand children. We all support each other.
Failure is not an option for me.
I WILL NOT concede failure.

That said, living with noise which is intrusive is horrible, but I tend to treat each day as a new experiment, to see if I can come up with better coping methods.

Largely speaking, Tinnitus is an unknown quantity to the public in general.
They have no idea of the degree of torment and suffering we have to tolerate.
We are all reluctant heroes!
I truly value this site, the way we all try to help and encourage each other.
Recognition and companionship can not be overestimated.
Best wishes to all,
love
Jazzer x

 

@Jazzer

Thanks. Yeah, that's pretty much my attitude as well.

There is a difference IMO between being passive and active.

Am I terrified for my future... yes I am... I am not a wall of stone in any sense but at the same time I am determined to survive. To endure.

Its all we can do. Giving up is not an option. When you feel there is no hope you try and make your own.

Some people, such as yourself, its family that keep them going, for others, its other things...

Sorry to hear of your family struggles. Lost my grandmother last week. Grieving and having T at the same time and being terrified for your own future is not fun.

Stoicism is not something that one just "gets," it is developed over time and even then it is not a be all and end all cure for negative thinking or sadness, it just helps you keep things in perspective.


BTW: Glad to meet a Jazz musician. I am a big fan of Trad Jazz and Big Band. Played Trombone as a teenager. Bought a P bone later in life (I'm 34 now) and mess around with it on occasion now and again. Love music, in part I think its what got me into this mess...

 

@Alex F- ‘Wow’ fancy meeting another jazzer on here - let alone a ‘bonist!
Nice to meet you old sport.
I’m in the south London area - Warlingham Surrey. Can I ask where you are?
There are a couple of clips of my playing on here somewhere, in conversation with @Kolisar - but I don’t know how to direct you to them.
Perhaps Kolisar will know, if you’re interested.
Stay in touch mate.
Jazzer x

 

A good jazz session with a bottle of merlot, puts me and my dates into our elements

 

Likewise a pleasure, alas I was never that good but I enjoyed playing with my local Brass Band and school orchestras for many years.

Always admired musicians who can master Jazz and its always great to hear it live. Have heard a lot in the UK over the years... The Temperance Seven, Humphrey Lyttleton, George Melly.

Listening to some Acker, Ball and Bilk to cover the T this evening! It can be quite frustrating sometimes when your favourite musicians often died decades before you were born.

Have to say though I like many Jazz musicians, Bix Beiderbecke is probably a firm favourite...

Sure if Kolisar could link me I'd love to hear your playing. Any clips on youtube? Band name I could look up?

I'm in the North West of England, Merseyside but I grew up in the Midlands. Southport had a Jazz festival for many years but alas it stopped a while back.

 

@Gl0w0ut
Im sorry to hear your having a tough time coming to terms with tinnitus and I Totally understand just what a struggle it is just to get through each day and how tired you get from having to push hard to get through each day.
Life can suck at times and I always think why me whom has other heath issues that are life threatening and my twin and sister and brother are fine,im like a defect...
Life is a struggle but I am dam well going to push hard for the life I deserve as im a lovely person and it's a up hill battle but I know I will fight hard and enjoy everything I can on my life's journey what ever life throws at me...or live a yuck life.
Fill your life with as much love as you can and help others and gain happiness from it and make your life count for something.
It is so easy to give in but rewarding to achieve....
Love glynis xxx

 

I’ve found a couple of clips:

Struttin'

 

When You Wish Upon a Star

 

@Alex F - I played cornet in the local Salvation Army band from age 10 to 18, taught myself trombone, and then played bone ever since with:
Freddie Randall (70s)
Alan Elsdon (80s)
Laurie Chescoe (90s)
Tony Pitt (90s)
Depped with Terry Lighfoot - Temperance Seven.
Had my own band for six years.
Now play with the “Alan Gresty Ragtimers.”
Yes - I’m still at it, though trying to be careful with use of ear plugs.

 

@Alex F
Likewise - loved Bix from day one.
If you have a brass band experience Bix’s beautiful tone will get you every time.
But my god would be Louis Armstrong.

 

@Jazzer

Great stuff! Consummate professional I see!

Especially the Strutin.' Been a while since I've heard that one! A real foot stomper.

Great solo and your glissando is good to!

Also, is that b flat baritone in wish upon a star? Never seen one of those used in jazz before...

You've had a varied musical career, playing with Terry Lightfoot is nothing to be sniffed at.

Glad to hear you're still playing albeit more carefully. Well, if you ever tour as far as Merseyside... let me know

There truly was no one who played like Bix; incredible every time I hear him, his solos in "Riverboat Shuffle" or "Way Down Yonder In New Orleans" for example.

But yes, Armstrong is a god

 

Sorry - missed your question.
Yes a Bb Baritone.
It only ever takes a secondary back seat part in brass bands as you obviously know, but in fact possesses a quite superb tone, which lends itself to ballad play.
It’s also great for playing upward half-valve glissandos.
When I packed up cornet I wanted to maintain good valve technique, so I used both Baritone horn, and occasionally valve trombone.
Incidentally I love Bob Brookmeyer on v-tbn.
I did buy a P-bone to play about with for a bit, used it once on a gig (Savoy Blues) then gave it to a charity shop. Bloody hard work it was.
Did not want to resonate, or speak up.

 

Morning @Alex F - tend to agree with you re: stoicism.
No - it’s not the end of negative thinking or sadness. The adoption of a stoical attitude means that the need for ‘acceptance’ has been recognised.
When head noise starts up, the last thing we want to do is accept it. We hate it.
But we have to accept it, and try to take it easy, or life becomes ‘a running battle.’

For how long were you playing bone?
How did you find the P-bone after playing the real thing...?
I could make mine speak-up only by shoving a lot of air through it.
The worst part about it was that the slide
just ‘didn’t want to!’

 

Hello @Jazzer

Very true about the stoicism... choosing self control as much as possible rather than panicking is also I think in part the key to pushing towards living better. Seeing a thing for what it is and focusing on dealing with it rather than wallowing in "what ifs" and "what was," allows you to start reshaping your life and your perspective on it quicker.

Everyone is different, some people naturally have, or have developed over a lifetime a more stoic outlook, whereas others need more time to develop it.


I played Trombone for about 10 years, from aged 8 to 18. Then I left the Midlands for university and as my instrument was on loan from the brass band I played for, I obviously had to give it back.

The mouthpiece was mine, so I had that but over the years it got lost in moves from university to houses etc and ended up in a box somewhere in my flat.

It was a considerable amount of time before the "urge" for a trombone back in my life took me and then a friend mine told me about the P bone.

It was cheap and so I thought why not?

I'd forgotten everything, but as I began to play with the P bone old memory began to kick in and I started to remember what slide position was what. If you'd ask me to "learn" all this stuff now I probably would struggle but it was like instinct. I played bass clef back at school and if you put a piece of music in front of me that isn't too hard, I could probably eventually pick it up... but I am no where near the standard I was back then. My lip is still quite weak. Probably because I'm not having lessons or playing in groups, just picking it up and playing for pleasure now and again.

I admit I did indulge myself. I bought not only a practise mute but also a wah mute which I'd wanted a go on for years but never had the chance!


As for the the P bone itself. Yes you are right, it is not a patch on a real trombone. I think the point of them was to export them cheaply to poorer countries the give children the chance to play instruments, a very noble idea to be sure.

Its certainly doesn't have the richness of tone and the slide... yeah I believe I read one review from a trombonist who said that its like sawing logs! I quite agree with that!

Cost was an issue with me, so because most trombones I'd seen from Yamaha and the like cost upwards of a grand I was never going to get one. However there is a company called Coppergate, formed in the early 2000s I think, and they sold proper instruments for a reasonable price.

So after a time I bought a pedal F trombone from them. So now I have two trombones and I can use my old mouthpiece again

Oh the difference, slide as smooth as a babies bottom, and such a rich tone.

This was more in line with what I used to play. Its not as good as the bone I used to play, and I still need to get a few bit repaired... the pedal for one! but its a lot better than the P bone.

Its a good practise instrument to be sure but not one I would recommend performing with.