All of My Doctors Have Given Up — Think I Should Too

[Starthrower]

It's hard to do my job. I love my job, but some days I can barely put a sentence together. Ironically I am in charge of global marketing for a functional brain mapping company. I have spent my career helping others get the very best care and I can't seem to help myself.

@AtlantaMarie I also understand. When tinnitus hit me hard everything I was working towards was gone. I was just on my way into law school which was a life long dream. My path took me in a different direction which I would not realize until years later. This path formed my life today.

Maybe this path for you will lead you where you are needed and reading your job description...make a difference for many people understanding the brain.

I was also lost and disengaged from the world for quite a while. Every sound hurt and the loudness of the screeching metal in my brain left me lifeless.

I am here today over a decade now - but remember my first post back in 2002 and the person who took time to comfort me. Because of that I am alive.

 

[Bam]

Only today, I am, Bam. I'm aware this can change at any time. However, if we were talking three years ago you'd see I was no different to you. I was depressed as hell and saw no possible future at all. All I'm saying is, I'm the ghost of your Christmas future and I'm saying it is.

I don't even want you to be here Ed. I want you to f*** off!....I want you to be free of bloody tinnitus. I want you back in your band playing music and not giving this forum or tinnitus a second thought.

We all just want to move on. But T doesn't let you do that. Show me someone whose had this for a year or longer and doesn't have some form of PTSD or worry about their bloody ears, or volume of sounds and I will show you a liar.

At best this affliction leaves a nasty worrisome stain on people's lives I'm afraid.

 

[Starthrower]

We all just want to move on. But T doesn't let you do that. Show me someone whose had this for a year or longer and doesn't have some form of PTSD or worry about their bloody ears, or volume of sounds and I will show you a liar.

@Bam but we are still living. I do so to keep my friend's memory alive.

 

[Bam]

@Bam but we are still living. I do so to keep my friend's memory alive.

Star you have taken one hell of a beating over many many years from T. I cannot even begin to imagine how deep you have had to dig to go on. Truly remarkable.

 

[Greg Sacramento]

I can think, walk and talk when my T is severely loud, but I can't when I also have a very high loud pitch. I'm been getting a painful loud pitch again. @AtlantaMarie You mentioned possible treatments - I would go for it. Never give up.

 

[Vicki14]

I've posted this too many times already but I find it incredibly uplifting and it demonstrates the power of the human spirit:

@Ed209 Wow, what an inspiring post! Thank you for sharing! x

 

[Wolfears]

Which is why in Belgium and Holland every single year there are people with Tinnitus being 'put down' by doctors who recognise the above statement as the harsh reality that the NHS and BTA etc refuse to acknowledge.

If you don't believe me go on YouTube and watch: Allow me to die, euthanasia in Belgium. You will see a brave and compassionate father explaining to a room full of doctors etc that his son was beyond positive self talk and 'coping'. He had tinnitus so horrendous that he was being tortured daily and this was the most humane thing to be done. Simple as that.

Yes the forced positivity can only get you so far...at that level there is literally nothing that could be done to save you....
Being put down is the only way out at that point....very sad reality, that the NHS and BTA refuses to acknowledge.

 

[Ed209]

I don't even want you to be here Ed. I want you to f*** off!....I want you to be free of bloody tinnitus. I want you back in your band playing music and not giving this forum or tinnitus a second thought.

We all just want to move on. But T doesn't let you do that. Show me someone whose had this for a year or longer and doesn't have some form of PTSD or worry about their bloody ears, or volume of sounds and I will show you a liar.

At best this affliction leaves a nasty worrisome stain on people's lives I'm afraid.

Bam, I did move on. I came back for one reason, and that is to help people who are suffering or suicidal. As far as wanting to play in my band, that's how life works, if I dwelled on that I wouldn't be able to move forward. Sometimes we have no choice but to adapt. A paraplegic can't dream about being a rock climber anymore; or a biker; a horse rider etc. Our past life is exactly that, the past. We have to learn to cut the cord.

If we don't, we will never move forward and it will slowly eat us up. Nowadays, I pass on my knowledge to young and old students alike, and thrive on the fact that they go onto form bands and have success of their own. I got into photography, enjoy going to historical sites, exercise when I can, and derive great pleasure in bringing up my daughter. I now look forwards to what I can achieve and build in my future rather look backwards at what I've lost. What's gone is gone.

I had a choice; I either sank under the weight of my sorrow, or I swam and reinvented my life. Thankfully, I chose the second option because I was extremely close to choosing the first.

 

[Vicki14]

We all just want to move on. But T doesn't let you do that. Show me someone whose had this for a year or longer and doesn't have some form of PTSD or worry about their bloody ears, or volume of sounds and I will show you a liar.

Absolutely @Bam! We'd all much rather be living our lives, a million miles from where we are! It's the sheer frustration of not being allowed to do it - this evil dictator doesn't allow it!!!! We can't even go on fecking holiday to get a break as this s*** comes too! A permanent cloud above us!!

 

[Bam]

Bam, I did move on. I came back for one reason, and that is to help people who are suffering or suicidal. As far as wanting to play in my band, that's how life works, if I dwelled on that I wouldn't be able to move forward. Sometimes we have no choice but to adapt. A paraplegic can't dream about being a rock climber anymore; or a biker; a horse rider etc. Our past life is exactly that, the past. We have to learn to cut the cord.

If we don't, we will never move forward and it will slowly eat us up. Nowadays, I pass on my knowledge to young and old students alike, and thrive on the fact that they go onto form bands and have success of their own. I got into photography, enjoy going to historical sites, exercise when I can, and derive great pleasure in bringing up my daughter. I now look forwards to what I can achieve and build in my future rather look backwards at what I've lost. What's gone is gone.

I had a choice; I either sank under the weight of my sorrow, or I swam and reinvented my life. Thankfully, I chose the second option because I was extremely close to choosing the first.

You built your life on strong loving foundations Ed. This has served you well.

 

[Bam]

Absolutely @Bam! We'd all much rather be living our lives, a million miles from where we are! It's the sheer frustration of not being allowed to do it - this evil dictator doesn't allow it!!!! We can't even go on fecking holiday to get a break as this s*** comes too! A permanent cloud above us!!

I said this to someone the other day. If we were given a set date where this 'symptom' would gradually fade and ultimately disappear to never ever return this whole game would change.

Even if it was 5 years time. The improvement and knowledge we were healing and would eventually get 100% better, would be a huge mental boost.

......But we don't get that. We basically have nothing to aim for but 'you might get a bit more used to it if you're lucky.'........Oh okay that's great....Cheers!

 

[Jazzer]

I also find this quite powerful.

View attachment 22517

Yes - nice cozy words - lovely.
He did not however suffer with Tinnitus......

 

[Jazzer]

Life is hard, Greg, and I expect there aren't many of us on planet Earth that escape the wrath it can inflict upon us. Some hide it better than others, but I believe at some point in our lives, we all face adversity.

When I read stories like AtlantaMarie's, I wish I could do more. A lot more. However, I can only offer her hope and some reassurance that more-people-than-not carry on with their lives, with tinnitus, gradually, becoming less of a problem.

I've posted this too many times already but I find it incredibly uplifting and it demonstrates the power of the human spirit:



@AtlantaMarie, don't worry about what the Drs think. We all know here how debilitating tinnitus can be, but only you have the power to get yourself through this difficult time. I can feel your suffering because I was once you, and I saw no way out either. I felt suffocated by it. Nowadays, I no longer feel that way. Don't get me wrong, I have to live with the threat that it may get worse, but that's my anxiety speaking. My mind is like this picture a lot of the time!

View attachment 22516

Yes horrible disabilities no question,
but none of them have severe Tinnitus, as far as we know......?

 

[Ed209]

Yes - nice cozy words - lovely.
He did not however suffer with Tinnitus......

I personally find those words quite powerful.

Yes horrible disabilities no question,
but none of them have severe Tinnitus, as far as we know......?

There are many around the world with severe, chronic, tinnitus. I think you could find loads of people who would fit into that montage having climbed their own, personal, Everest. We are being presumptuous, however, because there is already a hearing impaired person in that clip. Who's to say none of them have a bad case of T?

All I'm saying is that nothing can be done about it. We have no choice but to face it head-on and adapt to the noise that we carry round with us. Don't empower it with negative emotions; nullify it by living your life.

I know that sounds like telling a depressed person to be happy, but it really is the best way to take the sting out of it. I have it blasting in my head 24/7, but I have little to no emotional reaction to it anymore. That's my story and experience and I'm only sharing it to help anyone it can. If it doesn't, people can freely ignore me; there are no hard feelings. I'm just showing the other side of the coin that is hardly talked about; and that is people living a content life with a cacophony of noise in their head.

 

[Bam]

Yes horrible disabilities no question,
but none of them have severe Tinnitus, as far as we know......?

Agreed. Again I repeat there is nothing on earth that compares to the relentless suffering of severe T.

I spoke to a fitness instructor in the park this morning as I was walking my dog in the lovely sunshine 'enduring' the day with about 1% of the enjoyment I used to have due to the screeching in my ears.

We chatted for a bit and he told me he was recovering from an ear ache and that it had been of a nightmare.

Given we were on the subject of ears I told him about my condition. He looked a bit uncertain...This was our exact conversation word for word.

Man: What you hear noises?

Me: Yup.

Man: When does it come on?

Me: It's constant 24/7.

Man: What? Shit. What is it like a ringing sound?

Me: No. It's like an angle grinder cutting through metal.

Man: Fuck off! No way! All the time?!?....And it won't go away?! You've got that for life?

Me: Yeah....Unless I'm very lucky.

Man: Fuck! No! I couldn't do that! I'm sorry that would be my worst nightmare. Oh fuck! Just thinking about that now is making me go cold. Shit man! I'm so sorry. That is awful. Oh mate....Shit. That's no life.

After our conversation I challenge anyone to offer this man a condition he wouldn't accept over what I have.

As @Wolfears said. Having your nuts fried by a cattle prod for the rest of your natural life is probably about the only thing that comes close.

 

[Jazzer]

I personally find those words quite powerful.



There are many around the world with severe, chronic, tinnitus. I think you could find loads of people who would fit into that montage having climbed their own, personal, Everest. We are being presumptuous, however, because there is already a hearing impaired person in that clip. Who's to say none of them have a bad case of T?

All I'm saying is that nothing can be done about it. We have no choice but to face it head-on and adapt to the noise that we carry round with us. Don't empower it with negative emotions; nullify it by living your life.

I know that sounds like telling a depressed person to be happy, but it really is the best way to take the sting out of it. I have it blasting in my head 24/7, but I have little to no emotional reaction to it anymore. That's my story and experience and I'm only sharing it to help anyone it can. If it doesn't, people can freely ignore me; there are no hard feelings. I'm just showing the other side of the coin that is hardly talked about; and that is people living a content life with a cacophony of noise in their head.

I wake up every day to that cocophany, and within minutes I know I have to 'double de-clutch' into a better mind set.

I have never been a quitter.
I have lived through total hell before.
I survived it.
I survived it by accepting a horrible situation for the reality of exactly what it was.

I always have, and always will look for a positive way forward. I do that now.
The only possible opportunity for healing is the acceptance of our current reality.

 

[Bam]

I personally find those words quite powerful.



There are many around the world with severe, chronic, tinnitus. I think you could find loads of people who would fit into that montage having climbed their own, personal, Everest. We are being presumptuous, however, because there is already a hearing impaired person in that clip. Who's to say none of them have a bad case of T?

All I'm saying is that nothing can be done about it. We have no choice but to face it head-on and adapt to the noise that we carry round with us. Don't empower it with negative emotions; nullify it by living your life.

I know that sounds like telling a depressed person to be happy, but it really is the best way to take the sting out of it. I have it blasting in my head 24/7, but I have little to no emotional reaction to it anymore. That's my story and experience and I'm only sharing it to help anyone it can. If it doesn't, people can freely ignore me; there are no hard feelings. I'm just showing the other side of the coin that is hardly talked about; and that is people living a content life with a cacophony of noise in their head.

And I promise that if I ever feel this 'neutral' attitude toward the noise, and feel 'truly happy' again in spite of it, I will report it honestly here.......and eat the humblest of humble pies.

 

[Wolfears]

As @Wolfears said. Having your nuts fried by a cattle prod for the rest of your natural life is probably about the only thing that comes close.

Since Tinnitus is affecting both sexes equally, thinking back I should have put more effort into making my statement gender neutral.

I think "anus" should be a fair substitute, since everybody has one...and I'm willing to bet, that anal electrocution is no picnic either.

 

[Ed209]

I just wanted to reassure @AtlantaMarie that having a bad case of tinnitus doesn't have to define your life. I hope you realise that people care, Marie, and I really believe - given enough time - that you will find your feet again.

Try not to let the vicious cycle of negative thinking take over.

 

[Vicki14]

To me terminal cancer comes with peace attached at the end of the torture (death) and I consider mental pain to be worse than anything physical.
When I first got it, I would gladly hack off all of my limbs, just to get peace in my head if someone offered me such trade.

Agree @Wolfears - as horrible as this condition is, with cancer there is at least some form of treatment and potentially a cure and if not, it's unlikely that you'll gonon suffering indefinitely, unlike Tinnitus which totally wrecks your head...

 

[Bam]

Agree @Wolfears - as horrible as this condition is, with cancer there is at least some form of treatment and potentially a cure and if not, it's unlikely that you'll gonon suffering indefinitely, unlike Tinnitus which totally wrecks your head...

This is controversial territory but as you all know, given a choice, I'm going to jump all over cancer.

I mean come on?!? Are you kidding me?! A proper fighting chance to treat it and recover?! And if it beats me I take a bow and off I shuffle. Game over. I don't suffer endlessly for decades.

No brainer. Unless I'm majorly missing something?

 

[Vicki14]

Even if it was 5 years time. The improvement and knowledge we were healing and would eventually get 100% better, would be a huge mental boost.

......But we don't get that. We basically have nothing to aim for but 'you might get a bit more used to it if you're lucky.'........Oh okay that's great....Cheers!

My view exactly @Bam. It's the whole soul destroying feeling of it doesn't matter what you do, where you go, what you eat, that monkey is still on your back! Yeah, we might get snapshots of 'nice' moments but at the end of the day when all is said and done... it's you v the demonic sound. It gets exhausting forcing positivity all the time but I get it's the only 'get out of jail' card we have with this...

I'd gladly surrender any form of social interaction to just to be allowed to function normally & enjoy day to day things. You feel like your standing at a train platform waving everyone off to their life whilst your stood there in the pissing rain without an umbrella.... To say it's tough is a HUGE understatement!

 

[Vicki14]

No brainer. Unless I'm majorly missing something?

Nope! I'd say you were spot on!

 

[Bam]

My view exactly @Bam. It's the whole soul destroying feeling of it doesn't matter what you do, where you go, what you eat, that monkey is still on your back! Yeah, we might get snapshots of 'nice' moments but at the end of the day when all is said and done... it's you v the demonic sound. It gets exhausting forcing positivity all the time but I get it's the only 'get out of jail' card we have with this...

I'd gladly surrender any form of social interaction to just to be allowed to function normally & enjoy day to day things. You feel like your standing at a train platform waving everyone off to their life whilst your stood there in the pissing rain without an umbrella.... To say it's tough is a HUGE understatement!

It's a total eclipse of all the little pleasures, that added up make life worthwhile.

 

[Vicki14]

I think it's just a case of accepting our now substandard life and 'somehow' moving on.... ringing skull in tow....

 

[Bam]

Nope! I'd say you were spot on!

Yeah I thought so......But again we're shackled to the societal value of quality of life being trumped by longevity at all costs .

 

[Ed209]

This is controversial territory but as you all know, given a choice, I'm going to jump all over cancer.

I mean come on?!? Are you kidding me?! A proper fighting chance to treat it and recover?! And if it beats me I take a bow and off I shuffle. Game over. I don't suffer endlessly for decades.

No brainer. Unless I'm majorly missing something?

With respect, Bam, you can't compare suffering like this. My uncle recently died of cancer and I was there towards the end and he suffered horrifically for long drawn out weeks.

I have a friend who has Friedrichs Ataxia and now ultimately heart failure because of that condition, and she is in and out of hospital non-stop. We nearly lost her not so long back. What she goes through is insanely cruel and I guarantee she'd swap with any of you in a heartbeat (I know I said you can't compare, but I know she would).

It's easy to lose sight of others' suffering when we have it really bad with chronic T. It can be torturous. However, be careful what you wish for as you only know what T is like. You can't really compare to what you have no idea about.

 

[coffee_girl]

Nothing is worse than cancer, sorry. I have seen a friend go through cancer and it is horrific and terrible in every possible way. The grass is always greener on the other side.

Every person deals with the affliction of tinnitus differently, one person's perspective is not another person's reality.

 

[Greg Sacramento]

I can't compare body and mind suffering levels. I know if I ever did when working within a trauma 1 level hospital I would be considered non compassionate and would be told to resign. Those that have trigeminal neuralgia can also have tinnitus. Those who have brain disease or brain tumors can also have tinnitus. Those with some forms of painful cancer can live for years with use of drugs that can also cause tinnitus. You will never see most of these sufferers posting on a forum talk board.

 

[Bam]

With respect, Bam, you can't compare suffering like this.

Not comparing....,,just stating a personal preference.

All I can say is this f***ing T I'm dealing with is so abhorrent to me in every way that If i woke up tomorrow shitting blood and the doctor ran the tests and the told me I had terminal bowel cancer I would hug him or her tightly, shed a few tears of relief and walk out of their office with a huge weight lifted off my weary shoulders.

I can't put it more honestly than that and I'm sorry if that's not in line with other people's beliefs on what is worse or not.