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

[Jazzer]

I hope he doesn't mind me saying this but he stood in my lovely home, which I was so proud of and worked bloody hard to buy, and have now been reduced to a visitor to as I have to rent it out to tourists to stop the bank from taking it from me.......And he stared at the big photo album in my kitchen with all the fun, love, adventure, happiness of my old life and sobbed.......Because he saw what we had both lost to this f***ing condition.

We are brothers Bam,
I just wish it could all be so different for us both.
xx

 

[Steve]

At some point soon, it might be nice if instead of highjacking a thread from someone in need to talk about yourselves, some people actually tried to offer some support.

 

[coffee_girl]

@Bam, @Jazzer @Wolfears. So sorry I mean no offence.

Read my posts, there aren't that many, I know what you are experiencing. You are most likely right and I am am just convincing myself. I'm not afraid to sign off over tinnitus, I only hung around for others. Maybe I need a reality check. No doubt you guys have it worse than me. I'm so tired of this too. What's the point. Good luck and best wishes.

The reality is that suicide doesn't have to be the answer, there is so much beauty in the world...and so much to see before you go.

 

[Bam]

@brownbear

No offence taken whatsoever. We're all big boys we can all handle conflicting opinions. It's an open debate. I read your posts. You've come a long way. Well done. Your resilience is admirable.

I'm not writing myself off yet either by the way. But I think sugarcoating severe T when people post about being suicidal is not helping them and is actually counterproductive. I think of this quote.... 'to not have your suffering recognised is an almost unbearable form of violence.'

 

[Wolfears]

@Bam, @Jazzer @Wolfears. So sorry I mean no offence.

Read my posts, there aren't that many, I know what you are experiencing. You are most likely right and I am am just convincing myself. I'm not afraid to sign off over tinnitus, I only hung around for others. Maybe I need a reality check. No doubt you guys have it worse than me. I'm so tired of this too. What's the point. Good luck and best wishes.

It's all good bud...I know you were just trying to help.

 

[Bam]

At some point soon, it might be nice if instead of highjacking a thread from someone in need to talk about yourselves, some people actually tried to offer some support.

Being honest Steve. I see your point but don't underestimate the power of recognising someone else's suffering. Surely that is better than platitudes and numbers for the Samaritans?

 

[JasonP]

This year has been the worst year of my life. I lost my hearing in December, then the high pitched ringing started right away. I went to three ENTs and they all said I had tinnitus and it would get better. And I should probably get a hearing aid, three weeks after I was diagnosed. Things didn't get better, they got worse. I became withdrawn from life, avoided my friends, family, pretty much everything that took me out of the confines of my office in my house with a locked door. If I did leave, I wore ear plugs.

I finally found my way to UCLA, had SCD. I had surgery in may and I got better, then the ringing came back with a vengeance. I went to Duke to see a specialist to treat the tinnitus, and he offered a therapy I should try. He sent me back to Emory and said I should be able to get it there, turns out there is not a single clinic in Georgia offers it.

I called Duke back to see if I can do the therapy up there, and he suggested I just get a hearing aid and I can go that in Atlanta.

Everyone had given up on me. I think it's time to give up on me too. I feel like I have been given a death sentence and I can't get any relief. Tinnitus has destroyed my life. I am so tired of searching for answers, all I do is cry. I wish I could sleep and never wake up. Every little sound keeps me up at night because my ears won't stop ringing.

I don't know where to go from here. I am just so tired of looking for answers. I feel like I have already died inside because there is nothing left in my life that make me happy because I am constantly running from noise. I can't take it anymore.

Please get a hearing aid with good masking sounds. It can really help. Also I would suggest taking some things to help you feel better or calm you. Right now I am taking flaxseed oil and I think it is helping me feel better. I'm not sure why exacerbated I think it's either because of the omega 3 fatty acids or that it is helping my intestines which have a huge effect on my mood. I also have sometimes taken lithium orotate which can be calming. People sometimes use it that for bipolar because it can help their moods. Exercise also can help. Please don't give up.

 

[AtlantaMarie]

Thank you all for the kind words. @Bam your brutal honesty is what I needed. You're right, I don't know how to live like this. The ringing gets so loud sometimes, I feel like the is a referee blowing a high pitched whistle in my ear 24/7. It keeps me awake at night because it so loud.

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.

I used to be social, loved being around people and going out to have fun. I have always had a passion about everything I do in my personal and professional life. Now I can't stand having a conversation because I know the next few days will he torture.

What is frustrating, is there are therapies out there that I have not tried. I want to try them, but physicians either have a bias against them or they don't offer it. So far the only thing that keeps my sanity in check is listening to Vivaldi on noise cancelling headphones. The violin drowns out the ringing.

@Bam I agree, I need to stop waiting for the right doctor t come along and help me. Had I done that, I never wouldfeed have fond my way to UCLA and been diagnosed with scd. I had a legitimate hole in my head!

I got a not so great call this morning from Duke and that is what set me in a tail spin. Now that I have though about it all day, and after reading all your posts, I am mad at myself for thinking that there is a doctor who gives a schiest and genuinely wants to help.

Thank you all for the pick me up, and swift kick in the arse for throwing a pity party! It was needed, and tomorrow is a new day. And as my father used to say when I was grounded for staying out too late (cough cough), he always said tomorrow is the first day of the rest of my life.

I have no scrotum for a cattle prod and my tinnitus may define me, but if. I can have the strength tell the next person in my shoes life goes on, welcome to the club, then I will practice what I preach. My passion is my purpose. I may still fell like crap tomorrow, but at least I have a little hope that I can do this.

4 moths ago I cold not take a shower without ear plugs, dry my hair, hold a phone up to my right ear, or be in a hotel for more than 30 seconds before I was throwing up because of the noise from the fan. The dryer, dishwasher, outdoor fans, vacuum cleaner, to name a few, was torture. I can tolerate it now so I guess I need to be thankful for some improvement.

Thank you again all, I am hoping to be part of this more often. Your words helped more that you realize!

 

[Vicki14]

@AtlantaMarie

I'm so glad that BAMs brutal honesty has helped you somewhat. There's no pretending that this is acceptable and we are 'cool' with it. When you see others get on with their lives and seem to cope with Tinnitus it makes you feel like your losing to it's vicious grip which makes you feel more hopeless. The energy and effort this takes to get through each day is physically and mentally exhausting and you do feel VERY ALONE with only this noise pointing a gun to your head every second of the day. It's truly amazing that we have this forum to help and support each other during our darkest moments when our family and friends can't possibly understand the extent of this horror. I really hope you have many better days ahead! Xx

 

[Vicki14]

I hope he doesn't mind me saying this but he stood in my lovely home, which I was so proud of and worked bloody hard to buy, and have now been reduced to a visitor to as I have to rent it out to tourists to stop the bank from taking it from me.......And he stared at the big photo album in my kitchen with all the fun, love, adventure, happiness of my old life and sobbed.......Because he saw what we had both lost to this f***ing condition.

@Bam This is heartbreaking and I'm so sorry things have changed so dramatically for you. This existence is absolutely crazy and surreal..... I hope to God that we are all strong enough to endure a 'reasonable' quality of life! X

 

[Bam]

@AtlantaMarie It was a legitimate pity party. Dont blame yourself for that. I am not afraid to speak of my frustration and sense of utter powerlessness as I watch this screaming tsunami rip my life apart.

Here's the rub.......You had a great life filled with blessings and now you don't because a totally unexpected and incurable brain disorder turned it in to a living nightmare.

The anxiety,fear and frustration of this is overwhelming every part of your being. You are watching your old life fall apart and thinking in disbelief how?....How is this happening? And the world doesn't even care!

You are also in deep painful grief for the carefree and fun life you've lost. And after a year you've realised that this is real and you are not just going to wake up and everything be back to normal.

The only way forward in my opinion is for the next year, adopt the attitude of total war.

This means you forgt who you were before, forget the fun easy hassle free life. That's gone. You are now a T mercenary and the only enjoyment you are going to have to settle for at the moment is getting up and grinding out each torturous day to the best of your abilities knowing you're battered and bruised as hell but you're one of the toughest people on the planet. And that's not smoke up your arse, that's fact. Severe T and isolation for a whole year?!? SAS soldiers, tough men, have only lasted one night in these circumstances before breaking. You're really really f***ing strong. Trust me.

You can still tuck away that idea of knowing that if further down the road you decide enough is enough, it will be on your terms and you will decide when and where to take this piece of shit out, once and for all......And again nobody can judge you for that.

 

[Bam]

@Bam This is heartbreaking and I'm so sorry things have changed so dramatically for you. This existence is absolutely crazy and surreal..... I hope to God that we are all strong enough to endure a 'reasonable' quality of life! X

Thanks Vicki. You're a sweetheart.

This is why I will never accept the whole 'coping' industry approach. If this shit hits the wrong person, at the wrong time and is severe and constant it can reek more emotional havoc on a life than any other disease bar none. That is indisputable fact. And anyone that gives me the 'you could be in a wheelchair' or 'you could have motor neurone' my response would be.....I would adapt just fine to the first and when the second gets even half as bad as severe T I will get a fully supported way out.

 

[Jazzer]

At some point soon, it might be nice if instead of highjacking a thread from someone in need to talk about yourselves, some people actually tried to offer some support.

Got it Steve - and I understand your point.
However it seems that @Bam 's words did in fact help @AtlantaMarie considerably.
His honesty and integrity are such a breath of fresh air on here to all those of us that truly suffer.

We don't want the chocolate eclairs to be passed round over coffee, as we all look at pretty pictures of beautiful butterflies.
(....no offence to either butterflies, or chocolate eclairs, come to that....)

I personally will try to stay more on topic, but you must remember we are all just perfectly normal human beans, (well, apart from our brains and lug'oles) and pain and passions sometimes come to the surface.
However - I will never argue with you Steve,
.....you're a big swine!
Best
Dave x
Jazzer

 

[Bam]

However it seems that @Bam 's words did in fact help @AtlantaMarie considerably.

Sometimes the only support we can offer is to fling open the window of our suffering and let someone else see their pain reflected in it.

 

[Ed209]

Thank you all for the kind words. @Bam your brutal honesty is what I needed. You're right, I don't know how to live like this. The ringing gets so loud sometimes, I feel like the is a referee blowing a high pitched whistle in my ear 24/7. It keeps me awake at night because it so loud.

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.

I used to be social, loved being around people and going out to have fun. I have always had a passion about everything I do in my personal and professional life. Now I can't stand having a conversation because I know the next few days will he torture.

What is frustrating, is there are therapies out there that I have not tried. I want to try them, but physicians either have a bias against them or they don't offer it. So far the only thing that keeps my sanity in check is listening to Vivaldi on noise cancelling headphones. The violin drowns out the ringing.

@Bam I agree, I need to stop waiting for the right doctor t come along and help me. Had I done that, I never wouldfeed have fond my way to UCLA and been diagnosed with scd. I had a legitimate hole in my head!

I got a not so great call this morning from Duke and that is what set me in a tail spin. Now that I have though about it all day, and after reading all your posts, I am mad at myself for thinking that there is a doctor who gives a schiest and genuinely wants to help.

Thank you all for the pick me up, and swift kick in the arse for throwing a pity party! It was needed, and tomorrow is a new day. And as my father used to say when I was grounded for staying out too late (cough cough), he always said tomorrow is the first day of the rest of my life.

I have no scrotum for a cattle prod and my tinnitus may define me, but if. I can have the strength tell the next person in my shoes life goes on, welcome to the club, then I will practice what I preach. My passion is my purpose. I may still fell like crap tomorrow, but at least I have a little hope that I can do this.

4 moths ago I cold not take a shower without ear plugs, dry my hair, hold a phone up to my right ear, or be in a hotel for more than 30 seconds before I was throwing up because of the noise from the fan. The dryer, dishwasher, outdoor fans, vacuum cleaner, to name a few, was torture. I can tolerate it now so I guess I need to be thankful for some improvement.

Thank you again all, I am hoping to be part of this more often. Your words helped more that you realize!

I totally understand everyones point of view. Tinnitus stole my music career from me, and for a long time it stole my happiness and my will to even get out of bed. Make no mistake, this condition can take a hardened human being, brake them down, and have them crying on their knees in a heartbeat. One day everything can be amazing and the next you're wondering how the hell you're going to function. Saying it's a shock to the system would be a monumental understatement in my opinion.

As many of you know, I was very suicidal in the past after a failed chest surgery to correct a condition that plagued my teen years. Those were incredibly dark times for me and something that has left a lasting mark on my life. When tinnitus came along I felt the same kind of depression; something so bad that I never thought I'd experience it again. In some respect, I believe my past helped me deal with it, because I had already come through something that I thought was impossible. It made me reevaluate my catastrophic thoughts - because somewhere deep down - part of my brain was screaming at me that we've been here before and that these thoughts aren't always the truth.

I have a screaming dentist drill in my brain which is around 12khz-14khz, a pure tone in my right ear, a lower drone in my left ear, and static underneath it all. I can hear it almost everywhere. It's a cacophony of noise. However, my emotional reaction really is completely different and I no longer technically suffer with it, but I still can't risk playing live music, so it's still taken something from me.

Some may not believe my story but that's up to the individual reading this. I know it's true and that's all that matters. What I will say is never give up hope no matter how long you've had this condition for, and there's always the chance of an effective treatment in the coming years. Love and support from friends and family is vital, so don't hide your emotions: connect with people openly and honestly. Never bottle up your suffering, let them know.

 

[Greg Sacramento]

As many of you know, I was very suicidal in the past after a failed chest surgery to correct a condition that plagued my teen years

You done well ED and it does take about a year to make the progression that you did.

 

[Jazzer]

and so much to see before you go.

...and so much Tinnitus to hear
before you go..!!!

 

[Jazzer]

No doubt you guys have it worse than me.

My dear @brownbear
I appreciate that everybody wants to be supportive, and I really do value that.
However there is a massive disparity in the noise, pitch, volume, intensity, and consequent suffering in members, across the forum.
A nice little 'pep talk' may help some, and drive others mad.
Best wishes bud,
Dave x
Jazzer

 

[Ed209]

You done well ED and it does take about a year to make the progression that you did.

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!

 

[Ed209]

I also find this quite powerful.

 

[Wolfears]

Thanks Vicki. You're a sweetheart.

This is why I will never accept the whole 'coping' industry approach. If this shit hits the wrong person, at the wrong time and is severe and constant it can reek more emotional havoc on a life than any other disease bar none. That is indisputable fact. And anyone that gives me the 'you could be in a wheelchair' or 'you could have motor neurone' my response would be.....I would adapt just fine to the first and when the second gets even half as bad as severe T I will get a fully supported way out.

Before Tinnitus, I would use the "wheelchair" thing to get me through the day when it was really bad.
"At least I'm not in a wheelchair" I used to say to myself..and it helped.

But after being introduced to the evil piece of sh*t called Tinnitus, I could no longer say that.

I honestly can't think of anything worse than severe Tinnitus, aside from catastrophic Tinnitus.
People will always say, that there are worse things out there...
They will usually name off some rare medical conditions, right along with terminal cancer, chronic pain..etc.

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.

I think the whole "you could be in the wheelchair" needs to be changed to "you could have debilitating Tinnitus".
Because there is NOTHING worse in life than 24/7 screeming inside your brain, coupled with the anxiety of having no place to turn to get relief...nothing.

 

[Ed209]

I also realise that all this sunshine and roses crap is hard to swallow when you're at the depths of despair. If I could go back in time and read this I'd likely think he can shove that advice up his arse!

 

[brownbear]

No doubt you guys have it worse than me

@Jazzer. I was being sarcastic. It would take a lot to convince me that someone had significantly worse T than me actually. Bear in mind I hear people describing their T in detail all day.

 

[Bam]

@Ed209 you're a positive character. Nothing wrong with that.

However I was just listening to Joe Simpson of 'Touching the void' fame on radio 2. This is a man who nearly died on a mountian and had to sacrifice his friend to survive.

He was asked what 'makes us human?'

He explained that when a deer breaks a leg it is genetically programmed to lay down and accept its inevitable fate of being eaten by a predator.

Whilst a human when it breaks a leg will project its mind toward a future where it will heal and they will be free or pain....and happy and content again.

In a nutshell he explained that it is the possibility to conceive of a future happiness and to plan and build toward it that makes life bearable.

.....Chronic tinnitus basically shits in the face of what it is to be human.

 

[Ed209]

you're a positive character. Nothing wrong with that.

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.

 

[Ed209]

@Jazzer. I was being sarcastic. It would take a lot to convince me that someone had significantly worse T than me actually. Bear in mind I hear people describing their T in detail all day.

I remember reading your posts when I was on a train to London to see a plastics consultant, brownbear. Your suffering had a lasting impact on my memory (you were debating with Michael Leigh at the time) and seeing how you are doing now is quite incredible. Suicide became a very real thing for you so I'm really glad to see you posting a positive story. In many instances, a story like yours would disappear into the ether never to be told (or heard). It takes a caring person, in my opinion, to come back and reassure others that you are doing ok. Normally, when a particularly severe sufferer stops posting, everyone presumes they are dead almost immediately.

In order to have any hope of overcoming tinnitus (not matter how bad it is) we need to get our headspace out of the tinnitus bubble. It's all too easy to take in everyone else's pain and add it to our own. It's always said, that if your are exposed to others' suffering on a regular basis, you will likely need therapy yourself to properly assimilate what you've been exposed to.

Anyway, I hope you don't lose faith @AtlantaMarie, as there are many people who do live normal lives with tinnitus. Take care of yourself

 

[Bam]

@Jazzer. I was being sarcastic. It would take a lot to convince me that someone had significantly worse T than me actually. Bear in mind I hear people describing their T in detail all day.

@brownbear you getting severe T given your line of work is like a sick cosmic joke. You have my sympathies friend.

If you don't mind me asking......I know you've been 'Mckenna'd ' but whatever you say it can't be a 'pleasant' upgrade to your existence having loud T so how would you rate percentage wise the hit on your current quality of life?

 

[DebInAustralia]

This year has been the worst year of my life. I lost my hearing in December, then the high pitched ringing started right away. I went to three ENTs and they all said I had tinnitus and it would get better. And I should probably get a hearing aid, three weeks after I was diagnosed. Things didn't get better, they got worse. I became withdrawn from life, avoided my friends, family, pretty much everything that took me out of the confines of my office in my house with a locked door. If I did leave, I wore ear plugs.

I finally found my way to UCLA, had SCD. I had surgery in may and I got better, then the ringing came back with a vengeance. I went to Duke to see a specialist to treat the tinnitus, and he offered a therapy I should try. He sent me back to Emory and said I should be able to get it there, turns out there is not a single clinic in Georgia offers it.

I called Duke back to see if I can do the therapy up there, and he suggested I just get a hearing aid and I can go that in Atlanta.

Everyone had given up on me. I think it's time to give up on me too. I feel like I have been given a death sentence and I can't get any relief. Tinnitus has destroyed my life. I am so tired of searching for answers, all I do is cry. I wish I could sleep and never wake up. Every little sound keeps me up at night because my ears won't stop ringing.

I don't know where to go from here. I am just so tired of looking for answers. I feel like I have already died inside because there is nothing left in my life that make me happy because I am constantly running from noise. I can't take it anymore.

Then stop running.

CBT mindfulness may help. I know my turning point was when I did just that.

 

[brownbear]

@ Bam - that depends when you ask me still to be honest. When I'm occupied at work or doing things I enjoy at the weekend I'd say my T affects me very little (1/10 slightly annoying). When I am doing things I don't enjoy (long journeys, parties I don't want to be at etc) then it bothers me more, sometimes a lot more. Hard to sum it up, I have various problems (not health) to deal with in my life. The tinnitus isn't the biggest one currently.

 

[Bam]

I think the whole "you could be in the wheelchair" needs to be changed to "you could have debilitating Tinnitus".
Because there is NOTHING worse in life than 24/7 screeming inside your brain, coupled with the anxiety of having no place to turn to get relief...nothing.

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.