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

[AtlantaMarie]

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 I became withdrawn from life, avoided my friends, family, pretty much everything that took me out of the confines of my office in my house with a locked door.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.

 

[GregCA]

Welcome @AtlantaMarie - sorry that it's not in the best of circumstances.

Your post is dark, part of it because of rational thinking (your health situation), the other part because of irrational thinking ("all doctors have given up": it's not true, you've even done surgery and you got better, then ringing came back).

As someone who has been plagued with severe T for a couple of years, with little hope of getting better (I have a degenerative disease), I am sympathetic with your situation.

Have you done a hearing test recently? What does your audiogram look like?

If the ringing got better when your surgery happened, it means something changed that made the ringing go away: I would take that lead and explore further to determine the set of conditions post surgery that made it possible for the ringing to be absent. Was it the anesthetics? Was it that the surgery worked but it degraded back? I think it's worth digging a bit deeper.

Also, your prose makes me think you may benefit from CBT. Perhaps you could look into that?

Hang in there, and good luck!

 

[JohnAdams]

We wont give up on you.

 

[coffee_girl]

They haven't given up on you, their hands are just tied...there is no cure for T and the only treatment is habituation until a cure comes along. Hang in there, and don't give up hope

 

[glynis]

@AtlantaMarie ,
A warm welcome to Tinnitus Talk from me too ...x
Hearing aids are amazing now so find one that will amplify sound to your needs and a masker setting and if able afford a Bluetooth one even better.
With hearing loss if permanent loss then the tinnitus will be hard to go unless any surgery can help but as @GregCA says -look into it more regarding your operation.

We are all here for you around the clock so your never alone.
Keep posting for support and also to make friends whom understand what your going through.

love glynis x

 

[Bam]

You are sadly not alone @AtlantaMarie I'm sure others will tell you keep your chin up etc but I'm just going to be honest with you......

You don't know how that live like this. And don't know how anyone does. A cure seems light years away and it just seems inconceivable that you can do several years of this.

You're beyond sugarcoating the issue. You're not being mildly annoyed by the ringing......You're in ISIS burning in a f***ing cage territory with this disease.

The thing none of your family and friends realise is 1 year is a hell of a long lonely time in our world and only a fleeting stitch in time for them. They expect you to be patient and wait at least 3 or 4 years to see if you feel better, not realising that every day feels like a month living with this intensity of torture.

All I can tell you is what I told another member yesterday... I would like to commit to another year of life and see if I feel life is still not worth living.

If things are the same at that point, then I've done my best and I owe nobody anything. This may sound uncaring but if family etc can't understand the nightmare that what we are enduring each day, and don't respect that we don't want to suffer anymore, then I don't give a shit at that point about their feelings. I also don't care about what happens next and can't think about the pain, fear etc......I can't afford to. It's gotta business at that point. A cold, hard, calculated decision on quality of life.

After 2 years at this level, I will have endured a dismal lonely hell, worse than most terminally people suffer for even a few months. Nobody can ask anymore than that.

Maybe you can approach it like this too?

 

[Contrast]

How did you lose your hearing? I encourage you to look into the science and pre/ clincial research of hearing regeneration as a possible treatment in the near future 5-15 years.

 

[Wolfears]

You are sadly not alone @AtlantaMarie
After 2 years at this level, I will have endured a dismal lonely hell, worse than most terminally people suffer for even a few months. Nobody can ask anymore than that.

True words...the suffering people with severe Tinnitus experience at that level must be equivalent to suffering, which someone who is dying of terminal illness has to go through days or hours before death....except they are not dying.

This seems horribly wrong on so many levels.

 

[Bam]

@AtlantaMarie

No offence to Greg but your prose makes me think CBT will be wasting your money. I did 6 seasons with a top tinnitus guy.

Here's what he did:

Guy: so tell me your problem?

Me: my fucking ears ring.

Guy: yes. They do.....But you can still hear. Correct?

Me: yeah.

Guy: so that's a positive thing isn't it.

Me: yeah of course. But my fucking ears are ringing regardless of that.

Guy: but you could be deaf and you're not.

.......Seriously this shit I paid over a grand for.

 

[1000]

How did you lose your hearing? I encourage you to look into the science and pre/ clincial research of hearing regeneration as a possible treatment in the near future 5-15 years.

5-10, now 5-15... Why not 3-5?

 

[1000]

@AtlantaMarie

No offence to Greg but your prose makes me think CBT will be wasting your money. I did 6 seasons with a top tinnitus guy.

Here's what he did:

Guy: so tell me your problem?

Me: my fucking ears ring.

Guy: yes. They do.....But you can still hear. Correct?

Me: yeah.

Guy: so that's a positive thing isn't it.

Me: yeah of course. But my fucking ears are ringing regardless of that.

Guy: but you could be deaf and you're not.

.......Seriously this shit I paid over a grand for.

Oh nonnono. That's wrong

 

[GregCA]

@AtlantaMarie

No offence to Greg but your prose makes me think CBT will be wasting your money. I did 6 seasons with a top tinnitus guy.

Here's what he did:

Guy: so tell me your problem?

Me: my fucking ears ring.

Guy: yes. They do.....But you can still hear. Correct?

Me: yeah.

Guy: so that's a positive thing isn't it.

Me: yeah of course. But my fucking ears are ringing regardless of that.

Guy: but you could be deaf and you're not.

.......Seriously this shit I paid over a grand for.

I take no offense Bam, but what you are describing above isn't CBT.

 

[coffee_girl]

Suicide is drastic measures, exhaust every option...choose life if there is even a morsel of your existence that is worth living for...

 

[Bam]

Oh nonnono. That's wrong

You're telling me. This was $200 bucks an hour.

All these therapies I've tried have only reinforced my realisation that I'm fighting all alone in an expensive war against something nobody, but other severe sufferers understand.

 

[Bam]

I take no offense Bam, but what you are describing above isn't CBT.

True that. This guy was a joke. I would love to name and shame him cos as I said he's a well respected tinnitus doctor in the UK.

 

[Bam]

Suicide is drastic measures, exhaust every option...choose life if there is even a morsel of your existence that is worth living for...

Respectfully disagree.

A 'morsel of an existence' is not a happy fulfilling and content life.

The sooner the world starts to value quality of life over longevity the better because there's a shitpile of us living in hell and not given the appropriate choice because of pro life morons who don't understand the what it means to face daily suffering without relief.

 

[Vicki14]

clincial research of hearing regeneration as a possible treatment in the near future 5-15 years.

These timelines just make my heart sink.... just over 2.5 years with this crap and I'm reaching the end of my freyed rope!!!

 

[brownbear]

@Bam. No one else can really help (psychologists etc). The only way through is to find a way to dissociate yourself from the unbearable noise. You have to feel the desire to 'move on' welling up in you, intensely. For me it was like in the movies when a character has a series of flashbacks and a sudden realisation. You have two choices: to give up, or to say that tinnitus will not define you. There is no doubt this can be a horrible lonely condition, but it can get better. Don't set yourself timelines. You may have a different set of challenges in 10 years time, none of them related to the tinnitus you have forgotten about.

 

[Bam]

These timelines just make my heart sink.... just over 2.5 years with this crap and I'm reaching the end of my freyed rope!!!

Waiting or expecting a cure is totally futile. If you look at AOHL board it's full of 'keep going there's a cure coming in 2 or 3 years!' posts....and guess what....that was 10 years ago.

I know there's more research now but to pin your entire reason for carrying on suffering on it, is just asking to be crushed by disappointment each morning over and over and over again.

 

[Wolfears]

These timelines just make my heart sink.... just over 2.5 years with this crap and I'm reaching the end of my freyed rope!!!

Most average people are miserable when they have a bad flu for a week....
Majority of them can't even imagine what it feels like to have something 100x worse than that, every single day for years and years without any real prospects of getting better..

 

[Vicki14]

I agree @Bam and @Wolfears. I don't read any research stuff as a) I probably wouldn't understand it and b) it's unrealistic to 'hold on' for something that might possibly never be available. Negative, I agree, but I truly struggle to sugar coat this and say 'it's fine.... help is around the corner'. I think it's insanely brutal to expect a person to endure just ONE DAY with this yet alone a lifetime!! How can you wake up each day and be motivated and want to grab life by the b**** when you're carrying this overweight monster on your back?!!!!!!
I'm sure we all enjoyed our lives pre T and it's the pain and sadness of knowing 'how it should be' instead of what has become!!! This wasn't on my cosmic order!!!!! The frustration living with this vicious bully is enough to drive the sanest of person absolutely nuts!

I know how that the forum is full of 'hang in there' etc.... but that's all we truly have!!!

 

[Wolfears]

I agree @Bam and @Wolfears. I don't read any research stuff as a) I probably wouldn't understand it and b) it's unrealistic to 'hold on' for something that might possibly never be available. Negative, I agree, but I truly struggle to sugar coat this and say 'it's fine.... help is around the corner'. I think it's insanely brutal to expect a person to endure just ONE DAY with this yet alone a lifetime!! How can you wake up each day and be motivated and want to grab life by the b**** when you're carrying this overweight monster on your back?!!!!!!
I'm sure we all enjoyed our lives pre T and it's the pain and sadness of knowing 'how it should be' instead of what has become!!! This wasn't on my cosmic order!!!!! The frustration living with this vicious bully is enough to drive the sanest of person absolutely nuts!

I know how that the forum is full of 'hang in there' etc.... but that's all we truly have!!!

I don't really see that as negative, but rather realistic.

Yes the reality of Tinnitus is 100% negative...that is just the sad fact about this POS condition.

 

[Bam]

@brownbear Have you forgotten about tinnitus?

 

[Vicki14]

@Wolfears.... yep! Dangling tirelessly on the greasy windowsill every day ain't much fun.... I'm down to my last pinkie...!

 

[Wolfears]

@Bam. You have two choices: to give up, or to say that tinnitus will not define you.

I understand that your post is well meaning and written in good faith, so I mean no insult here.

But if someone puts a cattle prod against your scrotum, pulls the trigger and jams it in the "on" position for as long as you live (closest physical equivalent to the mental torture of severe tinnitus), would you still keep your resolve of not letting it "define you"?

 

[Bam]

@brownbear Look I'm not some morbid bloke who wants to die. @Jazzer has met me. I'm a lover of life and I had a great life to love before this crap struck. But the cold harsh truth is that some of us who have this bad need to face facts at some point......

If when all is said and done our life has been reduced to utter dogshit suffering day in day out for a prolonged period, we need to stop whining, stop expecting doctors to help us, knowing they can't and basically adopt an attitude that's more like those jihadi kids who show zero fear in blowing themselves up to achieve their goal......the only difference is they're crazy and their aim is to create suffering..... we are not and we want to end it.

 

[1000]

@brownbear Look I'm not some morbid bloke who wants to die. @Jazzer has met me. I'm a lover of life and I had a great life to love before this crap struck. But the cold harsh truth is that some of us who have this bad need to face facts at some point......

If when all is said and done our life has been reduced to utter dogshit suffering day in day out for a prolonged period, we need to stop whining, stop expecting doctors to help us, knowing they can't and basically adopt an attitude that's more like those jihadi kids who show zero fear in blowing themselves up to achieve their goal......the only difference is they're crazy and their aim is to create suffering..... we are not and we want to end it.

Bam how do you describe the tinnitus? How loud on a scale of 1 to 10? Do you have ear pain? Hyperacusis?

 

[Jazzer]

You may have a different set of challenges in 10 years time, none of them related to the tinnitus you have forgotten about.

Do you seriously think for one minute that after suffering a further ten years of all this Shite that she will have forgotten about it....??
Really ?.......REALLY ?!?!

 

[Bam]

Bam how do you describe the tinnitus? How loud on a scale of 1 to 10? Do you have ear pain? Hyperacusis?

Loud oscillating angle grinder cutting metal on left side and piercing dentist drill on right. Both similar frequency of around 13-14000 kHz. Audible 24/7 unless I'm in very noise rich environments with multiple competing sounds like a busy town centre.

But crucially and over and above the quality of the sound. As @Jazzer saw when he met me. I had a wonderful life which for the most part has been horribly vandalised. My peaceful walks in the famous parks on my doorstep with my dog, my lovingly crafted cabin in at the end of my garden which was going to be my peaceful writing space. The little reminders all over my house of my partner who is no longer there. Reminders of the job I can no longer do.

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.

So no @brownbear i will never 'forget' tinnitus. And I know you are well intentioned but you are also living a lie if you think everyone can just 'learn to live with it.'

 

[brownbear]

@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.