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

[Bam]

I honestly don't know what you lot are on.

I can only assume we're dealing with different conditions or completely alternately wired brains.

As I've stated before I watched both my auntie and uncle die of cancer.

My auntie died at home, was only really suffering for one month and was very well supported by Mcmillan nurses and family and although scared right at the end suffered minimal pain.

My uncle who had throat cancer had a tracheostomy was in the pub watching footie until two weeks before his death. He was drinking rum and coke In his pants and joking with us in the hospice a day before he died. He barely suffered at all and went out smiling.

Both lives happy full lives for over 65 years and would not have traded with me in a heartbeat....I can tell you that much!

You're all crackers.

 

[dpdx]

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.

I want to be euthanized for tinnitus and hyperacusis if it continues like this (same level) for years and years. We need to have this everywhere around the world. Either that or a treatment...….

 

[Ed209]

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

You can't have a preference when you haven't experienced the thing you're comparing it to. Chemotherapy frequently causes tinnitus, so people are left with both. I understand your frame of mind because I had the same misguided thoughts as you. You just can't compare. You have no idea what people with cancer have gone through/are going through, unless you have walked in their shoes.

 

[Bam]

You can't have a preference when you haven't experienced the thing you're comparing it to.

Errrr. Really??

Waiter: What are you having for dinner sir?

Me: I was going to have steak but I eat that everyday so my preference tonight will be something I've never had before.....Lobster.

 

[Wolfears]

I want to be euthanized for tinnitus and hyperacusis if it continues like this (same level) for years and years. We need to have this everywhere around the world. Either that or a treatment...….

It is not fair that the medical community will not offer a solution or at least a way out of the suffering.

This way one has to take chances at failing the suicide attempt and ending up maimed and with Tinnitus on top.
This strikes me as very wrong...
Either come up with a cure, or shut the fuc*k up with the pseudo humanitarian babble of having to survive at any cost and give people a decent, peacefull way out.

 

[Bam]

I want to be euthanized for tinnitus and hyperacusis if it continues like this (same level) for years and years. We need to have this everywhere around the world. Either that or a treatment...….

This is because you genuinely are dealing with very severe intrusive T. Anyone who is not has zero right to tell you this is an absurd desire.

No normal human being wants to live with piercing LOUD CONSTANT NOISE in their ears or head for countless years with zero relief, unless they have a massively strong desire to live which is usually associated with having children.

Until this 'coping fits everyone' belief is debunked and the noise torture reality firmly established, you will have to take up residence in Belgium to be taken seriously and not treated like a depressed mentally ill oddball @dpdx

 

[dpdx]

This is because you genuinely are dealing with very severe intrusive T. Anyone who is not has zero right to tell you this is an absurd desire.

No normal human being wants to live with piercing LOUD CONSTANT NOISE in their ears or head for countless years with zero relief, unless they have a massively strong desire to live which is usually associated with having children.

Until this 'coping fits everyone' belief is debunked and the noise torture reality firmly established, you will have to take up residence in Belgium to be taken seriously and not treated like a depressed mentally ill oddball @dpdx

How you holding up bud?

 

[Ed209]

I'm not sure how discussing euthanasia helps AtlantaMarie, to be honest. I understand that you're all suffering and know what you're going through, but it doesn't really help her.

 

[Jazzer]

You're all crackers.

Bam - you're my man,
and with a beautiful turn of phrase.

One thing is patently clear through all of this discussion.

Those people who do not have severe / catastrophic Tinnitus should not be making guesswork observations on a subject they are totally in ignorance of.
Their ignorance lights up in neon.

 

[Jazzer]

The 'Dignity in Dying' option should always be there.
Most would not opt for it, but there would be relief to know that it is at least available.

Suicide is not so much the tragedy.
Living with a tortuous condition for years is the real tragedy.

 

[Jazzer]

Forget Tinnitus for the time being,
Dignity in Dying should be there for
anybody that desperately needs it.

 

[kelpiemsp]

Well this certainly turned away from a support thread. @AtlantaMarie I highly encourage you to check out some of the research threads, you may find a nugget of hope. Also, there are many members on this site who have found relief while enduring the onslaught of loud and high pitched T. Please read up on their posts. All of our struggles are unique, our pain real. But that doesn't mean the pain from the noise has to be permanent.

 

[Bam]

I'm not sure how discussing euthanasia helps AtlantaMarie, to be honest. I understand that you're all suffering and know what you're going through, but it doesn't really help her.

I'll tell you how and I can't believe that you Ed as a smart guy who saw what Danny and countless others were forced in to, can't see this.....

If America and the U.K. adopted the view of Belgium and Holland when it comes to tinnitus suffering then people like @AtlantaMarie would know that they would never ever be forced in to a desperate act of self destruction which as @Wolfears pointed out can have even more disastrous consequences.

This would be a massive weight lifted and at least she's not having to stress over thoughts of suicide and potential failure.

Knowing that there is something however final, doctors can offer when you've really reached the end of what you can endure, would be a comfort to many of us.

Stressing and worrying about how we might have to kill ourselves due to an incurable medical condition is just not cricket I'm afraid.

 

[Bam]

Also, there are many members on this site who have found relief while enduring the onslaught of loud and high pitched T.

Anecdotally. None of us can know what the other really hears or puts up with.....all of us until a cure is found, should have the choice whether or not we want to live with it and that choice should be supported by doctors.

Contrary to popular belief this would save lives, yep you heard it. It would save lives. As the process takes many months, often years and allows a chance for T to improve, with the stress of suicide removed. If you don't believe me ask Wim Distellmans. People given the choice often change their minds.

Desperate 'I can take no more and nobody gives a shit' suicide......does not.

 

[Wolfears]

I'll tell you how and I can't believe that you Ed as a smart guy who saw what Danny and countless others were forced in to, can't see this.....

If America and the U.K. adopted the view of Belgium and Holland when it comes to tinnitus suffering then people like @AtlantaMarie would know that they would never ever be forced in to a desperate act of self destruction which as @Wolfears pointed out can have even more disastrous consequences.

This would be a massive weight lifted and at least she's not having to stress over thoughts of suicide and potential failure.

Knowing that there is something however final, doctors can offer when you've really reached the end of what you can endure, would be a comfort to many of us.

Stressing and worrying about how we might have to kill ourselves due to an incurable medical condition is just not cricket I'm afraid.

I second that sentiment....having to do it yourself is very stressful, because there is always a chance of failure and the consequences could be horrifying.

When I was first thrusted into this nightmare (which I previously never even heard off), it took me about 15 minutes of Google search to realize, how screwed I was.
After the realization that there is nowhere to turn, I set my exit date to 6 months from that day if it does not get better.
Not sure if any of you had a barrel of a 12 gauge shotgun inside your mouth, but trust me, it is not a good feeling, even when it isn't loaded.
This is how I used to "dry practice" in effort to desensitize myself for when I have to go "live".
To be honest, there is no way you can desensitize to that one, so I abandoned the practice runs, knowing that I will just have bite the bullet (no pun) when the time comes.

That one is pretty much 100% guaranteed, but I hate the fact that I would have to resort to something that drastic...lucky for me I did get better, but it could easily had gone the other way.

Being put to sleep and going out peacefully seems like such a better option, but those who make the decision would rather put their collective heads in the sand and pretend that this brutal, horrifying and inhumane torture of severe Tinnitus does not exist.
This is a big problem, which nobody really wants to talk about.

 

[Bam]

How you holding up bud?

Dude I'm fucking struggling like you. Lots of people get this disease as kids and they 'adjust' I guess. To get this pushing 40 and to try and completely unlearn the way I know how to live life is impossible. I have no fucking clue how to live like this!

It's like dumping someone on Mars with a sandwich and a flask of coffee and telling them to get on with it.

If this doesn't improve I want to cut my losses and be fucking euthanised. I do! Straight up. I have zero desire to live like this. And I'm pissed off no end when people expect me to. My brother wants me to do 2 years for prides sake. He gets it. He really does. He mentioned my T struggle to a guy we know in the same breath as another friend with terminal cancer. It made me feel better, my suffering not belittled.

So I'm going to try and do 2 years. What else can I do. But then if im still living like this, I'm sticking a fork in it mate.

 

[dpdx]

Dude I'm fucking struggling like you. Lots of people get this disease as kids and they 'adjust' I guess. To get this pushing 40 and to try and completely unlearn the way I know how to live life is impossible. I have no fucking clue how to live like this!

It's like dumping someone on Mars with a sandwich and a flask of coffee and telling them to get on with it.

If this doesn't improve I want to cut my losses and be fucking euthanised. I do! Straight up. I have zero desire to live like this. And I'm pissed off no end when people expect me to. My brother wants me to do 2 years for prides sake. He gets it. He really does. He mentioned my T struggle to a guy we know in the same breath as another friend with terminal cancer. It made me feel better, my suffering not belittled.

So I'm going to try and do 2 years. What else can I do. But then if im still living like this, I'm sticking a fork in it mate.

Tell me about it. I am 28 and didnt even have a chance to even buy a house, to travel, enjoy life, etc. I am still shocked that my life ended. I can imagine at age 40 when you have things, better not to have anything and get T and H.

 

[Bam]

Tell me about it. I am 28 and didnt even have a chance to even buy a house, to travel, enjoy life, etc. I am still shocked that my life ended. I can imagine at age 40 when you have things, better not to have anything and get T and H.

Oh bud there's never a good time with this. I've sufferer so much heartbreak since T started. I've lost so much of my life on every level. I wish it wasn't so.

...... But I feel your pain as you have been robbed of a chance to even properly get stuck in to life.

If there was a line for a cure I would happily do another year of T to let you get it first. Hearing about your freedom from this hell and how much you are loving life again would get me through the long days and nights until it was my turn.

Now you may not want to hear this but in my opinion you need to keep going for at least 3 or 4 years with this.

Now that's going to seem like an awfully long time but you're too young to lay down your guns until that point.

You will have my support to the bitter end @dpdx

 

[Bam]

I second that sentiment....having to do it yourself is very stressful, because there is always a chance of failure and the consequences could be horrifying.

When I was first thrusted into this nightmare (which I previously never even heard off), it took me about 15 minutes of Google search to realize, how screwed I was.
After the realization that there is nowhere to turn, I set my exit date to 6 months from that day if it does not get better.
Not sure if any of you had a barrel of a 12 gauge shotgun inside your mouth, but trust me, it is not a good feeling, even when it isn't loaded.
This is how I used to "dry practice" in effort to desensitize myself for when I have to go "live".
To be honest, there is no way you can desensitize to that one, so I abandoned the practice runs, knowing that I will just have bite the bullet (no pun) when the time comes.

That one is pretty much 100% guaranteed, but I hate the fact that I would have to resort to something that drastic...lucky for me I did get better, but it could easily had gone the other way.

Being put to sleep and going out peacefully seems like such a better option, but those who make the decision would rather put their collective heads in the sand and pretend that this brutal, horrifying and inhumane torture of severe Tinnitus does not exist.
This is a big problem, which nobody really wants to talk about.

Wolfie the fact that you plunged those depths and recovered, yet still pour your heart out and support those still in the fire, shows great character.

 

[dpdx]

Oh bud there's never a good time with this. I've sufferer so much heartbreak since T started. I've lost so much of my life on every level. I wish it wasn't so.

...... But I feel your pain as you have been robbed of a chance to even properly get stuck in to life.

If there was a line for a cure I would happily do another year of T to let you get it first. Hearing about your freedom from this hell and how much you are loving life again would get me through the long days and nights until it was my turn.

Now you may not want to hear this but in my opinion you need to keep going for at least 3 or 4 years with this.

Now that's going to seem like an awfully long time but you're too young to lay down your guns until that point.

You will have my support to the bitter end @dpdx

Yeah I graduated college and bam I was supposed to start working, living, saving up money, traveling, etc yada yada yada and this shit happens. Literally June 2017 graduation, September 2017 Tinnitus. Its scary that 1 year has passed, get that 1 year! I lost an entire year of my twenties to this, it scares me to think what else will I loose. I got PTSD from tinnitus/hyperacusis, you know I am afraid to open my mouth and speak because I know it will cause discomfort. Its truly terrifying.
You think 28 is too young. I got this at 27 hahahaaha….never too young. I will wait certainly for a cure/treatment.

 

[coffee_girl]

Yeah I graduated college and bam I was supposed to start working, living, saving up money, traveling, etc yada yada yada and this shit happens. Literally June 2017 graduation, September 2017 Tinnitus. Its scary that 1 year has passed, get that 1 year! I lost an entire year of my twenties to this, it scares me to think what else will I loose. I got PTSD from tinnitus/hyperacusis, you know I am afraid to open my mouth and speak because I know it will cause discomfort. Its truly terrifying.
You think 28 is too young. I got this at 27 hahahaaha….never too young. I will wait certainly for a cure/treatment.

You're always in my thoughts buddy, and i am happy to hear you are choosing to wait =]

 

[Ed209]

It is not fair that the medical community will not offer a solution or at least a way out of the suffering.

This way one has to take chances at failing the suicide attempt and ending up maimed and with Tinnitus on top.
This strikes me as very wrong...
Either come up with a cure, or shut the fuc*k up with the pseudo humanitarian babble of having to survive at any cost and give people a decent, peacefull way out.

I'm all for free speech and discussing these issues, but why is it happening here!? Create a new thread; this is for supporting people. There's nothing pseudo about trying to help people out of a hole when we share a common ground. Are you saying my significant suffering and torment never happened? I was churned up and spat out and went through an unthinkable amount of trauma. My T is on the louder end of the scale, constantly there with the most irritating sounds you can imagine. I'm pretty certain one could quite easily jump off a cliff with the noise I have. The difference in accepting this is often down to time, love, and the adaptability of the brain to ignore the extra stimuli on an emotional level. I'm not saying every person can reach this state, but we must try and help people see that this is a very real possibility; there are countless examples of it happening all over the world. At the moment there is no cure, so supporting others should be our primary aim, and to be as helpful as possible - it's especially meaningful coming from people who have direct experience of the torment it induces.

I see no positive in discussing ways to die on someone else's support thread. It's absurd. No matter how much I've suffered in the past that's one thing I'd never do.

I'll tell you how and I can't believe that you Ed as a smart guy who saw what Danny and countless others were forced in to, can't see this.....

That's exactly why I wanted to shake things up. I wanted to objectively help all the people who cannot be reached through other support methods and need a treatment. I don't want to see another tinnitus related suicide ever again, and I believe that all of us should strive to meet this goal (I've got to add here that Danny had other problems in his life so his death wasn't entirely tinnitus related and we still don't know his cause of death). Unfortunately, it seems I'm in the minority and no amount of campaigning is going to change that. I've done everything imaginable to get the message out there and to gain some traction, but people with tinnitus will not budge. We say it's really important to us, but most won't donate £1 towards curative research.

I stopped posting in the support forum because I knew some people were taking more offence, than actual help, from my messages when I tried to reach them. That's why I said 'I'm not trying to insult you' in my first reply to you on your return.

 

[Bam]

I'm all for free speech and discussing these issues, but why is it happening here!? Create a new thread; this is for supporting people. There's nothing pseudo about trying to help people out of a hole when we share a common ground. Are you saying my significant suffering and torment never happened? I was churned up and spat out and went through an unthinkable amount of trauma. My T is on the louder end of the scale, constantly there with the most irritating sounds you can imagine. I'm pretty certain one could quite easily jump off a cliff with the noise I have. The difference in accepting this is often down to time, love, and the adaptability of the brain to ignore the extra stimuli on an emotional level. I'm not saying every person can reach this state, but we must try and help people see that this is a very real possibility; there are countless examples of it happening all over the world. At the moment there is no cure, so supporting others should be our primary aim, and to be as helpful as possible - it's especially meaningful coming from people who have direct experience of the torment it induces.

I see no positive in discussing ways to die on someone else's support thread. It's absurd. No matter how much I've suffered in the past that's one thing I'd never do.



That's exactly why I wanted to shake things up. I wanted to objectively help all the people who cannot be reached through other support methods and need a treatment. I don't want to see another tinnitus related suicide ever again, and I believe that all of us should strive to meet this goal. Unfortunately, it seems I'm in the minority and no amount of campaigning is going to change that. I've done everything imaginable to get the message out there and to gain some traction, but people with tinnitus will not budge. We say it's really important to us, but most won't donate £1 towards curative research.

I stopped posting in the support forum because I knew some people were taking more offence, than actual help, from my messages when I tried to reach them. That's why I said 'I'm not trying to insult you' in my first reply to you on your return.

Hey just to be clear you cannot offend me Ed. I know you're a good guy with a kind heart. I accept all of this as 'banter' if you will. I have no beef with anyone or anything but T.

 

[Wolfears]

I'm all for free speech and discussing these issues, but why is it happening here!? Create a new thread; this is for supporting people. There's nothing pseudo about trying to help people out of a hole when we share a common ground. Are you saying my significant suffering and torment never happened? I was churned up and spat out and went through an unthinkable amount of trauma. My T is on the louder end of the scale, constantly there with the most irritating sounds you can imagine. I'm pretty certain one could quite easily jump off a cliff with the noise I have. The difference in accepting this is often down to time, love, and the adaptability of the brain to ignore the extra stimuli on an emotional level. I'm not saying every person can reach this state, but we must try and help people see that this is a very real possibility; there are countless examples of it happening all over the world. At the moment there is no cure, so supporting others should be our primary aim, and to be as helpful as possible - it's especially meaningful coming from people who have direct experience of the torment it induces.

I see no positive in discussing ways to die on someone else's support thread. It's absurd. No matter how much I've suffered in the past that's one thing I'd never do.



That's exactly why I wanted to shake things up. I wanted to objectively help all the people who cannot be reached through other support methods and need a treatment. I don't want to see another tinnitus related suicide ever again, and I believe that all of us should strive to meet this goal (I've got to add here that Danny had other problems in his life so his death wasn't entirely tinnitus related and we still don't know his cause of death). Unfortunately, it seems I'm in the minority and no amount of campaigning is going to change that. I've done everything imaginable to get the message out there and to gain some traction, but people with tinnitus will not budge. We say it's really important to us, but most won't donate £1 towards curative research.

I stopped posting in the support forum because I knew some people were taking more offence, than actual help, from my messages when I tried to reach them. That's why I said 'I'm not trying to insult you' in my first reply to you on your return.

Ed..I never once claimed your suffering has never happened...
Yes you are right, this thread slowly shifted onto a secondary issue (after the OP has acknowledged she was greatly helped by one of Bam's post), but still kind of on topic.
What to do when doctors give up and there is no help?
Sorry didn't mean to offend you, just in case you took it the wrong way.
This thread will likely naturally wind itself down soon anyway.

 

[coffee_girl]

I think everyone should have their opinion even if it is going to upset people, it is their view after all and as long as they yield to the same effect when other's post an opposing perspective...then i don't see a problem.

We are all adults, and whatever choice we make in life is ultimately our own responsibility

 

[dpdx]

You're always in my thoughts buddy, and i am happy to hear you are choosing to wait =]

thnx

 

[grate_biff]

Every person deals with the affliction of tinnitus differently

Or we are differently stricken by it. As much as cancer is not CANCER. Tinnitus is not TINNITUS with or without hyperacusis and HYPERACUSIS!

 

[Bam]

@kelpiemsp maybe you find this funny. But trust me when I was discussing the possibility of renting a house in Belgium with Mr Distellmans and my devastated family so that I could begin the process of applying for euthanasia on grounds of psychological suffering.....none of us were laughing.

I'm sure it's very easy for people like yourself who have had some form of this since childhood to be astounded by the suffering, perhaps even sneer loftily, at people like me and the OP who have suddenly been hit hard by this in our middle age and can neither trust themselves, or desire to, to live with it.

But maybe try and imagine waking up tomorrow and losing your family, your home, your job, all your friends, your peace ......before you cast glib aspersions.

 

[kelpiemsp]

@kelpiemsp maybe you find this funny. But trust me when I was discussing the possibility of renting a house in Belgium with Mr Distellmans and my devastated family so that I could begin the process of applying for euthanasia on grounds of psychological suffering.....none of us were laughing.

I'm sure it's very easy for people like yourself who have had some form of this since childhood to be astounded by the suffering, perhaps even sneer loftily, at people like me and the OP who have suddenly been hit hard by this in our middle age and can neither trust themselves, or desire to, to live with it.

But maybe try and imagine waking up tomorrow and losing your family, your home, your job, all your friends, your peace ......before you cast glib aspersions.

@Bam The laugh is commonly used as the dislike button. Before you jump to assumptions and make an .... out of yourself, you should probably inquire into the nature of my comment. Contrary to your assumptions, I disliked your post because it had nothing to do with my post or the OPs. I made no mention of you, yet you somehow responded to my post with a long diatribe about your current petty interest. Seriously dude...step away from the mirror. I wasn't even addressing you. And even if I was, (which I wasn't) people can disagree with you and your experience AND that is ok. Don't force your beliefs on someone. I only let her know that, there actually is real relief out there that will be made available in the near future. Also, I only suggested to the OP that not all severe and loud T has to look like what a few of the posters who flocked to this thread make it look like. @Ed209 can't be the only adjusted person! (well he is pretty exceptional, so maybe) And sometimes, those people with more experience in this scenario (shocking I know)...just might, just maybe have some words of wisdom or have a unique insight about dealing with this. Humility can be a virtue. Also... do you even read what you write? Glib aspirations.... what is that even in reference to?

What is astounding to me is that even after all of you have been through... you do not have a shred of humility...

 

[coffee_girl]

This thread needs more the positivity of @fishbone