I'm Not Committing Suicide. I'm Being Murdered by Merciless Tinnitus.

[Bam]

If so many of you guys are suicidal why not join me in my crusade to get organized like the aids patients in the early 90's and demand the FDA leave the hearing loss drug inventors alone and not burden them while they develop and test their drugs?

AIDS patients had a really spectacular form of suffering. Welts on their skin, gaunt emaciated bodies, plenty of fear from the entire world surrounding their disease......We have ringing ears.

If it was bleeding ears and was sexually transmitted and caused our brains to melt out of our noses in a pink sludge, the FDA might be slightly more amenable.

 

[valeri]

I've taken inflight WiFi so I can answer this...

Personally, yes all hope has gone for me. I always had severe loud ringing tinnitus since 1990, high pitched static above all sound, tinnitus came along 5 years ago and whilst I had my bad times I managed to habituate to those sounds ok.

I mean I wanted them to go but I could / can manage them.

As of 6 months ago this awful rasping blasting pounding vibrating tinnitus came along and it completely flawed me. I have tried every technique I knew and know to start to habituate and seen every doctor and take every antidepressant. No gain whatsoever.

Day in day out hell. Genuinely makes me cry at least once a day. I could live with it in trauma or misery but I can't see that as viable. Whole life has gone to pieces. @Bam style. As said before, not saying I can go through with it but hoping I can. Have family but they just don't get it. Girlfriend is the only stumbling block as I would feel so guilty but I have impressed upon her how traumatised I am... not that it would help her if I couldn't go on.

What you describe you have now is that the low frequency drone?

 

[Basshell]

What you describe you have now is that the low frequency drone?

No. I would say it's worse. It's a relentless rasping, booming, pounding blasting bass noise. It mixes with other low frequency sounds as well and is like a sound chameleon.

 

[Wolfears]

No. I would say it's worse. It's a relentless rasping, booming, pounding blasting bass noise. It mixes with other low frequency sounds as well and is like a sound chameleon.

I wish there was a way I could transfer these sounds from your head into the heads of the lawmakers and other ass clowns, whom decided that tinnitus is not a good enough reason to be euthanized.

Then we could watch them change their minds at rather lightning speed.

 

[valeri]

No. I would say it's worse. It's a relentless rasping, booming, pounding blasting bass noise. It mixes with other low frequency sounds as well and is like a sound chameleon.

I'm sorry it's that bad. I just thought that you may have the same as me, low frequency drone, bass, like engine noise.
Mine also is reactive with similar sounds, what used to mask it now makes it worse

 

[Wolfears]

I'm sorry it's that bad. I just thought that you may have the same as me, low frequency drone, bass, like engine noise.
Mine also is reactive with similar sounds, what used to mask it now makes it worse

This reactivity to similar sounds should be another major piece of the puzzle for anyone who is interested in solving it...
If someone can figure out why this happens to some people and not to others, it would go a long way towards forming a strategy on how to kill this POS.
But as far as I know, nobody out there in medical research circles is even pretending to look into it.

 

[Bam]

I wish there was a way I could transfer these sounds from your head into the heads of the lawmakers and other ass clowns, whom decided that tinnitus is not a good enough reason to be euthanized.

Then we could watch them change their minds at rather lightning speed.

In a world where people still receive a peaceful death as a punishment for killing someone, we are treated worse than the lowest of the low.......Subjected to a life of crippling torture for the crime of our health failing.

 

[Basshell]

I'm sorry it's that bad. I just thought that you may have the same as me, low frequency drone, bass, like engine noise.
Mine also is reactive with similar sounds, what used to mask it now makes it worse

How much is it a problem for you?

 

[Wolfears]

In a world where people still receive a peaceful death as a punishment for killing someone, we are treated worse than the lowest of the low.......Subjected to a life of crippling torture for the crime of our health failing.

Indeed...we are not asking for special treatment.
All we are asking is to be afforded at least the same courtesy, which they extend to killers and rapists.

 

[Agrajag364]

In a world where people still receive a peaceful death as a punishment for killing someone, we are treated worse than the lowest of the low.......Subjected to a life of crippling torture for the crime of our health failing.

Bam I think there are all sorts of horrible ways our bodies can make us suffer. Many people are not aware of this - it might be fair to say the media doesn't cover a variety of horrible conditions much as they think it's too depressing for readers. In particular some people have to live with really crippling pain. That is not to say that tinnitus cannot be just as torturous as chronic pain for some people, depending on the level of pain. I have mentioned before on this forum I had a constant headache for 2 years which I think many would have found hard but I found it waaaaaaaaaay easier than the tinnitus. But depending on the level of pain chronic pain can be worse that what we have, I am sure. I think sound sensitivity also comes into it. I have this suspicion and I could be way off here that some of us are simply wired to be more sensitive to sound that others - it may be the reason we suffer a lot with tinnitus is because we are that part of the population.

 

[Bam]

Bam I think there are all sorts of horrible ways our bodies can make us suffer. Many people are not aware of this - it might be fair to say the media doesn't cover a variety of horrible conditions much as they think it's too depressing for readers. In particular some people have to live with really crippling pain. That is not to say that tinnitus cannot be just as torturous as chronic pain for some people, depending on the level of pain. I have mentioned before on this forum I had a constant headache for 2 years which I think many would have found hard but I found it waaaaaaaaaay easier than the tinnitus. But depending on the level of pain chronic pain can be worse that what we have, I am sure. I think sound sensitivity also comes into it. I have this suspicion and I could be way off here that some of us are simply wired to be more sensitive to sound that others - it may be the reason we suffer a lot with tinnitus is because we are that part of the population.

Same as you. I had a totally normal life with chronic pain. I had down days and didn't enjoy myself quite as much as I struggled to drive to see friends, and exercise, but I never ever felt even close to as insanely tormented as I am by tinnitus. You would have to be in a f***load of pain to trade it for severe T.

 

[JohnAdams]

I wish there was a way I could transfer these sounds from your head into the heads of the lawmakers and other ass clowns, whom decided that tinnitus is not a good enough reason to be euthanized.

Then we could watch them change their minds at rather lightning speed.

Why not instead convince the lawmakers to allow people to immediately try experimental treatments first instead of euthanasia?

 

[Agrajag364]

If so many of you guys are suicidal why not join me in my crusade to get organized like the aids patients in the early 90's and demand the FDA leave the hearing loss drug inventors alone and not burden them while they develop and test their drugs?

I have been involved in a campaign around another health issue that was actually wildly successful - we had help from a journalist which was one reason why. This could be way off cos there's obviously been amazing people on this forum campaigning for years who must have tried to get media attention......

but my guess would be the first thing we would need in terms of media attention would be statistics on how many suicides there are a year in the UK in which tinnitus is a factor.

Everything is quite click-baity these days and headlines need to be striking. In the absence of this there could be an article re-iterating cases where T has been a factor in suicide with perhaps the opinion of a clinician on the impact of the condition in some.

I am new to this, but the impression is that the tinnitus organisations give an impression that while this condition can be very distressing for some, most are not bothered by it. Presumably their intentions are very good - they want to reassure new sufferers they will adjust in time - but it could be argued this approach is neglectful of those with very loud tinnitus or who do not manage to adjust to their tinnitus.

But then of course with some conditions, media attention can go along way in e.g. increasing the no. of clinicians funded to treat the condition.........but with tinnitus, that would not help so much. From the limited amount I know it sounds as if there is a dearth of basic research into the condition.

There might be a perception with drug companies that a condition is less of problem than it is- i.e. they don't realise the extent of the market, but no idea if this is the case with tinnitus. I know that drug companies have received increasing criticism in recent years for investing little money (relative to their vast profits) in original research - they often buy out research from Uni etc and spend more of their money on marketing.

So I wonder, if there was media attention...and if along with this the money could be found for a series of adverts for a tinnitus charity committed to funding basic research into the condition.........then that might be enough to raise money from those with bothersome tinnitus.

I do VERY much agree with @Ed209 and others who say things to the effect that if people have the means and feel strongly about this they MUST donate to tinnitus charities/research funds when there is any prospect of decent research - no one else cares about the issue 1/100th as much as we do.

Sorry that was a bit of a thinking out loud rant.

 

[Agrajag364]

Why not instead convince the lawmakers to allow people to immediately try experimental treatments first instead of euthanasia?

Because experimental treatments harm more often than help, probably. There's a reason e.g. the Saatchi Bill failed in the UK. There was something similar in the US.

 

[Agrajag364]

Same as you. I had a totally normal life with chronic pain. I had down days and didn't enjoy myself quite as much as I struggled to drive to see friends, and exercise, but I never ever felt even close to as insanely tormented as I am by tinnitus. You would have to be in a f***load of pain to trade it for severe T.

Yes but the degree of chronic pain people suffer with varies wildly. Never underestimate the capacity of our bodies to make us suffer or of others, medics etc. to deny that suffering.

I know a number of people in severe chronic pain and I do not think I'd trade my tinnitus for that, even as it is on the loud days.

 

[JohnAdams]

McLean, from FrequencyTx holds a PhD from MIT in health science and technology.

FDA Commissioner Scott Gottlieb received his bachelor's degree in economics from Wesleyan University. After completing his undergraduate education, he worked as a healthcare analyst at the investment bank Alex. Brown & Sons in Baltimore.


Why does an investment banker that specializes in economics have oversight of emerging medical technology?

Obvious answer, the FDA is more about controlling markets. Do you want your tinnitus cured sooner or later?


Wake.
Up.
People.

We are suffering from a disease that is the number 1 military service related disability. We literally have an army of potential supporters that could easily get attention from Trump. Sorry but the only way you can support the FDA's role in this is if you dont understand exactly what they do. FrequencyTx does the testing, they arent going to lie to us or swindle us. They could certainly move faster and more efficiently on their own. This will also make the treatment less expensive because the initial costs will be lower and the time frame will be faster.
Get ready for this trial to conclude.
There are certainly some sufferers on this site that want to die that should be allowed to get this treatment as soon as this trial concludes and if the data is good. I'm advocating for them moreso than the rest of us. STOP DEFENDING THE FDA PROCESS.

 

[Agrajag364]

McLean, from FrequencyTx holds a PhD from MIT in health science and technology.

FDA Commissioner Scott Gottlieb received his bachelor's degree in economics from Wesleyan University. After completing his undergraduate education, he worked as a healthcare analyst at the investment bank Alex. Brown & Sons in Baltimore.


Why does an investment banker that specializes in economics have oversight of emerging medical technology?

Obvious answer, the FDA is more about controlling markets. Do you want your tinnitus cured sooner or later?


Wake.
Up.
People.

We are suffering from a disease that is the number 1 military service related disability. We literally have an army of potential supporters that could easily get attention from Trump. Sorry but the only way you can support the FDA's role in this is if you dont understand exactly what they do. FrequencyTx does the testing, they arent going to lie to us or swindle us. They could certainly move faster and more efficiently on their own. This will also make the treatment less expensive because the initial costs will be lower and the time frame will be faster.
Get ready for this trial to conclude.
There are certainly some sufferers on this site that want to die that should be allowed to get this treatment as soon as this trial concludes and if the data is good. I'm advocating for them moreso than the rest of us. STOP DEFENDING THE FDA PROCESS.

Could you explain a bit more about the role of the FDA in the restriction of promotion of a therapy by Frequency Therapeutics? Bear in mind a lot of people here are not American. Although I do know a little about Scott Gotlieb and the FDA - watch the bleeding edge documentary on Netflix

 

[JohnAdams]

Could you explain a bit more about the role of the FDA in the restriction of promotion of a therapy by Frequency Therapeutics? Bear in mind a lot of people here are not American. Although I do know a little about Scott Gotlieb and the FDA - watch the bleeding edge documentary on Netflix

The FDA was created to stop people from selling bad food and bad medicine with false claims about safety and efficacy.

Someone please correct me if I'm wrong, but the FDA doesnt test the drugs themselves, they have a very rigid reporting system that the drug makers have to go through and the FDA just looks at all the data and makes sure the scientific process is being followed correctly and that they arent lying or exaggerating about any of their data.

Of course this is needed for many many drug makers because we know corporations are full of evil greedy people. But not all.

Frequencytx is not a huge biotech corporation, they are a relatively small startup. The guys running it are absolute geniuses. They have discovered the future of medicine and are on the forefront of a new age. Tbey dont need the nanny state FDA to verify their work. Their commissioner isnt even a doctor, hes an investment banker.

 

[Agrajag364]

The FDA was created to stop people from selling bad food and bad medicine with false claims about safety and efficacy.

Someone please correct me if I'm wrong, but the FDA doesnt test the drugs themselves, they have a very rigid reporting system that the drug makers have to go through and the FDA just looks at all the data and makes sure the scientific process is being followed correctly and that they arent lying or exaggerating about any of their data.

Of course this is needed for many many drug makers because we know corporations are full of evil greedy people. But not all.

Frequencytx is not a huge biotech corporation, they are a relatively small startup. The guys running it are absolute geniuses. They have discovered the future of medicine and are on the forefront of a new age. Tbey dont need the nanny state FDA to verify their work. Their commissioner isnt even a doctor, hes an investment banker.

I disagree strongly with a description of a regulator like the FDA as the nanny state. The UK and US regulators have often been criticised as far too lax and in the pockets of industry, at least when it comes to medical devices and I think also drugs to a lesser extent. Do not underestimate the harm the drugs and medical devices can do as well as the benefit. However I will read up on frequencyFx

https://www.google.co.uk/amp/s/www.wired.com/2012/01/fda-spying-on-workers/amp

 

[katri]

In a world where people still receive a peaceful death as a punishment for killing someone, we are treated worse than the lowest of the low.......Subjected to a life of crippling torture for the crime of our health failing.

The lethal injection is literally anything but peaceful. But I see your point

 

[Wolfears]

Why not instead convince the lawmakers to allow people to immediately try experimental treatments first instead of euthanasia?

Too much liability involved there my friend.

Should something go wrong, I can just see the plaintiffs lawyer destroy the defence just by asking if they had followed the proper protocol.

Nobody is going to willingly open a backdoor for a potential lawsuit..especially these days.

 

[valeri]

How much is it a problem for you?

Huge! It's physical, it's bouncing through my head shaking my brain. Sometimes I feel my brain hurts from the constant vibration.
I'm holding on to a dear life!

 

[valeri]

This reactivity to similar sounds should be another major piece of the puzzle for anyone who is interested in solving it...
If someone can figure out why this happens to some people and not to others, it would go a long way towards forming a strategy on how to kill this POS.
But as far as I know, nobody out there in medical research circles is even pretending to look into it.

Not only that they are not looking into it but my case has been entirely dismissed as possible by top of the top ENT dickhead.
He said I'm anxious and depressed and that increases my perception, tinnitus is the same.

 

[Wolfears]

Not only that they are not looking into it but my case has been entirely dismissed as possible by top of the top ENT dickhead.
He said I'm anxious and depressed and that increases my perception, tinnitus is the same.

This is exactly the type of ignorance in medical circles, that only gets reinforced by those who think we are catastrophising.

I encourage you to speak out as much as possible and reveal the truth about severe Tinnitus.

Yes the Tinnitus apologists will try to shame you into keeping quiet, so they can maintain the official line of "we can cope", but I think the uprising has now begun.

 

[Ed209]

Yes the Tinnitus apologists will try to shame you into keeping quiet, so they can maintain the official line of "we can cope", but I think the uprising has now begun.

I'm not trying to be deliberately argumentative here, but what uprising? Nobody does anything other than post on here.

 

[IAmCalifornia]

This is exactly the type of ignorance in medical circles, that only gets reinforced by those who think we are catastrophising.

I encourage you to speak out as much as possible and reveal the truth about severe Tinnitus.

Yes the Tinnitus apologists will try to shame you into keeping quiet, so they can maintain the official line of "we can cope", but I think the uprising has now begun.

The fire rises

It's time we demand a real cure

It's time to move beyond posting

It's time for real, grassroots activism

 

[Wolfears]

I'm not trying to be deliberately argumentative here, but what uprising? Nobody does anything other than post on here.

It's cool Ed...let me explain.
Not sure about you, but I'm definitely sensing a different tone on these boards as of late... compared to say couple of months ago.

 

[Agrajag364]

I'm not trying to be deliberately argumentative here, but what uprising? Nobody does anything other than post on here.

Ed – Do you know whether in the UK there is a tinnitus association or charity other than the BTA? Sorry, not sure if you're a Brit.

 

[Ed209]

Ed – Do you know whether in the UK there is a tinnitus association or charity other than the BTA? Sorry, not sure if you're a Brit.

The other main charity in the UK is Action on Hearing Loss. And yes, I'm a Brit.

 

[Agrajag364]

The other main charity in the UK is Action on Hearing Loss. And yes, I'm a Brit.

I totally forget about them and I actually donate money to them monthly because they told me they do do original research on tinnitus