Ways to Draw Attention to Tinnitus! Not for Newbies!

Today is just another day from hell! Tinnitus hell!

I'm thinking how little is known about this condition, how little medical world is interested!

So I came up with an idea! What if I:

- chain my self somewhere in city cbd and threaten to set myself on fire

- what if I climb the tallest building and threaten to jump

- or just tie myself down on some train tracks

- or start hunger strike????

Would this send a clear message that this is far more than just a harmless sound!!!!????

 

I'm sorry to hear that!
Are you feeling suicidal? Have you been thinking about self harm? Are you coping?
I'm just slightly worried...


And to give you a more practical answer...

I'm sorry, but you'll probably appear in the news as 'mentally ill' with possibly tinnitus mentioned somewhere in the article once. It's easier to write someone off like that, than to be confronted with something very real. There was a Belgian guy who committed suicide because of tinnitus (loud concerts) in 2009, whose suicide note got quite a bit of attention and probably woke many people up. But please don't (threaten to) commit suicide just to bring attention to tinnitus sufferers...

So, what could be effective? Over here there have been NGO's advertising earplugs and warning for hearing damage. It's been on national tv in talk shows. Government regulations now limit the sound at concerts to 103dB. Many people have seen the light and are more careful with their ears, and are talking about it to others.
People are getting organised, and it's working. It's slow, but it's the only way I can think of that massive paradigm shifts have been realised. And it brings a lot more positive energy in the process.

 

See that's in Belgium!
Nothing like that would happen here in Australia! This country is totally oblivious to tinnitus and noise control.
They need a wake up call but knowing my luck I would be put away and strapped to bed in a psychiatric ward

 

Might give us some peace......

What could be really effective is if we set up a load of wireless speakers in the middle of a town centre and play a tinnitus sound, then lots of people can experience what it's like. We could film it - people leaving, trying to block the sound out, looking distressed etc. Can't imagine being allowed to do it in many places, although in a country where there is a big focus on protecting your ears it could happen, partnering with a news program or something like that.

 

@Steve

That's such a brilliant idea!!!
I guess it would be hard to realise
but I would pay to see the horror on people's faces!

 

If we had a place with local TV stations, seeing it as pulling a stunt then it could happen. Or if we tried to get somebody on board and run it as a social awareness type of thing, could do it outside of a concert as part of an awareness campaign. If you're showing people what could happen if they don't look after their ears then we may be able to do it in partnership with somebody who sells earplugs (so has an interest in staging it and bearing the costs, doing the filming and promoting the video etc).

 

Warning:

I absolutely forbid a newbie or a mild T sufferer to read the below message. If anybody in the mentioned categories disregard my right to write a message that I've just stated that is not for them, and do read my message, than I am not responsible for the consequences.

And a newbie was warned that this thread is not for them anyway, so their fault is double.

A new T sufferer (a newbie) will most likely have a lessening of T in time and not have an experience with T similar with mine and Valeri's.

Cases who became chronic with "severe/ disabling T/not worth living with" kind of T are a very small percentage of the people who got T at one point in time, but that in no way represents a reason for which we, the chronic sufferers with severe T, should not receive attention.

I noticed that mild T sufferers have a tendency to give "lessons" from a "superior level" to the severe T sufferers. They are not superior in any way, they simply had less bad luck than us, that their T is not that bad to disable them, to disrupt or cancel their lives. In my attempt to save my live I tried almost everything. Spent all my money in the process. I didn't manage to save my life, I am merely existing, just to watch myself becoming degraded, more and more with every day. What a cruel show!
Just because we all have T doesn't mean that we are in the same category! IT IS ALL ABOUT THE VOLUME OF THE TINNITUS!
That is why some people who have T don't bother to make a trip to an ENT, the volume is not high enough to be worth the time to go see a doctor about that, while others kill themselves because of T. But because of the same kind of T. In the latter case the volume of T is so high that it makes "the unthinkable" the most "thinkable" thing to do! The volume of the T is the determining factor here!
----------------------------------------------------------------------------------------------------------------------
Now, the message:

VALERI, YOU ARE ABSOLUTELY WONDERFUL!
The first three methods are not good, you would get arrested and checked into a mental hospital in no time. (And, just as bad, would also give Steve some undeserved peace. I even laughed at his joke, but boy, was that cynical or what? His second message is only about awareness and prevention, not about drawing attention to the people who already suffer from severe T, and the need for searching for a cure to save their lives. We need to send the message that people who are getting paid for developing new drugs should stop thinking, for a change, about profits and easy tasks (changing an old drug into something a little different in order to be sold at a higher price) and start working at new drugs that are really necessary! People don't need another kind of aspirin, but drugs for conditions that destroy lives and don't have a cure yet.
And WHO should start to really think about the health of the world, besides their good salaries and easy lives.

The fourth method, hunger strike, on the other hand, is a well known form of protest, used by people for different causes.
I suggest, as a place for the protest, the front of the WHO building.

BUT DO NOT EVEN THINK ABOUT STARTING SOMETHING ABOUT ME!!!!!

(Who knows, if we start to starve ourselves, our bodies will go into ketosis state and get cured of T, if we were to listen to some theories. I have to read more about that, though)
If others want to join us, they are welcome.
If not, so be it!
The more we are, the less likely is that "we all got mentally ill at the same time, after we got T", by some unprecedented coincidence. What would be the odds of such coincidence?

And if we were mentally ill, that is a proof that severe T drives the sufferer insane, which is nothing but one more reason to GIVE APPROPIATE ATTENTION TO T AND T SUFFERERS!!!!!!

It's much easier to label somebody as "being crazy" than trying to understand him and help him.

If Australia is not a good place, we can think of getting together in another country.

ANYWAY, COUNT ON ME AND DON'T DO ANYTHING WITHOUT ME.

PS I wrote the above message without my much needed glasses (can't find them) so please be kind and ignore the errors. Taking Clonazepam for the past 7 years fucked my eyesight and memory, not only my life and my future (and the live of my kid who was supposed to raise on my shoulders, but now he is just scared to see that he has only one parent to rely on, but can't because the parent is very sick. How can I help my child when I can't help myself?)

 

Unfortunately in the minds of most, T is T, it's all the same. I have been told that I'm doing it to myself, and that most people live just fine with tinnitus. Even people with tinnitus think this. So what seperates us then? Why cant some make it like the rest? Well since T can't be seen/measured, it must be that we are just mentally weak, sick in the head, prone to freaking out because obviously the rest of the tinnitus community is living just fine, it must be us. It then,in the minds of most, becomes something that is treatable with therapy, because after all, you just need to get your head around it, move on like everyone else does.

As long as the masses see it as something that people can beat and live a full and complete life with, it will never become anything that is looked at with any degree of seriousness.

When you have people talking a big game about how their tinnitus is as bad as it gets and that they made it though and have a amazing life now, how could it ever be this serious thing that some people make it out to be? Even the people that have the worst kind are just fine, they are all over the internet preaching about how incredibly bad their T is and how it no longer even effects their life. It's obviously not that bad if you can work through it with some positivity and some effort. No cure needed, just the right mindset and maybe some ADs, even in the most severe cases, people are just fine. It's all we need! All the success stories are proof! Read them all!! They are everywhere.

My point is good luck ever convincing people that tinnitus is anything but a very minor inconvenience. It ain't happening no matter what you do. And in the process you will look even crazier than a person that struggles with tinnitus. You will go down as mentally ill and will have little respect from others no matter how you play it, don't even bother, you are wasting your energy. Believe me I have thought about this as well. No matter what you do, or do not do, you will been seen as fucked up in the head, weak, and just plain negative by most people.

 

What exactly is the purpose of making people realise how badly T can affect your life ?
Think it will advance research ? More understanding ?
I can think of a few reasons but at the end of the day I am not sure its that important although I do find myself wanting people to understand ....just thinking out loud .

 

@walkthroughwalls

Yes it had quite alot of media coverage.... for a short while, Dietrich Hectors was his name, but it was not so much the T that drove him mad but the catastrophic hyperacusis, he could not even stand the sound of a plastic bag crackling or the sound of a lightswitch. He said in his letter that he could have lived if it was just the T alone, even though it was very loud. Poor guy, he had everything going for him prior to his injury.

@RaZaH

I do not think that it will advance research any faster but at least it will get more attention, alot of people seem to think that it is indeed a harmless sound easy to ignore, or that it is just a temporary thing, I hear alot of young people boast that it was such a great party there ears are still ringing, something needs to be done here, there is still a long way to go to educate people on the dangers of hearing loss and how life altering tinnitus can be.

 

Yes, as a preventative measure ..I agree.
I was strictly thinking of myself What a dick !

 

@Dana ...Great post!!!

One suggestion I had (but before I got my 5th. level of damage this lifetime, three weeks ago - which has kinda F'd me over and cut my possible 'travelability') was to do a TT gathering of some sort and within that create a performance piece that could be videoed, and submitted to various supposed T organizations (like conferences that are held by ENT's; or the TRI conferences: http://medicine.umich.edu/dept/khri...ternational-tri-tinnitus-conference-june-7-10; or to hassle Dana's WHO with; the ATA's, and BTA's, and HHF; VA; YouTube; whatever...).

A visceral, visual, sound (careful - or with plugs in), graphic presentation of what the hell it is like to live, or try and "live" with severe T...may be a medium that has a little more impact than words alone. There are trillions too many words out here in the world already. They have dulled us with over-saturation. To "get through" shit needs to be "experienced" in the body/being so to speak.

Hence an interactive "performance" idea...And yeah, it can be done, even with non professionals (except for the videography that is - that needs to be top notch). If people are truly experiencing something in their core (like T) and are willing to be vulnerable and expose that, as a group in particular...very impactive magic can happen.

I know because I have seen it so.

.....Just adding to the "ideas" here. Though I realize this is very, very unlikely to ever happen as there was not much enthusiasm for a TT "meetup", let alone this.

Oh well. I still think it's a good idea.

Zimichael

 

I've just read again what I wrote this morning, after I woke up in hell, just like Valeri.
I started to write, although it was hard without my reading glasses (I had eagle eyesight before taking Xanax and Clonazepam) and I also knew that I am very tired, so prone to make mistakes.
As my time to correct my message passed, I will try to correct here the biggest mistakes I made.

I wanted to say, of course, But NOT because of the same kind of T.

I, obviously for some, wanted to say BUT DON'T EVEN THINK ABOUT STARTING SOMETHING WITHOUT ME.

Making such huge mistakes, in essential points, just shows how disabled I am especially in the morning, after a supposedly "good night sleep", when I was supposed to be fresh and with my mental abilities at their best level.

You have in my mistakes the proof that I have disabling T.
I made those mistakes because I am "weak"? That's hilarious.
I made those mistakes because I am mentally ill? Then how come I noticed them when I read again my message in the evening? What kind of mental illness goes away in several hours?

I made those mistakes because I cannot function in the morning. Instead of a rest for my brain and a replenishing of energy, my nights are a permanent fight with T, and if, by some miracle, I fall asleep, in the morning when I am greeted by my T, I freak out and I go into an episode of depression because instead of resuming life in the morning, I resume being in hell.

My post is NOT at all about bringing awareness re how bad T can be to people who go to concerts or expose themselves to loud noise unaware of what may happen (which would be good too, but not my first problem when I try to live), but to the people who are appointed and paid to search for cures for diseases, and consider that T is not worth the trouble, and also to the people who supposedly oversee the health of the population and give directions to insure that healthy people stay healthy, and sick people are taken care of as good as it is possible (WHO).

I HAVE A STRONG FEELING (and information) THAT THIS IS NOT THE MAXIMUM THAT CAN BE DONE FOR FINDING A CURE FOR TINNITUS, BECAUSE THERE IS A LACK OF INTEREST AND A MISBELIEF THAT TINNITUS IS NOT THAT BIG A PROBLEM, AND THE PEOPLE FOR WHICH IT IS A BIG PROBLEM HAVE MENTAL PROBLEMS.

I would prefer, for awareness, to put earphones with constant loud T kind of sounds, multiple frequencies, for a week (only) not to ordinary people, but to people in the medical field who DARE to make statements about T, while not having a clue as to what they are talking about, and during that week to take them interviews from time to time to assess their "strength".
If they take their earphones off during that week, they should be officially declared "weak and mentally ill" and fired from their positions.

Oh, I forgot: during that week, tired as they will be, they are free to look for a CBT, TRT specialist and other specialists in any acronym they want, and pay from their own pocket. And also they have to perform their daily duties (taking care of family, going to work, etc)

If they argue that the sound in their earphones may give them permanent T, they will be reminded that permanent T is not a problem for mentally healthy and strong people like them.

 

No. It would send a clear message that you are " depressed" and mentally unstable. You're in a small percentage where tinnitus severely affects your life...apparently...so basically to the medical world, you don't really matter.

 

If you do that alone, they send you to nut house.

If you recruit 10 or 100 other sufferers and all of you do the same thing in the same city...

 

YES, YES, YES, YES!
Exactly my point!
Jesus Christ, at least somebody got my point!
Somebody got my point!
Hallelujah!

 

Sufferers AND the people that loves us and see us suffer! My whole family would be right next to me in support. When are we doing this?

 

@OnceUponaTime
Oh, Jesus, if some participants would be joined by their families, (even one, one family is enough, IMO), that would clear us of the accusation that we are mentally ill. If the T sufferer can be unfairly accused that he is mentally ill, his family members can't be accused! This way we can prove that is not about a bunch of people who are mentally sick, but a form of protest.
The family can testify as to the suffering they have seen at their family member since he was hit with severe T, and also they can testify as to how the unlucky family member was all his/ her life before getting T, so we have witnesses too.
I hope we are talking about hunger strike here, cause I am not up for one of the first three methods.
The participants can be joined during the protest by anybody who supports the cause of the protest, without having to go on hunger strike.
The power and impact of the protest lies in the number of participants.
If we gather many many participants, the T sufferers don't even have to stop eating anymore, IMO.

 

@Blackbird26

No. It would send a message that the torture of severe T is hard to endure, and, for your information, if don't know, under torture ANYBODY has a tendency to get a little "depressed and mentally unstable", which may not matter to "the medical world" or in medical statistics, as you say, but it matters to PEOPLE.

And the "medical world" is paid by and in service of the PEOPLE, not vice versa.
The medical world is obligated to take into account the people's needs, medicine is not an abstract science studied for no reason, it was developed to help the people in need!

 

Dana...If you don't do a hunger strike in "public" or not chained to a fence, etc. then how will it be "noticed"? Needs to have high visibility and "newsworthiness" or it will not compete with say Donald Trump's latest rumoured shampoo brand...or whatever-the-hell.
However, enough people, to make a difference, in one place in the world, that gets the coverage, that gets the attention, that makes a difference...Aiyyyaayai. That's a real long shot. Would need a lot of organizing and prep work by a small team, and then the "participants".
Start a sign-up list...

So, sounds to me, that maybe a T sufferers protest "strike" is yet another thing to say for getting together to have a 'meetup'!

Zimichael

 

I guess you failed to detect my sarcasm...haha..damn..chill out.

But it is what it is..Docs don't know what to do with tinnitus patients..neither do psychiatrists..You think one person tieing themselves to train tracks will make a difference in raising awareness?! Get real! Hmmm..How much did Gaby Olthius make a difference? Wasn't her story even buried here at TT? and argued about in other fing tinnitus groups! Seriously...and yea maybe "Joe" and "Marge"reading the Sunday paper may read the latest LOCAL fatality and say " wow, she must of had really bad tinnitus, I know Harold has it and his isn't (THAT insert italics <<) bad...and forget about it within a day or two..maybe less! ..Why? cause that is how humans work.

For your info...My God..I live in Canada and our medical care is shit and NO, they don't care what " the people" say. .i.e their patients. .they care about what they learned in school and if they don't know (and they don't) they fail to treat as is in the majority of tinnitus cases...

I have chronic pain AND H AND T. I am really familiar with the inner workings of the " medical world" and also the ignorance of the general population including friends and even family, towards t, h and fing chronic pain.

Guess what? No one cares...They only care when it happens to them...Hope for those greedy corps to see a major market in curing T, cause the sympathy vote ain't gonna work!

Peace.

 

@Blackbird26
We do not need to be told/reminded of the indifference of the people in the medical system, we know that too well, otherwise we wouldn't be here talking, we would be under the care of medical professionals.
Yes, I have mistaken your reminding us of the sarcasm that governs the medical world with bringing discouragement in this conversation.
Probably your post had an encouraging purpose in this conversation about trying to change things, I apologize.

 

@Blackbird26

The problem is not that the corps haven't seen yet a major market in curing T, they saw it allright, the problem is that they saw a possibility to make way more money doing nothing: changing a little bit some drugs to sell them at a higher price, or just changing the price for some drugs overnight.

I do not count on the sympathetic reaction of the big pharmas, I hope on the reaction that some organizations are obligated to have, by their statute.

Big pharmas are not obligated to help all the people in need, WHO is.

 

The WHO doesn't even recognize Trigeminal Neuralgia!!!...aka " The Suicide Disease" The most painful condition known to mankind! Petitions for years to the WHO foundations established, News Awareness on major network tv shows that included children! I could go on and guess what? nada..You have any idea what TN feels like? Join a forum and find out what sheer hell those people go through! Thankfully I only have a milder case (for now, it's progressive!) but all the same I have it!

Ehhh hunger strikes. .sorry I need to leave this thread. .it's just too ridiculous. .no offense to the OP. I understand your desperation believe me!

Peace out..and I do hope a bloody cure is found for us..but I am also realistic in the means of which we will obtain it...

 

p.s. ALOT of people with TN also have t and h.

 

Yes, I do. Because of TN I recently took so much ibuprofen (while in agony in the middle of the night, so not fully conscious, that I got intoxicated with it.
I had forgotten, in the middle of the pain of trigemenal neuralgia that ibuprofen is not good for T, it may increase it. Only after my T increased terribly I remembered that ibuprofen is not good for T and I panicked.
I realised that I have to take the huge amount of ibuprofen out of my system until it's not too late, to save what it's salvageable.
I called the ambulance to ask them to put me on an IV line, to clean my blood.
The doctor couldn't care less, all she did was to give, at my request, a diuretic, in my attempt to flush out the ibuprofen.
She gave me a Furosemid shot, which is also bad for T.

So yeah, I have more than an idea what TN feels like

I am actually not belligerent and I wish you too to recover from all the conditions you have.

I will personally remain a little more on this thread cause I want to be ridiculous some more, I guess.

My sincere best wishes to you. I happen to know how much you suffer since I stumbled on your profile page a while ago and you were expressing there your nostalgia re having a cappuccino and a smoke, "simple pleasures of life", as you were saying, which we can't have anymore. Yes, I miss having a smoke over a cappuccino too, big time.

Peace to you too!
(Not "peace out")

The only difference between me and you, re healing, is that you want to remain realistic, while I can't stand the hell of remaining realistic anymore, as my situation is way too bad. Willy-nilly, I started to ramble, to dream at things very difficult or impossible to achieve. No other choices left for me. Reality is too harsh.

I don't know whether TN can be put in evidence by a test, I doubt, but T can. So maybe T has a better chance to be acknowledged by the same WHO.

 

@Blackbird26
One more thing about TN.
In an attempt to cure my T, I went to an acupuncture session. The people there didn't know what the hell they were doing. Putting needles deep in the wrong places, they triggered in my head such a TN (both sides) that I couldn't help it, I started to holler in the building when I got home. Very very loud. My neighbor called the ambulance to be taken away, but not for me, to get some help, but for him, to get some peace. Exactly like in the joke of Steve. I have lived that situation. Absolutely wonderful experience.

 

@Blackbird26

Please forgive me for tagging you again in this ridiculous thread that you said you want to leave.

You say that you are realistic in the means of which we will obtain a cure for T.
Would you you please tell me a realistic way in which we will obtain a cure?
(I would like to go back to being realistic, if you say there is a realistic way to obtain a cure)

 

Look it my apologies if I have offended you or anyone else..I just don't see these ideas as being very conducive to spreading awareness. I think the wrong message will be perceived. That's all...and forgive me but I am blunt....

No I don't believe a hunger strike seems like a realistic idea, its also physically detrimental to ones health, but go ahead, give it a go, maybe I'm the ridiculous one!

Seriously. I'm sorry Dana but what is your point here with me?

You have TN? Interesting. .may I ask what drugs you take to control it? Cause if ibuprofen is what you use you have been misdiagnosed.

What is my realistic idea of obtaining a cure? Well this site reached 10,000 members today, that's a potential 10,000 signatures on a petition to the WHO..add more and more by networking through other sites..there is a realistic start..

Other than that, I'm fresh out of ideas..Not my job really, I'm just the bloody patient and frankly really sick and tired of having to play doctor for all my inadequate docs that haven't a clue how to treat me.

I'm tired.

Peace.

Not sure what you mean about my profile and smoking but I actually was smoking and drinking a cappuccino. .It wasn't a nostalgic post. I still try to find pleasures in life..

 

Yes I can see the point of all your replies.
That why my list of ideas was started with "what if" and not "I will"

Even though I would love to do it....

Desperation