Tinnitus... 10,640 People Just on This Site and There's Nothing That Helps

Discussion in 'Awareness & Fundraising' started by jeannie, Jan 5, 2016.

tinnitus forum
    1. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      10,640 people just on this site and we have nothing from the medical profession to help us lower this crap without major side effects.

      Just doesn't seem right!!!!!
       
      • Agree Agree x 8
    2. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      It's unfortunate, but it's pretty similar to any number of other shitty conditions which are, as of yet, not well understood, and for which no treatments exist. Tinnitus sucks, but when I look at the rather long list of things that can go wrong to a body, there are plenty of things I would not trade my tinnitus for.
       
      • Agree Agree x 4
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    3. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Yep, I gotta agree with @linearb.

      And there are things that can help many people manage their tinnitus. Cognitive behavioral therapy. TRT and other sound therapies. Medications, at least in the short term. Masking. Proper ear protection. Lifestyle changes. Tinnitus Talk! Good doctors will mention these options to you.

      Not everything works for everyone. And there is no cure. But there is help.
       
      • Like Like x 2
    4. Andersson
      Worried

      Andersson Member

      Tinnitus Since:
      01/2012
      To be honest 10k people is nothing at all :)
      Hundreds of million people in the world with tinnitus, maybe if all those could revolt more money would get into research ;)
      But yeah since the majority of people with T live without problems its another story.
       
    5. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      It's like carpal tunnel syndrome in a way... a very common condition that's mostly a result of our modern lifestyle, which doesn't severely impact most people, but is disabling for a minority of those afflicted. Of course, in the case of CTS, there is a least a surgical option which has a good success rate.

      I'm hopeful that we'll have better tinnitus treatments in a decade or two, but I'm not counting on it.
       
      • Like Like x 1
      • Informative Informative x 1
    6. derpytia
      Pooptoast

      derpytia Member

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Hearing loss / ETD
      I'm sure that if more people in the world had internet access and spoke/read English well then we'd have more people on this site. Especially all those people from Syria and all the countries were terrorism happens. Those people have endured bombs and guns. I'm pretty sure at least 1/3 of them have developed tinnitus. Especially those kids that the terrorists take and put guns in their hands with no hearing protection.

      I'm also sure that there are a lot of people who do access the site with tinnitus but don't join it.

      But I agree with the frustration over having nothing concrete to treat this monster with.
       
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    7. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      I think that people who develop tinnitus as a result of war, often have a pretty different perspective on it. I've talked to a few servicemembers who have pretty obnoxiously loud ringing from stuff like IEDs and artillery cannons, and none of them has been as distraught about their condition as I have been at times. I'm sure there are exceptions to this, but I have to imagine that spending a bunch of time in a warzone fundamentally changes your sense of well being... think about it this way: I went to a concert, I got a notable increase in my tinnitus, and my friends that I was at the show with suffered no long term consequences. On the other hand, people who have spent a bunch of time in the sandbox and come home with "only" tinnitus to show for it, have probably watched their buddies get their faces blown off by bombs, seen people lose all their limbs or end up paralyzed... that's got to impart a significant context to their tinnitus.

      It's worth noting that most people in the forces on the US side, do a ton of firearms work without hearing protection, as well.
       
      • Agree Agree x 2
    8. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      I agree there are a lot of things that are worse.just want my old life back so bad...like most people do that have this or something else wrong with them...:(
       
      • Agree Agree x 1
    9. Cheza
      Wishful

      Cheza Member Benefactor

      Location:
      Oregon
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Barking dogs/stress
      Tinnitus in veterans is a disability surpassing even PTSD. Everyone is aware how debilitating PTSD can be. It's like anything else in life; what affects one person profoundly is brushed off by another person based on their prior life experience, physiology, and/or psychological makeup.
       
      • Agree Agree x 1
    10. pef

      pef Member

      Location:
      Georgia, USA
      Tinnitus Since:
      3/16/2013

      I doubt many people in war-torn regions and that have tinnitus are very concerned about it; likely they have much bigger problems, like trying to stay alive!
       
      • Agree Agree x 1
    11. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      it surpasses PTSD only in terms of number of cases reported, I believe? I know it's a really common reason for veterans to draw disability (and is also often regarded as an easy target for disability payouts because it's entirely subjective).

      But, yes, I do not disagree with the gist of what you're saying here, not at all. As I have said many times, I have a good friend who's tinnitus seems "worse" than mine in terms of pure volume/tone, who is barely fazed by it and didn't even know there was a word for it until about six months ago.
       
    12. Bertman
      No Mood

      Bertman Member Benefactor

      Location:
      canada
      Tinnitus Since:
      07/2015
      Cause of Tinnitus:
      concert
      Imagine if even like 1% of people with T donated just a couple dollars collectively towards research, that'd be a huge amount.
       
      • Agree Agree x 3
      • Like Like x 1
    13. derpytia
      Pooptoast

      derpytia Member

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Hearing loss / ETD
      Still, I'm sure having it doesn't make living after surviving any easier.
       
      • Agree Agree x 1
    14. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      This is indeed the difference between advocacy and imagination. Just imagine.
       
      • Agree Agree x 1
    15. jss
      No Mood

      jss Member Benefactor

      Location:
      USA
      Tinnitus Since:
      June 2013
      10,640 members is really nothing. Maybe at 25,000-50,000 members may get some attention.

      Its structured donation drives and proper use of the money that will get attention. Money unfortunately does all the talking in the corrupt medical age we live in. Just look at all the people on this site who complain daily but never donate a penny. It starts there......sadly.

      This platform could be a powerful voice and proper funding will help. The people who run this have done a lot to help us, so help them too.
       
      • Agree Agree x 1
    16. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      I am sure that you - like me - will be getting a lot of x'mas cards next season...! :)
       
      • Like Like x 1
    17. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      I'm participating in a research trial of a new treatment at great personal expense because of the travel involved, but obviously my reasons are more personal than altruistic.
       
    18. daniel1111
      Shitfaced

      daniel1111 Member Benefactor

      Location:
      Amsterdam
      Tinnitus Since:
      12/12/2015
      Cause of Tinnitus:
      Noise induced, repeated exposure with loud headphones.
      What's being done in terms of awareness? Are any charities or other organisations pushing it out there?

      Before I had it, I would've never known how much of a problem it could be. So much so that I've been extremely embarrassed to tell anyone, knowing that it may sound like a small problem to them.
       
      • Like Like x 1
    19. Atlantis

      Atlantis Member

      Tinnitus Since:
      02/2014
      What trial? Clinicaltrials.gov link please?
       
      • Creative Creative x 1
    20. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      • Informative Informative x 1
    21. Atlantis

      Atlantis Member

      Tinnitus Since:
      02/2014
      ATA (American Tinnitus Association) and BTA (British Tinnitus Association) are the only ones worth mentioning.

      Neither has achieved anything to write home about.

      ATA as the earth's number one tinnitus charity has a budget of around one million dollars per annum.

      The reality of the matter is that tinnitus won't ever be a public mainstream topic. Not even celebrities want to talk about it. Coldplay's singer has tinnitus and he has done nothing for the history books.

      This topic comes up here regularly but nothing can ever be done to improve the situation. When someone gets it, then they learn about it. Simple as that.

      Susan Shore is famous. Keep us posted!!
       
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    22. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      I'm trying to be skeptical-but-optimistic, which is my usual modus operandi anyway.

      Notably, the researcher who I have met with, has (non-intrusive) tinnitus (and has had it very long term), and they were one of the first guinea pigs for the device, and said that it definitely and notably reduced their tinnitus (temporarily, anyway). So, hopefully they are really on to something! This is a lot less invasive and scary than any number of other things out there (deep brain stim, VNS, drugs) -- so I'm not especially scared of it.

      I'm probably not going to say a whole lot more about this until my trial is concluded in March, but I will definitely report back.
       
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    23. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      I just don't understand why the celebrities don't raise awareness,Phil Collins has tinnitus supposedly pretty severe coldplay singer too ,and they have money..why?????good lord if I had the money I would raise awareness!I get so depressed,upset,over this s%#t.sorry for my ranting...:dunno:
       
    24. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      @jeannie - if you look at the comment above, you can perhaps appreciate that this "awareness thing" to some degree starts with the members themselves.

      As an advocate, I will however, make the tinnitus community the following deal: now that we are speaking of member numbers - as per your introductory message - if the following post gets a total of 250 ratings (likes/shares combined)...



      ...and you raise a total of USD 500,- within a reasonable time frame, I will write up a message of awareness, where I pick the top 3 to 4 Facebook-posts from the year that has just passed, and for each message, I will explain the rationale for choosing that post. We will then share that on the social media as a boosted item. The picks will consist of science/awareness FB-messages (which will be embedded in the TT-post itself).

      You can ask @Markku for help with the above i.e. setting up a donation page - indeed we should wait for his approval (I am not a member of staff). As such, I leave it in your hands.

      attheedgeofscience
      07/JAN/2016.
       
      • Like Like x 1
    25. noisebox
      Loved

      noisebox Member

      Location:
      Yorkshire, UK
      Tinnitus Since:
      04/2012
      Cause of Tinnitus:
      West End show. Came back 2015 vitamin D overdose prescribed
      I agree they just are not trying hard enough. I mean the Autifony thing, testing 52 highly selected people and then say it proves it does not work.
      I would give all I have for a cure.
      Sounds good but to a person in the UK, useless. After all we HAD Autifony here for all the good that did.
      So when will the University of Michigan shout from the tree tops and tell the world and let us all have a go?

      I would happily donate to something concrete. I purposely don't contribute to the British Tinnitus Association as they are useless, do nothing and seem to actively block all mention of cures. I feel as do others that they do not want a cure a they will be out of a job.

      I agree with you, they could raise awareness big time but perhaps they really don't suffer as we do or they would use their voice. Pardon the pun, as other celebs do with other illnesses.
      We have an advert running here in the UK for holidays in Florida and William Shatner is in it, on a film set with an explosion going off behind him (the same way he got his T) how useless is that, he is smiling through it, not crying out about the T damage.
       
    26. Hunszi
      Alone

      Hunszi Member

      Tinnitus Since:
      Around 2007, I don`t really know, got worse in April 2015 after a party.
      Because T doesn`t bothers them that much...in my early stages, even if I had 100 million dollars I wouldn`t spend a quarter for researches. Why?? well the answer is simple...just because I was 100% okay with T. Never disturbed me even though I heard it and had it for almost 7 years.
       
    27. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      if it seems to work, I guess? Running clinical trials is expensive; it doesn't make sense to do large global trials until you have more to go on than animal data. I believe their plan is to do a more extended trial in other US locations if this first pilot study pans out.

      And, this isn't just 'useless' to anyone in the UK, but also to the large number of people in the US who are not able to just drop everything on a whim and go spend 3 months in Detroit. I'm only able to do so because of a sort of odd confluence of good luck, privilege, and happening to have a job which can be performed from anywhere that I have an internet connection.

      If I have any success at all with this, believe me, I will be up in the trees myself :-p
       
    28. Reinier
      Not amused

      Reinier Member Benefactor

      Location:
      Netherlands
      Tinnitus Since:
      06/2015
      Cause of Tinnitus:
      Explosion starting engine
      Could this be a mechanism in one's mind? Perhaps a protection?
      If this affliction or suffering is past tense for you (i.e. you are a person that habituated to the T) it is difficult to place yourself in this situation again. You forgot how horrible it was at the time.
      Could this be a factor?
      Still I agree that there could be consideration. In general with a little effort it should be easier to sympathise with people that are there now where you already have been.
       
    29. Atlantis

      Atlantis Member

      Tinnitus Since:
      02/2014
      A more likely scenario is that Mr. William Shatner was paid a lot of money for the advert and that's why he took the job.
       
      • Agree Agree x 2
    30. jss
      No Mood

      jss Member Benefactor

      Location:
      USA
      Tinnitus Since:
      June 2013
      I know he has donated a lot of time and effort toward tinnitus awareness. Not sure if he was paid or not. He is really the only major Celebrity who has had the courage to really tell his story....Thats priceless
       

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