Amazing — I'm Told People Don't Want to Give Towards Tinnitus Research

Discussion in 'Awareness & Fundraising' started by Allan1967, Oct 25, 2018.

    1. Bill Bauer
      No Mood

      Bill Bauer Member Hall of Fame

      Tinnitus Since:
      February, 2017
      Cause of Tinnitus:
      Acoustic Trauma
      This reminds me of a Russian saying that roughly translates as: "If you were to have vegetables growing in your mouth, it would not be a mouth, it would be a garden."
       
    2. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Thank you for getting it.
       
    3. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Ed209 I can think of many types of tinnitus awareness.

      A few thoughts, but very incomplete:

      NORD - National Organization for Rare Disease - needs to consider tinnitus as more than just a rare disease. US Social Security Disability uses NORD. https://rarediseases.org/ Within this site, review Rare Disease Day.

      To really have a chance of getting disability, a doctor needs to say that his patient can not work. Many doctors will not do this because of reporting requirements.

      I have written letters to two universities with large endowment funds - medical research endowment funds.
      Response was we do support research with a need - that has a valid approach.

      Markku has posted information about numbers of research studies and pubmed published articles and such.

      Tinnitus has many causes. Research is being done on many medical conditions that may relate to one's tinnitus.
      A doctor recently posted here saying that the neck- jaw may have the most influence. I have posted links saying that the neck, jaw and posture is high on the list.

      The ENT manual for care of a tinnitus patient is over 45 pages long. I have posted this link and it would take hours to examine each patient.

      I posted an article where someone who had received tinnitus from loud noise exposure. He was immediately placed in the hospital and treated for over a week. He was given way more that prednisone. He was given other drugs thru IV and injection. He was given HBO. After hospitalization he became an outpatient. His severe tinnitus is gone.
      The rich and Prime Ministers get the same treatment care - hospitalization.

      Nursing home care within the US is expensive - 50 thousand or more a year. I have donated way more money in the past than the present. Nursing home care for me may cost $500,000 dollars if I live that long. I also have others to think about.

      If I didn't have such severe tinnitus and physical pain, I would spend time on the projects that I mention in post #56.

      For me, I should had not let someone clean my ears the way it was done even though pigeon dust was life threatening. I also should not had let a dentist place pressure on my jaw where nerves were also damaged.

      This post is not well written - my tinnitus and physical pain is thru the roof tonight.
       
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    4. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      ‘Oh Greg - I’m so sorry.’ xx
       
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    5. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      increasingly uncertain, maybe noise, maybe somatic ?
      A major reason for the reluctance of tinnitus sufferers to donate is that a lot of pointless research is being carried out, based on basic assumptions that do not apply.
      For example, much research is based on the destruction of hair cells. However, it is completely unproven that tinnitus sufferers have more hair cell damage than healthy people (with comparable hearing loss).

      In addition, you are already in the dark when it comes to the selection of people affected by tinnitus.
      All causes and manifestations of tinnitus are lumped together. One-sided tinnitus, or both-sided, or in the middle of the head, everything seems indifferent. Acoustic trauma or sudden hearing loss as cause or whatever, - no matter. Whether it primarily whistles high-frequently, or hisses rather like white noise, likewise uninteresting. Whether the noise can be somatically influenced, why the question? etc. and so on.

      And with such a heterogeneous selection of patients - some primarily mentally ill people might also be included - clinical studies are then carried out.

      An understanding of tinnitus as a homogeneous disease with the same causes cannot lead to reasonable results.
       
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    6. david c

      david c Member

      Tinnitus Since:
      01/2012
      I guess it's a case of people assessing what type of tinnitus research they wish to support and how best to do so. I have given money to the BTA in the past but won't do so again as they are not spending their money to research towards a cure for tinnitus.

      Fundraising is important but so is changing people's perceptions of what tinnitus is. When I first started suffering from tinnitus in 2012 NHS Choices - probably the most important source of tinnitus information for tinnitus newbies in the UK (as it will come very high on any UK Google search about tinnitus) was describing tinnitus as "only a symptom of other conditions not a condition in its own right" in their webpage on tinnitus. NHS choices didn't even have any information about hyperacusis.

      I spent hours of my time petitioning them to change the information about tinnitus to say that it was a medical condition - not just a symptom of other conditions - and eventually they agreed to do so - and to add information on their website about hyperacusis. One example of how we can all get involved to ensure change to the way tinnitus is described and dealt with in our own individual countries.
       
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    7. Red
      Crappy

      Red Member

      Location:
      Northeast USA
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Noise Exposure (Headphones)
      I have to help myself before I can help others. My life is in shambles and I have to pick up the pieces. I'm not like you. I was never a go-getter. I am well aware of my flaws. I know I am lazy and I know I'm weak. But I am not the idealistic one.

      You can have every single person donate 10 pounds, 20 pounds and NEVER get a cure. What I think is this: We are never getting a cure in our lifetimes. Hope is a dead thing to me. I'm glad you have it but I do not. Yes we have neuromodulation coming. Not all of us can use it, at least with information we have. Supposedly tinnitus sufferers with H are locked out.

      You want to fight, that's not a bad thing. Fighting requires energy, something I lack. Like I said, I was never a go getter but since CP, tinnitus and hyperacusis, year after year I'm more worn down and am becoming slower and slower with less and less energy and overall worse health.

      I hate to bring it up but I find it relevant here. After the 2016 USA presidential election I don't think any of this voting or 'voting with your money' matters. I am one salty b over my preferred candidate not making it past the primary despite his huge, huge following and the amount of organization that was pretty much unprecedented. Not only voting but also the mass organization doesn't make a lick of difference when you're the underdog.

      People here can be very religious. Not a bad thing. I too have my own personal beliefs and philosophy. I truly believe my life has no meaning, that I'm not fit for this world, that I am a 100% flawed human being with no positive traits, and that I would not be missed if I left this world. I am a single worker ant in relation to the world's population.

      ...I do want to donate for the record. I just have immense trouble doing ANYTHING outside of a routine. I have trouble working through my self destructive behaviors and need to be able to work on changing myself. I sincerely, sincerely, sincerely do not think my donation would have any impact. But that's not what is stopping me.

      I would not be saying any of this if it wasn't a support forum. Don't know if talking about this kind of thing is unwelcome or not but that's where I'm at.

      Apologies for rambling.
       
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    8. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      @Red what is CP?
       
    9. Red
      Crappy

      Red Member

      Location:
      Northeast USA
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Noise Exposure (Headphones)
      Chronic pain.
       
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    10. Bill Bauer
      No Mood

      Bill Bauer Member Hall of Fame

      Tinnitus Since:
      February, 2017
      Cause of Tinnitus:
      Acoustic Trauma
      Didn't an underdog win that election? He had the Republican Party, the media, the education system, Hollywood, corporate America, the Unions, and even the Vatican against him. Seems like an underdog to me.
       
      Last edited: Oct 30, 2018
    11. Holly1987

      Holly1987 Member Benefactor

      Tinnitus Since:
      09/09/2017
      Cause of Tinnitus:
      Unknown p
      I personally believe donating to Tinnitus Talk can save lives, without this forum I really don't know if I would have made it. Perhaps your donation ultimately won't lead to finding a cure but it will certainly help a lot of people.
       
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    12. kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Advocate

      Location:
      United States
      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      We do know that the brain maps and unmaps very quickly depending on input! I wish this community was as focused on the brain as the ear. So many conversations need to happen about this. Restoring input (improving hearing) means nothing if your brain doesn’t remap. Alternatively, if you can remap your brain, your hearing doesn’t matter so much.
       
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    13. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Quick bit of background: I've had tinnitus 20 years. In the beginning I did all the net searching; treatments/vitamins etc etc.

      20 years later: I'M STILL F**KING HERE

      Brought back to the tinnitus community again following a spike 4 weeks ago. And you know what? I'm reading the same posts now that I did 20 years ago.

      But that doesn't mean nothing has changed. Oh no... we have social media now, we have websites, email, Skype and suddenly all those researchers looking for a cure or treatment for US are easily contactable. The world is a smaller place all of a sudden and we have power in numbers. But only if we act.

      So I'm a veteran to this and do you know what moment's realisation I had when I was dragged kicking and screaming back here?

      Your government isn't coming to your rescue.

      Now, if they aren't, who is?

      Nobody, it's just US and a handful of prominent reserchers.

      Now here's the deal - YOU ARE NOT GOING TO GET A CURE ANYTIME SOON IF RESEARCHERS DO NOT HAVE THE REGULAR FUNDING TO SUPPORT THEIR RESEARCH.

      I've been in contact with the University of Pittsburgh recently and today I received a very polite email saying that a drug has been invented that treats and prevents tinnitus - it's currently in the preclinical stage, the next stage being human trials to establish dosage requirements; side effects etc BUT they have already HAD their funding, and this stage can't be brought forward quicker WITHOUT FUNDING.

      So what are we going to do? Throw our money at snake oil continously? Spend all day trawling the net looking for that one snippet of info that will save us from this nightmare?

      Or are we going to have that moment's realisation, wake up and REALISE this is how we help ourselves.

      I'm not touting you to donate to the Uni of Pittsburgh - donate to who you want but do something to help those people out who are trying to help us out or you're going to be sitting here in 20 years' time asking the same questions over and over.

      HELP THEM TO HELP US.

      If you want to see the email I can screenshot it.
       
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    14. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      You are talking about Prof Thanos Tzounopoulos’s work, to which we are very aware. He had a novel compound called SF0034 which worked on KV potassium ion channels in the brain. However, this compound has been at the preclinical stage for quite a while now and nobody knows if he’s still developing the same drug or if he’s working on something else.

      The Daniel Ballinger Fund had Prof Tzounopoulos as an option and he came second in the vote (he came 1st in the non-donors’ poll that was held on this site).

      However, drug trials cost millions and we can’t even raise £10,000, so we have to be pragmatic about how we use our money. I’d love for the community to help his work but it just won’t happen. There aren’t enough people who care enough to throw a few bucks (quid) in.

      As an aside, have you donated to anything yet? I’m not being critical of you, I’m just curious as you are clearly interested in funding research.

      There are currently two campaigns running, right now, that are sending money directly to research.
       
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    15. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Holly1987 this is my reasoning also. What has happened here with recent events has begun a process that will result in something much bigger.

      I also donate towards @Ed209's fundraising events because I was in that place back in 2003-2006 raising funds and the effort suddenly was cut off for various reasons. I gave up and simply dropped out of this scene.

      Me also @Allan1967. My journey started in 2002. And the story of it is not pretty. But, like you the answers are all still the same.

      @Allan1967 by donating towards Tinnitus Talk as a whole you will be a part of the process that is already beginning to form a very large change. Starting with @Ed209's Danny's fund. The first effort ever by a forum that is now a huge deal with the BTA overseeing student grants.

      In fact right now I am going to say this. My husband and I will donate 500 dollars to Danny's fund towards the end of the year and this will be for those who are unable to afford to donate or have donated all they can.

      I challenge others who are financially able to help me with this so we can continue to raise the amount for the student grant.

      This is the first time for this type effort and it is beginning to be talked about quite a lot in the industry thanks to the BTA's help.

      We must take up the slack where others are unable to do so. And those are the people who are giving all they can and it is financially a hardship. Please let's help out more.

      So are there others financially able and will join in on our contribution towards this cause?
       
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    16. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      increasingly uncertain, maybe noise, maybe somatic ?
      A drug that really helps would be a huge business for any pharmaceutical company, more profitable than Viagra.

      But without an idea, money doesn't help at all.

      I doubt that, as far as tinnitus is concerned, ion channel research or animal experiments are appropriate approaches.
       
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    17. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      @Allan1967, I agree with @Starthrower that donating to Tinnitus Talk is always a worthy cause. A LOT of work goes on behind the scenes here that largely goes unnoticed. There are many unpaid hours of tireless work promoting tinnitus, raising awareness, and collaborating with researchers. They have provided useful data, and the founders of Tinnitus Hub, Markku and Steve, recently got named on a paper as co-authors:

      https://www.tinnitustalk.com/attach...ty-and-responsiveness-to-treatment-pdf.22076/
       
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    18. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      He needs to explain his idea a little better. I still have no idea what his hypothesis is or what he is going to test.

      Shit, give me and @PolishSoldier87 your money and we will research tinnitus.
       
    19. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      John, in a nutshell he believes that tinnitus arises in the dorsal cochlear nucleus (same as many other key researchers), and his work has shown that this is caused by a reduction in tiny channels called KCNQ (KV) channels, through which potassium ions travel in and out of the cell. He is attempting to reduce this channel activity, and in return, reduce the perception of tinnitus.

      Retigabine/Trobalt worked on the same principle, but wasn’t as refined or focused as this compound/s will potentially be.
       
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    20. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      increasingly uncertain, maybe noise, maybe somatic ?
      Do the important tinnitus researchers really agree that potassium channel blockade of the dorsal cochlear nucleus is helpful?

      And that for all causes and types of tinnitus?

      :beeranimation:
       
    21. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      If you are willing to share it, I'd like to see that email.

      I've been poking around a bit on the internet and University of Pittsburgh's websites. Keep in mind, I am a relative newcomer to the world of tinnitus, having developed it a year and a half ago. But, it looks to me that there were actually 2 compounds that came from Prof Tzounopoulos's lab. The first was an analog of Trobalt that was sold to a company called SciFluor. SciFluor further modified the compound by adding fluorine to it. Fluorine is highly reactive in the body. The hope was that the fluorinated version would be more specific for the K receptor of interest in tinnitus and that it would therefore be more potent and with fewer side effects than Trobalt. This compound is the the SF0034 @Ed209 refers to. I'm fairly certain that SF0034 has failed in preclinical testing.

      However there is another version based on Trobalt that was produced by Prof Tzounopoulos and another professor in the pharmacology unit at University of Pittsburgh. The question is - where is that compound? It was called RL-81. Is it in preclinical testing? That may be the subject of Allan's email.

      The thing that is puzzling me is that University of Pittsburgh has an Eye and Ear Foundation. Why aren't they raising money to fund further study of RL-81?

      Also, Prof Tzounopoulos has grant money through 2022, how does this fit into the picture. Key question - Does University of Pittsburgh still own RL-81, I'll assume it holds the patents, but how is it connected to the US Army, Dept of Defense if they were the grantor during development? And, if they were the grantor, why are they walking away?

      Something else to consider is that there is no objective measure of tinnitus in humans and no clinical testing guidelines. These are yet to be developed and agreed among the tinnitus research community. How does that fit into further development of RL-81?

      Personally, I'll wait to donate to Prof Tzounopoulos or tinnitus research at University of Pittsburgh until I understand the entire picture - there are too many unanswered questions and my resources are not infinite so they must be well placed. -TC

      Research Grants
      • U.S. Army-DOD, Tzounopoulos, Development of Therapeutic Drugs that Prevent the Triggering of Tinnitus, W81XWH-14-1-0117, July 2014 - July 2017
      • NIH, Tzounopoulos, Cell-Specific Synaptic Plasticity in the Auditory Brainstem, 5R01 DC007905, March 2007 - February 2022
      • Allergan, Tzounopoulos, Cortical Mechanisms Underlying Tinnitus, 5910001-20012000358, August 2016 - August 2019
      • NSF, Tzounopoulos, NSF-IOS-BSF: Influence of neuronal zinc homeostasis on cortical responses to sound, IOS-1655480, September 2017 - July 2021
       
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    22. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      That question can’t really be answered in simple terms because tinnitus is far too complex. Many believe that potassium channels play a role in people’s tinnitus, but tinnitus can follow many pathways through the brain, so I doubt we’ll be able to fix everybody’s with the same approach.

      Here’s a short explanation of the theory by Dr Neil Bauman:

      In the past few years, scientists have discovered that tinnitus can arise in various areas of the brain when too much spontaneous neuronal activity takes place, and, for whatever reason, the normal inhibiting mechanisms fail to suppress it.

      As time goes by, researchers are more and more zeroing in on the specific areas of the brain and the specific mechanisms that can lead to tinnitus. For example, Dr. Martine Hamann of the University of Leicester in the UK recently discovered that exposing your ears to loud sounds can trigger uncontrolled activity in the neurons of the dorsal cochlear nucleus. (The dorsal cochlear nucleus is the area of your brain that relays signals from your ears to other parts of your brain that decode and make sense of the sounds you are hearing.)

      According to Dr. Hamann, normally neurons receive a sound signal, fire and then return to a state of rest. This happens because potassium channels help “drag down the cellular electrical activity to its resting state”. (1) This allows neurons to function in regular patterns in response to sound signals.

      However, loud noises inhibit the potassium channels’ ability to properly regulate excess neuronal activity. This means these neurons do not return to their resting state. Instead, they “fire continuously in random bursts, creating the sensation of constant noise where none exists.” (1) We call this resulting noise tinnitus.

      Now you know one reason why it is so important to protect your ears from loud sounds. You do not want to inhibit the function of the potassium channels or else some of the neurons in your dorsal cochlear nucleus may begin to fire erratically, and you could be left with loud tinnitus.

      For researchers, the next step is to find ways to quickly get the potassium channels working properly again. The thinking is that when the potassium channels do their jobs properly, they will suppress all this extra neuronal activity, and this will greatly reduce or even eliminate tinnitus from this cause.
       
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    23. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      increasingly uncertain, maybe noise, maybe somatic ?
      It may be that the classic case of tinnitus - the tinnitus after acoustic trauma - may indeed be treated with channel blockers.

      However, it is largely unclear whether tinnitus has to do with hearing loss, with destruction of hair cells, with neuronal overactivity.

      In my opinion, it should first be tried to diagnose hearing damage, destruction of hair cells and neuronal overactivity in DCN with certainty.

      In my opinion, therapy attempts without a clear diagnosis are not the right approach.
       
    24. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Might be a little difficult if the campaign is closed... ;)

      upload_2018-11-2_17-39-4.png
       
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    25. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      A Kv-channel opener such as Trobalt has the function of increasing (not reducing) the number of potassium channels that are open (at rest) thereby forcing the cell membrane potential to stay at its resting potential (and hence prevent misfiring of a neuron).
       
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    26. attheedgeofscience
      No Mood

      attheedgeofscience Member Mighty Benefactor Hall of Fame

      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
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    27. Paulmanlike

      Paulmanlike Member

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
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    28. kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Advocate

      Location:
      United States
      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
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    29. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I just noticed this glaring error, but I’m typing a lot of this stuff from memory, and it’s been a while since I looked into it all. I doubt Allan, or Tinniger, wanted anything that precise anyway. The gist of the message remains the same.

      It’s clear the activity increases from what Neil Bauman says in the extract I quoted.
       
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    30. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Oh. I was unaware of this. Never mind anymore... nice way to find out. :banghead:
       
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