Why Do We Accept That HL and Tinnitus Are the 3rd Most Prevalent Chronic Diseases in the World?

Discussion in 'Support' started by ResonanceCEO, Nov 14, 2013.

tinnitus forum
    1. But there is no cure. I am going deaf as we speak. I may not hear a my son's laugh, or hear at my favorite artists's concert in 5 years. Why we do accept this as our fate? I for one do not accept this. We put a man on the moon a generation before I was born (1978). We can find a cure for HL. This is not even as hard as a cure for cancer. People need to get off their asses and be better!
       
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    2. Jake
      Irritated

      Jake Member

      Location:
      Lawrence, KS
      Tinnitus Since:
      07/2013
      I completely agree. I wish there was something I could do to help...
       
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    3. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      Autifony based in UK has already claimed they abolished noise induced tinnitus in all rats in a placebo controlled experiment.
      It is now in early phase human trials. I am sure there is a drug that can abolish tinnitus, it just needs to be proposed to run in a trial (like Autifony did).
       
    4. Meestijn
      Balanced

      Meestijn Member Benefactor

      Location:
      The Netherlands
      Tinnitus Since:
      08/2013
      Do you have link of that drug!
       
    5. Tenna
      Anime

      Tenna Member

      Location:
      Europe
      Tinnitus Since:
      10/2013
      Autifonyyy do take my moneey
       
    6. There are actually a lot of drug companies doing work on tinnitus and HL. Many of them have started clinical trials in humans - not just preclinical trials in rats. Autifony actually has drug that is in Phase 1 clinical trials - meaning it is further along than the rat study. Other companies working on this problem that have begun human trials are GenVec ($250 million collaboration with Novartis in clinical trials to regrow hair cells), Sound Pharmaceuticals (SPI 1005 is Phase 2 clinical trials), Otonomy (Phase 1 clinical trials for a steroid formulation - this company is also has the most capable business and science team of them all), Auris Medical (which is furthest along with Phase 3 clinical trials), and Otologic Pharmaceuticals (has done some clinical trials in the military on N-acetyl-cysteine - I'm not hopeful for this one). Quark Pharmaceuticals and MedGenesis are also working on hearing loss solutions but do not appear to be in human clinical trials. The there is no public access to clinical trials until phase 4, but you can always monitor the above websites and try to sign up for clinical trials at clinicaltrials.gov in the US to have earlier access. Not sure about the process in other countries.
      Chris
      CEO
      Resonance Medical Technologies
       
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    7. Hudson
      Cowboy

      Hudson Member Benefactor

      Tinnitus Since:
      2003

      Here's the link to the Autifony clinical trial information (they are still in Phase 1, which they are only accepting healthy volunteers by invitation for) http://www.autifony.com/publications/Autifony_AUT00063_FIH_Start__Fundraising_FINAL_03Jun2013.pdf

      The AUT0063 compound appears is another potassium channel modulator, similar to Retigabine which the University of Pittsburgh recently has said abolished tinnitus in test subject rats.

      Retigabine and AUT0063 work on separate potassium channels, however. There's a good number of them if I remember correctly.
       
    8. seal

      seal Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      12/2007
      Cause of Tinnitus:
      acoustic trauma
      does anyone understand why they think it only helps with Tinnitus that comes from age related hearing loss but not other forms of Tinnitus?
       
    9. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
      I think it is because they pretty much know what causes age related tinnitus which is hearing loss. The simple act of aging causes hair cells in the cochlea to die. This leads to hearing loss and tinnitus in some people. They feel that repairing or replacing these hair cells will not only improve your hearing but also possibly eliminate tinnitus. Even if they are not able to regrow hair cells they can target other areas of the brain to lower the excitability which causes the tinnitus.
       
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    10. seal

      seal Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      12/2007
      Cause of Tinnitus:
      acoustic trauma
      I see! Thanks for the explanation :)
       
    11. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
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    12. I agree that this is good, and will advance the science. My collaborator at Northwestern is working on some really cool hearing restoration therapies too, but the stuff that's coming out in the next five years is going to come from the start-up community of pharma and drug delivery companies.
       
    13. Erlend
      Question it

      Erlend Member Benefactor

      Location:
      Scandinavia
      Tinnitus Since:
      05/2013
      RE: age and hearing loss

      My mom asked me to describe my T sound so I made a "S"-sound as high pitched as I could, which wasn't anywhere near the pitch of my T. Was basically a regular "S" but more like a snake would say it.

      She couldn't hear it. And this is apparently pretty normal, that people can't hear S.

      She has so much problems with her eyes and her back, I hope she doesn't get tinnitus as well.
       
    14. NeoM
      Moonlighting

      NeoM Member

      Location:
      America
      Tinnitus Since:
      10/31/2013
      Yeah, but how soon are we close to making modest or large improvements? I mean...if there's not cure but you can restore 40-60% of hearing that's pretty good. Likewise with tinnitus, if you cannot get rid of it, but reduce it by 70% that's good.
       
    15. Lulubug69
      Artistic

      Lulubug69 Member

      Tinnitus Since:
      9/2013
      What about slight hearing loss and meds causing T. Is that all related to hair cells being damaged? I thought T was caused by hair cell damage overall. Loud noise damages them right and ototoxic drugs. Which came first hearing loss or hair cell damage. No one has told me where my T came from. I'm pretty much guessing all of the above. I'm only 50, don't know when typical hearing loss occurs in older adults. I guess I've got a lot more research to do.
       
    16. The answer to this is very complicated. But in general the tinnitus you experience after a rock concert comes from overstimulation of the cells of hearing (hair cells, neurons, support cells). They all get damaged, but they do have some ability to repair themselves, just like when you scrape a knee.

      However if a gun is fired next to your ear, or you were drunk, dehydrated, and smoking at the rock concert, that can result in overwhelming inflammation in the cochlea that causes permanent hearing loss. This is akin to cutting off your leg or arm and getting phantom limb pain. So your brain has to fill in the blanks using the last signal it had, which was tinnitus.

      Tinnitus are closely intertwined, so its not as simple as chicken or egg. Early tinnitus is just a sign of an insult to the cochlea. Long-term tinnitus is often your brain filling in the blanks for hearing that you've lost.
       
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    17. Eric N

      Eric N Member

      Location:
      Montreal QC
      Tinnitus Since:
      10/2012
      Hello,

      I was just wondering do you know why you have a progressive hearing loss? or have any theories on it?
       
    18. The source of my progressive hearing loss is basically a pre-Meniere's disease. In Meniere's disease the primary symptoms are low pitched ringing (like waves or being inside an airliner), hearing loss that fluctuates over time and between the left and right, and vertigo. Fortunately I do not have the vertigo, because this is truly debilitating and causes drop attacks where people get dizzy that they fall down. My doctors say that this will probably progress to full blown Meniere's at some point, but with dietary modifications and exercise, I think I've been able to slow its progress.

      Meniere's is basically caused by inflammation and an imbalance of the charges ions in the cochlea like potassium and sodium. These imbalances cause inappropriate discharge of glutamate from the hair cells into the space between them and the spiral ganglion neurons (SGNs) of the cochlear nerve. When too much glutamate hits the NMDA receptors of the SGNs they get over-excited and get damaged. Eventually this over excitation kills the neurons first. The hair cells and other cochlear structures also get damaged by all of the inflammation and ion imbalances over time, but the neurons die first.

      This is why NDMA receptor antagonists like AM-101 and gancyclidine are promising for my disease and others, because it appears that excitotoxicity of the neurons may be the weakest link. I am also hopeful for drugs that regrow the neurons after they have died off.
       
    19. NeoM
      Moonlighting

      NeoM Member

      Location:
      America
      Tinnitus Since:
      10/31/2013
      What do you think about Dana White that had stem cell therapy for his Meniere's disease? White says it's cured him or at least improved him a lot. Legit at all?
       
    20. I'm not familiar with that story, but its certainly possible. Stem cell therapy is making some really impressive progress in recent years. Could you send me more information that I can check up on? I can check it out and do a post on it.
       
    21. Erlend
      Question it

      Erlend Member Benefactor

      Location:
      Scandinavia
      Tinnitus Since:
      05/2013
      Dana White talks about menieres disease and...
       
    22. NeoM
      Moonlighting

      NeoM Member

      Location:
      America
      Tinnitus Since:
      10/31/2013
      Here's this.

      Dana White media scrum: Meniere's disease cured by stem cell treatment in Germany - Bloody Elbow

      Most of the information I found on it was from google and it was mainly repeating the same information in each link.

      I don't know since you're involved in this area, not necessarily stem cell, but the ear issues if you would know more specifically about the techniques or whatever.
       
    23. Ok I've got some answers, and they have a very unexpected link to my research. Dana White did not get stem cell therapy. He got a treatment developed by Dr. Peter Wehling that is called Orthokine in Germany and Regenokine in the United States (not FDA approved, so its not actively advertised). These treatments are typically used in orthopedics. A number of professional athletes have received it in their joints as a career extender. Besides Dana White's case, I could find no mention of it being used in the ear. I suspect that Dr. Wehling has shared his formulation with an ENT colleague, and that they did an intra-typmanic injection of it. I have some suspicion as to who this might be, but can't be sure and I don't want everyone going crazy calling this person until I can confirm. The orthopedic version of the treatment costs 6,000 Euro and is not covered by insurance. I have no idea of the US cost or of the cost of the Meniere's treatment.

      I had to buy Dr. Wehling's book, "The End of Pain" ($18 on iTunes, but probably not worth buying otherwise) to find this out, but what they are doing is taking the patient's blood down and spinning it down to remove a specific cell type that is rich in a cytokine called Interleukin-1 Receptor Antagonist (IL-1Ra). Interleukin-1 is an inflammatory cytokine involved in fever and other inflammatory conditions. IL-Ra antagonizes (neutralizes) IL-1, so if injected into the ear of someone suffering from an inflammatory condition of the ear like Meniere's, it is conceivable that it could cure them. In Dana White's case, it appears as if it did.

      It should be noted that this is an experimental treatment, and I think that it may only work on a small portion of people on this forum, but it sounds really promising for people like me who could benefit. I'm looking at it as a possible treatment for myself, but I'm going to see if I can track down some more info. Of course I'll share what I find.

      Stop Here If You Are Not Interested In the Boring Scientific Stuff!

      How someone made the connection from an orthopedic joint injection to injecting it into the ear is really an amazing and insightful leap in my opinion. When I was writing this paper, which I was co-first-author on, I snuck a paragraph into the discussion on what I thought was a connection between the bony remodeling in the otic capsule (the incredibly dense bone around the cochlea) and Meniere's disease. The idea was that in diseases where there was a defect in bone growth, that inflammatory cytokines like from the RANKL system like IL-1 were leaking through the bone and into the part of the ear that maintains the ionic gradients that support hearing. It had been vaguely suggested in the literature, but our paper was the first to put it all together and come out and say it. Frankly I was surprised that the publisher let it stay in the paper, because there was only indirect suggestion of a link in the previous literature, and it had only a peripheral relevance to our paper - our experimental mice (who had a mouse version of Meniere's) had a defect in bone growth called hypo-phosphatemic rickets. I suspect that whoever had the ah-ha moment that led them to inject it into someone's ear had read some of the same literature that I had and made the connection to orthopedics - its a super crazy connection to make, and a pretty ballsy move to actually do it.
       
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    24. Samsara

      Samsara Member

      Tinnitus Since:
      2013
    25. NeoM
      Moonlighting

      NeoM Member

      Location:
      America
      Tinnitus Since:
      10/31/2013
      So would this just take care of the vertigo? Or would this solve the hearing loss associated with Meniere's too?
       
    26. Hudson
      Cowboy

      Hudson Member Benefactor

      Tinnitus Since:
      2003
      Dr. @ResonanceCEO,

      I absolutely love your posts and insight. Please continue to contribute here. Expert opinions and research analysis are very highly valued in our community.
       
    27. Karl

      Karl Member Benefactor

      Location:
      Chicago
      Tinnitus Since:
      10/2011
      Chris -
      These links are MAJOR news. So much is happening, things appear to be coming together. Fnally, we may have effective medicines for hearing loss and tinnitus.
       
    28. Stink

      Stink Member

      Location:
      US
      Tinnitus Since:
      09/2000
      how are you now? are you deaf?
       
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    29. jeff W

      jeff W Member

      Location:
      nakatomi plaza
      Tinnitus Since:
      04/2012
      Where on earth did you hear that Dana took Orthokine injections in his ear?
       
    30. Poyraz

      Poyraz Member

      Tinnitus Since:
      February 2016
      Cause of Tinnitus:
      Benzos, Stress, Anxiety, Loud Music, Jaw Problems. Who knows
      God we need to do something! I want my life back!
       

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