Hough Ear Institute's Hair Cell Regeneration Project

Discussion in 'Research News' started by all to gain, Oct 2, 2019.

    1. David S

      David S Member Benefactor Ambassador

      Tinnitus Since:
      10/2013
      Even if it is 5-10 years away, it would mean so much for the whole community. If we just could have reports of 1-2 treatments that gives meaningful results, it would give us all so much hope and absolutely boost the ones that are struggling the most.
       
      • Agree Agree x 7
      • Like Like x 1
    2. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      I do plan on remaining professional as I always have with the dozens of doctors I have seen. I am in a state of crisis but I do my best to remain calm. I have had, what to me and from analysis I’ve done across the board, severe tinnitus for over 2 months at this point, and, while I do not like to compare suffering and feel for everyone on this board, in my personal experience, it has completely destroyed my life and continues to do so. My tinnitus is constant, centralized, high frequency (14-15 kHz) and oscillating with a painful zinging quality as well as hyper reactive along with sound sensitivity. What this has meant is I was in fight or flight mode for the first 6 weeks and nearly hospitalized, and still struggling with the severe anxiety constantly despite medication. I lost the ability to leave my home due to the severe panic last week and am working to try and reverse that. It’s also completely isolated me as I have spent nearly 2 months in near silence pacing like a prisoner in my home because of the reactivity, so most of my life no longer exists. I’ve lost a number of relationships as people no longer know how to deal with me. And I’ve just lost my supplemental income which was a bartending job as well as threatening my full time job because I can barely function. Not to mention the bankruptcy which is on the way from the thousands and thousands of dollars I have spent between bad healthcare and alternative treatments that did not touch this at all.

      I am very sorry to hear about your situation and can’t imagine the pain you are going through but I will do my best in my consultation to express the severity of my situation and the necessity of compassionate use. I can’t tell you how many times, as many others, have experienced that I have been belittled for this condition regardless of whether I was emotional or not. Based on what we know with Dr. Kesari having experience with compassionate use we can at least have hope that he is a more understanding doctor than the rest and I would hope he wouldn’t allow any experience with one patient to influence another.
       
      • Hug Hug x 8
    3. Tau
      Probing

      Tau Member

      Location:
      Europe
      Tinnitus Since:
      2019
      Cause of Tinnitus:
      2019-Concert, 2021-headphones/acoustic trauma at 110dB,16kHz
      Has anyone asked if the IV dosage is different from the oral dosage?
       
      • Good Question Good Question x 1
    4. Joeseph Stope
      Innocent

      Joeseph Stope Member

      Tinnitus Since:
      1992
      Cause of Tinnitus:
      noise? infection? negative stress? other?
      My fullest sympathies and wish you the best of luck with this.
       
      • Like Like x 2
    5. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Thanks. I appreciate it. Good luck!
       
      • Like Like x 2
    6. Taw

      Taw Member

      Location:
      Europe
      Tinnitus Since:
      Pain hyperacusis since 03/2021
      Cause of Tinnitus:
      Acoustic trauma (drum lessons)
      When do you have the appointment, Brian?
       
      • Good Question Good Question x 3
    7. Gee82

      Gee82 Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Noise
      @IntotheBlue03, @Brian Newman, I called yesterday to request a telehealth appt.

      The lady said that she would email me an application form that I should fill including all my exams (MRI, audiograms, etc.) for Dr. Kesari to review and then he would decide whether to set a telehealth call with me.

      Were you also requested to submit your exams in order to be accepted for the call?
       
      • Good Question Good Question x 3
    8. Freerunner

      Freerunner Member

      Tinnitus Since:
      10/2021
      Cause of Tinnitus:
      Caloric test
      @IntotheBlue03, as far as I have understood, you have your appointment today. Please share how it went.
       
      • Agree Agree x 4
    9. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Hi, yes, that’s correct. I’ve had so many doctors appointments I have all that rapid fire ready to go fortunately. As soon as you do that, they schedule you.
       
      • Like Like x 3
    10. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Hi all,

      Just had my consultation with Dr. Kesari.

      The Good News:

      The chronic tinnitus patient had a positive response but was not treated orally, they were treated via IV. That is what is currently available at Dr. Kesari’s location and nowhere else in the US. Also the effects were short term but apparently reproducible. That’s as much as I could pry away about this patient’s experience.

      Not So Good News:

      The oral formulation is not available yet, he has a meeting in 2 weeks to see if this can be made available in the next 2 months for expanded use in the US.

      I still inquired about if IV use could be made available locally ahead of the oral release and he advised he will look into this in my location. It’s just a matter of finding a local HCP and center to administer this.

      I will follow up in the next couple weeks. Not out of the woods yet. Hope this helps.

      @Brian Newman, Dr. Kesari is very kind and compassionate and I am sure your consult will go even better.

      Here’s to hoping we can get some movement on this regardless of route of administration.
       
      • Winner Winner x 5
      • Informative Informative x 3
      • Like Like x 1
    11. Gee82

      Gee82 Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Noise
      Do you mean that the patient’s tinnitus returned when he stopped taking the drug?

      Thank you for sharing with us.
       
      • Optimistic Optimistic x 1
    12. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      I can only assume so but I wasn’t able to gather any more information than that.

      @Brian Newman, that’s something to try and inquire further about at your consultation.
       
      • Like Like x 1
    13. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Thanks, I’m glad you got some good information. My appointment is in a few weeks. I’ll let you know what else I can find out. Let’s get this drug moving. That’s a bummer it’s IV but the pill should be good too if we can get it. It’s up to Oblato.

      Did you discuss with him how to get you the pill since you’re out of state? It’s different from a doctor calling up your local pharmacy and saying you need some steroids.
       
      • Good Question Good Question x 1
    14. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      I did not since the oral formulation isn’t available yet. Please inquire him on my behalf if you don’t mind. :) I’m sure he will hopefully have more information for you after meeting with Oblato, good timing for your consult.

      At this point I’m honestly looking to get the IV rather than waiting for the pill since Dr. Kesari discussed it as an option. I’ll see how far I get with that.
       
      • Agree Agree x 1
    15. Eliot Martin

      Eliot Martin Member

      Tinnitus Since:
      10/2021
      Cause of Tinnitus:
      Medications
      Did Dr. Kesari mention the durability of the IV injection? If he said the effect is short term, did he point out how long does the benefit last?

      Thanks.
       
      • Good Question Good Question x 1
    16. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      No he didn’t share any further information with me. I definitely did try to ask. I will ask again in my follow-up and advise anyone else having a consultation to do the same.
       
      • Agree Agree x 1
    17. ColinUK

      ColinUK Member

      Tinnitus Since:
      2013 initial, worsened 2020
      Cause of Tinnitus:
      Initial Music Gig, Worsened Cinema or possible covid
      I thought this pill / drug was supposed to be repairing nerve connections. If it's doing that, why would the positive results not last?
       
      • Good Question Good Question x 4
    18. ThomasF
      Creative

      ThomasF Member

      Location:
      Florida
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Probably loud music
      Given that this medicine is still in efficacy trials, it would be wise to have an open mind as to the relief offered. It could be a functional cure for some and a slight aid in others.

      As we understand, this particular drug is not intended to target tinnitus specifically as a symptom and so to expect it to cure the ailment is a little steep.

      Don't lose heart if this particular treatment yields disappointing results for tinnitus sufferers, for it is but one treatment and is one of at least two that Hough Ear Institute is developing. The other being an injection meant more for hearing loss and so potentially tinnitus.
       
      • Like Like x 2
    19. Eliot Martin

      Eliot Martin Member

      Tinnitus Since:
      10/2021
      Cause of Tinnitus:
      Medications
      Maybe he damaged his nerve connections again LOL.
       
    20. Eliot Martin

      Eliot Martin Member

      Tinnitus Since:
      10/2021
      Cause of Tinnitus:
      Medications
      What happened to your appointment with Dr. Kesari? Did you or are you in the process of acquiring the drug?

      Thank you.
       
      • Good Question Good Question x 1
    21. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Hi @Eliot Martin.

      Unfortunately not yet due to the fact that the oral administration is not available in the US yet and the IV administration is not in my area. Dr. Kesari is meeting with Oblato regarding this soon so he advised me to check back in with him over the next 2 weeks to 2 months. I will be following up of course.
       
      • Like Like x 8
    22. OptimusPrimed
      Spaced

      OptimusPrimed Member Benefactor

      Tinnitus Since:
      10/2007
      Cause of Tinnitus:
      Acoustic trauma - Repeated gun blasts
      While I hope it helps you, I believe the drug was developed to treat tinnitus and hearing loss stemming from noise causes. Best of luck.
       
      • Like Like x 1
    23. IntotheBlue03

      IntotheBlue03 Member

      Location:
      Philadelphia PA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Cervical/TBD
      Thanks @OptimusPrimed, I appreciate that. We will see how far I and others get at this point, hoping we aren’t held back by too much regulation or red tape.
       
      • Agree Agree x 2
    24. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      @IntotheBlue03, just got off the phone with Dr. Kesari. He said the same type of thing to me. We have to wait a month or two and see what the company says because they are definitely aware of its potential to treat hearing disorders. He put me on a list. He said to check back in a while and hopefully we can get the IV or pill form. He said the IV is better, pill form needs some work.

      I still ask anybody reading this, do not blow up Dr. Kesari, we need to bring the worst patients to him, and get in the compassionate use trial for the drug. Too many contacting him will ruin it. As of now, since me and @IntotheBlue03 contacted him, nobody else do anything yet. We will let you guys know what the deal is in the next month or two. Once Oblato figures it out, then start contacting your doctors. Let’s hope this drug helps.
       
      • Like Like x 2
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      • Funny Funny x 1
      • Informative Informative x 1
    25. Gee82

      Gee82 Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      Noise
      Excuse me, who are you to select which cases should be brought to Dr. Kesari?

      I am as desperate for help as you are (or more) and I certainly won’t sit back and wait just because you say so. My consultation is scheduled in a few weeks.
       
      • Like Like x 2
    26. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      @IntotheBlue03 has acute tinnitus.
       
    27. ZFire
      Bored

      ZFire Member Benefactor

      Tinnitus Since:
      2011 (mild) & 04/2021 (severe)
      Cause of Tinnitus:
      Ototoxicity (2012) Unknown-likely noise induce (2021)
      How are you feeling after the phone call? Were you able to handle it well?
       
      • Good Question Good Question x 2
    28. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Lol l love your tone. In case you haven’t read my story, go read it... Tinnitus is the least of my worries right now.

      #1 if you’re just suffering from tinnitus, don’t talk to me like that.

      #2 my pain hyperacusis would make you cry like a child.

      #3 I have had tinnitus and have had tinnitus for many many years.

      #4 Pretty sure nobody here would have contacted Dr. Kesari if I had not have said so. I was looking into compassionate use since November. Nobody did crap until I said to do it. The only person who can talk to me like that will be the gentleman who posted the compassionate use article.

      #5 tinnitus sucks, I hate it, it can ruin your life, but having so much pain that you’re literally having seizures and throwing up, lost your career, your money, your friends, your entire life, 30 pounds of weight gone, I’m pretty sure you got no place to talk buddy. Unless your tinnitus is 10/10 severe, so loud it sounds like a jet. Even then you’re probably not in pain. This is very controversial because way fewer people have pain hyperacusis but it is much worse.

      Do you even know everything about this drug? I bet you don’t know its properties, and what kind of regenerative potential it has. You probably will look this up before you respond.

      Take a chill you whiner, I didn’t say for anybody to not get the drug. I said for people not to keep hounding him, @IntotheBlue03 and I both posted he can do nothing but wait months for Oblato to figure out what they’re doing. No use hounding him. I’m only desperate to get this because this condition might actually kill me. Not panicking because I can’t sleep at night. So relax and watch who you’re talking to.
       
      • Hug Hug x 3
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    29. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Yeah I know. Once Oblato figures it out and contact me I will let everybody know right away.
      I was on Zoom and had subtitles on. I heard his voice for a minute or two. Pretty painful. But got through it. Had to get it done.
       
      • Like Like x 2
      • Hug Hug x 2
    30. dbeats

      dbeats Member

      Tinnitus Since:
      2020
      Cause of Tinnitus:
      Loud noise
      Hough Ear Institute Hearing Loss Pill Moves...


      "We expect Phase 2 clinical trials to begin this year."

      That was in 2020, does anyone know if the Phase 2 clinical trials were ever started?
       
      • Funny Funny x 2
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