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#TRI2019 Tinnitus Research Initiative Conference

Seven Things I Learned at the #TRI2019 Conference

Are you curious about what’s really going on in the world of tinnitus research? Here at Tinnitus Hub it’s part of our mission to keep you informed. We’re kicking off a big project this year, publishing a series of short video interviews with tinnitus researchers. But I’m getting ahead of myself… First, let me tell you a little bit about the Tinnitus Research Initiative (TRI) annual conference that I recently attended.

The TRI was founded with money donated by philanthropist Matteo de Nora. TRI’s slogan is “Together for a Cure!”

The TRI conference is the biggest event of its kind. It brings together tinnitus researchers from around the world, from all different fields and backgrounds. This year was the 12th time that TRI organized the conference; and in that time, it has grown from a few dozen to over 400 participants! The event was held on 17-19 May in Taipei; the first time that it took place in Asia. Our presence at the conference was sponsored by Frontiers, publisher of dozens of prestigious academic journals.

I was present during the whole conference, representing Tinnitus Hub and tinnitus patients generally. I spoke to only one other patient representative at the conference, which signals just how important it is that we attend these kinds of events. Patients’ voices need to be heard; and researchers themselves are the first to acknowledge that it’s all too easy to lose track of patients’ needs and interests when you get caught up in the academic rat race.

Hazel Goedhart, Director of Tinnitus Hub, carrying out interviews

Our presence at the conference meant that not only did we get to interact with many researchers and give them the patient perspective on their work, we also get to take research knowledge back to the community (you guys!). This blog post is only the start of that. As mentioned above, this is really just the first part of a much bigger project. If you’re interested, the full conference programme can be found here, and we will be reporting about it in more detail soon.

For now, I just want to give you my general impressions in the form of these take-away insights:

1. The field has grown enormously

Until just 20 or so years ago, there was hardly any tinnitus research. In as far as it was considered a problem worthy of studying, it was approached merely from the otolaryngological perspective (ear, nose and throat medicine). The field as a whole has grown tremendously since then, as illustrated by the hundreds of participants at this conference from backgrounds like neurology, otolaryngology, audiology, physiotherapy, psychology, genetics, data science, epidemiology, engineering, and more. Although there is still a dire lack of funding, it has been growing. And, very importantly, there is an increasing awareness that tinnitus is a serious public health problem that requires attention.

Tinnitus Research Initiative (TRI) 2019 Conference Group Photo

2. Time horizon for a cure keeps shifting

I heard many people say: “Ten years ago we were all convinced we’d find the cure in 5-10 years. Now, we understand that that was overly optimistic.” So time horizons seems to be ever shifting, to the great frustration of patients. As a result, it’s become harder now to pin anyone down to a specific timeframe; researchers have become wary of overpromising and raising expectations they cannot fulfill. Yet, they all seem convinced the cure (or rather cures) will be found in the next few decades or so, and for some groups of patients considerably sooner.

3. The more we learn, the less we understand

It has only been known since the 1990s that the tinnitus sound is generated in the brain, not the ear. More recent insights have taught us that it’s not just the part of the brain that processes sound (the auditory cortex) that’s involved, but many different parts of the brain malfunctioning together as a network. This means that curing tinnitus is not as simple as targeting a specific area in the brain.

To make matters more complicated, tinnitus is a symptom and not a disease; it can be caused my many different underlying factors or a combination thereof. And to further frustrate matters, tinnitus manifests quite differently in different people, in terms of what they hear and how much it bothers them. All of these factors combined mean that there is a lot more to be learned. Still, there is an overall spirit of optimism. And the fact that tinnitus has turned out to be such a complex and multi-disciplinary issue is, ironically, also making it a more appealing field of study for young researchers.

4. Many approaches, but how to tie them all together?

Some researchers are working to develop treatments, and some are working to understand the basic mechanisms of tinnitus. Dr. Susan Shore highlighted the need for the two to be connected, i.e. one should not start trialing a treatment without understanding the basic science behind it. Others highlighted the need to better connect animal research with human models. Yet others highlight the need to make the jump from small-scale studies to gathering big data about tinnitus.

Then there are researchers who are developing methods for measuring tinnitus, who claim that none of the rest matters if we don’t have objective standards for determining who has tinnitus and in what severity. And indeed, without such an objective measure, it’s hard to determine the effectiveness of any treatment.

So, tinnitus research is a growing, but still somewhat fragmented, field.

5. Sub-typing is the name of the game

The above-mentioned complexities also mean that the cure, when it comes (because I am optimistic it will come in my lifetime at least) will not be one cure but different cures for different people. This almost became a mantra for me after having heard so many researchers say it.

But, what exactly are the different sub-groups of tinnitus patients? How are these ‘sub-types’ to be defined? Do we categorize people according to the cause of their tinnitus, or the bothersomeness, or the type of sound they hear, or their co-morbidities (e.g. depression, chronic pain)? And where exactly does hyperacusis fit in? There’s a lot of discussion going on about this, and it’s quite crucial. Think about it: When testing future treatments for tinnitus, we need to know which sub-groups to test on so that we can find out for whom the treatment works or not.

6. Tinnitus researchers do care

In the 1.5 years since I became part of the online tinnitus community Tinnitus Talk, I’ve heard many patients talk about researchers as if they just don’t care. “Why haven’t they found the cure yet? They only care about their own careers!” I’m not here to dispute that being a researcher is in fact a career – and like most careers, people tend to want to achieve a certain degree of status or acknowledgement. But… I also know that there’s not much money to be made in academia. It’s a hard craft for often very uncertain rewards.

Besides that, tinnitus research is not considered as ‘sexy’ as for instance cancer research or many other health related topics. I heard several tinnitus researchers mention that they were actively discouraged by their mentors from focusing on tinnitus.

Taking all of this into account, why would one still go into tinnitus research? The obvious answer, in most cases, is to help people. So yes, one can become somewhat detached from the ‘real’ world while conducting research, but my overwhelming impression is that researchers genuinely care about tinnitus patients and want to help.

7. But where are the investors?

Something missing from the conference was the presence of investors, e.g. healthcare companies and others who are willing and able to take any new findings and bring them to the market. This is not something researchers can do by themselves, and I don’t think we can hold them accountable for the lack of investor presence at the conference, but it’s a bit of a chicken and egg story. As long as the research field has not sorted out some fundamental issues like a clear sub-typing framework and objective measures of tinnitus (see points #4 and #5), it’ll remain hard to attract investor interest.

Tinnitus Research Initiative (TRI) 2019 Conference

I hope that gives you at least a taster of what went on. At the conference, I managed to interview over a dozen tinnitus researchers. We will turn this into a video series, with about 5-10 minutes per interview. We’re editing as quickly as we can, but it’s a lot of work.

I hardly managed to attend any of the talks during the conference, because I was busy interviewing, and unfortunately, we only had budget for one of us to attend. But… I did get a group of PhD students from the ESIT programme to report on different talks and will be compiling those summaries into a written report soon.

So, stay tuned for more TRI news coming up!

 
Comment on this post on Tinnitus Talk

71 Comments

  • Nancy Emmanuel

    Thank you for this report. I agree that more voices from people with this condition need to be heard. Could we start a fund so more people can attend to be a voice. It would also overcome the problem of attendance at presentations. I am a retired academic and well understand the difficulties os attracting research funding, you make a very valid point in explaining this. As I have recently acquired this condition I am reading all I can and am interested in the social science aspects of research for example lived experience research.
    I am only new to this but it has helped knowing others are experiencing this as well
    Thank you and I look forward to hearing more. Kind regards

    • Hazel Goedhart

      Hi Nancy, thanks so much for your kind and supportive words! We’re just a small group of volunteers doing our best for the cause, so it means a lot to hear this.

      • Bill Davidson

        Aye, I’ve had noise induced tinnitus since I was 20, didn’t even know what it was when I left the army! But now for the first time I feel hope & see light at the end of the tunnel so thank you massively for your selfless input. Very much appreciated 😊👍💪

        Bill

  • Joanne Bodner

    Thank you. I think we need big name people, e.g. movie stars,etc. to be the fund raising face. It’s hard to get performers to admit to tinnitus-until they reach star status and it will not keep them from getting jobs. But some have spoken up. We need to nurture their ability to use their influence to help us get money to bring products that work to market at a reasonable price.

    • Doug Bell

      I have a TV show in New Zealand and I would love to give all my support for tinnitus sufferers.

      I have had severe tinnitus for 12 years and it is now reaching a point where it is a struggle every day.

      I have medication that makes me sleep 18 hours a day, however it isn’t much of a life.

      I take less of the meds so I can have some life and I smoke lots of marijuana to try and keep the sanity.

      Tinnitus is very lonely affliction/disease.

      It’s like being at a party with lots of noise going on all around you so you don’t speak to others in the room.

      I always fail to remember that no one else can hear this noise and I become very anti social.

      So I have my TV show which allows me to forget about tinnitus for a while.

      • Hazel Goedhart

        Hi Doug, that’s interesting. Would you be able to get a tinnitus item on the show, or would that be too off-topic?

      • Daisy Duck

        This is not much of a life, I agree. Sleeping and smoking weed would not work at all for me. Best of luck with that plan.

      • Gary corbett

        I also have severe tinnitus. Only when i distract myself with someting like work or hobby do i cope. Hearing aids do help. I hope they find a cure.

      • Virginia Paulsen

        I absolutely agree that tinnitus is a lonely affliction. It is isolating to have such an invisible disease. One looks healthy enough, so the suffering is discounted. My coping has been to try to stay active. My former favorite past-times of reading and writing are much less appealing. I never used to turn on the tube or radio, but now they are the best companions when I’m physically tired.

        • Rosemary Callanan

          Virginia, I can totally understand how you feel about reading and writing. I used to love reading and now I can’t concentrate on a book. I have had my tinnitus for 35 years and I hate it. I have been told to accept it, but it’s something I can’t do. If you are not well and especially have a headache, it gets worse. No one knows unless you have it.

      • Dave O.

        Doug, weed makes the tinnitus much louder. I know it helps you sleep, and cope generally, but your tinnitus will quieten noticeably if you quit. Good luck, it ain’t easy.

        • James Gonzalez

          I agree with Dave O. Mine usually gets much louder when I smoke. Having it for 35 years, mine changes from day to day, depending on my sleep pattern. If I wake up and they are quiet, I have a good day. I have quiet days and intense days of misery. I pray for those quiet days and am grateful for them. One thing that brings me around to a better place is realizing that I am not deaf.

          • David Bazemore

            Mine is generally better after vaping weed, often receeding to a point where I am not bothered at all. Can last into the next day. Only partake at night when I’m not working. Maybe you need to vape. Different strains seem more effective, but hard to pin down since mine can vary from annoying to very annoying and haven’t pinned down why. At any rate, saying that weed will make it worse isn’t accurate, at least for me. Others?

      • Joanne Dart

        Love your analogy of being at a party with so much noise that you don’t talk to others. There are social situations that I avoid due to just that factor. I’ve had tinnitus now for seven years with my only escape from it is to sleep. Melatonin and Tylenol PM are my night time friends so that I sleep through the night because if I do wake up, without them, I am unable to fall back to sleep due to the noise in my head. I can pretty much ignore it while at work, but it is in the quiet of my home that the loudness can be quite deafening at times.

      • Dave O.

        Hi Doug, sorry to tell but weed makes the tinnitus worse, even if it helps sleep and coping, try canal, it may reduce the volume.

  • joycelyn pine

    This is such a lonely disease. It is wonderful to know there are many things happening–be it research, fund raising, or just general information.
    It seems so hard to believe that so little information is out there to share. I find myself telling everyone that will listen about tinnitus–only to hear people say “I have or know someone who also experiences that”.

    • Hazel Goedhart

      I hope this report gave you at least some hope, Joycelyn. There are people out there working hard on the solution!

      And yes, it can be lonely indeed. We did a survey last year on the social impact of tinnitus, and a lot of people report having become more withdrawn. (see https://www.tinnitushub.com/does-tinnitus-make-you-reclusive/ ).

  • Armando Mora

    Gracias, favor seguir con fuerza. Aunque anónimos somos muchos¡¡¡¡¡

    • Hazel Goedhart

      Yes we are! We’re just a small group of volunteers at Tinnitus Hub, but we do our best.

      (Sorry, I can’t write Spanish).

  • Dean Slater

    What can you tell me about Neuromod’s non-invasive bi-modal neuromodulation treatment for tinnitus.

    • Hazel Goedhart

      There’s not much news at the moment, we still don’t know when they’re launchding, but it does seem to be ‘soon.’ We have a dedicated thread on the topic on our Tinnitus Talk forum: https://www.tinnitustalk.com/threads/lenire-%E2%80%94-bimodal-neuromodulation-treatment-by-neuromod-devices.34566/ .

    • Halsy

      The medical research is available on their website. It’s promising and the right avenue to be pursuing. It won’t help everyone but I think it’ll help most.

    • David Bazemore

      I got an update from them June 5th: they are now accepting applications for assessment for treatment in Dublin. Cost for assessment is 250 Euros and treatment if accepted is 2500 Euros, but you do have to go to Dublin (I’m in California) for the assessment and then 4 appointments over the 3 month treatment. I imagine it will be available in the US and elsewhere at some point. More info and applications: http://www.neuromodmedical.com

  • Tom Nassetta

    Tinnitus has effectively ruined my life in the last few months. I’ve had tinnitus for 5 yrs plus and learned to deal with it quite well. 3 months ago the left side went berserk and the high pitch and loudness is almost more then I can take. While most people tested have about 3 decibels of noise I have 9 on the left and 6 on the right . I was tested by my audiologist and she gave me these numbers. Sleep is impossible. I sure hope for some sort of cure and am interested in becoming involved somehow. Central Coast California doesn’t have much going on but I’m looking.

    • Terrie Ransom

      Did something stressful, or a different diet cause this, you think?

    • Christine Wright

      So sorry to read this. I have had tinnitus for 20 or so years and I habituated for most of that time. 3 years ago after some extensive dental work it became extremely loud and has not stopped since. Needless to say I have tried everything to stop the noise and the only thing that has helped is Avanza (Mirtazapine) which is an antidepressant taken at night which helps me sleep and also seems to damp it down during the day.

    • Gregory L'Esperance

      I am so very sorry. I’ve had chronic tinnitus in my right ear for over 12 yrs. and can fully understand your upset and discomfort over this condition. My own volume levels range from around a ‘3’ (good days) to ’11+’ (on a scale of 1-10) on really bad days. I suspect that hyperinsulinemia may be involved; so need to control my carb/sugar levels, but also really try to watch my salt and caffeine intake. Stress (emotional and physical); also plays a really big role, so trying to chill out as much as possible is paramount. Quality sleep of the proper duration is also paramount. I also live in a very congested urban area w/ a lot of ambient noise from traffic/sirens, etc.; which is an aggravator, but hope to move somewhere that’s quieter soon. I recommend wearing quality earplugs if you are subjected to these types of conditions. I do sincerely hope you somehow find a viable solution someday; but you most definitely are not alone in your suffering….

      • David Baime

        For those of us with Moderate-Severe Chronic Tinnitus, where does one start? I’m going on 8 years, just woke up with it one day and the life I once knew was over. It’s a life ruin. Yes, it’s a lonely, quite disease/condition, except for the disgusting, tormenting loud noise in our head. As someone also mentioned, while its always there mine also varies in intensity: 7/10 days moderate to horrible, 3/10 days better to occasionally barely there. Not great ratios but that’s my “brand” I live with. As far as any cause/effect or correlation of the very bad to better days, for the most part – zero. It beats to its own drum; I’m like a rag doll in the wind. Some people says oh yeah, I get that sometimes too. They have no idea…. Like most of you I’ve tried everything from Eastern to Western stuff, and will continue the fight. Some biomed companies specialize in this; one I happen to watch is Otonomy in CA. They are into 2nd stage trials.

        Thank you everyone working on this and providing us with updates. Good luck to us all.

    • Patricie Anne

      Hi Tom,
      I’m so sorry to read about your tinnitus level. I have the same loud screeching metallic tinnitus on the left side of my brain for almost 3 years constantly. It has never lessened nor stopped. My right side has constant tinnitus, too, but not as severe as my left side. They both spike louder randomly. It has ruined my life each and every waking moment. I have not slept through the night since it happened several years ago from a car accident. I have never had any ear ringing previously to this accident, which caused a traumatic brain injury and spinal cord injury, among other things. I’ve seen numerous ENTs and a tinnitus specialist, all saying to learn to live with it. It has not happened. I have had cervical spine surgery and jaw surgery, have been on numerous nerve medications, diuretics, and other medicines, and nothing has changed my tinnitus for the better. It is disabling, torturous, and deeply disturbing. I’m almost waiting for my head to explode from this constant metallic loud screeching which sounds like constant wet brakes. I never thought my life would be turned upside down. No one understands it fully unless you have it at this live. You are not alone. A lot of us are suffering with you, unfortunately. Take one day at a time.

      • Riky Vos

        So sorry to hear about how you feel about your tinnitus. Please stop the fighting, that is what comes to my mind directly. Because it won’t go away. Fighting makes it worse. I know, because I am suffering from tinnitus and hyperacusis for over at least 20 years now. Followed a tinnitus management training in 2014, I had to retire from my job as a teacher in 2015. The main thing I have learned in the therapy is: let it be, show compassion with the tinnitus sounds and with yourself. It is alright to mourn about the life you lost. You can’t change the tinnitus but what you can do is to change the way you think about it. It takes time and effort and lots of support from your loved ones, but it is possible!

    • Carolyn Clayton

      Oh my I too live here on the Central Coast CA in Atascadero and I too have had severe tinnitus for 5 years now… Yes no help here at all. Hopefully something gives us some help soon!

  • Frank Baird

    Thank you for your time, energy, and efforts. I appreciate the update. Good information!

    • Klaudijus Kairys

      More money, more money, that’s all they discussed.
      So Cher has it, Will.I.Am, Chris Martin (Coldplay), Barbra Streisand and many more.
      They have money and are still suffering from it.

      Ask them to advocate or something.

      And hurry up guys, we’ve been contemplating suicidal thoughts for years!

    • Hazel Goedhart

      Thanks, Frank we appreciate it! We’re just volunteers over here, doing our best for the cause.

      Yes, we do need a celebrity spokeperson, but easier said than done!

      • steven shay

        William Shatner is listed as the spokesman for the American Tinnitus Association based in Portland. Other than a couple of old YouTube interviews I have not noticed him in the media on this. Other celebrities with tinnitus are Whoopie Goldberg, Pete Townsend from The Who (he talks about his tinnitus on YouTube as a guest on Letterman). I believe Eric Clapton is a sufferer. And Huey Lewis was just diagnosed.

  • Patricia Schmieg

    Thank you for telling us about the conference. I’m glad research efforts are growing.

    Please provide transcripts of your interviews.

    My hearing and speech recognition are declining and tinnitus is increasing. It’s hard for me to distinguish a true sound from what my brain puts forth. And I live between two highways! Sleep deprivation has decreased cognition.

    • Hazel Goedhart

      Hi Patricia, thanks for your kind words. The interviews are on video, and we will get them subtitled for people hard of hearing like yourself. Hope that helps.

  • CATH UNWIN

    Thank you very much for your fabulous report! Too right… we need some BIG STARS and liteners to really push the envelope.

    Cheers.

    CATH
    AUSTRALIA

    • Hazel Goedhart

      Thanks for your kind words, Cath! Yes, a celebrity spokesperson would be great. We’ve actually tried approaching celebrities with tinnitus, so far no luck. For some reason celebrities don’t seem to like to talk about their tinnitus?

  • Marilyn Hebert

    It would help if doctors didn’t prescribe drugs that cause tinnitus without advising you of this side effect. I had a doctor tell me that they pay no attention to side effects as it could be from anything else. In my case the Plaquenil was supposed to reduce the progression of Sjogren’s. Within 2 months of taking 200 mg daily, I had both tinnitus and vision problems. I looked the drug up, and both of these conditions were listed as side effects. If over 60 there was a risk of tinnitus, and I then was 61. Some time later I read that it didn’t do anything for Sjogren’s progression. The retinal specialist I saw for the problem with my eyes told me the drug wouldn’t be causing that and to continue the drug and come back in 6 months. Fortunately, I had stopped the drug immediately which saved my vision which returned to normal after two months of no longer taking it. We are all treated the same. Perhaps some who are younger can take this drug, but I had terrible results. I no longer let doctors send prescriptions directly to the pharmacy so that I can look up the side effects first and decide if I want to take the risk and if the drug is actually effective. As hundreds of drugs list tinnitus as a side effect, it would seem there is a problem right there with having them prescribed.without any warning of this side effect. I may be extremely sensitive to drugs as I am to other things. We will have to advise doctors of this as the chances of reversing tinnitus in my case were nil.

  • Christine Wright

    So true Marilyn, so many drugs cause tinnitus. My Doctor scrolls through side effects before prescribing anything new and even then they sometimes do cause my tinnitus to increase.

  • Carrie Kroll

    It’s true that there are many medications that can cause tinnitus. I used to have a list of them, and should see if I can get one again. I developed ringing tinnitus in 1996 after a serious virus that affected my nervous system and sense of balance. (I also was injured in a car accident and hit my head a few weeks later. ) So, not really sure whether it was the virus or hitting my head.

    In 2010, I developed pulsatile tinnitis, which is much harder to live with. I hear a low drum beat (my heartbeat) 24/7. I’m not sure of the cause. I’ve had some MRIs, a carotid artery check, and a dye test around my ears. No cause found yet, but it’s got to be a blood vessel problem. My doctor says that since I’m still around, it most likely isn’t a serious issue. So, I don’t worry too much about it.

    But, with both the high-pitched ringing and the low drumming heartbeat, it’ s like having a two piece band in my head all the time, and it’s not always easy to carry on conversations or to be in a noisy place. To make it worse, I also get heart palps for several hours a day which my doctor says aren’t serious, It’s just pounding, the heartbeat is usually very regular. But I can feel each one besides hearing it. I’m in my seventies, so it’s just one more aggravation, along with arthritis, and generally not being as energetic.

    I hope there is some good research on both kinds of tinnitus!

  • Susan Twardochleb

    Thank you so much for sharing this information! It is my experience that most people and doctors don’t know about tinnitus. The word needs to get out!

    I have suffered with tinnitus for nine years, and it only seems to get worse! My quality of life has suffered greatly.

    • Hazel Goedhart

      It’s true, very little awareness, even among doctors. That’s why we create these resources, do our Tinnitus Talk podcast etc. I hope things will get easier for you.

  • Michael

    I’ve had tinnitus for 53 years. It started in college when I was 23. It started in my right ear with a 6 kHz ringing and then 15 years ago in the left, same frequency. Needless to say it was devastating. After about 10 years, I did try Neuromonics, music embedded with special sounds. I don’t think it made my ear ring less. But participating in a program and talking to the audiologist helped me accept the fact that it was very likely mine for life, which is turning out to be true. Acceptance is the key. And as the years pass it bothers me less and less. I can go days without hearing it. I hear it loud and clear now because I am writing about it. Some activities can seem to make it worse. For me it is watching TV, and that’s the same for my wife. Her left ear started ringing about 10 years ago. Just remember, it does eventually get much easier to live with.

    Mike

  • David A. Alvarez

    Thanks for the report on the continuing efforts in research for cures for the different types of tinnitus. Just like cancer is not one disease, tinnitus is not just one sole condition.

    But, those of us with some kind of tinnitus continually hope for the advance in the research towards the cure for so many now and so many getting it.

    Thanks.

    • Hazel Goedhart

      Thanks, David. I hope we will all get our answers soon.

  • Dan Poppe

    I woke up with bi-lateral ringing tinnitus January 7, 2007. I am a 76 years old male. The past 12 years have been a misery every second I’m awake. You cannot explain it to those who don’t have it. The first ten years I was fairly attenuated to it but, the last 3 years have been more difficult. I have a noise machine at bedtime. The irony is that prior I used ear plugs to keep out night time noise. For about a month before the tinnitus onset my hard drive had a high pitched whine. The very day that I was going to buy a new hard drive I woke up with the tinnitus. Causation maybe? Have also been diagnosed with age related WBM (white brain matter disease). Lots of questions but, no answers. God Bless and Good Luck to fellow sufferers.

  • Michael

    I have aggressive tinnitus in both my ears. Yes people say we can habituate and that may be the case for some but for many the only way to to habituate or ignore tinnitus is to continuously stay busy, so when do we rest in a peaceful environment.

    I too have had suicidal thoughts and I was a man bigger than life. I now evaluate where I go and how loud is the environment.

    I sleep with masking noise and during the day I wear hearing aids and add noise to mask some of my tinnitus.

    For us tinnitus sufferers we can’t even say we suffer in silence because silence does not exist.

    Yes we need celebrities and other well known people to speak out so we can all be heard.

    More funding is needed and how do we know where to donate to with so many individual groups working alone on a cure or remedy.

    Are the drug companies not willing to invest with such a large number of the population that would buy a drug that provides relief.

    How can we be heard?
    Because we too deserve quality of life.

    • rajkumar g shet

      EXACTLY YOU ARE RIGHT.

  • Guy Upton

    I am still not seeing any references on your site to the sub-type called Pulsatile Tinnitus (PT) – which I have. I have the usual common tinnitus as well, which is not as obvious under the influence of the PT. Surely some of the specialists attending the conference addressed PT?

    • Hazel Goedhart

      Hi there, I didn’t hear anything about it at the conference unfortunately, though definitely there are researchers studying it. We have a dedicated section on our support forum for pulsatile tinnitus sufferers: https://www.tinnitustalk.com/forums/support.52/

    • Olive

      Thanks Hazel, that’s my question too.
      Are the researchers looking at pulsatile tinnitus at all?
      That’s my problem too for a little over 2 years now. Do they care about pulsatile tinnitus?

      • Halsy

        Pulsatile tinnitus is – generally – neurological/physical – and can be repaired once you find out where/how it’s occurring. There’s a pile of tests that should be run to help determine what it exactly caused your pulsatile tinnitus.

        Pulsatile TinnitusImaging and Differential Diagnosis:
        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3719451/pdf/Dtsch_Arztebl_Int-110-0451.pdf

        Print that out and bring it your doctor.

  • Hyrum Peterson

    I find some relief from playing my noise sounds. I crank up the Hz to about 7500 to overcome the buzzing. I find the Tibetan Choir the most soothing but sometimes max volume is not enough. The rain sounds work great to eliminate the buzz, but hard to sleep to it. I have been suffering for more than two years now and it is getting very stressful. I just learned that the type of headphones used is critical. Please use non-Rf emitting units as the wrong headphones can actually worsen the symptoms. It is a very lonely place and I hope for better solutions soon. I hope this information helps at least one person out there, if not more. Good luck everyone!!!!

    • Hazel Goedhart

      We’re all hoping for better solutions, Hyrum 🙂 Fingers crossed!

  • Laura Schweiger

    Thank you for your hard work, IT IS APPRECIATED.

    For anyone who has not tried CBD oil, I started a month ago. It has given me relief for the stress and anxiety brought on by tinnitus. Taking before bedtime has allowed me to fall into a deep sleep.

    • Hazel Goedhart

      Hey Laura, thanks so much for your feedback! And glad you found something that works for you. Sleep is so important to help us cope.

    • David Baime

      Interesting about the CBD oil. Just tried for a month and just about to put that into the no effect, move on to the next category. I am glad you have found some help with it!

  • A Svoty

    I started with tinnitus in my left ear over Three years ago. It was really frightening at first and really got me down. I am a musician and the tinnitus was caused by playing my music too loud! So if you do play music always in best in a good set of headphones!! I sleep with a gently ticking clock and that diverts the low hum that I hear. To those of you out there in time there is s very goof chance that you will habituate to the noise and I can honestly say I do not hear it anymore. Your brain learns how to switch of the sound, I was also very worried about flying, but this did not effect my tinnitus at all. Use a vic inhaler before take off and before landing! I do hope that one day they will find s cure for tinnitus. In the meantime keep enjoying all the things you used to enjoy even coffee!

  • douglas Liddle

    I find I can suppress tinnitus in the short term by subjecting my brain to a broad band of frequencies 2 kHz to 15 kHz using NCH software. Also white noise is useful.
    Just overload the brain with a broad range of frequencies and varying intensity.
    There has to be an exchange of potassium and sodium in neurons to generate the electrical signal causing tinnitus. This chemical exchange does also cause a sufferer to feel tired and a tendency to sleep due to the depletion of potassium and sodium.

  • masuma ahmed

    I have started to have ringing in both my ears a day after I had the colonoscopy procedure on April 22, 2019. When the ringing became intolerable, I went to see my GP. After the colonoscopy procedure, I also started to have severe muscle cramps on both my legs. The doctor did not believe that the colonoscopy prep (two-days fasting along with taking 1 1/2 bottles of Golytely mixed with water – 2 gallons each bottle) could have caused the ringing in my ears or the muscle cramps. I have an appointment with an ENT specialist next week. Meanwhile, this constant high-pitched ringing in my ear is severely affecting the quality of my life. Feeling desperate, I have started to google medical journals to find out about the side effects of the colonoscopy prep since the ringing in my ears and the muscle cramps have begun only after the colonoscopy procedure. The few articles I read indicated that the colonoscopy prep can potentially deplete minerals like phosphates, potassium and other minerals in our body. It is hypothesized that a lack of potassium can cause muscle cramps. A phase II study has shown improvements with tinnitus patients after those patients took magnesium (MgCl) for a length of time. I have changed my diet to include a lot of potassium-rich vegetables (banana, avocado, spinach, etc.) for almost a month and have started to take Vitamin D and B12. After reading the article on Phase II trial on magnesium, I have also started to take each day one 250mg magnesium capsule in the form of magnesium citrate as MgCl is not available OTC since May 28, 2019. My muscle cramps have become infrequent but I have not experienced any improvements with my tinnitus. I am still experiencing debilitating ringing and buzzing in my ears.

  • Dave O.

    I have found alprazolam helpful in reducing the volume and helping me sleep.

  • Ken Smith

    Thanks for the update Hazel, I am convinced that people who don’t have tinnitus have really no idea what we’re talking about. I suffer with hearing loss due to aircraft noise (RAF) and I recently went for a hearing test and hearing aids. The hearing aids I was given have a white noise programme so when the audiologist was setting them up she said, the computer is telling me the white noise is at its maximum, I can hear it from here, I had to explain that when I’m trying to concentrate on the white noise the tinnitus just gets louder and so it defeats the object. I find that wearing the hearing aids dampens the tinnitus, probably because I can hear what is going on around me without straining.

  • Lee Richard Hettig

    There wasn’t really a lot of information in this post about any new science in the field. Was there nothing presented?

    I’ve had tinnitus since Sep 2016. And I’ve tried to research myself. I’ve stumbled across a lot of information. Some say it’s related to serotonin. And other neurotransmitters. Do you have any resources on this idea?

    A lot of people develop tinnitus right after taking antibiotics (like me). So obviously there is a strong correlation, maybe even causation effect there. That should point researchers in a very specific area, no? Does the inner ear have its own special “micro-biome”? Maybe it gets disrupted? Or maybe it’s the gut itself being disrupted by the antibiotics. Serotonin is produced in the gut. Maybe there’s a link?

    This is the kind of information I was hoping to see in this article. Was there no discussion in the event about this kind of stuff?

    • Hazel Goedhart

      As I mentioned in my blog post multiple times, more detailed information will follow soon on specific topics!

      We’re just volunteers over here, so please be patient while we prepare more materials for publication. To be honest, I find it really disheartening when we spend so much of our time (unpaid) to bring this kind of information to the tinnitus community, and all we get is: “why aren’t you talking about X?”

      Yes, the role of neurotransmitters is being studied. Dr. Rauschecker mentioned it for instance, in the podcast interview we did with him, which you can listen to here: https://www.tinnitustalk.com/podcast/episode/searching-tinnitus-cure-josef-rauschecker/

  • Hannah I.

    Thank you so much for this recap, Hazel! And thank you for all the work you and Markku have been doing. We need better treatments and I’m glad to see more researchers are working towards them. While progress is slow, I have hope that in the next few years science will be able to at least reduce the suffering of many. Sometimes it feels like we’re forgotten by the medical world but these events are showing me that there’s a reason to have hope.

    • Hazel Goedhart

      Hannah, thank you so much! The recognition of our efforts really means a lot. We do our best with the very limited resources we have. Indeed, progress is slow but there is hope for sure!

  • Halsy

    Cheers for that, Hazel. I think the money will start to flow as the suits in Pharma realize that tinnitus is a common condition so finding a cure for it means a lot money to be made. This has just been oodles of money left on the table for decades now. And it would behoove governments to get involved seeing as this clearly negatively impacts productivity and ends up costing tax payers more in the end. There are plenty of upsides to curing tinnitus and no downside.

    And yes, there will be no magic bullet cure-all. There will be multiple paths to resolving tinnitus where it’ll be a process for most people, as opposed to just popping a pill or the like. Right now, everyone should be keeping their eyes on Neuromod and what Dr. Susan Shore and her gang are doing as these are the avenues most likely to have the best success for the widest range of people. Hang in their folks, it’s coming, it’s actually really coming and sooner than later.

    Meantime there’s still lots you can do you help resolve yours. Eat right and exercise – especially stuff like yoga, pilates, and tai chi. Go to massage once a month – massage therapy schools are a great way to get an hour massage on the cheap if you don’t have insurance. Go for walks regularly. There are many benefits to walking alone you can’t get through anything else. We evolved as walkers. It’s what we do, or are supposed to do. Walking even helps repair damage to the brain – you know, that thing causing you such grief. Give this a read…

    Walking and the Hippocampus
    https://www.everythingzoomer.com/health/longevity/2011/02/16/the-zoomer-report-walking-and-the-hippocampus/

    That’s impressive.

    Also, look into psychological and/or psychiatric counseling. Tinnitus retraining, Cognitive behavioral therapy, etc. These things can all help immensely – TRT has an effective rate of 85% on average and this is over the course of several decades now. About the only people it doesn’t help are the ones who quit and don’t give it a chance. Tinnitus exists because of confusion in the brain. When you start the process of putting that house in order that’s what ultimately helps resolve it. Never forget that your brain is actively creating synaptic pathways in order to maintain tinnitus. All your brain understands is that this is an important experience and so it’s sustaining it. When you retain your brain and get it to learn – and it does need to learn – that it can let go, that’s when it does let go and the synaptic pathways decay and bingo-bongo your nightmare is over.

    There are plenty of things you can do to help lower and ultimately end your tinnitus but it won’t happen if you’re sitting around hoping someone else is going to do it for you. If you’re not an advocate for your own health, don’t expect anyone else to be.

    We can be heroes, if just for one day…

    • Hannah I

      Unfortunately, this isn’t true for millions of people. Many people can’t reduce the volume or learn to tune it out and that isn’t their fault or due to a lack of trying. This is simply the reality of what tinnitus can be like.

      To say that TRT works for everyone that actually tries it also ignores the fact that tinnitus can be debilitating in itself. TRT will not work for everyone, not because people quit the program but because not everyone can achieve the things you’ve mentioned.

      I would hope that other people with tinnitus showed more compassion and understanding towards severe sufferers. My tinnitus has been loud and intrusive for years, no quiet days or moments. What I need are medical treatments as psychological approaches haven’t helped at all.

      Saying that everyone can do things to reduce or even end their tinnitus isn’t true. We know millions of people worldwide have severe, debilitating tinnitus – not because they’re not trying hard enough to get better but because that’s how brutal this condition can be.

      To say that everyone can let go of their tinnitus really ignores how horrible this condition can be. We need to advocate more for medical treatments and speak up against those misconceptions. The tinnitus community is holding research progress back by continuing to make tinnitus look like a mental health issue.

  • Comments for this post are closed.

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