Why Are Hyperacusis Sufferers Such a Small Minority?

Discussion in 'Support' started by Orions Pain, Mar 11, 2020.

    1. Orions Pain
      Dreaming

      Orions Pain Member Benefactor

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Loud music
      I am just so confused. It seems like so many people do loud things on the daily and come out completely fine. Some just get tinnitus. Some get tinnitus and hyperacusis and I’m just having trouble understanding how this is even possible.

      Why do some get tinnitus without hyperacusis? Is there less damage for just tinnitus? Is it a different sort of damage?

      Not knowing the mechanisms of all of this is so frustrating. What do you guys think? Anyone have any sort of information on hyperacusis vs tinnitus?

      For example, I’ve never in my life had tinnitus, and then one event and I just get tinnitus + hyperacusis combined while most of my friends who frequently go to concerts just have mild tinnitus (can only hear it at night).

      Also how many of you guys had misophonia prior your hyperacusis?
       
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    2. serendipity1996

      serendipity1996 Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Unknown but suspect noise-induced
      I wonder this too. It's odd that hearing loss and even tinnitus is so prevalent yet hyperacusis esp pain hyperacusis is extremely rare. Noise exposure from headphones was what did me in ultimately but even so it's odd given that I wouldn't say I even had a history of prolonged noise abuse - e.g. never been to a concert. Whereas I have a friend who got tinnitus when he was 8 from a cap gun being fired next to his ear and he is a total audiophile - headphones 24/7, DJs, clubbing, festivals. No issues at all. I did manage to cajole him into using earplugs though for clubs.

      I'm guessing it comes down to a combo of things - maybe we're just somehow genetically predisposed (ugh). My parents don't have tinnitus although I have a twin sister who also has mild tinnitus but no hyperacusis so she doesn't find it problematic.
      In my case, I also have poor circulation - this has led me to speculate whether this could mean that my ears end up more vulnerable to damage or something. Idk... I can't wait until science uncovers this.

      And no misophonia prior to tinnitus!
       
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    3. AUTHOR
      AUTHOR
      Orions Pain
      Dreaming

      Orions Pain Member Benefactor

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Loud music
      It's extremely frustrating. I do have a history of concerts but nothing more than my friends have gone to. People go to concerts, loud sports events, clubs, etc WAY more than I do and come out fine. I really do think there's something about our brains that's different than the rest of the population. How is it that there's this entire GIANT music industry and more aren't suffering. If it was this easy to damage our ears - wouldn't more artists be more damaged. Plus all those people who work in night clubs, in huge sports arenas where the db's exceed 100.

      I have many friends that are older than me that are into music and also have no issues whatsoever or just have mild tinnitus that they only hear at night that's easily maskable...
       
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    4. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Rare genetic error... severe tinnitus & hyperacusis are brain genetic defects activated by loud noise.
       
    5. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced

      HI @Orions Pain

      I and many people in this forum know what you are going through and how frustrating tinnitus can be especially in the early stages. The type of tinnitus that you have which is noise induced with hyperacusis, will improve with time. Please read my articles in the links I have given you and they will help alleviate your fears and concerns and give you some peace of mind. This was the reason I gave them to you so you wont write the kind of posts that you have above, because it will add additional stress on top of what you're already going through.

      The information you have given me that you frequently attended concerts, clubs and used headphones probably at too high volume (without realizing it) and for long durations, is an indication, that your tinnitus had been coming on for some time and wasn't caused by just one event. For many people including myself didn't realize the tinnitus was there, low in the background until it reached full manifestation and made itself known to the point one was unable to ignore it. This is often (but not always) the way noise induced tinnitus behaves.

      My advice is not to try and find reasons/answers why some people that frequently attend loud concerts, clubs and use headphones for long durations haven't developed tinnitus. You may be surprised to learn a lot of them already have tinnitus but again, it is at a low level in the background and easily masked by everyday sounds in the environment. Of course we are all different and some people are more susceptible to certain things and tinnitus is no different. However, be under no illusion, if a person exposes their auditory system enough to loud noise they will eventually develop full blown tinnitus.

      Some famous musicians openly boast that they have tinnitus and are able to continue playing their loud music without any problems or worries at all because they don't allow the tinnitus to prevent them from doing what they want. It's all about mind over matter. Please take it from me people that talk that way are talking absolute rubbish. Their tinnitus is indeed present and without doubt they are able to carry on regardless and immerse themselves in playing their loud music, for the simple reason the tinnitus hasn't reached a level where it has become seriously debilitating. As I said we are all different but I assure you, if anyone continues to subject their auditory system to loud noise their tinnitus will continue to get worse and will reach a point were it becomes so severe and debilitating they will have to stop, and I mean this is the case for everyone.

      Try not to stress yourself out the tinnitus and hyperacusis will improve but it will take time. As I mentioned in my previous post to you, have a word with your family doctor explain how you feel as there is medication that can help, and it won't necessarily make your tinnitus worse. If things get a little too much see an Audiologist that specialises in tinnitus and hyperacusis treatment and management.

      All the best
      Michael
       
    6. AUTHOR
      AUTHOR
      Orions Pain
      Dreaming

      Orions Pain Member Benefactor

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Loud music
      Hi Michael, yes, without a doubt my issues have been brought on from exposure to loud noises and over-exposure as well. I slept with ear plugs for many years, so for this reason I don't believe I had any tinnitus prior to the initial onset, as I would have definitely heard it. It's overwhelming and loud whenever I put in ear plugs these days.

      My one worry with the hyperacusis is that I'm not doing enough to protect myself. I avoid noisy places, even moderately noisy, and still seem to be having issues that are progressing. With doctors knowing so little, it is very difficult to know who to trust. Some say move home and don't go outdoors for a year, while others say slowly try to introduce noise into your life and don't overprotect.

      At this point - who do you trust? Doctors who don't know much nor have a ton of information about the condition in general, or people from forums? It seems to be that either people recover completely or just get more and more damaged. There aren't many audiologists with my insurance that specialize in hyperacusis unfortunately. I have yet to find medication for depression or anxiety that isn't ototoxic, so I really can't bring myself to take something that has a high chance of making me worse.

      I know at this point all I can do is give it time, and try my best to avoid further acoustic trauma, but it's becoming increasingly hard to handle normal day to day life while waiting it out.
       
    7. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      HI @Orions Pain

      Thank you for giving me more detailed information about your situation because it helps a lot. I agree with you that if the tinnitus was present in the background you would have heard it since you slept with earplugs. The thing to do now is move forwards and deal with what you are now faced with.

      Tinnitus and hyperacusis caused by noise trauma often improves with time. Many people progress and habituate even when these conditions were quite severe and problematic from the outset. I have seen many examples of this over the six years visiting this forum. Members come and go and returned to tell their success stories.

      I want to make a few suggestions that will hopefully make your life a little easier and start the healing process. You may not be able to get the specialist help I speak of but even with that, there are certain things that a person needs to do in order to obtain the best chance of success and get their life back on track. I believe one of the most important things is to try and not allow negativity to consume or overwhelm you and want to explain what I mean.

      There is nothing wrong in feeling occasionally down about the way tinnitus and hyperacusis makes you feel or expressing that to someone or writing a post about it. The mere nature of these conditions makes it nigh on impossible for someone to always be feeling positive. Life after all is problematic and this applies to everyone. Therefore, one has to try and keep things in balance by not allowing negativity to take hold. Unfortunately this can happen all to easily in a forum or on other social media platforms. If you read posts from negative thinking people who believe tinnitus treatments do not work and once a person has tinnitus their future is one of doom and gloom, their beliefs can quickly become yours and that's no good for your recovery.

      I am a believer in medication for tinnitus because this condition is intrinsically linked to a person's mental and emotional well-being. Stress makes tinnitus worse and tinnitus makes stress worse. Therefore, it is important that one's mind and emotions are kept in check. Some antidepressants can make tinnitus increase but usually it's temporary and the same applies to other prescription drugs. My blood pressure medicine is listed as can cause ringing in the ears. I have been taken it for many years and never noticed an increase in my tinnitus. I would rather take it than risk: kidney damage, stroke, heart attack or my early demise from this mortal coil, which one risks if they their blood pressure isn't kept under control.

      My advice is not to pay any attention to the word ototoxic and reading posts about medications that affect tinnitus, from people at tinnitus forums who are not medically qualified but whom I refer to as fireside quacks. I am not medically qualified and for this reason rarely get involved or advise on medical matters. When I do I say a person should take advice from their doctor. I have experience with tinnitus and hyperacusis and how they can affect a person's mental and emotional well-being and thus, have corresponded and counselled people with these conditions as it requires experience to do so. In my opinion one cannot acquire this knowledge purely from reading a book.

      It is for this reason most ENT doctors do not have in-depth knowledge about tinnitus and the way it affects a person. They are physicians that treat underlying medical problems with the Ear, Nose, Throat. When there is no underlying medical problem causing the tinnitus as in Noise induced which can also cause hyperacusis, a patient is referred to Audiology, to see either a Hearing Therapist or Audiologist that specialises in tinnitus and hyperacusis treatment and management. A lot of these health professionals (not all) were either born with tinnitus or acquired it at some time in their life. This is what happens in the UK, which I am commenting on and do not know the procedure for treating tinnitus and hyperacusis, in other countries after a person has been assessed at ENT.

      Based on to my experience with tinnitus and hyperacusis, my advice is to slowly introduce yourself to normal everyday sounds and I explain how to do this in my post: Hyperacusis, As I see it. Available in the links that I have given you. Therefore, I agree with the doctors that have told you the same and not those that have said stay at home. Equally, I advise not to overuse earplugs as you risk lowering the loudness threshold of your auditory system which can make it more sensitive to sound. My post Hyperacusis, As I see it, explains in more detail.

      Read some of the posts on the positivity thread in this forum and read posts by @fishbone @Bill Bauer @billie48 three people among others in this forum, that I believe give good constructive advice. It takes time to acquire positivity and incorporating that in your life but with a little effect a lot can be achieved. Tinnitus is not all doom and gloom. Although it can be stressful and daunting at times and for some, it can be quite severe and may need specialist help to cope. However, many people have it habituate and often hyperacusis is cured or significantly reduced. They are still able to carry on living their lives doing everything that they want to.

      I wish you well.
      Michael
       
    8. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      I think there are just different ways in which our hearing can be damaged, and the most common way is hearing loss and maybe some slight tinnitus. The second most prevalent condition is tinnitus. And the less frequent is hyperacusis, in different degrees of severity.

      Maybe hyperacusis is generated by structures that are slightly damaged in the ear but still functioning, although not correctly, like bent hair cells, cochlear dysfunctions etc.
       
    9. AUTHOR
      AUTHOR
      Orions Pain
      Dreaming

      Orions Pain Member Benefactor

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Loud music
      So long story short, we're basically just REALLY REALLY freakin unlucky. Bad hyperacusis is just as bad as being deaf in my opinion, if not worse.
       
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    10. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      I think it is worse being deaf than having hyperacusis. Probably hyperacusis is more painful than being deaf in physical terms, pain, headaches, tension, cramps etc

      And actually there is something shocking about that, since many ENTs have said to me that it is hard to derive pain from hearing, since apparently hearing structures are not connected in a way to send "pain signals". An ENT with 40 years of experience told me this...

      But being deaf, that's just terrible, it's pretty much being handicapped to work in many professions, and isolated from the world, you cannot even find ways to accommodate to deafness. Hearing aids are often useless and people will not help, since the deaf person's problem, because other's problem and no one cares...

      So I'd choose hyperacusis. You can at least still try to enjoy music, although it sounds different...
       
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    11. AUTHOR
      AUTHOR
      Orions Pain
      Dreaming

      Orions Pain Member Benefactor

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Loud music
      Severe hyperacusis limits you to working just as much as being deaf does. I’m not talking about mild hyperacusis as you can throw on some earplugs and deal with work.

      If you’re having to wear peltors everywhere you might as well be deaf. At least you won’t have any pain.

      Both are terrible/limiting conditions. The difference being hyperacusis isn’t as widely recognized.
       
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    12. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Source?
       
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    13. Tybs

      Tybs Member

      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      Fall from stairs
      Depends on your environment. One of my neices is deaf from birth and has a disabled father and a mentally handicapped brother. Yet she ended up being highly educated, having a loving (and deaf as well) husband with two wonderful kids (one deaf, one hearing) that can attend school without any problems. They can drive the car in traffic and are fully independent in whatever way. She all owes it to her parents: her mother in practical ways, to the point of attending classes with her so she could translate, and her father in the mental areas, like a wise man she could always go to whenever there was an issue.

      I grew up in a wonderful family myself, but this one always set an example for me of what self-sacrifice means once there are children involved. My aunt did pretty much anything in the household, including taking care of her MS-struck husband who soon could not work or help around anymore. Haven't heard her complain even once, she took everything life threw at her and destroyed any barriers they encountered.

      But to attend to your point... if given the choice, I'd prefer the situation of my neice above having severe tinnitus, assuming a cure isn't around the corner. Silence is golden.
       
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    14. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
    15. AUTHOR
      AUTHOR
      Orions Pain
      Dreaming

      Orions Pain Member Benefactor

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Loud music
      The fact that it is also a brain issue not just an ear issue makes me that much less optimistic for a treatment to work :(

      Still hoping for a miracle though.
       
    16. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Your link is referring to a specific subtype that is genetic, and this does not exclude acquired noise induced or ototoxic tinnitus. Just that some people have more of a genetic tendency, which we know.

      Edited for clarity.

      And Dr. Sedley has the view that these brains are normal and not damaged but tend to react to damage differently because the brains are more "predictive."
       
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    17. New Guy
      Doh

      New Guy Member Benefactor

      Tinnitus Since:
      3/18
      Cause of Tinnitus:
      Noise Induced Hearing Loss
      @Orions Pain

      When I first got tinnitus the hyperacusis was freaking ridiculous. I thought I was screwed for the rest of my life. I couldn't bear the traffic noise in front of my house, the sound of my truck was too loud to listen too, I feared clanking plates and the beeper at the grocery store. I'm still weary of beepers at the grocery store, some clerks turn them up to ridiculous levels.

      The hyperacusis stuck around for a good 1 1/2 years before it started to subside a noticeable amount. For me, about 1 1/2 to 2 years was the turning point for the hyperacusis.

      I would try to move on with my life and do something loud, even with hearing protection, and suffer a setback with hyperacusis. Give it time.

      I find @Michael Leigh's comment interesting, he says the tinnitus was there before, lingering, and the major noise event is what drew it out (or something to that effect). I noticed a ringing in quiet rooms before t came on for me but I could easily not focus on it until I exposed myself to too much noise at once.

      Please give it time and do your best to make it through the day. Take it one day at a time and little by little you'll start to feel better. You're going to slip back once in a while, we all do, but in general, you'll improve whether tinnitus goes away or not.

      Protect yourself from loud noises now while still exposing yourself to comfortable levels of noise and your ears will slowly recover from the hyperacusis. You're going to get through this, please be patient.

      If you go to my first thread there's a day when I posted about trying to work in my yard with hearing protection on and I couldn't because the traffic noise was too loud. I thought my life was over. You can feel the fear in my post. I can work in the yard any day of the week now unless there are a lot of motorcycles or tractor-trailers.

      Hang in there, you're going to make it.
       
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    18. AUTHOR
      AUTHOR
      Orions Pain
      Dreaming

      Orions Pain Member Benefactor

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Loud music
      I have tried on various occasions to get back to normal, have dinner with friends (at home), partake in office conversations, go to a restaurant with my mom, etc. Each time I experienced setbacks. First TTTS appeared. Then I started getting the weird menthol/burning. Then at some point two weeks ago the mall sounded so overwhelmingly loud for me when I was at the food court, I forgot my drink at the counter because I left so fast. There was a family moving tables and chairs around while I was paying - this was a major turning point for me because I have yet to feel uncomfortable in a mall.

      One of my favorite things to do has been to go to the beach, and lately all it does is aggravate my hissing tone even more :(

      I am doing my best to stay strong and patient, but to be honest I am quite terrified of how much more this is going to progress. I'm starting to notice minor aches in my ear, as well as in my jaw randomly (I've spent all day watching TV fairly quietly and it still happens?) Michael's post said it won't get worse, but the thing is, it only gets worse as the weeks go on. It's extremely difficult to gauge which "set-back" is an actual setback and a permanent step in the wrong direction, or just part of the healing process.

      Not arguing with anyone that it can get better. I do believe that chance exists. It’s just that right now it really doesn’t feel like I will be one of those people.
       
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    19. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      @New Guy

      So how long will this recovery take? I'm nearing 3 years and overall it has only gotten a little worse, even though I did as you wrote here.
       
    20. AUTHOR
      AUTHOR
      Orions Pain
      Dreaming

      Orions Pain Member Benefactor

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Loud music
      I'm curious, are there any other people with hyperacusis who have a sizzling/sand-waterfall hissing tone as their main tone? I have other ones, but those I tend to only hear in silence or with my ears plugged. The sand water fall isn't masked by anything.

      I also have a super high pitched tone that I can only hear when I clench my jaw.
       
    21. Lucifer

      Lucifer Member Podcast Patron Benefactor

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Ear Infection
      @Orions Pain

      I’m wondering as well how some people only get tinnitus whereas I have both tinnitus and hyperacusis. I really hope FX-322 does help with hyperacusis especially pain.
       
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    22. AUTHOR
      AUTHOR
      Orions Pain
      Dreaming

      Orions Pain Member Benefactor

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Loud music
      My concern would be not being able to receive this treatment (if it even works for hyperacusis).
       
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    23. Lucifer

      Lucifer Member Podcast Patron Benefactor

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Ear Infection
      My concern is that if it comes out in the US first there will be a delay coming out in other countries. That’s my biggest fear but if it works for hyperacusis especially pain hyperacusis I would be so happy.
       
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    24. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Predictive brain - an undesirable genetic trait. A normal brain should not aquire tinnitus/hyperacusis.
       
    25. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      You totally misinterpreted the study.
      It was once thought tinnitus was purely caused by environmental factors (noise, meds), but now it's clear that genetics play a major role in who acquires tinnitus.
       
    26. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      @New Guy

      The onset of Noise induced tinnitus usually comes on "suddenly" or "gradually". Sudden onset could result from being exposed to the discharge of a firearm, Loud siren, exposure to loud music when out clubbing or at a concert. In short, it's when the auditory system has been exposed to sudden loud noise that causes tinnitus which previously wasn't there. This may result in a tinnitus spike that settles down and completely goes away or becomes more permanent.

      Many people (not all) that develop noise induced tinnitus from using headphones, have a history of listening to music through them at high levels that over time gradually causes tinnitus to develop and without them noticing it. The reason being, the tinnitus is at a low level and is easily masked by daily sounds in the environment - although one day it will suddenly make itself known, the person may not be aware that it was actually coming on for some time. In some circumstances, before the full manifestation of the tinnitus, some people may get a warning and experience a sudden tinnitus spike, that might last a day or two and then settles down and the person thinks it's completely gone away. However, if they persist on listening to loud music through headphones, the tinnitus will usually return and become louder and more permanent.

      It is a similar pattern with people that develop noise induced tinnitus caused by clubbing or going to loud concerts. Often they have a history of exposing their auditory system to loud noise. Some experience ringing in the ears and it settles down in a couple of days and goes away. They think all is now well and carry on regardless not heeding these warning signs which they are unaware of. This may continue to happen until one day the tinnitus becomes more permanent.

      Hyperacusis often accompanies noise induced tinnitus but not in all instances. This type of tinnitus with or without hyperacusis often improves with time and recovery can take up to two years. Depending on the severity of the tinnitus and hyperacusis, if it is present specialist treatment may be required with a Hearing Therapist or Audiologist that specialises in tinnitus and hyperacusis management, where a variety of treatments can be helpful. This can include: TRT, CBT, Counselling, Sound Therapy, Mindfullness, Relaxation therapy, white noise generators, Medication.

      If specialist treatment is sought, a person has to realise they have to be prepared to try and help themselves, as the treatment cannot do everything. This means learning to adopt a positive mental attitude and incorporating positivity into one's life. Talk therapy/counselling can help with this and takes time. Unless a person is prepared engage in positive thinking by doing the things they like to do, and not focus on negativity - or have an attitude where nothing less then a cure for their tinnitus will be accepted, it can make habituation difficult. When hyperacusis is present sometimes treatment using white noise generators are required to desensitize the oversensitivity of the auditory system, counselling may also be required. It can take up to two years for this treatment to work. Again, it takes time and a person has to be patient and stay with the treatment in order for it to work.

      Michael
       
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    27. AUTHOR
      AUTHOR
      Orions Pain
      Dreaming

      Orions Pain Member Benefactor

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Loud music
      Why so? Delay in other countries I mean. You would think they’d want to make as much money off of it as possible if it is proven to be effective.
       
    28. Lucifer

      Lucifer Member Podcast Patron Benefactor

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Ear Infection
      Each country will have a different process of drug approval. It may take longer to release FX-322 in other countries. But I would think if the drug was effective for treating hearing loss I think the drug approval process will be quicker.
       
    29. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      They aren't. Most normies suffering don't even join tinnitus forums. They just follow TRT protocol and suffer.
       
    30. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      With severe hyperacusis I could hear perfectly with Peltors and earplugs. It is painful to work but it can be done. I have been working almost consistently, with short periods of medical leave when the pain was just too much to bear.
       

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