Why Isn’t TRT the Holy Grail?

Discussion in 'Support' started by stophiss, Dec 13, 2016.

    1. Foncky
      Lurking

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      March 2004
      Cause of Tinnitus:
      Music. Balloon. Genetic.
      Maybe that's my problem. bill might well be the only sufferer here who describes certain things I experiment too.
       
    2. Canador

      Canador Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      Unknown

      Scientists appear to have *plenty* of money for exotic studies on mice and tissue in dishes. Maybe they just don't want 10,000 people parading through their offices--and all the work it entails.

      Or maybe they still don't have anything viable to offer people. With mouse studies, you can keep money coming in forever. But humans can too quickly tell you whether something works.
       
    3. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      I can relate to what you are saying. H shows, over time, new sets of symptoms. It is shocking how fast it can worsen.

      Probably there is a decent chance to improve from H if the symptoms are tackled early and in a proper way, and also having luck in terms of accidental noise exposure. However, this is rarely the case, and it was even less the case for people who got H years back when very few people knew anything about this condition (= it was very unlikely to find a doctor that even knew what it was, or did not mistake it for another problem).
       
    4. Canador

      Canador Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      Unknown
      It is.

      Yet there's no telling how much of the worsening is from actual damage, as opposed to how much might be from reversible inflammation, swelling, irritation, and resulting hyperactivity--in combination with increased gain.
       
    5. Ed209

      Ed209 Member Benefactor

      Tinnitus Since:
      07/2015
      Compared to other conditions there is very little money put into tinnitus research. If a real effort was made we might actually make some breakthroughs.

      I think it's more likely that a discovery will come accidentally, as is the case with most other discoveries. Maybe the breakthrough will come whilst researching the endocrine system. Who knows?

      We just need more money to go directly into researching tinnitus. It will increase the odds of something positive happening quite significantly.
       
    6. Canador

      Canador Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      Unknown
      Why do you think that is?
       
    7. Ed209

      Ed209 Member Benefactor

      Tinnitus Since:
      07/2015
      I think one of the problems is that the tinnitus community is not as galvanised as some others. Part of this problem is habituation. Once people get past the initial shock they generally carry on with their lives and do little more to help the cause.

      Other health concerns seem to get more families and friends involved. They go on to form foundations which regularly raise money. From my experience it seems tinnitus gets little sympathy; maybe because it's hidden suffering and our pain is not really understood. Saying that though, depression and mental health is getting quite a lot of attention lately.

      How many tinnitus charity runs do you see? Tinnitus raffles? Tinnitus charity events in general?

      We are the ones who need to rise up and get people interested in raising money for this affliction. Make the general public understand how horrific this condition can be.

      There is practically no awareness. People know more about Kim Kardashian's ass than tinnitus.
       
      • Agree Agree x 1
    8. GregCA
      Jaded

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Absolutely. The research funding is very low. Looking at the ATA funding numbers in the last 30+ years, we can see it's just enough for 1 resource. One person. That's it. Not two. One.
      Clearly progress can't be very quick with so few resources. There seems to be a big disconnect between the number and impact on the quality of life of the sufferers, and the funding response to it. You would think the world balances the two so we put emphasis on things that affect people's quality of life, but it's not always the case.
      For example, there's more research going into alopecia than tinnitus. Growing hair on top of the head so you look good seems more important than growing hair in your cochlea so you hear good, and hopefully lose the excruciating sound torturing you all day long for the rest of your life.
      Such are our priorities.
       
      • Agree Agree x 3
    9. Foncky
      Lurking

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      March 2004
      Cause of Tinnitus:
      Music. Balloon. Genetic.
       
      • Like Like x 1
    10. Rubenslash

      Rubenslash Member

      Location:
      Brussels
      Tinnitus Since:
      04/2016
      Cause of Tinnitus:
      Ototoxicity & Lyme Disease
      And what about pharma companies? I can't believe they don't realize what a gold mine a T cure would be. Even people who are fully habituated to their mild T would still pay to get rid of it.
       
    11. Ed209

      Ed209 Member Benefactor

      Tinnitus Since:
      07/2015
      True, but you could say this about most conditions. There is money going into tinnitus; I just wish there was more :D

      If we raised more ourselves it could tip the balance.
       
      • Agree Agree x 1
    12. Canador

      Canador Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      Unknown
      Or as a result of advances that will renovate the body in general. It will take such a giant leap.

      Today's Big Pharma is not very good at "cures." Think back (way back). When was the last time they cured anything? They still haven't found a cure for the common cold.
       
    13. Ed209

      Ed209 Member Benefactor

      Tinnitus Since:
      07/2015
      I don't think they will ever cure tinnitus, or at least if they do it will be many lifetimes away. I was thinking more along the lines of an effective treatment. Maybe a drug to lower the noise when taken, or an invasive brain procedure of some kind. Hair cell restoration? Would that help tinnitus, or would the changes to the brain be the stumbling block?

      If they manage to cure it outright I'd be totally amazed.
       
    14. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      This thread is about TRT for hyperacusis. It's not about tinnitus at all. The last posts are a bit off topic.
       
    15. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      I can bet the neurotologist has never had tinnitus or hyperacusis and therefore never needed TRT. I have had the treatment twice and found it helpful. White noise generators which is part of TRT treats the tinnitus and hyperacusis, by desensitising the auditory system and curing the hyperacusis as in my case.
       
    16. Ed209

      Ed209 Member Benefactor

      Tinnitus Since:
      07/2015
      Force of habit. The intention is exactly the same for hyperacusis however, so everything still applies.

      Hyperacusis often turns up on the tinnitus board so I forget where I am half the time. The original question does refer to both T and H.
       
    17. GregCA
      Jaded

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Maybe the topic should be amended to clarify that, because right now it's not specific to H (I know I got fooled).
       
      • Agree Agree x 1
    18. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      @Ed209
      @GregCA
      This thread is in the "hyperacusis and ear pain" section. There is a huge difference between TRT for H and TRT for T. Since this is in the H section I think that's what @stophiss intended to discuss. Could be wrong, but that's what this thread has been about until now.
       
    19. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      Maybe it is better to sell tons of supplements or stuff that they periodically market for T. There is a thing called Tinnex but I have never tried it. There were also all this gingko biloba based supplements that apparently could have a positive impact on H and T, and I tried several of them and.. no, they make no difference, and these are expensive supplements.

      A cure would be very profitable if it was expensive, but maybe pharma companies prefer to sell supplements, a new one at a time.

      Also, research is more focused on cancer and diseases that can kill people. T and H only have an impact on the economy in terms of pensions or disability, and in many countries they are not recognised as causes of disability or, if they are, the pensions paid are very low, so people prefer to carry on working (even if it is painful or quality of life is very low).

      Books and research tend to focus more on T than H, basically because it is a lot more common. And an usual assertion is that a certain % of people who have T may also develop H. It is assumed that T comes before or at the same time than H or that H may be in some way related to T. However, I know people who had H a long time (years) before developing T.
       
    20. 3ri0w

      3ri0w Member

      How are they different?
       
    21. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      Well, that's common to other hearing problems, like noise-induced hearing loss. At drug trials they cannot really isolate the effect of the drug and the effect of just the passing of time to see if people recover hearing or not after exposure to very loud noise.

      For H probably sounds under 80 dbs would not make damage quickly, but the problem is that hyperacusic ears cannot endure sounds that are loud (but bearable) for normal ears, even if these sounds are very brief in time (seconds). This is maybe the main difference from people with normal hearing. Every day most people are exposed to peak sounds above 90 dbs, and this implies being exposed to many times more sound than 80 dbs. Well, hyperacusic ears cannot deal with that without damage that, over time, is likely to be irreversible.

      People who hear normally and have healthy ears (specially people with very good hearing) can also take very loud sounds. When hearing starts getting damaged, some people just lose hearing (and some of this may experience recruitment), others develop T, others get H, or a combination of all those before. That's why some people are talking now about "hidden hearing loss". Also, if haircells are twisted or partially damaged they may send amplified or distorted interpretations of sound. Hyperacusis is related to the brain, the lymbic system, the nervous system, and the inner ear and haircells. It may be related to mechanical problems too, neck, jaw issues, whiplash etc

      It is believed that hyperacusis induced by accoustic trauma is the hardest one to cure, and this is why there is people who do not recover or make only very partial recoveries after very long periods of time. This kind of noise induced hyperacusis may be very different from an overreaction of hearing due to stress or other problems that are easier to treat and that may explain some "success stories". And this distinction is what makes some people talk about "true H", the one that doctors describe as very rare.
       
    22. GregCA
      Jaded

      GregCA Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      You're right - I didn't see which subforum this was in. I just looked at the thread title and it wasn't specific. However, being in that subforum should be enough to indicate its specificity (even though I think it would help if it were a tad more obvious).
       
    23. Ed209

      Ed209 Member Benefactor

      Tinnitus Since:
      07/2015
      Same for me. I read the initial post and it specifically spoke of both T and H. The two conditions are often spoken about together right across this forum so it never really crossed my mind.
       
    24. stophiss

      stophiss Member

      Location:
      Florida
      Tinnitus Since:
      April 2016
      Cause of Tinnitus:
      too full a life
      Sorry for the ambiguity. I could have been a bit more clear and maybe best to channel discussion about TRT as it relates to hyperacusis. Perhaps there are those here that believe TRT is ineffective for either T or H because sound therapy does little good in the face of nerve damage. My guess is, in the context of T, consensus is TRT doesn't lower T, only the ability to habituate to T. And perhaps the greatest controversy applies to TRT and H...if TRT can truly help lower sound sensitivity.
      Thanks for all the good discussion.
       
    25. bill 112
      Fine

      bill 112 Member

      Location:
      Republic Of Ireland
      Tinnitus Since:
      02/2012
      Cause of Tinnitus:
      Noise exposure
      No I definitely know my ears were damaged further,it's without question to me and it feels like a ball has been set in motion and can't be stopped,that my ears are just deteriorating from little noises.

      It started in November 2015,a kiss near my ear stabbed it and along came this horrible stinging burning head and ear pain,this was the first time I ever really experienced pain from sound.

      A visit to my audiologist later and my hearing was perfect,that the pain was just the ear muscle contracting from the sudden sound and that it would go away.He removed some wax from the affected ear which was painful in itself and sent me on my way.

      I went home and rested up for a few days and the pain eventually subsided but was still there.I began getting on with my life again knowing that it would calm down after some more time.A month later and the pain returned and quite bad at that,I still couldn't work out why this was as I wasn't really anymore sensitive to sound,noise didn't bother me?

      So I went to my GP and audiologist yet again,this time they were saying it was tension from the incident and being around sound that's causing me to hunch my shoulders and tense up,I was given some relaxers and told to rest in a bath everynight to ease the tension.

      So that's exactly what I did and it did ease off again and I returned to my life,me and my girlfriend went for a trip to London and I wore earplugs at appropriate times etc but upon returning back to my hotel room the pain in my head and neck was horrendous,my whole head and neck was stinging and burning and it radiated down my back.This was when I became extremely concerned by this and told my girlfriend that I needed to investigate this further when we got home.

      Upon returning home I rested for a few days and the pain eased off yet again,I didn't notice any changes in my hearing and my T was still at its same level.
      The pain then became sporadic in nature,sometimes I would hear a noise and there would be no pain and other times it would just appear after nothing.

      A month later I was feeling ok again,my head and neck were still somewhat painful but I of course was convinced it was tension,my ears didn't hurt and numerous online and doctor checks all pointed at tension being the cause,the symptoms all matched.
      Me and my girlfriend went to a comedy show and I wore earplugs for the entire thing,when we left we got in my car and went home and then the pain hit extremely hard yet again,I had to get my girlfriend to massage my back for an hour in hopes to it relieving the tension.A few days later and my left ear just went on fire and the pain became unbearable,my T and sensitivity jumped up out of nowhere along with it and I was a wreck!I just sat in my room for a month trying to figure out what the hell was happening,that I had desensitised myself from sound but I'm now getting worse?A month later and I was still none the wiser,I decided to go see my neurologist and audiologist one last time to get answers.

      My neuro told me all about the Jastrebroff model yet again and that my nervous system needed to be desensitised,that these symptoms were all a result from stressing about sound and ear muscles etc.That once I conquered my sensitivity that all these symptoms would simply disappear.

      I left somewhat relieved but still extremely confused,I needed sound but sound was causing these symptoms?How does that work?

      I then went to my audiologist,this was a month after my collapse in February and I for the most part was stable,I had improved a great deal.He conducted numerous hearing tests on me and all of them yet again showed up perfect.
      This is when he done the speech test way too loudly for me,I didn't get anxiety or anything like that,I was convinced by him that this couldn't possibly damage me.I returned home and began listening to low level pink noise through ear pieces.After only a few minutes my ears and head became overwhelmed with pain and my T just went insane!The shower and everything went distorted along with numerous other sounds.

      I collapsed,I couldn't believe what was happening to me,I was so confused and the pain was just unbearable!

      I sat in my room crying everyday as I just couldn't believe what was happening to me,every sound was painful to hear even the tv on low volume caused horrible stinging burning pain in my ears and head.
      It was then that I realised that sound therapy and exposing your ears to noise was all bullshit,it couldn't possibly be the brain causing this as my symptoms just didn't match it,that desensitisation was a farce because I had greatly increased my tolerances only for it to worsen with more noise?Not even loud noise but just everyday living noise?

      That's when I booked another appointment with a neurologist,this time I found one willing to actually investigate my symptoms,his conclusion?
      My symptoms were 100 percent inline with those suffering from peripharel neuropathy but he could find no damaged or compressed nerves?His diagnosis was that the only nerve that could be causing this that he can't investigate is the auditory nerve,it's the only nerve he can't block or investigate that's part of the peripheral nervous system.

      So I left and finally had some answers to my questions,too little too late if you ask me.

      So here I found myself,stuck in hell with no sound therapy blanket to protect me and give me hope of curing myself,that I knew it absolutely was nerve damage and that there was simply no denying it,I can actually feel the nerves in my cochlea sting and burn along with a heavy pressure,I know that sounds impossible to everyone here but believe me,I can physically feel them reacting to sound and burning and stinging and my T reacts to it,it's beyond bizarre!

      I went for another hearing test a few months back,this time with someone more competent and understanding and I still have zero hearing loss from 0-10,000hz,minimal at best.I can also hear up to 16,000hz at a push bi-laterally using high frequency tone apps on my phone.I can hear them better than my girlfriend and brother!

      Over the course of this year little noises happened like someone laughing or shouting near me and various other sounds and I've slowly but surely gotten worse over the year,after the initial blowout thanks to my audiologist I improved somewhat over the coming 6 months but then began to worsen from noises not even considered loud,I wear earmuffs for driving and shopping but it's still not enough!The pain leaves me in bed for weeks.

      A dental appointment in December was the final straw,my ears became waaay more sensitive and my T just took off again along with heavy distortion that varies from one minute to the next.

      I get up,drink some tea and then go back to bed,that's pretty much my day now.

      Despite all of this my hearing is still great,I'm going for another full hearing test soon up to 16,000hz this time to get an official benchmark before starting my LLLT treatment.

      This is why I agree so heavily with Libermanns Synaptic theory,that after loud noise the haircells recover but the neurons underneath are damaged and continue to degenerate over time,it appears that's exactly what's happening to me and Foncky seems to mirror this message too.

      At the moment,I can barely handle a conversation with people,certain pitches just stab my ears in pain and are unbearable.Who knows what lays ahead for me,hopefully LLLT can heal me but I guess I'll have to wait and see.
       
      • Hug Hug x 1
    26. Canador

      Canador Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      Unknown

      Yes, it's interesting that so many drug trials want tinnitus less than a year old--a time frame in which the condition would most likely improve anyway.

      That's similar to the TRT claim of 18 to 24 months for improvement of hyperacusis. It often gets better during that time all by itself. That's just too convenient, and it's why TRT *is not* the Holy Grail.


      (lapidus-- Notice the last paragraph. We weren't off topic all that time; we were just leading up to the climax.)
       
    27. Ed209

      Ed209 Member Benefactor

      Tinnitus Since:
      07/2015
      Nice recovery (y) :LOL:
       
    28. Ed209

      Ed209 Member Benefactor

      Tinnitus Since:
      07/2015
      Exactly Stophiss, sort your shit out. Look at all the carnage you have caused :LOL:
       
    29. bill 112
      Fine

      bill 112 Member

      Location:
      Republic Of Ireland
      Tinnitus Since:
      02/2012
      Cause of Tinnitus:
      Noise exposure
      When I got H in 2014 I improved greatly over the first year,when I actually think about it I quickly realise sound therapy had nothing to do with it.

      I was given pink noise CDs etc but I barely used them,maybe once or twice?
      I just watched tv in my room and eventually felt a lot better,bought a quieter car and returned to work and carried on with life.A year after the incident and I did still had H,nowhere near as bad just mainly high frequency noises that were sharp or really loud noises were uncomfortable.

      When I look back I realise that this was as good as it was going to get for me,months later and I was still the exact same but had it in my head that I would eventually get better and better until I was cured of H eventually,that desensitisation was a slow process but the second I began pushing it slightly out of my comfort zone everything went to shit real fast.Things are always clearer in hindsight.
       
    30. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Treatments are far more profitable than cures.
       
      • Agree Agree x 1

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