Experts Know So Little It's Scary

Discussion in 'Support' started by Penelope33, May 13, 2014.

tinnitus forum
    1. Penelope33
      Torn

      Penelope33 Member

      Tinnitus Since:
      October 2013
      I've just read the lasted publication of audiology on the BTA website. One of the leading people of this is David B, the man I saw at my hospital . He was good. He listened and gave advise. However when I discovered that my tinnitus was due to self pleasure, he said no, it's not related to audiology at all. He had never heard of that in all his years as dealing in tinnitus. It became apparent, not only in his article, but from his words just how little IS known about tinnitus. It remains largely elusive, leaving experts to test on animals and even then they are inducing tinnitus of only some forms, or trying to treat it in only some forms. It's all very worrying to me . That experts know nothing about it. I suppose, how to cure a noise? You can't see or feel a noise.... It's just there. This is what makes me scared every day. I cry everyday, I wake up in the night sweating with panic. I'm just scared.
       
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    2. Stina
      Psychedelic

      Stina Member Benefactor

      Location:
      Tartu
      Tinnitus Since:
      11/13
      Experts still dont know what causes many conditions. Most of the conditions I have in my family (depression, arthritis, hormonal inbalance) are for unknown reasons. The truth is the human body is so complex that most disease can't be tracked down to one certain cause or explain them a 100%. Modern medicine unfortunately is only able to keep people alive and not cure most conditions. That probably goes for tinnitus as well. I guess we just have to hope.
       
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    3. Grace
      No Mood

      Grace Member

      Tinnitus Since:
      11/14/2013
      There starting to know more and more as time goes on. T is complex, but theres alot of researchers and treatments in the works.. One will work eventually. The military will come up with a solution if others dont, it will be a large profit for them. Its almost like a contest and who will win. Dont give uphope!
       
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    4. citigirl13
      Dreaming

      citigirl13 Member

      Location:
      North Yorkshire, England
      Tinnitus Since:
      17/1/14
      I know, it is terrifying. That's what scares me so much about T, because I worry that no one can help me. For example, I don't believe that people with T just haven't noticed the fullness until they get T - I am sure there is a connection. But until experts learn more about T WE are the best form of medicine. We just have to try to ignore our T and go on with our lives. It's hard and it IS unfair - doctors should know more about T. But on the plus side, the more noise we make about T (pun intended!) the more research will be done.
       
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    5. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Honestly speaking I am not sure if they will find a cure. Of course I want to hope.
      My T was never an ear issue. I never had T until I had a very stressful situation.
      I think the brain theory is correct: Overacting neurons in the brain make the sound.
      When I take a benzo, the volume goes down to nearly quiet.
      So this confirms my brain is doing something it should not do.
      How do you want to fix that?
      Therefore, the only way out of this is habituation.
       
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    6. citigirl13
      Dreaming

      citigirl13 Member

      Location:
      North Yorkshire, England
      Tinnitus Since:
      17/1/14
      I don't think they will ever be able to cure it completely - but I believe there will be treatment that can get the volume down. As you said, benzo makes your T nearly disappear. If they could find a drug that could do that and would hopefully be safe for long-term use - well, I wouldn't say no to that.
       
    7. awbw8
      Balanced

      awbw8 Member Benefactor

      Tinnitus Since:
      04/2013
      I think part of the problem with T is that it's a symptom, not a disease. It's like saying, okay, this huge population has a stuffy nose - but think about how many things cause a stuffy nose and how many different ways there are to treat those different causes (allergies, a cold, a virus, dry air etc.)

      That said, tinnitus is something we experience as a noise, but it isn't actually some invisible thing - something is happening in our bodies to produce it, so there's always a chance someone can figure out a way to fix it. I've just learned (am learning, really) to live in a space where I think "hey, a cure could always come", but "hey, I'm pretty habituated and life is pretty good." It's not giving up on a cure and it's hanging my happiness on it either.

      Try not to worry @Penelope33 - I really feel for you with the crying and the panic, I was that way every day, too. I know it's a hard habit to break out of (to say the least), but things can be good without a cure and amazing advances (medical or otherwise) can happen in the blink of an eye. Think about all the treatments for diseases/infections etc. that came about by accident when something else was being studied. It might be some other kind of researcher that stumbles upon the cure for T.

      So try not to worry about the future - we don't know what will happen. But either way it will get better, we'll habituate, or it will go away (by cure or other means). So either outcome will leave you with a good life :huganimation:
       
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    8. Kathi
      Balanced

      Kathi Member Benefactor

      Location:
      NJ/USA
      Tinnitus Since:
      10/30/2013
      Cause of Tinnitus:
      HFHL and stress
      There is a lot of hope @Penelope33 --Scientists are learning about regenerating hair cells from chickens, neurologists are now studying T as it is realized that it's not only an ear issue. They are learning to retrain the brain. The ATA is funding research and plans a cure in less than 10 years now...and I wouldn't be surprised if it's a lot less time.

      Even if a cure is not imminent, we can have good lives through habituation. Try to keep positive.
       
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    9. Penelope33
      Torn

      Penelope33 Member

      Tinnitus Since:
      October 2013
      I really think habituation is based on how loud it is. If it's really loud like mine then it's impossible to get used to as it always sounds so foreign
       
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    10. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Definitely.

      I took a break from suffering today. Had little bit panic this morning and cried.
      Decided to take a benzo (2nd time in 7 months). After some minutes, I became the old me.
      T loudness went down and T was easily been put into the background.
      My mood much better, no more stomach issues, and I could eat normally. No masking, no distraction.
      This was only to get some relief and to prepare for the next day.
      Please do not take this as any suggestion.

      But for me it was again another prove that T is my problem and not any other psychological issues.

      Penelope, we will also habituate to loud T, but it takes longer.
      I know how hard it is going through the say. Doing this myself every long day.
       
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    11. bill 112
      Studious

      bill 112 Member

      Location:
      Republic Of Ireland
      Tinnitus Since:
      02/2012
      Cause of Tinnitus:
      Noise exposure
      Just wanted to say that these so called experts arent experts at all.I mean we know more than they do thats why its so frustrating when in the presence of these so called experts they genuinely believe they know better than anyone else...why?because they have a shitty degree stuck to the wall that says T genius qualified from T clueless acadamy and is now a fully qualified T Chuck Norris!!His ears dont ring because he told them to shut up thats how bad ass he is.Who was he to tell you that self pleasure didnt cause your T because at the end of the day who knows!!Its not audiology related??Well first off we know that a lot of T causes arent audioligy related and can start from a number of things the list goes on and on and really has more to do with the brain.If he was really an expert he would of told you that but yet he failed to do so.In my opinion he got embaressed by a woman talking about self pleasure and swiftly tried to move off the subject,if he really cared he would have been interested in your story and passed it onto researchers as who knows your story could be another piece of the T puzzle that researchers are looking for but yet he failed to do so.I recently went to see a ear specialist in Dublin and he didnt even know how to pronounce T properly or what it really was.I literally just got up and walked away from him as I knew talking to him would be the equivilant of talking to a barrell of pig shit.The real experts are the researchers who no one ever really gets to speak to.I recently spoke to a researcher a genuine expert and the knowledge difference was vast to say the least compared to these so called experts.Even ENTs are useless,when I went to see my ent she looked at my nose,just the outside of my nose and prescribed a decongestant and said it was ETD....ents can tell whats wrong just by looking at your face.
       
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    12. Penelope33
      Torn

      Penelope33 Member

      Tinnitus Since:
      October 2013
      They are all bull shit. That's what I say. :)
       
      • Agree Agree x 1
    13. Littlebailey

      Littlebailey Member

      Tinnitus Since:
      03/2014
      Good for you @Martin69 I'm happy you had some relief and a more enjoyable day.

      Are you excited for the World Cup? Does Germany have a chance? :)
       
    14. Littlebailey

      Littlebailey Member

      Tinnitus Since:
      03/2014
      @Penelope33 don't be frightened. If you really got your T like you say did, the real cause would be for more psychological reasons, the sort of thing that conceivably affects a lot of T sufferers. Something to do with stress and such, and the deeper recesses of the human mind if you will. It doesn't mean that T researchers are more less smart in understanding the true nature of T, even if unfortunately they're not all that smart about it.
       
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    15. applewine
      Curious

      applewine Member Benefactor

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Myofascial Trigger Points
      If you don't think yours is an ear issue it may be somatic induced (muscle). I never had T until I had a very stressful situation also, but I had that stressful situation in response to an adverse reaction to a poison / medication.

      Some T can be caused by muscles of the head/face, neck, or mid/upper back. If you notice any chronic muscle pain at all that is an indication. That may be base of the skull pain, temple pain, jaw pain.

      I developed orofacial pain and/or TMJ dysfunction at the same time my T started. Before that I just had chronic pain at the base of the skull. This was likely caused by trigger points in the lower trapezius (between the shoulder blades). At the time I was concerned with the neck pain and didn't know anything about trigger points.

      I have serious doubts that all of my T is caused by trigger points or my jaw, but one of the sounds may be. I have about three in each ear. The ENT didn't do any tests except look in my ear with that device and I had a hearing test because I requested that when I scheduled.

      Thankfully my hearing is good as I was able to hear most sounds at 0 db, which is considered the lowest for normal hearing. I however seem to have super human hearing in my environment all my life and hear things very quiet and far away.

      Right now I'm trying to treat my right side jaw pain to see if it will fix the right side loudest noise. When I press on my masseter muscle that hurts chronically I get a hissing noise that lasts a while in my right ear. I have been unable to get my TMJ issue fixed and that masseter muscle pain never goes away with massage. I did however discover that trigger points in the SCM can trigger a trigger point in the masseter muscle.

      I recently found a spot high up on my SCM muscle that when pressed just right will cause a pain referal to my jaw area. I'm hoping that with enough work I may be able to get rid of this SCM trigger point and then maybe the masseter trigger point will go away which may be causing the louder right side tinnitus.
       
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    16. applewine
      Curious

      applewine Member Benefactor

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Myofascial Trigger Points
      I don't know what this self pleasure is all about. However, repetitive strain injuries can cause trigger points to form in muscles and some of those muscles can cause tinnitus.

      So, unless you are thinking there was a direct action on the central nervous system, then yes, physical activity could cause chronic tinnitus.

      If the cause were trigger points in the muscles there are about a dozen of them thought to be implicated by some either directly or indirectly. This is because tinnitus is anything that gets to the auditory center of the brain and the ear is not the only thing that feeds in there.

      Many muscles of the head and neck are attatched to nerves which feed into this area as well. The most common muscles which can cause tinnitus are the lateral pterygoid, the masseter or deep masseter, and the SCM.

      You may want to research trigger points and tinnitus. These are basic things any doctor who ever wanted to learn about tinnitus would know, but I think they don't go outside of their closed groups to learn anything.
       
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    17. Penelope33
      Torn

      Penelope33 Member

      Tinnitus Since:
      October 2013
      Thanks for your post, I have not looked into trigger points. It's all such an elusive thing this tinnitus. I'm at a loss of hope really. Scared and upset .
       
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    18. KingRoanoke

      KingRoanoke Member

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Look at what the dog is wearing.
      Sometimes I think about how little we know about tinnitus and how to effectively abate it. Then I read a book about modern engineering and math and I realize that people have figured out and accomplished things that I cannot even conceptualize properly. So much so that I feel embarassed to judge the progress of the former.
       
    19. Snake Plissken
      Crappy

      Snake Plissken Member

      Location:
      Chester
      Tinnitus Since:
      09/13
      Does this mean what I think it means? Surely not...
       
    20. Penelope33
      Torn

      Penelope33 Member

      Tinnitus Since:
      October 2013
      What do you mean? Sorry but it's best to just be blunt on here , tinnitus is hard, that's why I had to be honest and upfront on my cause :-(
       
    21. Snake Plissken
      Crappy

      Snake Plissken Member

      Location:
      Chester
      Tinnitus Since:
      09/13
      How in the hell could that have caused it? My inclination would be that your doctor is right, that has absolutely nothing to do with audiology.
       
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    22. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      "...because they have a shitty degree stuck to the wall that says T genius qualified from T clueless acadamy and is now a fully qualified T Chuck Norris!!..."
      :ROFL: So true.

      @Penelope33, masturbating 60x per day was brought about due to depression or a personal crisis or some form of psychological stress.
      It wasn't pleasure that caused tinnitus.
      This woman suffers from persistent sexual arousal syndrome= 100+ orgasms daily.
      She does not suffer tinnitus. http://www.dailymail.co.uk/femail/a...mans-rare-disorder-sees-climax-hours-day.html
      Chronic tinnitus isn't an audiology problem, its a brain problem.
      See Autifony thread for some hopey Penelope.
       
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    23. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      The amount we know about t has increased considerably. I don't agree that experts don't know about t, they may not know every reason why t starts but we have good theories as to why and how t comes about and hopefully from this will come treatments. I know many people are can't belive we don't know more but the ear and brain are not completely understood. No there is no cure and in that regard you can say experts don't know enough, maybe orgasms can bring on t by some unknown circumstance . But there are experts out there who can help people habituate. I know some people don't like that as an option bit at the moment it's the best we have. In terms of habituation we have experts who are quite good at what they do. I also don't agree that loud t cannot be habituated my uncles is very loud he is habituated. My t is not maskable and I thinl I'm very close to being completely habituated. I can go hours without hearing it and when I listen to it I honestly can't believe how loud it is. So have hope guys.
       
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    24. T-Saiyan
      Badass

      T-Saiyan Member

      Location:
      Where ever Money needs me to Be, USA
      Tinnitus Since:
      12/03/2013
      i bet if it was bill gates Obama or justin bieber they would know more
       
    25. gary
      Transparent

      gary Member Benefactor

      Location:
      Macomb, MI. USA
      Tinnitus Since:
      07/2012
      Cause of Tinnitus:
      Who Knows
      T-sa, I used to think the same, but there are many people with big names & big money who still have T....
       
    26. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      @gary
      True, and they do absolutely nothing to help towards more research and more awareness.
      Dissapointed!
       
    27. RichL
      Inspired

      RichL Member Benefactor

      Location:
      Palmerston North NZ
      Tinnitus Since:
      1990
      Cause of Tinnitus:
      Acoustic trauma
      That's the problem, most of those big wigs who do have T don't suffer from it!
       
    28. Lisa88

      Lisa88 Member

      Tinnitus Since:
      11/2013
      So glad that research for t has taken on a direction of neural studies.
      Many out there with hearing loss who do not have t.
      The auditory nerve can be cut, and still t sounds.
      IMHO, I think t is a brain related condition.
      For many, t sounds at the measured frequency of hearing loss. But for others, t sounds when no hearing loss is measured at that particular frequency of t. Not sure that regeneration of hearing cells within the cochlea would reverse t.
      Whether originating from hyperactivity in the Central Auditory Cortex or engaging other interpretive areas of the brain, I hope research continues to move in this direction.
       
      • Like Like x 1
    29. gary
      Transparent

      gary Member Benefactor

      Location:
      Macomb, MI. USA
      Tinnitus Since:
      07/2012
      Cause of Tinnitus:
      Who Knows
      Valeri, your point of view is well taken....
       
    30. Lisa88

      Lisa88 Member

      Tinnitus Since:
      11/2013
      On a lighter note re doctors and t, this has been my face at many offices the last few months :) This image makes me giggle every time. 53080793.jpg
       
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