Who Are the Tinnitus Experts?

Discussion in 'Support' started by Michael Leigh, Dec 3, 2015.

tinnitus forum
    1. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Who are the tinnitus experts?

      The onset of my tinnitus stems back to a time when the Internet hadn’t yet gone mainstream. My main source of information about it came from tinnitus organizations and books that I had got from the library or bought at a store. How times have changed. Although I learned a lot from books, I really wanted to meet with people that had experience with tinnitus and would be able to advise me how best to cope especially in the early days. For all I had been hearing was, there is no cure you’ll just have to learn to live with it.

      Through one of the tinnitus organizations that I had joined they published a magazine which I found very informative. I was heartened to see they had readers letter pages, where people could write in for advice or ask questions and hopefully they’d be answered by more experienced people living with tinnitus.

      It was nearly 20 years ago when a video tape recorder was in many homes. I thought my luck was in when I had the opportunity to borrow a VHS tape of a tinnitus seminar held by a Dr, that worked in ENT and was a tinnitus expert who also wrote a book on it. The venue was in a large hall. He stood on a podium behind a lectern with microphone and presided over his seated audience and looked very official. After his introduction he said he’d answer any questions at the end of the evening . At last I thought I was going to learn something and settled down to watch the hour long tape.

      To say I didn’t like what I had seen would be a polite way of describing it. For one hour I watched and listened to this person say everyone gets tinnitus occasionally. It is mostly to do with noisy background activity withing the body and it travels up to the auditory system where the signals are transmitted to the brain. Most people can easily ignore these signals was his theory but those with tinnitus, have allowed their brain to focus on them, until they become louder and eventually become a problem. He asked the audience, how many had been for a night out where the music was played loud and at the end of the evening their ears were ringing?

      Nearly everyone put their hand up. He walked pompously from behind the lectern and stood at the front of the stage and said “And by the morning the ringing has gone a way right”? Looking very pleased with himself he continued. “But in your case you’ve allowed your brain to hold on to the tinnitus and when you don‘t hear it any longer you say”. In disbelief I watched him start to jog up and down the stage shouting out “Where’s my tinnitus, where’s my tinnitus?”.

      When he eventually stopped he could hardly contain the huge smile that was spread across his face, as he looked very pleased with himself. However, the audience looked less than impressed at what they’d seen because no one said a word. I watched the tape until the end and sent it back with a letter of thanks and my comments which were not favourable. My letter was printed in that tinnitus magazine to warn other potential readers of what to expect before asking to borrow it.

      What I had witnessed all those years ago on that video by a so called tinnitus expert, was nothing short of mocking people that find tinnitus debilitating when it’s severe. It was very clear to me, that Dr had never experienced loud intrusive tinnitus once in his life. Thankfully times have moved on and there is greater understanding and help for people with tinnitus, and not all health professionals think it’s all in the mind or something that can easily be dismissed because it isn’t.

      I am thankful to the Internet for enabling people to come together and meet in forums like tinnitustalk and give help and support to those that need it. In my opinion, these are the people that are the real tinnitus experts because they know what it’s like to live with the condition daily.

      Michael

      My consultant who I have a lot of respect for knows all about the anatomy of the ear, for she is an Audiovestibular physician. She once told me, that I know more about tinnitus than her, for the simple reason she has never experienced it.
       
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    2. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Its that difference between physiological tinnitus, which he was describing, and pathological tinnitus which he clearly had no understanding of whatsoever. Its like not knowing the difference between being a bit puffed out and having profound emphysema.
       
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    3. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      I fully agree with you PaulBe.
      Michael
       
    4. RaZaH
      Not amused

      RaZaH Member Benefactor Team Tech

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      We are the experts .
       
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    5. noisebox
      Loved

      noisebox Member

      Location:
      Yorkshire, UK
      Tinnitus Since:
      04/2012
      Cause of Tinnitus:
      West End show. Came back 2015 vitamin D overdose prescribed
      I have thought about this post a lot.
      Firstly we are the experts in my opinion as we know ourselves better than anybody.
      My audiologist told me in 2012 my T was caused by my slight hearing loss, though the loss was bilateral the T is unilateral, then this year she said my t was not caused by the hearing loss. Go figure.
      And I too had ringing after nights out that went away, they were totally different to the sound I woke up with that day in 2012, not after any noise trauma at all.
      How many people do we knew who have run around shouting where is my T when its gone. Granted you think you have gone deaf when it goes its so unusual. But look for it, no. Besides while we have it we don't need to look its slapping us all day long. last thing I hear, first thing I hear.
      Hate it, stupid man.
       
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    6. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Hi Noisebox,

      I totally agree with your comments. We are the tinnitus experts, every single one of us that has intrusive tinnitus. I am not talking about the people that can easily ignore it or hears it once in a while. That isn’t tinnitus, that’s just a little noise one hears in the auditory system now and gain.

      I am pleased we agree on something and hope I don’t wind-you-up like I did on the BTA forum. I say again that it was never intentional. I am pleased that the post made you think, because you gave very good account of how your T makes you feel and described what that man is to a tee.

      All the best and I hope your tinnitus settles down soon.
      Michael
       
    7. noisebox
      Loved

      noisebox Member

      Location:
      Yorkshire, UK
      Tinnitus Since:
      04/2012
      Cause of Tinnitus:
      West End show. Came back 2015 vitamin D overdose prescribed
      Michael though I feel like an expert on myself my present dilemma has me foxed. My previously very stable T is now coupled with H but it is so very unstable. Could that be the H? Plus the mystery is it cycles, one day loud hiss which grows through the day, the next very quiet piercing high ring impossible to mask. Plus any exhertion however small, or even animated talking spikes it. Do you have any ideas, audiologists I've seen just nod and say you got better once. But this is so different and caused by medical issues I'm quite scared. It is very overpowering in nature. I want to believe quieter is good. I have to say the very crazy daily spikes of 4 months ago have gone. This is what I'm left with
       
    8. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Noisebox.
      I am sorry hear of the discomfort that you are in. As you know something has caused this increased sensitivity to your auditory system. I am quite taken aback by your audiologist's attitude to be honest, and I suspect she doesn't have tinnitus like so many hearing therapsists and audiologist do who treat tinnitus patients. That way, they can at least have some understanding of the condition and what their patients are going through. My hearing therapist was born with tinnitus.

      If it is a medical condtion that's caused this increased sensitivity then what I propose as a solution may not work. Although hyperacusis can cure by itself there is no assurance that it will. The best way to cure or reduce the sensitivity to the auditory system is by using sound enrichment. Now I understand that you may not want to do this but, that is what Drs and hearing therapists advise. If you try to avoid everyday sounds by keeping in the quiet, it is likely to make your hearing more sensitive, which will increase the hyperacusis.

      As you know hyperacusis is usually treated by wearing white noise generators, but counselling is also recommended otherwise the treatment doesn't usually work. If you are unable to get this treatment. I advise using a sound machine at night by the bedside. Some people prefer silence but anyone with intrusive tinnitus or hyperacusis is not helping themselves by sleeping in a quiet room. The sound machine supplies the brain and auditory system with sound enrichment whilst in deep sleep. Over time the hearing receptors or pathways in the brain start to close. By not using sound enrichment these pathways continue to open making the auditory system more sensitive, which result in make the tinnitus and hyperacusis more intrusive during waking hours.

      Using a sound machine at night takes time to get used to at least 4 weeks. Start by turning down the volume until it can just be heard and not drawing attention to itself. Over the next week or two slowly increase the volume but be careful not to mask or coverup your tinnitus. The brain cannot habituate to tinnitus if it cannot hear it. That's why totally masking tinnitus doesn't work.

      Another thing that many people do not realize is this: If hyperaucusis is present and not cure then tinntius will always be a problem. Some people believe they have habituated to their tinnitus not realizing they haven't cured the hyperucisus. This is one of the reasons they continue to get spikes in their tinnitus, because the auditory system is hypersensitive.

      Nature sounds are usually the best at night coming from a sound machine rather than music. However, we are all different, so if you prefer to drift off to sleep listening to music that's fine, just make make sure whatever sound source you use, it plays throughout the night until morning.

      The idea is to desensitize the auditory system by using sound enrichment at night and during the day, this is the best way to cure the sensitivity to sound.

      Michael
       
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    9. noisebox
      Loved

      noisebox Member

      Location:
      Yorkshire, UK
      Tinnitus Since:
      04/2012
      Cause of Tinnitus:
      West End show. Came back 2015 vitamin D overdose prescribed
      Thank you for that advice. I am trying to deal with normal noise at home all day. I was using sound enrichment when I couldn't sleep but found it really intrusive and kept needing to turn it off. Now I just have a clock by my bed.
      During the day I have most normal sounds and go out each day in the car a few miles and visit a few shops for up to an hour.
      I don't use earplugs except for hair drying and right now I don't vacuum or stay with my kettle which is 90db.
      I watch tv in an evening but not loud.
      I am alone in this as I cannot get any counselling in my town, I've tried everywhere.
      My daily regime was what I put together to face most sounds. I can at least hold conversations now a few months ago I was whispering. I have a radio on most times but sometimes have quiet, though that is hard to bear. I know I have a long way to go, I have been using my technique for 3 months now. I realise I have a long way to go as I am not using my fan oven, have to be careful putting pots away, find light switches painful. I am assuming I have at least until next summer before I will be better.
      I do find going to bed is the only relief as the T goes right down pretty much when I lie down in the quiet.
       
    10. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Noisebox. I think you have done very well in desensitizing your auditory system but I feel more needs do be done. Continue going out and being around normal everyday sounds. My only advice is to try and increase the sound therapy at night. It maybe strange at first and difficult to cope with but try and persist. If the ticking clock is what you prefer then try to move it closer to where you rest your head. Remember it's while we are asleep that sound enrichment does its magic. Above all try and avoid sleeping in a quiet room.
      Best of luck and please let me know how things are going
      Michael
       
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    11. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Hi Noise box,
      You are doing better than you have been and that is a big positive move forwards and be proud of your self.
      I know you have a long way to go before you as at a Happy place and hope your looking forwards to Christmas.
      Hyperacusis can be cured over time and your doing so well looking back at your past posts on the BY A and TT.
      I hope 2016 is a big turning point for you and a bright and happy future.
      You have my number and always happy chat with you anytime .
      Be proud of yourself you are stronger than you think and I'm smiling now as I type because your in a better place.
      Lots of love to you as always glynis
       
    12. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      My opinion is that it is always best to be wary of anyone who claims to be an expert. Most people who know anything much about anything of consequence are acutely aware of how little they actually know. People who claim to be experts are probably guilty of hubris in my opinion/experience.
      This forum has a strong tradition of calling out snake oil and looking for the actual science behind claims. I'm not saying you are wrong as such (I am no expert of course), but what you say runs counter to my own experience and intuition. I have tinnitus that I consider to be intrusive and much prefer a quietish room for sleeping, as well as a good amount of quiet in the daytime. Could you please provide some kind of evidence for what you are saying - preferably links to a reasonably reputable looking study or two?
       
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    13. Dubbyaman
      Angry

      Dubbyaman Member

      Location:
      Northern Indiana
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Excessive loud noise
      The closest to a t expert ive come, is neurosurgeon, Dirk De Ridder
       
    14. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      I believe we are all experts in knowing our own body to a certain degree. In my case I know my T pretty much inside out. However, I couldn’t claim to know what will help another person with this condition. Therefore, I don’t consider myself a tinnitus expert. I have a lot of respect for the healthcare providers that genuinely want to help their tinnitus patients and speak from personal experience; having a good GP, ENT consultant and hearing therapist for many years.

      If someone is having difficulty managing their tinnitus, I believe their first port of call should be with their Dr, so they can be referred to ENT.

      Any advice I give is for information purposes only. We are all different, so if anyone chooses to try my suggestions please keep in mind your experience may be completely different. Tinnitus is a very complex condition that comes in many forms and intensities and no two people experience it the same.

      Michael
       
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    15. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      Let me preface what I am about to say by saying I have great respect for the effort that you have put into supporting people on Tinnitus Talk, and I do not wish to undermine that in any way. But I disagree with some of what you say, and consider the way you word some of your posts worrying. In particular I think that you are a little disingenuous when you say that you do not consider yourself an expert. Your manner of posting (and indeed claim to be writing a book on the subject) are clearly intended to set you up as someone whose opinion is worth more than other people's. For example you say this:
      But that is precisely what you do claim! To give simply the closest to hand example, when noisebox says the following:
      You set aside/counteract exactly what she/he tells you helps (that her/his t is less bothersome when lying down in the quiet) and advise to avoid sleeping in a quiet room:
      So you are specifically advising a person to go against her/his own experience (seemingly without the backing of any scientific evidence), despite claiming:
      It seems to me that there is a big difference between what you claim to be doing and what you are actually doing.

      Please understand that I am not out for an argument. As I said, I appreciate the support that you give to people. I do however think that you could tweak a little the way in which you do this. I confess that it is a personal bugbear of mine when I see people report their experiences, only to have others think they know better.

      If you have any real backing for your claims, other than your own experience then please could you provide it. If your claims are only based on your own experience (and possibly a few others you have encountered) then could you please make that clearer by saying something like "I found that," or "anecdotally, some people find that" rather than making bold assertions in the style of the "expert."
       
      • Like Like x 1
    16. Atlantis

      Atlantis Member

      Tinnitus Since:
      02/2014
      I like @Michael Leigh but sometimes the style he writes in makes it sound like he thinks he is the authority of tinnitus, as if his experience of tinnitus was more right than the others...

      Maybe an opportunity for improvement?
       
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    17. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      I wish I were talented enough to write a book on tinnitus sadly I am not. My remark about writing one was to see if it got a reaction and it certainly did. Let me allay all fears amongst the green-eyed monsters out there, then you can all hopefully calm down. I’m not writing a book on tinnitus okay.

      I am here just like everyone else because I have an interest in tinnitus, and if I can help someone then I’m pleased, for I was helped in a similar way many years ago. I stand by my previous comment: we are all different, so if anyone chooses to try my suggestions please keep in mind your experience may be completely different. Tinnitus is a very complex condition that comes in many forms and intensities and no two people experience it the same.

      I always advise people that are having difficulty with their tinnitus, to be seen by Drs at ENT for they are the professionals.

      My post at the top of this page was about an experience that I had many years ago and thought some people might find it interesting, which they have said so in the messages I've received. I know noisebox from the BTA who is having some difficulty with tinnitus at the moment. My suggestions may or may not work but it's worth a try I think.

      I hope that puts an end to the matter and we can get back to the important business of helping people, if possible.
      Kind regards
      Michael
       
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    18. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      If I come across as all knowing about tinnitus Atlantis it isn't intentional. Perhaps it's because I was medically retired from my job because of my tinnitus, why I feel so passionately about it and helping those that are having a difficult time with their T. However, there is always room for improvement and I appreciate your advice.
      All the best
      Michael
       
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    19. Zug

      Zug Member Benefactor

      I read some of @Michael Leigh posts and talked briefly with him in private chat. I have nothing but kind words to him and some of the other old timers who come to this forum to help people like me who are still struggling. T is hard as it is already. It messes with our heads, our jobs, etc, I understand it's frustrating, but please let's not shoot down the people who are trying to help.
       
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    20. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Thank you for your kind words Zug.
      One cannot please everyone for there will always be people to shoot a person down or to pass unsavory remarks whether true or untrue, That's life. I have stayed up into the small hours talking to people on the telephone in tears, because their tinnitus is giving them so much trouble. I have done this totally free of cost and not looking for any praise. Just wanted to mentioned that.

      All the best
      Michael

      PS: Although I'm a senior citizen Zug I'm certainly not an old timer...lol. Although having tinnitus for 20 years might make me a veteran.
       
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    21. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      I also appreciate the support I have seen Michael give, as I said twice in my post. But there are consequences to advice: people spend money on sound machines that might not help them, they might lose sleep trying to adjust to something that does not do them any good. These things in themselves might increase a sense of desperation. This is why we look for evidence and want to know why somebody is advising a certain approach... is it from personal experience or from reading scientific literature? Is it an attitude imbibed from talking to doctors 20 years ago? These are reasonable questions not intended to cause offence.

      I am not attempting to "shoot a person down" nor did I make a single "unsavory remark"! If you think I did then point it out. My post was carefully argued, and gave you credit for the support you give. It is pure arrogance to believe oneself above reason.

      However, posting untruthful information ("to see if it got a reaction") looks more unsavoury to me:
      Let's end the bickering here. I'm gonna walk away now. When you get over feeling offended, please try considering whether there was some sense to what I posted. I mean you no harm.
       
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    22. Zug

      Zug Member Benefactor

      Hahaha, that's what I meant. I'm a "newbie" at 5 months, didn't mean to call you old. :confused: In the words of another fellow with Tinnitus: "May you live long and prosper" ;)
       
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    23. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      lol...Zug, you are certainly a newbie at having T for only 5months. I hope your tinnitus improves....
      Michael
       
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    24. Zug

      Zug Member Benefactor

      Hey @dboy didn't mean to start a fight of offend you in any way, english is not my first language so sorry if it looked like that. I think people here understand that everything that's written is no medical advice. In doubt I think everyone should discuss with a professional. What I'm trying to say is that I find some os the tips and support here very good, and I've seen people being harsh to the guys who are trying to help. I didn't mean to target specifically you, just wanted to calm things down a little before it escalated. All the best.
       
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    25. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Zug,
      I started this thread with a post about an experience I had years ago and then it got derailed.
      The whole purpose of people coming to this forum is to exchange ideas and hopefully help someone. I have had tinnitus for 20 years, people must get fed up me saying that. That doesn't mean I know all about it, certainly not. I am using a product that helps my tinnitus and said so in one of my posts. Because of it's expense I have chosen not to mention the name because it might not work for someone else. However, a sound machine is not a huge expense. Okay a person may not get along with using sound enrichment at night but I think it's worth trying. Especially when such devices are encouraged to be used by many Hearing Therapists during the day and night. If a person doesn't get along with it then at least they've tried.
      Michael
       
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    26. Natalie Roberts
      Depressed

      Natalie Roberts Member Benefactor

      Location:
      USA
      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Pregnancy or mild hearing loss.. Who knows.
      I know @Michael Leigh has chatted with me in private as well on many of my posts offering support/advise based on his experience. I found the support to be helpful. Although my T tends to prefer quiet, I decided to take his advise on the sound machine / sound enrichment at night and try it out. It wasn't a huge expense to me and if it worked, I figured it was worth it. Now of course I also listen to my own body as well and I'm sure most of us will agree to do the same. If it isn't working, I'm sure they would stop listening to said advice. For me, the sound machine works and helps me to sleep better sometimes and other times makes my already very reactive T much louder. The times it bothers me I just shut if off and don't do it that night. Many of the articles/websites I've read have stated sound therapy/masking as beneficial to most who have T (hence TRT) so sound therapy seems like it could work for some, of course not for all. I'm not even sure it's helping me at this point but I'm listening to my own body and moving forward cautiously when it does help. Also, Michael has always advised me if something is not working, back off for awhile or lower the volume and consult with an audiologist or ENT. Anyway, just wanted to chime in and say I apprecaite everyone who has taken the time to show me support during this difficult period in my life. Us "newbies" are terrified and feel alone so I appreciate so much learning from other's mistakes/gains and hoping they work for me as well.

      :thankyousign:
       
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    27. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Hi Natalie,

      Always a pleasure to read your posts as they are so well written. I wish some people would do the same as it makes life so much easier.

      Different things work for different people. Like the sound machine some people are averse to taking anti-depressants or benzos like clonazapam to help their tinnitus. However, in 2008 when I reached my lowest ebb with tinnitus, my consultant prescribed me clonazapam and it helped immensely. I was advised of its addictive nature and my GP monitored me closely. I take a small dose of 0.5x2 occasionally now when my tinnitus is severely intrusive.

      I hope the sound enrichment continues to help you.

      All the best
      Michael
       
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    28. dboy
      Jaded

      dboy Member Benefactor

      Location:
      UK
      Tinnitus Since:
      1/2007 & 8/2013
      Your post was perfectly appropriate and appreciated by me and I responded to clarify my purposes. I've got an academic background and am used to dealing with information, examining the finer points of meaning, needing to know about sources and reliability, etc. From what Michael said about writing a book I guess I assumed he would be comfortable with discussing those issues and with my analytical approach. I see I have caused offence to him though, which wasn't actually my intention.

      @Michael Leigh I stand by the substance of what I said since I consider it important, but I apologise to you if I expressed myself in a way that hurt you.
       
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    29. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      dboy,
      No need to apologize but appreciated it all the same. I am not offended by your comments, for as we Brits say: water off a ducks back. Though I may be considered a veteran in tinnitus terms, and by some a senior citizen, I’m certainly not an old timer as I thought Zug was referring to me. lol. My advancing years has taught me that life is too short to take offence over such matters. So lets turn to the task at hand, which is helping people with their tinnitus. In doing so I may just have enough research material to one day write that book!
      Michael
       
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    30. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Hope everyone can now put this thread to bed and remember we are all here to help and support others and take out of a forum information that might help us all

      Michael is a very dear and much loved friend and been by each others side supporting people with tinnitus for the last 5 years by phone,email,texts everyday of the week.
      Im so happy Michael has joined the forum and between every member on here we can all contribute posts and give comfort and reassurance and support to each other ,even for a long timer and old girl like me....
      Love you all...lots of love glynis xxx
       
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