Has Anyone Had CBT or TRT?

Discussion in 'Support' started by glynis-harbron, Oct 20, 2016.

tinnitus forum
    1. 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
      Looking into starting CBT or TRT but hope covers Menieres and tinnitus and a bit on low mood as family don't understand about it and honestly they think I come across as a moaner even though they have not read up on menieres and tinnitus to support me.
      Sometimes people don't have time or want to listen to others problems but our great forum is just.for that and help and support every one.

      My ENT refural might be a doorway into the treatment or refuted by a man I'm due to see in the morning.
      Worth a try as need support family carnt give as its a condition no-one sees unless you are sick all over them haha..ewe.....staying positive it will be a pleasant and helpful place to go......lots of love glynis
       
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    2. Rings-a-Bell

      Rings-a-Bell Member

      Location:
      Barbados
      Tinnitus Since:
      April 2016
      Cause of Tinnitus:
      Accoustic Trauma
      Thinking about TRT too... Apparently after 2 years of wearing their special noisemaking hearing aids 80% of people don't notice their T anymore (of course it is still there if they actively listen for it).

      Anyone have any experience with TRT before I shell out $3000 + airfare? (I will have to fly to do TRT in Toronto cause there isn't any in Barbados).
       
    3. truesilence

      truesilence Member

      Tinnitus Since:
      03/2014
      I had a course of CBT and although the therapist was great, it wasn't want that helpful for T. Practicing Mindfullness is more beneficial.
       
    4. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Rings-a-Bell TRT is one of the best treatments for tinnitus and I've had it twice in 20 years. It follows a strict protocol which was developed by Professor Pawel Jasterboff. The patient has to wear 2 white noise generators up to 10hrs a day every day. Set the volume slightly below the tinnitus then leave them alone, do not keep adjusting the WNGs throughout the day. At night they should be removed before going to bed. You place a sound machine by your bedside for sound enrichment and set it to play all night until morning. Keep the volume of the sound machine slightly below your tinnitus, it mustn't mask it.

      In the morning you put the white noise generators on your ears and carry on with your day. A vital part of the treatment is regular tinnitus counselling sessions with a hearing therapist. Unless you have these counselling sessions, the TRT treatment will not work. Treatment last from 12 to 24 months.
      Michael
       
      Last edited: Oct 20, 2016
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    5. Mahr
      Tired

      Mahr Member Benefactor

      Location:
      The Netherlands
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      unknown, probably hair cell damage
      Started CBT yesterday so it's a bit too early to say anything about it. But for the first time in years I felt heard, understood and listened to. That was a relief to start with.
       
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    6. gotyoubynuts

      gotyoubynuts Member

      Tinnitus Since:
      10/1990
      Cause of Tinnitus:
      Concert
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    7. Cor

      Cor Member Benefactor Team Tech

      Location:
      Amsterdam
      Tinnitus Since:
      02/2014
      Cause of Tinnitus:
      unknown
      I did a few months of CBT and it was helpful in many ways. It's not some magic cure for tinnitus, but it may help feeling better about your situation which can do wonders for managing your tinnitus.
       
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    8. Marlino
      Cowboy

      Marlino Member Team Research

      Location:
      Germany
      Tinnitus Since:
      02/2016
      Cause of Tinnitus:
      unknown
      What I don't like about TRT is that it is a rip off,
      selling you nothing more than encouring words derived from a questionable and contradictionary theory and a simple noise machine.

      But if it works though, why not try?
       
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    9. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      With all due respect you have never had TRT so please don't comment on something that you know nothing about. TRT is one of the best treatments for tinnitus. I've had the treatment twice in the 20 years that I've had tinnitus. The treatment last up to 2 years. So, I've had 4 years of TRT 10years apart.
      Michael
       
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    10. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Hi @glynis-harbron, how are you feeling? Nice to be home from De Costa NHS?? ;)

      I started CBT pretty shortly after my tinnitus started. My T brought on severe panic attacks. So I certainly had to do something if I didn't want to live drugged into oblivion just to make it through the day. CBT was by far the most beneficial thing I did for my tinnitus and taught me skills to help me deal better with life in general, not just T.

      In my case, I coupled my CBT with Neuromonics, a sound therapy somewhat similar to TRT. My doctors have said they wished more of their tinnitus patients would consider CBT and research has shown that sound therapies tend to work better when coupled with CBT.

      But again, everyone is different. Some folks here have had little success with CBT. And you need to stick with it, and work at it, for a bit before you notice any difference. Or at least I did.

      Also: sound therapies (Neuromonics, TRT) are expensive. My guess is some folks would do just as well with some kind of DIY sound therapy that would cost a lot less.

      I have written a lot about this here at TT.
      Here is one thread on Neuromonics (again, not necessarily endorsing it. Just my experience):
      https://www.tinnitustalk.com/threads/neuromonics.1378/page-6#post-78885

      Also, you can search the forum for my posts regarding CBT.
      Good luck and best wishes. You also can PM me with any questions.
       
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    11. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Oh, and honestly: You are NOT a moaner, @glynis-harbron! You tell your family to buck up and support you the way I am sure you have supported them -- and as you support so many here. I recognize its hard for people to understand what we go through, but they can be empathetic.
       
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    12. 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
      Well today I had a phone call of my doctors Secretary to talk about sending off my ENT refural.
      She said they usually send you now to the one stop hearing and balance centres in the community hospitals for tinnitus as the main hospital only deals with the other problems but all the community hospitals now have closed this month.
      They said they will send a refural to ENT but could get refused to see me as they will know I have Menieres and tinnitus and under Specsavers audiology and wear duel purpose hearing aids.
      They said as all the community hospitals 7 about have just clossed their audiology departments the main hospital will be jammed sorting the mess out and might eventually see me to review my Menieres but not sure if will get seen for tinnitus as would like to look in to TRT .
      I have worn white noise generators for many years and now wear duel purpose hearing aids with white noise setting like masker so TRT might be out of the question with hearing loss needing the masking from hearing aids.
      Only ENT will have the answers to that if get to see them.
      Sad loss for Stoke on Trent for tinnitus sufferers as the closures will put back lots of people's appointments for a bit....lots of love glynis
       
    13. 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
      @LadyDi ,
      Hi and thank you for your posts.
      Ears are so naughty with two sounds together and pressure pain also doing my nut in but doing my best keep my chin up.
      I do have my Specsavers appointment this Thursday and hope no more hearing loss but will let you know.
      Maybe my hearing aids might get tweaked a bit.
      CBT seems more acsessable as family CBT means carnt be bothered!!!
      See what Thursday brings.....
      Hugs from me and Molly Bunny....lots of love glynis
       
    14. Zug

      Zug Member Benefactor

      Hey @glynis-harbron . I'm doing CBT. It's not a magic bullet and it takes work, I'm actually impressed by people who say "I tried it a couple of times". I've been on CBT since last year (remember when I got dumped by my girlfriend? A short while after that). It takes time and you have to work on changing the way you think, do the mindfulness exercises, etc.

      I can tell you my mood is much better, there are periods I don't notice the sounds, I'm more relaxed overall. From time to time I still get annoyed, and concentration is a work in progress. I'm in a much better place than I was, but Don't go into it expecting some magic stuff.

      If you have any question, shoot! ;)
       
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    15. Zorro!
      Wtf

      Zorro! Member

      Glynis, I have gone thru cognitive behavioral therapy and found it very helpful for my overall mood and outlook on life. It didn't cure my tinnitus but it helped me handle it much better than I was. Just getting to talk to a therapist every week was beneficial despite the fact that my therapist wasn't that good. But just the act of having a sounding board for my problems was better than trying to figure things out on my own.

      So if you get the chance to try therapy I suggest you do so. For me things didn't change overnight but after a couple months I was in a much better place.
       
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    16. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      What goes on in these sessions?
       
    17. Zorro!
      Wtf

      Zorro! Member

      Ofo8Te7.gif
       
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    18. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Some will be relieved to know it's nothing like the video clip in zorro's post, at least it wasn't in any of my TRT sessions...

      You have asked an important question that I feel deserves an appropriate answer which I am unable to do in a few sentences. I believe it is also on the minds of other people in tinnitus talk. I say this because, whenever I mention TRT and the benefits that a person with tinnitus is likely to get from it, some people say to me: This treatment cost a lot of money and many can't afford it. One person even had the effrontery to ask me not to mention TRT in any of my posts because of its cost.

      It is unfortunate that many things in this world come down to whether a person is able pay for it. Based on this they will get a particular service and that is very sad especially when it comes down to healthcare. I was fortunate to have this treatment twice and live in the UK where we do not pay for our healthcare. However, TRT is not available at many UK hospitals - although there are usually alternative treatments and devices such as hearing aids and white noise generators that are free and do help tinnitus patients.

      I believe the reason TRT is not more readily available here is due to its cost and the duration of the treatment. Therefore, if people in the UK want to try TRT and it's unavailable at a hospital where they live and they are unable to travel the distance to an NHS hospital were it's available. Their only other option is a private tinnitus clinic which again cost a lot of money which will be equivalent to what other people pay in other parts of the world.

      I will answer your question on what goes on in TRT sessions, and the benefits of this treatment a person is likely to get in a separate post, here and in the main forum soon.
      Michael
       
      Last edited: Oct 22, 2016
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    19. Marlino
      Cowboy

      Marlino Member Team Research

      Location:
      Germany
      Tinnitus Since:
      02/2016
      Cause of Tinnitus:
      unknown
      If that means that it helped for you I'm really happy for you. Whatever works and whatever it costs.

      I for myself will do it in some way, since in Germany it is the officially accepted treatment. Even though I read the TRT book and the theory behind did not convince me. Also the the counseling instructions were highly questionable to me. It sounded to me like telling the patient some pseudo theory with your doctors authority to give him some kind of acceptance of his fate. But to me this is religion and not medicine.
      I believe though its in best purpose and it can help some people considerably.

      I appreciate your effort.
       
    20. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Marlino
      I have also read the TRT book written by Professor Pawel Jasterboff and Jonathon Hazel. Indeed, it does explain the theory behind tinnitus retraining therapy. I appreciate that some people will be apprehensive on whether this treatment will be effective in helping them and mostly this is because of cost, as I've mentioned in my post above. As previously mentioned I have had this treatment twice in 20 years that I've had tinnitus. I also believe I have a wide understanding of tinnitus when it's caused by loud noise. I hasten to add, that I am not a tinnitus expert. Hopefully, after you read my post on TRT from a personal point of view, you will think differently about this treatment and perhaps even try it. Just reading the TRT book alone is not enough because the book is really meant for healthcare professionals.

      Michael
       
      Last edited: Oct 22, 2016
    21. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Tom Cnyc

      If a person is referred to a hearing therapist for TRT (tinnitus retraining therapy) and they also have hyperaucuis (sensitivity to sound) that often accompanies exposure to loud noise, it will also be treated. TRT or tinnitus retraining therapy is exactly what it implies. It is a retraining of the mind or the way a person thinks about their tinnitus and the impact that it has on their life. In my opinion, ninety percent of how a person is able to cope and overcome tinnitus is in the mind and this is why tinnitus counseling is so important when the condition is severe.

      A person’s emotions can be seriously affected and their ability to carry out everyday tasks. Things such as going to work, relaxing or to go for a leisurely walk can become very difficult. It can put immense pressure on a person’s relationship with their partner and friends because one feels no one understands what they are going through.

      Through regular counselling sessions with a Hearing Therapist trained in TRT, the patient learns not to look at their tinnitus as non-life threatening nor to be constantly afraid of it and to be monitoring every little change in its perception. The Hearing Therapist does this in a controlled and precise manner so that the patient feels relaxed and not pressured. Over time the negative thinking that is often associated with tinnitus and hyperacusis is gradually dispelled and demystified. Therefore, it must be stressed and understood, this treatment takes time and is something that cannot be rushed.

      The second part of the treatment requires the patient to wear two white noise generators for up to ten hours a day. They are first put on in the morning and the white noise set to just below the tinnitus, and then left alone. It can be tempting to turn up the volume when out on the street as traffic noise can make it difficult to hear them. Please don’t do this. Constantly adjusting the wngs volume will delay the habituation process.

      Over time the brain habituates to the white noise generators and pushes the tinnitus further into the background where it becomes less noticeable. This cannot be successfully achieved if the wngs is repeatedly adjusted throughout the day. While the auditory system is being treated with white noise it is gradually being desensitised and treating the hyperacusis. White noise generators should not be used when going to sleep at night. When retiring one should use a sound machine by the bedside and the volume adjusted to a level just below the tinnitus. The sound machine should be set to play throughout the night until morning and this provides the brain and auditory system with sound enrichment.

      To complete a course of TRT takes approximately twelve to twenty four months and in some cases longer. The duration of each counseling session is left to the discretion of the Hearing Therapist. Typically, these can last up to one hour or more. The amount of appointments required will be different for each patient, but it is quality rather than the quantity of the counseling that really matters.

      There are a few misconceptions about TRT and the way it is administered that some people misunderstand which I want to address. If a patient is given one white noise generator to wear this is not TRT. When two wngs are issued and no tinnitus counseling is offered on a regular basis, it is not TRT. I am not saying that a patient will not gain any benefit from the above treatments; I only want to state they do not follow the proper Tinnitus retraining therapy protocol.

      Michael
       
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    22. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      you didn't really answer the question. The Jastebroff model is well documented all over the internet. I'm more curious about what else is discussed there that justifies the high cost. TRT costs like 3500 dollars in NYC. It just seems pricey for an Ipod and some information on how the limbic system affects tinnitus. I'm doubtful that there is much more than that shared in those meetings.

      I went for CBT for 4 months for this and met two doctors that specialize in tinnitus. Most of what we do is just talk about life - not tinnitus. There is only so much you can say about it.
       
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    23. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Awesome news that you are doing so much better, @Zug. It's true, as you said, that CBT is no magic bullet. It won't make your tinnitus vanish. And yes, takes a lot of work. But it sure helped me.

      Good luck @glynis-harbron, and hugs. Keep us posted.
       
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    24. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      TRT and CBT are both counselling and by the sounds of things you were getting good treatment at your therapy sessions and I think you should have stayed with it. The whole point in talking about life is to help the patient see things differently and have a more positive outlook. Many people that have severe tinnitus only see doom and gloom and look at everything negatively, so there's no point in talking about tinnitus all the time.

      At first the therapist discusses with the patient how the tinnitus makes them feel etc but the main goal is to help them look at life differently and with a positive outlook. It doesn't happen over night, and that's why the treatment lasts up to 2 years. TRT and CBT cannot perform miracles and they won't cure tinnitus which is what some people want. However, they will help a person to move on with their life accept tinnitus and learn to habituate to it but a person has got to want that to happen. These treatments cannot do all the work.
      All the best
      Michael

      Positivity And Tinnitus


      For some people prolonged intrusive tinnitus can be very stressful and at times debilitating. This can sometimes lead to depression and a person may need to go on a course of antidepressants. I have often been asked in tinnitus forums and via email “It is great if you’re able to be positive, but simply telling someone to be more positive about tinnitus isn’t going to change anything”. I want to clarify here and now, that isn’t what I mean.

      Thinking more positive about tinnitus and bringing positivity into your life takes time it isn’t achieved overnight or by simply thinking to yourself “I must be positive about my life”.

      If a person wants to improve the quality of their life they have to be prepared to try and help themselves, because there is no wonder drug or operation that can cure tinnitus at this time. Unless a person faces these facts they will forever be trawling the Internet going from forum to forum complaining why there is no treatment for tinnitus when actually many of these people want a complete cure.

      I once read a newspaper article that mentioned: nineteen out of twenty medical conditions cannot be cured. Someone once told me “I don’t want to be positive about tinnitus, I hate it. Being positive wont make it go away". This is true, however, thinking more positive and bringing positivity into your life will reduce the perception on how you relate to tinnitus. CBT and TRT are based on having a positive attitude, without that these treatments aren’t effective.

      Long before CBT, TRT and the Internet came on the scene Doctors have been telling tinnitus patients, there’s no cure you’ll have to learn to live with it. Most of us know this is easier said than done.

      So how does one start to think more positive about their tinnitus and to bring positivity into their life?

      The fact that someone with tinnitus is reading this page suggests to me their tinnitus for today at least isn’t so intrusive that they are unable to function, for that I’m pleased because this is something positive, instead of lying in bed on medication doing nothing. If you are able to work that’s even better as your tinnitus isn’t so severe you’re incapacitated. I see this as something positive in a person’s life. Being able to earn a living and support yourself. Therefore, you’re able to do all the daily tasks one needs to survive in this world. You may have some difficulty granted, but you’re still achieving and that's progress.

      It is still better than someone that is visually impaired or severely disabled and unable to earn a living. Or, people with severe tinnitus that are depressed and on medication and unable to work. So by looking at our own circumstances and seeing what we’re able to do and achieve we can think more positively about ourselves. There is nothing more satisfying than being independent and I suggest you hold onto those thoughts.

      If you live by yourself consider getting a cat or a dog so your home environment won’t feel so lonely. If you have a partner and family think about spending some quality time with them, as this can help reinforce your sense of belonging, and the love that binds you together, then your T won’t make you feel so isolated. Sometimes opening up sharing your thoughts and how you feel can help immensely and keep negativity at bay.

      I have just given a synopsis of what I believe can help a person’s quality of life improve with positive thinking. It doesn’t happen overnight but a lot can be achieved when one is prepared to try. By moving forwards and taking one day at a time you can occasionally look back and see how far you have come.

      Michael
       
    25. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      I am pleased for you Zug that you're making progress with CBT. Your positive outlook is a good sign the treatment will be a success.
      Best of luck
      Michael
       
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    26. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
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    27. Alue

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      I may do TRT in the future. I'm waiting to see if WC will pay for it. Like @Marlino I'm really skeptical and doubt it will help much for my loud unmaskable tinnitus, but I'm willing to give it a shot.

      I do have a lot of resentment and anger with how I got tinnitus and the whole situation around that, so maybe some sort of therapy would help me let go of that.


      @glynis-harbron How are you doing?
      I'm curious, have you ever looked into Orthokine? It seems like it has the potential to help with Meniere's although it probabably wouldn't completely get rid of the ringing.
       
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    28. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Tom Cnyc
      You are doing the right thing by continuing with the CBT. Tinnitus is a complex condition that can affect a person in many ways when it is intrusive. I say intrusive which is completely different to when a person has it mild and it can easily be ignored. Like many people new to the condition, you have probably mentioned it to family and friends. Their reply might be: “ I’ve had that for years and just ignore it.” Or: “ I only hear mine when it’s quiet”.

      Intrusive tinnitus is a completely different thing and something that many people do not understand unless they have it. You are in the very early days of having tinnitus and it will take time for your brain to habituate to it to the point of ignoring it completely so it doesn’t bother you.

      Tinnitus forums can be good for support; they can also become places where some people use them to vent their frustrations to the world because of what the condition has done to their life. These people are not interested in getting better or seeking help. Therefore, anyone having therapy like: TRT, CBT and mindfulness, has to be careful not to allow others, and their negativity to take hold of them, which can have a detrimental effect on their progress.

      Michael
       
      Last edited: Oct 23, 2016
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    29. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      If you go into a TRT or any tinnitus therapy treatment, with that attitude you won't reach very far. Read my post above: Positivity and Tinnitus. I advise you to print it out and refer to it regularly.
      Michael
      PS: Please remember, try not to mask your tinnitus so that it can't be heard as it will be more difficult to habituate to it. Use sound enrichment and set the sound level slightly below the tinnitus.
       
    30. Mahr
      Tired

      Mahr Member Benefactor

      Location:
      The Netherlands
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      unknown, probably hair cell damage
      That will be my goal just having started with cbt. If that goal can be reached, I would be a happy man..
       
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