Suicidal

Discussion in 'Support' started by jeremy06, Oct 14, 2018.

    1. Bartoli

      Bartoli Member

      Tinnitus Since:
      2009,worsened 2019
      Cause of Tinnitus:
      Noise
      You raise some very good points. To be clear on the matter, I'm not a staunch defender of psychological treatments but they probably don't deserve the hate they're getting. I agree no further money needs to be spent on the research of CBT effectiveness, but it's good to have something to last some of us while the cure is hopefully in the making.

      As for self-guided CBT, I don't know if everyone can do that. As you say one requires the discipline and people that are suffering from debilitating tinnitus probably need extra help.

      As for the actual practice of CBT eating away at the research budget, I can only hope the government gets the memo that it can cut its losses by funding An actual cure. People have been saying for years the American Army is paying loads of money to vets with tinnitus, and it can stop paying out 10% disability once a cure is found, but honestly I don't see much initiative from that corner.
       
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    2. HootOwl

      HootOwl Member Podcast Patron Benefactor Advocate

      Location:
      California
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Explanation in About You
      The problem is for a lot of us there is no “global” or “bigger” picture. Our mental distress is a direct result of the physical/biological damage. Once the damage is repaired or the symptoms alleviated the mental despair evaporates.

      Let me share a personal example. About 4 years ago my friends girlfriend thought it would be oh so hilarious to squeeze my left hand very hard, which left me with soft tissue and nerve damage in the thumb joint.

      This caused me to have horrible, searing pain radiating upwards from my fingers and wrist at all times. Every half second there it would be, zapping away. I tried a splint and after every doctor I saw said there was no underlying damage so I said fuck it, and tried to live with it.

      It was honestly (outside of what I’m experiencing now) one of the worst years of my life. I had no reprieve - the pain was searing when I drove to work, when I was watching movies on my laptop, and especially at night when trying to sleep. I couldn’t even turn a doorknob with that hand it hurt so bad.

      After a year of this I was at the point where I was seriously considering just going on painkillers for the rest of my life. No amount of CBT or distraction could stop me from being utterly exhausted by the pain, and believe me I tried.

      Then I hit a lucky break. One morning I woke up and the pain was a little less. Then a month went by and it was about a quarter less. And a few more months and it was down by half. Suddenly I could sleep again, and watch movies, and drive without the shooting pain!

      I cannot overstate how my quality of life started to improve drastically, and the improvement was directly proportional to how much the pain was diminishing.

      After about another 6 months, the pain was gone and hasn’t returned (unless I overuse the thumb but I try to be very careful about it) and all I’m left with is kind of an odd “heaviness” in the joint that is annoying, but perfectly liveable.

      If a “narrow” picture researcher had said, hey we have this pill that can save you that year and half of hell I would have taken it in a heartbeat. I don’t need that researcher to care about my mental state or get bogged down by a bigger picture. I also don’t need psychiatry to explain to me what I already know - ie: I feel pretty damn terrible when I’m in pain and I should try to cope as best I can because what else can you do?

      I’m happy that in the biomedical sciences they’re focusing on the underlying damage, because ultimately that’s what needs fixing for many of us suffering from all sorts of chronic conditions, pain or otherwise.
       
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    3. Zugzug

      Zugzug Member Benefactor

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Unknown; Likely autoimmune; Certainly not noise-induced
      Maybe I am naive or optimistic about this, but I actually think chronic illness sufferers would do more CBT if they felt like the actual problem was being talked about correctly and it was truly out of their hands.

      As someone who has done it, a massive part of mindfulness is "letting the problem be." There is an absurd amount of medical privilege that goes into this saying. I can honestly say, and it's been a year with debilitating hyperacusis, the research that I have done on my own medical problem has helped me. There are supplements that I take, and in amounts I have researched, that have aided some of my recovery periods. None of this would be possible if I didn't critically think about my problem and try to solve it.

      This is not the same as OCD, where the brain is telling you to double check that you washed your hands thoroughly enough, and the correct treatment is to let this thought sit, endure the anxiety, and not act upon it.
       
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    4. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Moral to story, never let anybody touch you with any sort of force, for fun or experimentation.
      When I was 18, I got dehydrated and got a bad headache, my acquaintance offered to relieve my pain by pressing hard on my temples. Next day I developed the non stop shooting pain there, that lasted a year.
       
    5. ThomasC
      Lonely

      ThomasC Member Benefactor

      Location:
      France
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      hearing loss
      Lenire is different than TRT. I guess it doesn't work for many people because of the settings. There is a large range of values for the signal timing. If you have some skills in programming and in computer engineering, you could design your own device and find the right calibration.
      Or more safely, waiting for other bimodal and electrical devices. We shouldn't just focus on regenerative drugs.
       
    6. HootOwl

      HootOwl Member Podcast Patron Benefactor Advocate

      Location:
      California
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Explanation in About You
      Believe me, I had no idea that’s what she’d do. It was supposed to be a handshake and only lasted probably 2-3 seconds and I was already saying “LET GO THAT HURTS” about a second in and trying to get her hand off me while she laughed.

      I’m sorry about your experience, and completely agree. You never know how things can wrong instantly. But I’m glad it went away for you as well.
       
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    7. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      Tell the VA and NIH that.
       
    8. Bartoli

      Bartoli Member

      Tinnitus Since:
      2009,worsened 2019
      Cause of Tinnitus:
      Noise
      If a bunch of boffins can't get it right every single time, I'm not having a go at it myself. Too afraid to make it worse. But I agree, don't write off neuromodulation just yet. Even magnetical and electrical stimulation still hold potential with different sites of stimulation and settings...
       
    9. Bartoli

      Bartoli Member

      Tinnitus Since:
      2009,worsened 2019
      Cause of Tinnitus:
      Noise
      Are you?
       
    10. bobvann
      Fiendish

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      E drums headphones
      A mean beeaatch never met any of those in my life:cautious::dunno::huganimation:
       
    11. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      In most areas of business consumers vote with their money, companies give surveys, and consumers influence the market just by buying things.

      In medicine it's nothing like that. The Academics World™ doesn't do anything unless Governments pay them to do. I don't think there is a proper way to voice feed back for disease advocacy. Until something like that becomes simple or straight forward, very little serious progress will be made. It's just recently that the NIH is taking patient advocacy a bit more seriously. It's just way to late.

      If this happened three decades ago the biological sciences would have been much more advance. Previously generations did NOTHING. That's why we are in this mess. We are not the first generation of complainers. We are just a grass roots.

      What Joyce and Bryan are doing is a strong step in the right direction, what the visual snow community and chronic fatigue syndrome community are doing is strong steps in the right direction. But some health problems have non of this. They don't have grass roots movements or anything.
       
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    12. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      Because my tinnitus is TOO LOUD. I think those who say that don't have loud tinnitus.
       
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    13. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      I just want to thank the people who "liked" my posts. I was just trying to explain how bad it is for me even though it's pointless. I can't explain it in words.

      I don't know how anyone can deal with tinnitus that is so loud, it's like an external noise of tones that never stops. Actually, I have fluctuation of 8/10 (severity) and 11/10 ( right now).

      It's frequency 10/10 when I want to sleep lately and I don't know why. I read that you don't get into a deep sleep when you have (severe?) tinnitus. They're so right. That's another major negative and part of the suffering many people don't consider. I am tired of people telling me I "didn't take advice" as if they know what my tinnitus is like and what I should be able to do. I am not dead yet. What more do you want?
       
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    14. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Are you saying you don't perceive it in your ears/head???
       
    15. PeteJ
      Depressed

      PeteJ Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      acoustic trauma?
      I do. It's just so loud, it's as if it's so loud, it sounds like it's external too but obviously, I am the only one who hears it.

      There are some musicians and audio engineers here who could probably describe it better than I can. I am pretty sure there's more than one tone. I can distinguish between them. But, they blend in together still. The pitch is really high with all of them. It's torture.
       
    16. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Externally you mean like somewhere in the room around you?
      Never heard of that one, but it sounds much better... can you just imagine it's a fridge or some appliance nearby?
       
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    17. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
    18. Kriszti

      Kriszti Member

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      I never understood this. How can anyone imagine that, when we absolutely know the difference between a kitchen appliance nearby and tinnitus is that the outside noise is going to stop, or we are in control of switching it off when we want to, not everpresent as tinnitus. I really don't have a big enough imagination.

      Also, Pete says his sounds are very loud. I don't have severe tinnitus, but I had earlier, which was like sitting right next to a loud washing machine all the time. If I pretended that it was a real WM, still wouldn't have made it easier coping with the sound.
       
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    19. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      I'm not sure tbh, I just can say the theory of it, of how habituation works.

      So you convince yourself for 1 minute per day, then in a week 5 minutes per day, then in 6 months your brain is trained for couple hours, then eventually in 2-4 years the brain stops freaking out altogether.

      This is of course that tinnitus doesn't worsen.

      Idk, maybe I'm full of shit about it, but I can say with good probability that "external" tinnitus is better than internal (ear piercing, head zapping tinnitus).
      And so, he can work with that...
      OR, maybe I'm being presumptuous and because in 9 years of suffering I've never read a case as his.
       
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    20. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      A washing machine was not what I meant. I was thinking a fridge or a fan, etc.

      So how loud is your tinnitus now?

      A washing machine is what like 70dB at 2 feet away? Did you go from 70dB to 10dB? If so that's quite an improvement.
       
    21. Kriszti

      Kriszti Member

      Tinnitus Since:
      2016/2017/2019
      Cause of Tinnitus:
      Unknown
      Mine is probably an unusual case, because that low frequency, unilateral tinnitus went completely away. I had it from 2016, every year (except 2018) for 1-3 weeks, so chances are that it will rear its ugly head back sometimes in the future. But this time, last fall, this completely ruined me. Earlier it was never this loud, and I could sleep. Now I couldn't. I was awake 23 hours a day, couldn't sleep, couldn't drink, I was suicidal all the time. And when it stopped, like 2 days later the bilateral UHF tinnitus started. This doesn't seem to be going away, I've had it for almost 8 months. I would say it's mild to moderate, but very shrill, and very reactive. I'm still in panic mode because I'm very aware of how it is to have a severely loud sound and I am not strong enough to cope with it. So all my respect to the severe sufferers.
       
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    22. Zugzug

      Zugzug Member Benefactor

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Unknown; Likely autoimmune; Certainly not noise-induced
      lol this isn't even correct CBT advice. The theory behind CBT is to train the mind to get slightly bored with the stimulus by repeatedly dealing with it for what it is. By telling yourself something like, "oh it's not really that bad, it's like my refrigerator!", the message you are actually sending to your brain is that you can't handle the sound as is and need it to be an innocuous sound. This is called a compulsion, and will actually make it more intrusive. You will feel at ease for a few minutes and quickly come to the realization that the sound is not like a refrigerator.

      A true habituation treatment would be exposure response prevention: do what you normally would and allow yourself to struggle, without giving the thoughts value or attention.
       
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    23. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      All due respect, I was giving TRT advice, not CBT.

      You do have a good point though and I think after initially applying TRT, to calm the nerves, then CBT can be applied as like you said.

      But I gave advice exactly what you'd hear speaking to Dr. Jastreboff, whereby the patient initially reclassifies the offending sound into a more innocuous one...

      TRT first 2 steps:
      1. Demystification
      2. Reclassification

      Read the model for all steps...

      Edit: you can't "deal with it for what it is", if it elicits an aversive response.
      I mean you could, but, you can take a shortcut.
       
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    24. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Jastreboff really isn't the best source of information when it comes to treating tinnitus. (at least imo) :D But I agree that this is how we would treat it and try to help someone.
       
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    25. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      omalowmgrn541.jpg
       
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    26. Zugzug

      Zugzug Member Benefactor

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Unknown; Likely autoimmune; Certainly not noise-induced
      That's so infantalizing over something so simple, I wouldn't have even thought of it. No one thinks tinnitus is harmful. It's a sound made in the brain that has varying levels of pitch, volume, and intrusiveness. People are concerned about what it does to their mental well-being -- being annoyed constantly and all.

      You can't demystify it because no one knows exactly what it is. At least CBT is a real science, which is truly great for low levels of tinnitus and with nonnegative benefit for higher levels.

      I can't understand how one can get high on themselves as a tinnitus expert. There are none.
       
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    27. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      I agree with you and he made a fortune for stating the obvious.
      But its all we got right now...sigh.
      Reclassification Lol
       
    28. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
    29. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      I'm really glad that Dr. Ben guy gives us an inside perspective on the clinical world's delusion. You guys get to learn about the system from the inside. They mean well, but they subscribe to so much dogma.

      A good goal would be to separate CBT from TRT as they are not the same thing. I find it weird how they get tied together.
       
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    30. Zugzug

      Zugzug Member Benefactor

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Unknown; Likely autoimmune; Certainly not noise-induced
      No. My opinions on TRT are nuanced. I know how hard it is to make progress on intellectual discoveries. I actually love that Jastreboff was pursuing neural plasticity, as I think this is a totally reasonable scientific method.

      Where my blood starts to boil is watching this
      Pawel Jastreboff on Tinnitus Retraining...
      .

      There are several things he says here that are flat out lies.

      1) TRT is great because it helps regardless of etiology.

      Baloney. If that's the case, why did my TRT doctor ditch me when it wasn't working? Jastreboff would hate me because I have a chronic illness that contradicts all of his world views.

      2) ~5% of sufferers cannot be helped by TRT

      Even that 5% number is pseudoscience. What he really means is 95+% of people who develop tinnitus learn to habituate and happened to be doing TRT. This is completely expected.

      3) There are two reasons why people don't get better. The one is they are faking it for attention and they "don't want to get better with the right mindset." The other is that they have financial incentive.

      Imagine being so brazen as to thinking that's all there is to it.

      4) Him saying we "basically already have a cure."

      Fuck him. If this is the case, why did my TRT doctor say that there's nothing he can do for me?

      In short,

      What would make me like TRT: People giving an honest look at neural plasticity and its implications in hearing disorders. There's nothing wrong with this, and I have a strong interest in it myself.

      Why I don't like TRT: It's an excuse to blame the victim when they don't improve.
       
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