Please Don't Say There's No Cure for Tinnitus

Discussion in 'Support' started by Greg Sacramento, May 2, 2022.

    1. fishbone
      Shitfaced

      fishbone Member Hall of Fame

      Tinnitus Since:
      1988
      Cause of Tinnitus:
      loud noise and very bad sickness
      Maybe try yoga then...
       
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    2. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Have you done some reading up on the forum? From what I read here, reactivity tends to calm down over time. Even loud tinnitus can diminish over time and by time I mean within 3-4 years in severe cases. Unstable to tinnitus is a real curse.
       
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    3. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Exactly, and it's still loud even if you are 50 feet away across the room in the steppers section.

      A gym is a hyperacusis sufferer's worst nightmare, so not sure what some people are talking about having hyperacusis and going to "quiet gyms". What's a quiet gym anyways -- a mattress and a medicine ball? Maybe a home gym can be retrofit to be quiet using plastic weights, etc. Any public gym will have music and that by itself is already pretty loud -- they don't play Chopin Sonatas over the PA.
       
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    4. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Then needless to say you should stay away from gyms, unless its a "quiet" gym. Not sure, maybe Switzerland has some quiet gyms... lol.
       
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    5. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Can you take a picture of yourself with Peltors at the gym? I bet people give you weird ass looks lol.
       
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    6. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      You totally missed my point, which is some people here say they have HYPERACUSIS, when in fact they don't. From what I recollect, what you have is hearing loss.
       
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    7. Marshall

      Marshall Member

      Location:
      ND
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Not sure/virus/noise trauma/cumulative noise damage
      Hahahahaa you bet! Yeah I catch people staring all the time lmao.
       
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    8. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      If you can figure out a way to do what you love with adequate protection then more power to you. I get such horrible pain attacks in my left ear from normal sounds I look like a hearing protection distributor in the house and both cars. Earplugs in the shower, earplugs and ear defenders for driving, dishes, ... but I love recording music. I could not do this for the entire first year but now I can spend a few hours a week in the studio, with foam earplugs in, no headphones, everything tuned very dull, no high frequencies until the very end. My ears tell me when it’s time to quit and I have pain for a few hours with a tinnitus spike but it’s worth it because I love it so much. It’s like I get a few hours of sound “credits” every week so no movies or radio, no stores, limited visiting with friends but as much studio time as I can handle. I have not been to the gym in 30 years so I don’t know how it compares but I broke a glass plate on a tile floor a couple of weeks ago and that was bad news, massive multi day spike but gym plates with full protection... Might work? I have not had the guts to try the woodworking shop though - planers, routers, ... So I understand where both sides are coming from.

      George
       
    9. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      2021
      Cause of Tinnitus:
      Factory noise + Headphones + Clubbing + Vaccine? + Stress
      I have a barbell at home which I use. I was just getting into it again recently before my current setback and I think the loud clinks when reracking were probably too loud. I'll just wear earplugs next time or maybe I'll try to make it all silent.
       
    10. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      2021
      Cause of Tinnitus:
      Factory noise + Headphones + Clubbing + Vaccine? + Stress
      I wish people always specified if they have loudness hyperacusis or pain hyperacusis because they're very different.
       
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    11. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      What are your definitions for both?

      George
       
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    12. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      2021
      Cause of Tinnitus:
      Factory noise + Headphones + Clubbing + Vaccine? + Stress
      I don't think I have loudness hyperacusis but I would define it as noise sounding louder than it actually is. Some people hear distortions too which is different again. There are different types of pain hyperacusis too, some people have instant pain and others have delayed longer lasting pain.
       
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    13. Stacken77
      Wishful

      Stacken77 Member Benefactor Hall of Fame

      Location:
      Sweden
      Tinnitus Since:
      10/2020
      Cause of Tinnitus:
      Noise (likely headphones & cars), Acoustic trauma did me in
      I can relate, @dan. Do you spike equally easily in both ear, or is one ear more fragile than the other?
       
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    14. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      @SmallRonnie And where does noxacusis fit it with these two?

      George
       
    15. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      Noxacusis is the same thing as pain hyperacusis. Just a cooler term.
       
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    16. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      Next question, and I am not tying to be snarky, I am trying to understand how people deal with this and process information.

      Why is it important to have such granular distinctions like pain hyperacusis that is instant vs delayed or loudness hyperacusis that is distorted vs sounds louder than it is?

      Same for dissecting the frequencies and noises and how often they come and go, etc.

      Why is this level of detail important, what purpose does it serve? Why the debates (sometimes heated) on very specific labels? Is it an attempt to assign severity or select only input that is believed to apply to us specifically or I is there some comfort in a very specific diagnosis or label?

      I am asking here in this thread but this stuff comes up a lot in many other threads. I am sure that there is more than one answer to these questions but I would like to understand this better.

      George
       
    17. blamingeverything

      blamingeverything Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      high frequency hearing loss
      I have strong suspicions that heavy deadlifting for more than 15 years contributed to my hearing loss.
       
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    18. blamingeverything

      blamingeverything Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      high frequency hearing loss
      I figure it's the effect of this board being the only outlet left for people to express their struggle. Many posts I read in the voice of "No, you don't get it, my case ..." And I believe them. I also believe that there are people with equally bad cases who react totally differently, it doesn't make any one person's struggle less valid though.

      My heart breaks to read the extreme stories, I know how tough it's been for me and I don't think my case is half as severe as several people here. My wife is tired of hearing about it so I try to keep it to myself, there's nothing she can do after all. Same with my close friends. So the frustration spills over here.
       
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    19. Wrfortiscue
      Cowabunga

      Wrfortiscue Member Benefactor Hall of Fame

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Trauma
      I mean I get it. We are all suffering, some can handle worse cases better than others. What one might label catastrophic, another may feel is moderate at worst. I guess it’s all subjective.
       
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    20. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      I understand venting and sharing like in a support group setting, especially since like you said those who do not suffer may get tired of hearing about it. That's not my personality but its a method of coping for all forms of problems. I still don't understand the micro labels, the extremely granular categories and cataloging. Then asking others to do the same.

      George
       
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    21. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      2021
      Cause of Tinnitus:
      Factory noise + Headphones + Clubbing + Vaccine? + Stress
      The only time I like knowing a distinction in what type of hyperacusis it is, is when someone is talking about when they done something to treat it and it worked. Or if it didn't work too I guess.
       
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    22. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      The reason is a simple but important one.

      When we on the forum give somebody new advice, the wrong advice will make them worse or much much worse and that can result in suicide.

      For example, somebody with pain hyperacusis asks if its OK to take the pain and acclimate themselves to noise that hurts them. If advice is given as for loudness hyperacusis - to gradually introduce louder sounds and build tolerance, that is the WRONG and dangerous advice, because one CANNOT build tolerance to noxacusis (pain hyperacusis). Noxacusis is NOT hyperacusis, but we just made up an easier name for it.

      Noxacusis is like a broken bone, you cannot get it used to take pain to heal. You must put a cast over it and not move it for 6 months. Whereas plain hyperacusis is like soft tissue damage, where after a short rest period, one must do physiotherapy to bring back the range of motion.

      I hope this clarifies it for you.
       
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    23. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      Yes @dan, that distinction makes sense to me and I understand how it helps but some of the other attention to detail is still a mystery to me.

      George
       
    24. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      2021
      Cause of Tinnitus:
      Factory noise + Headphones + Clubbing + Vaccine? + Stress
      This is a really great explanation. Even my therapist told me to just expose myself to noise for my pain hyperacusis. She told me it's all in my head but I do not find it possible to just ignore the pain.

      It's very tricky though. Most of the time you're right, if there's pain, just taking away as much sound as possible is usually the best idea until the pain is gone. Sometimes I can tolerate a little pain without it getting a lot worse but it's a very hard balance to find.

      Eventually my tolerance does go back up again but it can take weeks/months. Then it can go back to square one so easily again too.
       
    25. Ava Lugo
      Dead

      Ava Lugo Member

      Tinnitus Since:
      10/2019
      Cause of Tinnitus:
      Virus
      How long have you had this reactive tinnitus?
       
    26. fishbone
      Shitfaced

      fishbone Member Hall of Fame

      Tinnitus Since:
      1988
      Cause of Tinnitus:
      loud noise and very bad sickness
      I have had this issue for a long time.

      It has gotten a little better in time, but with setbacks I have faced it again and again.

      It never fully went away, but as time passes it does get a little better.

      I feel that over-protection for me just didn't help out.

      I will for sure wear earplugs in areas, that I know will be loud.

      At the same time, my ears/mind needs to hear something else besides my beyond severe tinnitus.

      We are all are different. We have to see what can possibly work for us.
       
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    27. Ava Lugo
      Dead

      Ava Lugo Member

      Tinnitus Since:
      10/2019
      Cause of Tinnitus:
      Virus
      George, I read some of your posts. I need some advice. Have you ever suffered from truly debilitating tinnitus? Like reactive tinnitus that can’t be masked at all and rides on literally on top every external sound you hear?

      I’m asking because reactive tinnitus from what I read (the kind that can’t be masked or nearly impossible to mask by anything) is literally the WORST type of tinnitus you can have. I suffered with this very awful condition for almost 3 years. I am 26 and live with my verbally abusive father. He doesn’t suffer from any ear issues at all but he does have something that can be fixed (lucky him) but here I am suffering severe unmaskable reactive tinnitus.

      I was recovering one day at 23 years old from a cold. That’s when my tinnitus (which I had mild all my life before) became very severe and debilitating. It’s been almost 3 years and I react to pretty much all external sounds. My tinnitus cannot be masked at all because it’ll go as loud as the environment that I’m in. Even when the tinnitus is lowish in a quiet room, the slightest noise will make it ride on top of that noise. Sometimes it’s a little better than other times but it always reacts.

      I don’t know what you mean by the people who are in the 0.1 percent club. I’m assuming you mean people with unmaskable tinnitus? Do you consider yourself in that club? If you have suffered very severe tinnitus that can’t be masked or severe hyperacusis, then how do you personally handle it?

      Severe tinnitus isn’t the only thing I have. I see eye floaters if I move my head or eyes, I can see them inside stores and outside.

      Do you believe finding beauty in life is possible with bad tinnitus, while having other health issues too?
       
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    28. GeorgeLG
      Wishful

      GeorgeLG Member

      Location:
      USA
      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      Leaf blower, rock band, constr & comp shooting, chemo
      @Ava Lugo, I am sorry that you have been suffering from your tinnitus, I hope that I can help or at least answer some of your questions. I am glad that you are searching for the beauty in life. You sound like a decent and kind person. You deserve to be loved, safe, happy and healthy. These are a lot of deep questions.

      First let's talk about tinnitus in general and then the 0.1% club. Tinnitus affects around 15% of the population so that's around a billion people. Most deal with it well enough that it does not have a serious impact to their quality of life. I know five tinnitus sufferers personally, they are all in this group. For many it gets better with time, and can even go away completely. For some it's better with coping skills. For some the removal of irritants like certain drugs or food helps and for some correcting a deficiency like B12 can help. For everyone, the less stressed we are about it and the better we manage our overall health, the better it can be. Hearing protection is also a good tool when used properly.

      So what's the 0.1% club as they call themselves here? Everything in nature has a bell curve and at the tail ends of that curve sits "miracles" and truly devastating cases of all diseases, cases for which their will likely be no relief. This is an extremely small number of people, unlikely to be any one of us in particular. I acknowledge this small population because I have learned that posting can be more productive if you recognize these extreme sufferers and acknowledge that your suggestions cannot help everyone. I come here to help because I believe that the other 99% can find some relief and I have gotten many thank yous and encouragement from people asking me to keep posting here. That is one way that I find beauty in life, being in the service of others. I do not consider myself in the 0.1% club for tinnitus, I will never stop trying to get better and to find the beauty in life. I have two cancers, reactive tinnitus, pain hyperacusis, unspeakable recent loss and many other health problems, including recently depression from my chemo. I find beauty in things almost every day. A few days a month are pretty dark but just a few.

      I don't think that any form of this suffering means no improvement is possible. I can't hear what you hear and I don't know how much you suffer compared to me but: I have reactive tinnitus with many changing tones that cannot be masked. It does not bother me anymore but it was really scary at first. A few nights a month it is so loud after the shower that it takes a couple of hours to fall asleep but that's it. I have pain hyperacusis that kept me out of the music studio for a year while I worked on it. Pain shoots up and down the side of my head, dull and stabbing pain in my ear and jaw, my brain burns like acid. This is my bigger challenge but I recently finished two new songs. My other problems are too long to list. Yesterday was cold packs, hot showers on the joints, Motrin, vitamin D and I got off the floor from my lower back and hip collapse (chemo) and was able to get out and walk in the fresh air and get groceries (curbside) with cold packs shoved down the back of my belt, literally. Last night I stood in the hot shower until the hot water ran out. It only woke me up once last night.

      Your stress level, relationships, noise levels, energy in your life all affect your health and your tinnitus. I encourage you to resolve the stressful things like an abusive family member when you are able to and learn relaxation and stress management techniques. I grew up in a very dysfunctional family with many PTSD style hardships so I understand. I developed OCD and tics at age 10 during these hard family times. Those problems have been left very far behind me now and no longer affect me but they did for a long time.

      How do I cope with it?

      I don't like masking, at least not sound enrichment style. It helps many here so it has its place. I like just the right amount of background noise to not hurt my ears, it keeps my brain from turning up the central gain and make all that noise. So working in the garage with the big door open, walking in the woods, etc. I have gotten pretty good at anticipating the need for hearing protection. The gas station was hammering me. Big street, stop light, big overhead amplifier. I mask up now so when that screaming motorcycle off the light flies past me he is only destroying his hearing. You get the idea.

      I have removed most irritants like sugar, salt, stimulants, certain foods and vitamins, etc. I did some testing and am correcting deficiencies like vitamin D and B12. I eat things that help with inflammation like fish and olive oil. I experiment with the supplements discussed here on a rotation, looking for help.

      I have accepted this, acknowledged that it has happened and I cannot change the past. I did not get screwed by the universe or any one uncaring person to get this. It's just life. We can't wait for the perfect hand, we need to play the hand we are dealt the very best we can. The tinnitus sounds are probably permanent, they will vary all day and I will have some pain attacks. Old experiences with chronic pain taught me that our emotional reaction to this, how we process this, how we deal with it is part of the total package that equals our suffering. The noises and then our reaction. I can do something about the latter so I have worked with techniques like the Back to Silence thread, read books an the brain and pain management and I am also working on my posture because of the link to ear pain. No measuring, monitoring, comparing, labels, hyperfocus. When I get a sound exposure and ear pain I protect up and go do something with a positive outcome and then focus on that accomplishment. Every ear pain episode is now rewarded with a satisfying accomplishment. I visualize what I want, not what I don't want. When my pain was at its worst, I upgraded my music studio and its equipment and sat in there every single day imagining being able to do what I love again. It's harder than it used to be but I am back at it on a limited schedule with new work to be inspired by. When the tinnitus sounds get louder, I get to work, I replace every troubling moment with something positive.

      You have more power over your health and well being than you know. You have more capacity for good days and beauty in your life than you know. Please don't place limitations on yourself with labels, you get to decide what's possible. Millions of people all over the world deal with arthritis, cancer, many forms of health problems that they manage and then go about their lives filled with joy and beauty. Sounds that never go away, sure, big challenge but it can be managed. It can be better. You deserve to be healthy, happy, safe and loved.

      I hope this helps.

      George
       
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    29. AUTHOR
      AUTHOR
      Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      04/2011
      Cause of Tinnitus:
      Syringing + Somatic tinnitus from dental work
      We do experience differently - I guess from being a trauma healthcare worker and crisis counselor - I hate to categorize groups - as that can be a ? to some.

      Older patients often need medications and for pain. With having tinnitus, we need safer medications and safer medications for pain. I'm in so much physical pain and I can't take pain meds. So for me with severe pain, I'm able to flip off my severe tinnitus.

      I do believe:

      “Nothing is so painful to the human mind as a great and sudden change.”
      ― Mary Wollstonecraft Shelley

      Love you @fishbone.
       
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    30. MindOverMatter

      MindOverMatter Member

      Location:
      Norway
      Tinnitus Since:
      2004/05
      Cause of Tinnitus:
      Unknown (possibly stress related, and later sound induced)
      I disagree with a lot of what you claim here. I do agree that most gyms aren't quite at all, and it's challenging for someone with hyperacusis to go there. The gym I go to, which I couldn't bear for a long time after onset of hyperacusis, is not that loud from time to time though.

      After being able to go to the gym again, there are certain areas of the gym which are more annoying than others. And they do irritate my ears, but my response towards it is better as I don't fear worsening in these situations anymore. And the more I go, the more comfortable around those noises I feel. But there are ups and downs, and some days I'm more annoyed.

      So yes, you can go to the gym and still have hyperacusis. Treadmills bother me, but with gradual exposure I've slowly managed to let it bother me less and less. If I tune in on it, it gets worse. A lot of music in the gym bothers med. But again, if I'm 100% focused on my workout, I don't react to it. Most of the time.

      Hyperacusis comes in many variants, and is, for most, treatable. It does get better, over time - with gradual sound exposure - for most. I don't expect to be 100% healed, but I can still have a fulfilling life.

      ...and btw, my tinnitus is not loud and stable either. I've had tinnitus for nearly 20 years, it's always with me, and for the last 3-4 years very fluctuating (in addition to my stable tinnitus tone for the last 2 decades).
       
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