Warning for People with Noxacusis: For the Love of God, Protect Your Ears!

Discussion in 'Support' started by Brian Newman, Oct 11, 2021.

    1. ZFire
      Tired

      ZFire Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      2012 (mild) & 04/2021 (severe)
      Cause of Tinnitus:
      Ototoxicity (2012) Unknown-likely noise induce (2021)
      Hi. I had a period last year where my tinnitus spiraled out of control. I had progressive and constant tinnitus worsening from May 2021 to the end of August 2021. It seemed to have plateaued and slowly stabilized from there on after, although spikes can still sometimes happen. I lost count of how many tones/noise I accumulated during that worsening period, but many have slowly disappeared (still have quite a few). Tinnitus is variable. Familiar tones come and go as they please. The volume varies, currently ranges from moderate (high end) to very severe. Sometimes masking works, most of the time it doesn’t. Adequate masking will depend on how perceptible the reactivity will be for the day. I have the instant kind.

      I should point out I also had debilitating loudness hyperacusis, palinacousis, and distortions/dysacusis too. Loudness hyperacusis has improved dramatically, palinacousis seems to be non existent, and distortions come and go (less frequent now or not noticing as much). I was spiking to trivial sounds too during the worsening phase, but not anymore. The reactivity is still a bitch though. Still hoping it eases up at some point.

      With all this said, I feel like I’m in a much better place now. Tinnitus gave me the ass whopping of a lifetime, that’s for sure, but I did improved significantly in other concerning areas. I’ll take any victories where I can.

      Maybe I’m wired to handle this chaotic mayhem better than others, but give yourself a chance to see how your ears will fare in 2 years. You probably at some point will have to come to terms that your tinnitus is likely not going back to the way it was before. That doesn’t have to mean your life is necessarily over though. Adjustments will have to be made in your life. Be patient and wait for stabilization along with your symptoms improving in some manner to happen. And then let habituation do its thing. Always protect if you’re unsure and avoid disgusting noise.

      You’re currently in a category 5 hurricane. Weather it as best as you can and let it run its course.
       
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    2. tpj
      Torn

      tpj Member Benefactor

      Tinnitus Since:
      08/2008
      Cause of Tinnitus:
      probably noise
      Hi @ZFire, how did you improve? Was it avoiding noise or something else you did?
       
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    3. Theezy

      Theezy Member Benefactor

      Tinnitus Since:
      11/2014
      Cause of Tinnitus:
      Concert/Rave?
      Thank you so much for the reply, I truly appreciate it. I actually had a few really good (relative to how I was doing) days up until this morning where it’s suddenly MUCH worse and louder than ever... again. This is so challenging right now and it helps to hear someone who has made it through a similar situation. I try to find a balance between noise exposure and silence but the noise setbacks are so unforgiving. What kind of balance did you store between exposure and protection?
       
    4. ZFire
      Tired

      ZFire Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      2012 (mild) & 04/2021 (severe)
      Cause of Tinnitus:
      Ototoxicity (2012) Unknown-likely noise induce (2021)
      Nothing out of the ordinary really. Stayed home mostly. I avoided loud noise by limiting any outdoor city noise exposure during the daylight. But I ultimately think time was the major factor here with some slow gradual sound therapy (for treating hyperacusis) later on. I should mention I still took a lot of hits from noise throughout this whole thing. There was certainly a non-linear aspect of improvement for me.

      If I recalled, one day in October, I just noticed my hyperacusis improved randomly out of nowhere. I was still sensitive, but I was able to initiate some slow gradual sound therapy. It was during the sound therapy where I realized I wasn’t spiking to trivial shit anymore. The improvements in sensitivity and sound tolerance coincided with having less frequent tinnitus spikes. That’s what it seemed like to me.
      So yeah about this, I eventually decided at some point to reduce the hearing protection as much as possible in the house. In the kitchen or bathroom, I was wearing protection a lot, but overtime I weaned off it as I was getting better. In terms of sound exposure, I searched for things that were soothing to my ears or wasn’t bothersome to me. It could be soft music, a podcast or my water faucet running at low pressure. I would also balance the exposure with some silence too. If my ears felt fatigued, I would find somewhere quiet in my apartment and rest up. It was a balancing act of sound exposure in the house and taking in some silence. I always protected when I go outdoors, but I wasn’t going out too much anyway. Now I am.

      This whole thing is indeed challenging. But don’t give out. If I may boost your morale a bit more here. I live in NYC and my apartment is next to a major hospital. I thought I was a goner and a lost cause due my location, but I still improved despite that. If I can improve under these circumstances, then why can’t you? It’s a long process but I’m sure you’ll get there. Most people do.
       
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    5. Benjaminbb

      Benjaminbb Member

      Tinnitus Since:
      Nov 2020
      Cause of Tinnitus:
      Likely long term noise exposure, combined w pandemic stress
      Lovely to hear about your recovery. A few questions. Was it both ears for you? Do you have any hearing loss? If so, how much? Finally, did you do your own sound therapy or use sound generators?

      Thanks.
       
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    6. ZFire
      Tired

      ZFire Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      2012 (mild) & 04/2021 (severe)
      Cause of Tinnitus:
      Ototoxicity (2012) Unknown-likely noise induce (2021)
      Yes both ears. More so in my left.
      No measured hearing loss from my audiograms. Still though, I do feel like I have hearing loss despite my perfect audiograms. Maybe I have hidden hearing loss. I have trouble hearing other things when I’m chewing crunchy foods. Sometimes, I have trouble distinguishing which directions sounds are coming from.
      No sound generators. I did it myself.
       
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    7. Benjaminbb

      Benjaminbb Member

      Tinnitus Since:
      Nov 2020
      Cause of Tinnitus:
      Likely long term noise exposure, combined w pandemic stress
      What did you use to do it yourself?
       
    8. ZFire
      Tired

      ZFire Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      2012 (mild) & 04/2021 (severe)
      Cause of Tinnitus:
      Ototoxicity (2012) Unknown-likely noise induce (2021)
      I started with a water faucet in my bathroom. Then listening to outside city ambience sounds very late at night by my window (opened), some very soft music, and podcasts. Eventually, I made it my goal to take in as much sounds (mostly comforting ones) as I could in the house. I structured it with time limits and listening durations.

      I go a little more depth here if you’re interested.
       
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    9. May86

      May86 Member

      Tinnitus Since:
      10/2022
      Cause of Tinnitus:
      Untreated ear infection
      Hello Brian, I'm trying to understand your earmuff situation with your Xbox controller. Is the controller vibrating and the vibration is passing through your body, aggravating your ear? I always wondered if you could turn off controller vibrations in the gaming systems preferences? I'm only familiar with PS2 and on back, I don't know what these newer gaming systems have. I thought for a moment you were talking about the pain of wearing earmuffs over your ears to hear the Xbox game and I was going to recommend bone conducting headphones.

      I'm seeing a lot of hope in this thread. My ear right now kinda feels burning but it's also the sound of a TV at times. I'm hoping by getting off the 3+ ototoxic medications will help with healing over time. Since then, I've heard fireworks outside and such while I'm in the house, but my ears are sensitive to glass plates when I try to wash them and they hit the ceramic-looking sink or the plates fall over and clack each other. I'm considering investing in wooden plates and bowls for the time being in the house and getting a quiet toilet seat cover. In due time, I can't fix all this at once, but little by little, I figure progress in eliminating the noises best I can in the house would be good for starters.

      I truly appreciate your input on the Ebselen. I really hope that helps so many people with tinnitus. I might look into this myself, but wonder if it's best to wait and see if the tinnitus will go away on its own.

      I honestly am at a loss on how to help my ears. I've considered getting a pillow with speakers in them to listen to sounds in my right ear. I can't listen to music far away while trying to sleep anymore when I just used it to only relax me, pre the current tinnitus. So, I'm going to try the bone conducting headphones in the day if I can. But unsure about the pillows, because if you buy the pillow online and it's defective, you can't return it. :(

      Thank you all for this particular thread. I don't know if the burning right ear with tinnitus is permanent or not, but I'm hoping by eliminating the ototoxic medications recently, my right ear has a fighting chance to heal. Take care. <3
       
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    10. ZFire
      Tired

      ZFire Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      2012 (mild) & 04/2021 (severe)
      Cause of Tinnitus:
      Ototoxicity (2012) Unknown-likely noise induce (2021)
      Yes, the latest Xbox consoles (Series X/S ) and also the PlayStation 5 give you the option to turn off vibrations/rumble/haptic feedback features. Here’s a tutorial on how to disable vibration on the Xbox controller.

      You can also disable the vibrations on PS4’s and PS5’s controller too. Pretty straight forward. Go to system settings and look for the accessories tab.
       
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    11. Joe Cuber
      Curious

      Joe Cuber Member Podcast Patron Benefactor

      Location:
      California, USA
      Tinnitus Since:
      03/2022
      Cause of Tinnitus:
      Gradual hearing loss + a huge amount of stress
      There are also pillow speakers that you can insert into an existing pillow, have you considered those?

      Oh, and for toilet seat covers, I have these slow-close toilet seat covers that slowly close, so they never bang down when you close them.
       
    12. volterra
      Wtf

      volterra Member

      Location:
      London, UK
      Tinnitus Since:
      08/2022
      Cause of Tinnitus:
      Noise from Music Festival
      I'm pretty sure Brian means the actual sounds of the plastic buttons. Obviously you can turn off the vibrations and the sounds of the game.
       
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    13. May86

      May86 Member

      Tinnitus Since:
      10/2022
      Cause of Tinnitus:
      Untreated ear infection
      I didn't know speakers for pillows actually existed. I'll try to see if Amazon sells them soon. *O*

      As for the toilet seat covers, can you only find those on Amazon too? I had no luck finding anything like that at Walmart. :(

      Thank you for all your help! :D
       
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    14. May86

      May86 Member

      Tinnitus Since:
      10/2022
      Cause of Tinnitus:
      Untreated ear infection
      I wouldn't know a lot about this stuff, being out of loop on what the current game consoles have made accommodations for in terms of customer service. I'm old school, so I didn't know what Xbox controller Brian was using and how it was causing him issues. If it's the buttons, then that would make sense about the earmuffs. Thank you for the clarification.
       
    15. Joe Cuber
      Curious

      Joe Cuber Member Podcast Patron Benefactor

      Location:
      California, USA
      Tinnitus Since:
      03/2022
      Cause of Tinnitus:
      Gradual hearing loss + a huge amount of stress
      Sure thing @May86 :) I think you're more likely to find those toilet seat covers at Home Depot.
       
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    16. AUTHOR
      AUTHOR
      Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Hey May, yeah, I turn off the vibration. It’s the sound of the buttons. When you have severe hyperacusis, earplugs don’t do a whole lot so sound goes right through. Seems to be an issue for many severe hyperacusis sufferers. The sound of the buttons and sticks does cause pain in my ears.

      It takes a lot of somebody with this as bad as I do to admit most people with this will improve. Just be good to your ears and listen to your body. I kept getting worse because I would test the decibel level and say oh, it’s under 70 dB, it can’t make me worse --- even though it was causing pain. Anything you read about all that is crap. Audiologists and doctors like to mash every patient together and say everything is the same for everyone and we all know that’s crap. Some people can do things others can’t. Some things may hurt your ears but not mine and so on. Do not base anything off what other people say and listen to your body instead. That’s the most important thing. Wish I had figured that out earlier. I wouldn’t be this bad. So sit tight and get off the meds and let your ears settle.

      Ebselen is the drug I understand the least but it could possibly help, especially if it’s helping with inflammation. Inflammation plays a big role in all of this. Many of us will definitely try it when it comes out.
       
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    17. May86

      May86 Member

      Tinnitus Since:
      10/2022
      Cause of Tinnitus:
      Untreated ear infection
      I''ll check them out sometime soon, because I didn't think to check them out. I appreciate your help! *O*
       
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    18. Moni97

      Moni97 Member

      Location:
      Midwest United States
      Tinnitus Since:
      Whole life?
      Cause of Tinnitus:
      Unknown
      Hi Guys, I’m a little confused and pretty freaked out. I went to a big NYE party at a event, lots of people, DJ, the works.

      On January 3, I woke up with intense hyperacusis. Everything was uncomfortably loud. I didn’t know what was going on, I started googling and found the term hyperacusis. And I realized, reading the symptoms, I have been experiencing slight hyperacusis for almost two months maybe. I was hearing sound clearer than other people or sounds they didn’t hear at all. I just kind of shrugged about it then. My health isn’t so great so I just tend to wait things out till I see my doctor.

      The first few days I didn’t do anything but try and push through and avoid very loud sounds. My ears started to feel full after a while of noise and then my ears would get achy/slight burning feeling. I didn’t use ear protection because I read that that can make it worse.

      Then I found this forum. Someone told me to cover my ears and let them rest. I have been doing just that since. I’ve only been without ear protection for more than 3 minutes for two clinic visits and a doctor’s appointment for ear fluid.

      I feel I have only gotten worse. I don’t live in a quiet place. I live in an old up stairs apartment above my half dead landlord who has two barking dogs, my three destructive cats, right next to the expressway. Even with 30-32 dB hearing protection I hear all these things.

      Sounds are so uncomfortable and can be painful. Even the sound of my hand running on my skin is so freaking loud. I noticed that I’m only comfortable with sounds up to 60 dB with protection.

      And today I feel like I hit rock bottom. My partner, who has a low voice, softly said goodbye to me, I had lifted up one side of my earmuffs to hear him and it’s like my ear tensed up in sharp pain. It faded. But it’s still achy and sensitive three hours later. I also noticed today that my own voice above a whisper seems to bother my ears.

      Someone on here heard my original story and said I was unlikely to have severe hyperacusis after one acoustic trauma. But like what exactly is a setback? I’ve heard loud noises since this started that made my ear uncomfortable, were they all setbacks?

      I noticed that around the time my hearing got sensitive was after I started Lyrica for nerve pain. I had just stopped taking it cold turkey around Christmas. Could that be a factor?

      I really don’t understand what’s happening. I have no idea what to do. I have tried to read threads but can’t seem to find anything that sounds like what I’m experiencing. I’m just more scared and feel absolutely hopeful. I also have tinnitus and distortions.

      Sorry for the long rant.
       
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    19. Lane

      Lane Member Hall of Fame

      Tinnitus Since:
      02/2018
      Cause of Tinnitus:
      Single 25 mg dose of (anticholinergic) drug Promethazine
      Hi @Moni97 -- I've been aware of Lyrica being ototoxic for quite some time, so am of the belief that your taking Lyrica could absolutely be a factor.

      I hope things get better for you soon!
       
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