Sound Therapy for Pain Hyperacusis — Can It Work?

Discussion in 'Support' started by serendipity1996, Mar 20, 2020.

    1. serendipity1996
      No Mood

      serendipity1996 Member Podcast Patron Hall of Fame

      Tinnitus Since:
      2011 - T, 2016- H, relapsed 2019
      Cause of Tinnitus:
      noise-induced
      Hi all,

      I've made a fair amount of progress with my hyperacusis since onset 2 months ago - it's not totally gone but sensitivity seems to have died down. However, I'm still experiencing intermittent ear pain - with the sensation of a liquidy/cooling sensation in my ears. This is not provoked by noise and seems to come and go at random - I have days where I'm virtually asymptomatic and others where the pain comes into play. I don't experience any immediate pain from sounds and have few issues with amplification/loudness. Also experience forehead tingling - TTTS?

      So my issue seems to be pain H - delayed/random. But it has improved quite a fair bit over the past month and I am hopeful that it will continue to do so.

      I have been offered 2 treatment options on the NHS - CBT and/or sound therapy. I'm willing to give the CBT a shot but my parents are also encouraging me to try sound therapy. I'm pretty wary of it tbh - I acknowledge that it can be useful for some people but we all know it's probably least effective for pain H. Also especially since my condition does seem to be improving it just feels like too much of a gamble. I obviously don't want to seem pessimistic but idk, my parents are saying I should give it a shot and it just feel like it could backfire.

      I really really don't want to end up backsliding which would also end up having a knock-on effect on my mental health. I've felt pretty grim over the past 2 months tbh and it's only really in the past few weeks that I've felt more optimistic.

      Hope this post doesn't come across as self-indulgent and self-pitying - would just appreciate some advice and words of reason.
       
      • Good Question Good Question x 1
    2. Christopher805

      Christopher805 Member

      Tinnitus Since:
      May 2019
      Cause of Tinnitus:
      Neomycin
      I am really happy you have made progress with your pain hyperacusis. It’s sounds like whatever you are doing is working. I have loudness hyperacusis and underwent TRT with Dr. Jastreboff. It was not a good experience, as the ear level generators were abrasive. Even at the lowest setting my ears felt worse. I stopped after 6 months. I honestly believe my hyperacusis got worse after wearing them. Prior to wearing them my hyperacusis only showed up in the evening. Now, it’s all day. I read a post on Tinnitus Talk where someone attached a study that concluded the treatment for loudness hyperacusis (i.e., TRT) should not be used to treat pain hyperacusis. Again, whatever you are doing is working. It’s a tough call but I am sure you will make the right choice. Be Well.
       
      • Like Like x 1
      • Informative Informative x 1
    3. AUTHOR
      AUTHOR
      serendipity1996
      No Mood

      serendipity1996 Member Podcast Patron Hall of Fame

      Tinnitus Since:
      2011 - T, 2016- H, relapsed 2019
      Cause of Tinnitus:
      noise-induced
      I'm so sorry to hear about your condition worsening. The rationale for TRT for pain hyperacusis just seems rather dubious at best especially given that we are learning more about pain hyperacusis and how it resembles neuropathic pain. Treating sound-induced pain with noise generators just seems kinda akin to... idk telling someone with a burnt hand to stick in back in the fire to 'get used to it' lmao. Also there's the fact that they say it can take up to 18 months - 2 years for treatment to be complete - surely there's an equal likelihood of improving naturally in this time.
       
    4. Zugzug

      Zugzug Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Autoimmune hyperacusis from Sjogren's Syndrome
      My opinion: For loudness hyperacusis, try inexpensive sound therapy, but don't let anyone slam it down your throat if it doesn't work, as this is common. For pain hyperacusis, I very much doubt TRT will help; many report it actually hurts them.
       
      • Like Like x 1
    5. Christopher805

      Christopher805 Member

      Tinnitus Since:
      May 2019
      Cause of Tinnitus:
      Neomycin
      I agree 100% with your analogy. Yes, slapping white noise on your ears for a minimum of 8 hrs a day to treat pain hyperacusis seems barbaric. Trust me it was like standing at the gates of hell. I’ve read a several post where time is the best medicine. Time equates to patience, which as suffers we have very little of. We want relief like yesterday. Why any doctor would think adding more noise to an already compromised auditory system will help pain hyperacusis is beyond me. What I’ve concluded is that they all just guessing, which explains why there is not one consistent and sound approach. I am tired of people gambling with my ears. Now, that I look back on my TRT experience I realize it was a waste of time and money. They sell it like it will make your ring practically unnoticeable and will abate the hyperacusis. Which is not true. I cornered my TRT doc to admit it’s simply an aid to try to make it easier for folks to habituate. He admitted it. What I’ve come to realize over time is just that, time and being smart with exposure are the key. Listen to your body. Our ears will certainly let us know now when they are getting overloaded with sounds. I am doing CBT now. It is ok. Again, I realize no matter what the therapist says it’s all up to us to consistently apply the concepts. Otherwise what’s the point. You sound like you rationally thought this out and I know you will make the right decision. Trust your heart. I went with my moms suggestion to take an antibiotic that I had previously said no way to and it landed me here. She’s fine, I am not. Learn from me. Seems everyone in my family is now. They will never take what I took. Destroyed my life, totally. Caused me to herniate my back disk. After 10 needles in back still in severe pain. All because of listening to others instead of my gut. My gut is what started my horrid journey to tinnitus. Let’s just say I cannot sleep on my stomach or back. Try sleeping with these maladies and ears to boot for the past 10 months with no meds. A real kicker.
       
      • Hug Hug x 2
      • Agree Agree x 1
    6. AUTHOR
      AUTHOR
      serendipity1996
      No Mood

      serendipity1996 Member Podcast Patron Hall of Fame

      Tinnitus Since:
      2011 - T, 2016- H, relapsed 2019
      Cause of Tinnitus:
      noise-induced

      Gosh, that sounds horrible. Sending you nothing but sympathy. To my mind, it looks like they basically devised TRT as a coping mechanism for tinnitus and then just unthinkingly tacked hyperacusis on to it. Thankfully my mum is pretty understanding about it and she says she has her doubts about it too. At least one 'silver lining' to come out of the current corona situation is that it's now socially acceptable for me to stay in and give my ears the proper time to recover.

      Have you been referred to pain management?

      Sounds horrific the pain you're having to endure.
       
      • Like Like x 1
    7. Christopher805

      Christopher805 Member

      Tinnitus Since:
      May 2019
      Cause of Tinnitus:
      Neomycin
      Thank you for your kind words. You and your mom’s doubts are warranted. Yes, the virus has made it socially acceptable to be sequestered in our homes. Yes, pain management was physical therapy and meds. The PT was a joke. The meds partially work but not a fan of meds in general. The pain is threefold. Ears, back and stomach. Prior to tinnitus never spent a night in hospital. Been healthy all my life. Got stressed from helping mom with business issues and got stomach issue, which lead to tinnitus, then bad back. I work 34 years, finally retire, 6 months later get sick. Life for my family has not been the same the past 10 months. I wish you and your family well. Be safe.
       
      • Hug Hug x 1
    8. Juan

      Juan Member Hall of Fame

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      For me sound therapy didn't work. Nothing worked.
       
      • Hug Hug x 1
    9. AUTHOR
      AUTHOR
      serendipity1996
      No Mood

      serendipity1996 Member Podcast Patron Hall of Fame

      Tinnitus Since:
      2011 - T, 2016- H, relapsed 2019
      Cause of Tinnitus:
      noise-induced
      If this doesn't let up I'm contemplating a stellate ganglion block/nerve block with botox at this rate.
       
      • Hug Hug x 1
    10. Juan

      Juan Member Hall of Fame

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      I won't fumble anymore with medication or go to doctors. My hearing is deteriorating fast (losing hearing due to hyperacusis) and no one seems to have a clue why. Years and years of doctors... big waste of time and money.
       
    11. Christopher805

      Christopher805 Member

      Tinnitus Since:
      May 2019
      Cause of Tinnitus:
      Neomycin
      No meds. Do you sleep well without them?
       
      • Hug Hug x 1
    12. Juan

      Juan Member Hall of Fame

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      Yes, I sleep like a baby.
       
      • Like Like x 1
    13. AUTHOR
      AUTHOR
      serendipity1996
      No Mood

      serendipity1996 Member Podcast Patron Hall of Fame

      Tinnitus Since:
      2011 - T, 2016- H, relapsed 2019
      Cause of Tinnitus:
      noise-induced
      So my hyperacusis has all but disappeared - pain has pretty much completely gone away and what symptoms I do get (forehead tingling, slight fullness) are like 10% of what it was before. Literally the only thing that is still a bit of an issue is listening to stuff on my laptop/phone/artificial audio. Bathroom fan, dishes, cutlery, normal environmental sound - no problem anymore but I still have a lingering tightness and discomfort in my ears whenever I listen to stuff on my laptop. It still sounds kinda abrasive and harsh idk. I think I must have some sort of damage at that specific frequency or something... hoping it will pass if I just be patient and give it a bit more time. Trying not to worry about it being permanent - just feel like my case is a bit weird as it is only certain specific sounds that are unpleasant and trigger pain hyperacusis.
       
      • Like Like x 5
      • Friendly Friendly x 2
    14. Christopher805

      Christopher805 Member

      Tinnitus Since:
      May 2019
      Cause of Tinnitus:
      Neomycin
      I am very happy for you. Progress is the best medicine. Continue to improve.
       
      • Friendly Friendly x 2
    15. FrontRoomFanatic
      Dreaming

      FrontRoomFanatic Member

      Tinnitus Since:
      June 2019
      Cause of Tinnitus:
      Noise Damage (Music)
      Hello. Artificial audio for me too. I was previously having issues with cutlery and plates...but those sounds are now tolerable. I’m working from home and been using my laptop for conference calls. Didn’t even think about how it would be a problem as all the Coronavirus stuff moved so fast. Basically moved to a new job temporarily during this and need to learn and do new tasks on the fly at home. So I need silence to concentrate, but the silence is increasing my sensitivity to sound. Which is causing me distress. I feel the longer this goes on my hearing problems will become exacerbated.
       
      • Like Like x 1
      • Hug Hug x 1
    16. Brock WS

      Brock WS Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      Blowing nose/ears popping
      Hi @serendipity1996

      We share several symptoms (TTTS, hyperacusis, tinging in forehead and scalp in reaction to noise, probably more) and I'm looking for some advice. I've had tinnitus and hyperacusis (or reactive tinnitus, dysacusis, whatever you would call sound being distorted) for well over a year but it's seemingly developed into pain hyperacusis over the past few days. I'm suddenly very sensitive to and physically pained by the sounds of people's voices, the doorknob, light switches, dishes, among several other things. Since you say these symptoms have mostly gone away, I'm inquiring about some advice on what you did; did you try sound therapy at all, or sleep in silence, for example? Also, does music sound normal for you currently or is it distorted?

      Any help would be greatly appreciated
      Thanks
       
      • Like Like x 1
      • Hug Hug x 1
      • Funny Funny x 1
    17. AUTHOR
      AUTHOR
      serendipity1996
      No Mood

      serendipity1996 Member Podcast Patron Hall of Fame

      Tinnitus Since:
      2011 - T, 2016- H, relapsed 2019
      Cause of Tinnitus:
      noise-induced
      Hi there.

      Yes my symptoms have mostly subsided although I still get mild episodes of facial pain etc that occurs intermittently. I didn't do sound therapy - in fact, I avoided anything that aggravated it. I had tried listening to pink noise on YouTube but my laptop speakers just made everything worse. That doesn't mean that I spent all day holed up at home wearing earplugs 24/7 but I did try and limit my sound exposure more. There was a time when I would use earplugs when going outside however I haven't done that for a few months.

      I haven't listened to music in a while tbh just because I am being extra cautious and want to wait until my symptoms disappear for good until I do anything to trigger it.

      Everyone's different so you may want to give sound therapy a go, it may help but for me I just tried to give my ears a rest to get over the worst of it.
       
      • Like Like x 1
    18. GoatSheep

      GoatSheep Guest

      I’ve never tried sound therapy really. Whenever I would even try to listen to white or pink noise on my phone or computer my reactive tinnitus would make it unbearable.

      One thing I’m curious about is many people reporting sound makes pain hyperacusis worse, but all the success stories other than one on this page of hyperacusisfocus.org include pain in their description of their problems and also include sound therapy as part of their treatment. Anyone else find that interesting?

      https://hyperacusisfocus.org/hope/
       
    19. Brian Newman

      Brian Newman Member Hall of Fame

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Yeah I find it really interesting. Makes me think was it just severe loudness hyperacusis? I don’t even know. I definitely have heard of people with noxacusis getting better from sound therapy but it’s not as likely as loudness hyperacusis.

      Sound therapy almost knocked out my hyperacusis but my noxacusis got really bad. Everybody’s different.
       
    20. Freerunner

      Freerunner Member

      Tinnitus Since:
      10/2021
      Cause of Tinnitus:
      Caloric test
      @Brian Newman, was your noxacusis caused by the sound therapy? What sound therapy protocol you used? I've had severe hyperacusis for several days - my ears burn all the time and I cannot tolerate any noise.
       
      • Hug Hug x 1
    21. Brian Newman

      Brian Newman Member Hall of Fame

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      No, I got the noxacusis from a car accident but only felt pain from high pitch squeals. I wasn’t careful enough and it evolved and got worse and worse. I used a fan and air purifier as instructed by my audiologist. My loudness hyperacusis was almost gone after 8 weeks of doing it but the pain started coming up in spouts randomly. It probably made the pain worse and then every noise started causing pain. I tried to be as careful as possible.

      Then I lost the ability to go to the grocery store, to drive, to do pretty much anything but sit and play Xbox on mute with earmuffs on. My advice is: you are new to this, it most likely will heal if you let it. Don’t read all the horror stories but you must take them into account because that’s what happens if you’re not careful.

      I don’t take pride in saying this. I am one of the worse cases on the planet. Just lay low in silence as much as you can and avoid sounds that cause pain. Your tolerances should go up eventually again. Silence can heal this condition. It sucks doing nothing all day but trust me it beats constant horrible pain.
       
      • Like Like x 1
      • Hug Hug x 1
    22. Taw

      Taw Member

      Location:
      Europe
      Tinnitus Since:
      Pain hyperacusis since 03/2021
      Cause of Tinnitus:
      Acoustic trauma (drum lessons)
      I feel the same, man. Not sure if worse of the planet, but for sure we are one of the worst cases in the community.

      I don't have too much loudness hyperacusis either (of course I stay below 70-80 dB) but the constant pain is horrible. Even after a good night sleep in silence, when I wake up from bed, the pain starts immediately without doing anything. There aren't many like us, people having constant pain even in silence...
       
      • Agree Agree x 1
    23. Brian Newman

      Brian Newman Member Hall of Fame

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      I know there’s definitely people who are worse than me for sure. But I know if I stay in bed and don’t do more I’m ok lol. As soon as I start doing stuff, it comes back. Like wtf.
       
    24. Taw

      Taw Member

      Location:
      Europe
      Tinnitus Since:
      Pain hyperacusis since 03/2021
      Cause of Tinnitus:
      Acoustic trauma (drum lessons)
      I see, I have a lot of delayed unpredictable pain, so sometimes I have pain if I do nothing and sometimes I do stuff and no pain.

      Today when just sitting at the PC, I had 2 hours of horrible pain, then I went to lunch, did some noise (washing dishes, etc) and after eating, the pain was like 20%. It's truly random for me.
       
    25. Brian Newman

      Brian Newman Member Hall of Fame

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Me too man! Like wtf. My delayed reactions don’t take as long. But sometimes stuff hurts, other times it doesn’t. Seriously makes no sense. But anything over 60 dB will definitely cause me instant pain.
       
Loading...

Share This Page