Debilitating Hyperacusis and Reactive Tinnitus: Trouble with White Noise from Hearing Aids

Discussion in 'Introduce Yourself' started by SofiaDS, May 6, 2024.

    1. SofiaDS

      SofiaDS Member

      Tinnitus Since:
      Cause of Tinnitus:
      Acoustic trauma and PTSD
      Hello everyone,

      I have a long history of ear issues (otitis and traumatic otoplasty during childhood, things like that).

      I started to feel pain overusing the old Nokia 3100 (2003). After that, I could never touch a cell phone to my ears.

      Then, I had episodes of hyperacusis during a period of depression (2005). I went to a rock concert around that time, which resulted in mild hearing loss and constant tinnitus. The tinnitus was treated with sound generators and an excellent audiologist (2010). I could barely hear it after the treatment.

      Around 2015, I started to get hyperacusis around my mother (lol). She's like a loud radio show that one cannot turn off (true). So, given my background with ear sensitivity, I thought it was more of a physical issue, but in retrospect, I suspect this was a psychosomatic issue. Who knows?

      My father died in 2016. It was a very stressful event for me, and I had a really bad hyperacusis and louder tinnitus episode, which kept me locked up in my room for a few days. It resolved.

      Then, during another stressful time, I worked with a group of people who kept speaking very loudly. After some time, I had to seclude myself in a quiet room to work. This event marks the moment when hyperacusis and tinnitus became a severe issue.

      I went to an ENT who prescribed hearing aids with white noise therapy (with an audiologist). This was a disaster. Long story short, after wearing those hearing aids for about three weeks (we tried different brands in the process), I hurt and felt increasingly anxious because the incoming sound levels were too loud for my LDLs. One morning, I found myself unable to speak aloud, shower, eat a nut, hear digital sounds, etc.

      My MD put me on Bromazepam, which made me feel better for two weeks, but it went downhill again after, worsening as time went by during a few weeks until being homebound. I had to eat alone in my room and whisper to communicate. Many common sounds (a door shutting) would make my tinnitus louder. It would lower a bit during the night but get louder again when I wake up and hear the sound of my sheets. I noticed it would get louder with mind activity, not just sounds.

      I stayed homebound for five months and started to speak again. I managed to go outside with custom 30 dB filtered earplugs and Peltors in hand, just in case I encountered a motorcycle, electrical construction, or yard tools. I started to listen to music again, with a very, very low volume at first.

      I'm 18 months in now; I still feel very disabled and sick of it.

      I've been stuck in my town for all this time. I can't drive for longer than 15 minutes (with earplugs and noise-cancelling headphones). I only take walks in quiet areas and can't stay outside longer than 1h30. My tinnitus gets louder beyond that time spent outside. I have rare social time with friends as I can't bear people's voices. I have to wear earplugs, and the person has to watch their voice level. Otherwise, I get a tinnitus spike. But it's rare when things go well.

      I still can't stand digital sounds and constant motor sounds (such as the fridge). Earplugs are okay, but only for a short bit. I still have to plug my ears when I flush the toilet.

      I also have leaking ears at night. It feels like liquid in the middle ear blocks the Eustachian tube opening. It hurts, and I have to rest my head on the pillow in such a way that it helps drain that liquid out of the ear canal.

      I have to say that a year after the onset (with the hearing aids episode), my anxiety started to drop. I still have lots of anxiety, but I try to manage it with practices such as self-EMDR and things that activate my parasympathetic nervous system. I also feel like hyperacusis has lowered a fair amount. But again, I'm still very disabled. As for the tinnitus, it's not as reactive to sounds as before. I use earplugs to prevent it from getting louder. But it still spikes when I reach my limits, even with earplugs.

      I feel like there is a huge psychosomatic component to all this because I check all the boxes for it (I can develop this if you want). But there is no certainty that my experience of this condition is only about that.

      I am having a spike right now, so I apologize for my depressive tone. I know many people are in much worse situations than I am, and I feel deeply for them. I will definitely give updates if there is any improvement in the future.

      If you ever feel like there is hope for me to one day live a normal life again, or if you'd like to discuss an aspect of what I've described, please feel free to do so. Thank you for reading.
      • Hug Hug x 5
    2. BuzzBeGone

      BuzzBeGone Member

      Tinnitus Since:
      Cause of Tinnitus:
      Medicine and vaccine
      Sorry to hear what you’re going through. I am going through a similar experience, although caused by medication and then worsened by the vaccine.

      I'm curious about your experience. Did you notice any improvement in your hearing loss after the rock concert? Did your audiogram reflect this change? Did you consider using hearing aids?

      Can you tell me more about why you think this is psychosomatic, and a bit more about your history?

      Do you have any other symptoms or hypersensitivities? What are your doctors saying you should do?
      • Like Like x 1
      • Hug Hug x 1
    3. billie48

      billie48 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      Cause of Tinnitus:
      not sure
      Welcome to Tinnitus Talk. I'm sorry you are suffering much from tinnitus and especially hyperacusis. I hope you can recover or improve on these challenging conditions. If anything, please read my two success stories to give you hope on getting back to living a more normal life as I have done after two separate episodes of severe hyperacusis, becoming deaf in my left ear, and having multi-toned tinnitus 7/24. Try to stay positive and hopeful. God bless.

      From Darkness to Light, How I Recovered from Tinnitus & Hyperacusis

      How to Habituate to SSHL and New Loud Tinnitus
      • Like Like x 2

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