Tinnitus & Hyperacusis
Posted by Higgsy45@reddit | GenX | View on Reddit | 19 comments
I'm 51 and with some severe hearing loss In one ear at the high frequencies. Had mild tinnitus since 40, that turned severe, reacts to external sound in real time, and I gained hyperacusis in 2022
it's been the biggest challenge I've ever faced since it got worst.
I also started volunteering for Tinnitus Quest in 2024, and I'm on the patient board, so I have good knowledge of the condition, research and developing treatments.
How many other people in this generation have this in severe form, and how do you frame it?
notapplicable2022@reddit
I’ve had what I would characterize as moderate tinnitus without hearing loss in both ears since I was a young teen. (Damage from a single concert) It’s pretty variable and sound reactive. Sometimes it will get very loud in one ear for a minute or so before fading back to baseline. I’m dreading the day when it doesn’t reset. It was a long period of adjustment. But I wear ear plugs to shows now.
Higgsy45@reddit (OP)
Yes, I find the sound reactive component the most disabling. Boiling the kettle sets it ballistic
fiddlenutz@reddit
This is the same frequency of mine. I can’t hear this but can feel the pressure.
https://youtu.be/8RDRnMx5uIo?si=sfdhMFCeC2ZXpTXX
DoookieMaxx@reddit
My right ear sounds like Alvin & the Chipmunks talking to me thru a garden hose.
Left ear is running at about 45%. Constant ringing in both ears.
Joked with my Doc that I fantasize about shoving a pencil in my ear to end the noise madness. He said that if I did that I wouldn’t hear anything but the ringing. It’s nerve damage .
At this point I’m looking to start taking ASL classes.
One_Local5586@reddit
I have a little tinnitus, I think, it comes and goes. I can’t hear people talk in normal voices but I can hear them whisper. I can’t get an ENT to take me seriously.
The_Fugue@reddit
I've been suffering from both since about 11yo. I had Cholesteatoma which resulted in a radical mastoidectomy. Pleasant it's not.
Silly-Present1664@reddit
Alpha lipoic acid has shown positive results in limited studies for tinnitus improvement. Available on Amazon. I used it for other nerve related issues and it worked for me.
aran_maybe@reddit
My tinnitus is so bad that it’s pretty much all I hear.
Old-Kaleidoscope1874@reddit
I have tinnitus and high-frequency hearing loss. I finally overcame my ego and started wearing hearing aids with a noise cancelling feature. It's really lowered the impact of the tinnitus. It's a constant high pitch tone, not like a ringing for me. It's hard to tell the difference between the effect of the two conditions, but I think the noise keeps me from hearing people's words a lot of times.
Higgsy45@reddit (OP)
That's interesting. So you think the loudness of the tinnitus causes this or the hearing loss?
Old-Kaleidoscope1874@reddit
No, I think it just complicates it. I have both for certain. Sometimes I don't know if I have difficulty with speech discrimination because if the hearing loss or sue to the loudness of the tinnitus.
Ray_The_Engineer@reddit
What brand of hearing aids do you use, if you don't mind? My Jabra aids don't have the noise canceling, and if I come to a point where I want to get a new set, I'd seriously look into it. (I have serious tinnitus)
Old-Kaleidoscope1874@reddit
Phonak, but I'm not sure about the model.
moonwillow60606@reddit
I have fairly severe hearing loss in my right ear (high frequency) with both tinnitus and hyperacusis. It’s all due to SSNHL in 2024.
My left ear is 100% fine.
I have a single hearing aid and it helps but doesn’t eliminate the tinnitus. I have the Widex Moment hearing aid. I’ve also find that white noise, running water sounds, ambient music all help mask the tinnitus and it’s manageable for me now.
I’m very intentional about not saying good ear/ bad ear or assigning negativity to my experience. That helps me cope.
There are 2 really supportive subs I joined. r/hearingloss and r/monohearing. They’ve been a really good resource for me.
Higgsy45@reddit (OP)
Thank you
PahzTakesPhotos@reddit
I've had tinnitus since childhood, possibly since birth. They discovered I was deaf in my right ear when I was four years old- in Head Start, when we did that "raise your hand" to the tone hearing test. After a bunch of tests and scans, it was written in my medical records: "No auditory nerve present" (which, of course, is what they used to call the cochlear nerve). I was born deaf in that ear and it was assumed my other ear was possibly damaged or "impaired" (their language in the early 70s).
As I've aged, obviously my hearing has gotten worse. My tinnitus is louder/more intense. And I have pulsatile tinnitus too.
Just over two years ago, I got hearing aids. It's an Oticon Real 1 Minirite BiCros. When I wear it, the ambient noise usually evens out my tinnitus. It does nothing for the pulsatile tinnitus. I love my hearing aid because overall it has improved my life. The only thing that bothers me is that while wearing it, I can't tell which direction sounds are coming from, so even though I can hear more, I still have to keep my head on a swivel in places like parking lots and grocery stores.
Ray_The_Engineer@reddit
I have what I would characterize as pretty severe tinnitus, at this point. I actually can't remember NOT having it, going back to elementary school. I think I suffered some damage to my ears at an early age that created that situation. Anyway, it's gotten worse, as my hearing has gotten worse. I worked in industrial environments for years before hearing protection become normalized, and I attended way too many heavy metal concerts. Hearing aids help with the hearing loss, don't help at all with the tinnitus. I've mainly trained myself to tune it out, but if a miracle cure came along, I'd pay a fair amount for it. I have no memory of what a truly quiet world is like. All my best to others that suffer from this.
Higgsy45@reddit (OP)
Me too. Well hopefully we can come up with something effective in our venture
bjb8@reddit
I have it, but not sure how severe tinnitus has to be to be considered serious. I only have slight hearing loss but always hear the cicadas buzzing.