Mastodawn

Jude🇵🇸Apr 9

@kaffando I've had it for about 12 years. It really upset my mental equilibrium to begin with but now my brain has adjusted and I don't really notice it. The associated deafness has been more of a problem.

kaffando Apr 9

@sister_ratched

Yep, that's the frustrating thing about it - that fact you have a hearing loss but can hear this crap all the time!! So unfair!

Did yours start because of the hearing loss?

Jude🇵🇸Apr 9

@kaffando No, other way round. There was talk of Mennière's but that wasn't convincing. Mystery.

kaffando Apr 9

@sister_ratched

Oh, that is odd. It's something that doesn't seem to have much in the way of research and very few, if any answers. So frustrating.

Jude🇵🇸Apr 9

@kaffando And surprisingly common.

franklin

Apr 9

@kaffando I've had a high pitched ringing for what seems like my whole adult life, fortunately it's mild enough that I don't notice it most of the time but it's definitely there. I figure it must be pressure related since it comes and goes, but it doesn't pulsate

Funny, reading this post made it rear its head to a faint background, then after a minute or two a fairly loud tone. I'm in a quiet place though, if someone starts talking to me or something I can hear things fine.

@lint

Yes, it behaves in odd ways. Certainly, talking about it makes it become much louder!

Mx. Alba

Apr 10

@kaffando

I have a pretty mild case of high pitched squeal that I can ignore most of the time but now that you mentioned it I'm fully aware of it again. 🤭

@MxAlba

Ohhh, I'm sorry!

I just said to someone else as soon as you start talking about it, it becomes much louder! Hopefully it'll settle down again quickly.

#tinnitus

@kaffando And yes, #tinnitus sucks.

Oh, indeed it does. Big time.

@kaffando Since when are you 'beeping'?
I got mine after a car accident in 1996 😬

Ugh, that's a long time and awful way to develop it. Did the accident damage your ear/s?

One ear since surgery (tympanoplasty) in 1983, the other ear gradually joined in a few years later. Hearing loss in both ears hasn't helped.

It awful that there hasn't been more research and treatment options developed, as I think many people have it.

@kaffando Good grief, that's even longer than I have it.
Yes, a fast driving car smashed into the back of mine. Got a whiplash and this little present.

Losing your hearing must be horrible, then you only hear that cacaphony. I feel so sorry for you. I know of an experimental treatment from the Netherlands (where I live) which had some excellent results. Let's hope that develops fast.

Oh, that's dreadful - such a random and horrible thing to come from a whiplash.

Yes, it's a bit ridiculous that my hearing is poor, but I can hear all these noises, loud and clear, ha!

Oh, I'll keep a look out for the work in the Netherlands. If you see anything published, feel free to pass it on. Great to see some good research being done.

Also, hello from down under! I'm in Melbourne, Australia.

@kaffando Good day! Nice to 'meet' you. Glad to say the whiplash is gone.

The article I referred to is from a Dutch news site Look here, this is where the Dutch article points at:
https://www.neurotherapeuticsjournal.org/article/S1878-7479(25)00261-2/fulltext

Oh yes, I meant to add, I hope the whiplash is well gone!

Thanks so much for that article, I'll have a read of it. DBS seems a bit extreme, but then again, if it works....!

That is a very interesting paper. Very small sample size of course, but hopefully the start of something better. Deep brain stimulation is natually very invasive, so risks & benefits would need to be carefully weight up, but this may lead to a treatment that isn't as invasive, which often happens in these sort of studies.

Thanks again, really great to read.

@kaffando Exactly. It's small but it's a step in the right direction. I was a bit surprised to find that tinnitus actually a brain 'damage' occurrence, not something inside the ear.

Glad you appreciate the read. All the little bits of hope help.

Yes, the brain damage thing is really interesting and makes sense, really.

Thank you. Yes, every little bit helps! Have a very good day 🙂

@paulk @kaffando

It was a Wishbone Ash concert. The band insisted on using their own sound engineer in a venue that usually has good sound but now it was terrible. An old guy not knowing what to do with the acoustics of the venue kept turning the volume up. It hurt my ears. I should have left. I've felt that before and healed but now it left me with tinnitus

Paul - Antifa. LGBTQ+ safe.Apr 12

@jerry1970 Ouch, that stinks big. I wonder how many people get tinnitus through concerts where the volume it too loud. I hope it's not too bad for you.

Jerry 🇸🇪Apr 13

@paulk @kaffando
Thanks, yes it does. Music is very important to me so it's taken a long time to get used to it. I mean it's still there but often it does not bother me as much as it used to. Right now there is hardly any sound so the tinnitus is very present.

Paul - Antifa. LGBTQ+ safe.Apr 14

@jerry1970 Yes, drowning it out is what I do too. Music all day.

Theo Apr 10

@kaffando I have tinitus in both ears, always, over 15 years now. Since 1 year I have hearing-aids. It has been better since, I guess my hearing is more relaxed with the aids in.

It is never gone, but the hearing-aids help (for me) to make it bearable.

#tinitus #beepBeepYeah

@theosvv

I'm sorry to hear that (excuse the pun!). Yes, putting some sound into your ear does help, so hearing aides can reduce it a bit. I've learnt to put my hearing aid in when I get up, rather than waiting until later in the morning, which helps a little.

I think it's a reasonably common thing to have.

Cycling Stu Apr 10

@kaffando @caity high pitched squeal. Often 2 pitches though, and they can get interact because they are only slightly different and don’t hold the same pitch constantly

@stufromoz

Yep, I know that one. Ugh. That changing pitch thing, it's so odd. So bloody frustrating.

Wonderdog 🏳️‍🌈Apr 11

@kaffando @stufromoz Squeals, then nothing. A complete blank in one ear for a while. On the same side as the worst trigeminal neuralgia (but predating it, which also makes sense, given the MRI results.) occasionally get something similar in the other ear, suspect that has something to do with TMJ as well.

@caity @stufromoz

Oh, yes. I get trigem neuralgia at times as well, not sure that it makes it any worse though. Will take note of that next time.

@stufromoz @kaffando @caity This describes mine pretty good as well. It doesn't bother me usually, only when it is very quiet and I have nothing to focus on. When I read or watch tv or think about something to entertain my mind (e.g. design something in my head, solve a riddle etc) it doesn't bother me.
When I'm tired and can't focus because of that, then I hear it loud and clear.

I don't think I have serious hearing loss, never tested.

Don't remember the onset, must be decades ago.

@stufromoz @kaffando @caity
Sometimes I hear a white noise, growing louder, followed by silence! Usually in one ear only. The tones come back after a few minutes.
Not being used to silence, this white noise-silence thing is probably more annoying for me then the whole ringing thing.
As long as I can keep myself busy in my head I'm fine.

Cycling Stu Apr 11

@LegoPink @kaffando @caity I was tested years ago and found to have high frequency hearing loss, partly I suspect because of the constant squeals

@LegoPink @stufromoz @caity

It's so incredibly random, and from responses I've had, it can be incredibly different from person to person, but also from hour to hour. Possibly why it's so difficult to research.

#Tinnitus

Cycling Stu Apr 11

@kaffando @LegoPink @caity my husband gets a range of things. Mine Is always squeals. And yes, worse in the quiet or if I am feeling stressed or….

Looking for explanations…Apr 10

High pitched ringing, not constant, often switches on due to excess TV volume. In my head, not my ears, if that makes sense. Sometimes the volume sneaks up without us noticing, or is higher on the next show. Or we turn it up due to rain etc, & forget to turn it back down.

@Susan60

Gosh, that's so specific. Yes, the TV volumes are all ove the place now, you never quite know what will be next. Yes, in your head makes perfect sense - that's how I hear it as well.

Looking for explanations…Apr 10

We took earplugs to see Dune 2, but even so, the volume was so high. Should’ve left.

@Susan60

Ugh. So long since I've been to the movies. I find - as you say - the volume is so high, but I still can't understand what they're saying. I guess I'm used to using subtitles on TV, and miss them at the cinema!

Jude🇵🇸Apr 11

@kaffando @Susan60 As I often say, we sent men to the moon in '69 (and again now), yet in 2026 we can't get tv volumes streamlined. 🤯

@sister_ratched @Susan60

I know, right?!

I'm quite sure they do it on purpose. One ad in particular is really bad - the Trivago ad with the awful men, is always really, really loud.

Ugh.

Jude🇵🇸Apr 11

@kaffando @Susan60 The Trivago ads, ha! I love them, so funny (the guy with the teeth is a famous football coach!). But yeah, the ads are all over the place. Even within a single program though, eg crossing to interviews, it's all over the shop. 🤯

@sister_ratched @Susan60

Oh, the teeth!! It's very good marketing, really - makes you remember the ad!

Yep, I get you - all over the bloody shop!

Luqa 🦄Apr 10

I have 2 types also. My primary one is a constant squeal in my right ear. I have had almost a decade of dealing with it by using constant sound around me, and avoiding silence. My bone conduction headset was a gift from the gods.

@kaffando @Blaze_Blaze

@unicorn @Blaze_Blaze

Oh, it's great that the bone conduction set can help! I've not tried one, so I'll look into that. It's really interesting to see how many people have more than one type of sound. Thanks for the info about the headset!

Jerry 🇸🇪Apr 10

@kaffando
Fedilab does not let me vote. Two types: low hum and high squeek (the old TV sound when off but on power). Mostly left, not as bad right. Worse when tired

@jerry1970

Sorry the vote thing doesn't work! Great description of the TV sound thing, ha! Yep, tiredness really seems to make it worse, doesn't it? So frustrating.

Sometimes trying to sleep is hard. Everything is quiet and then you notice the high pitch

@jerry1970 @kaffando Yep, the old tv thing! I've been walking around the house trying to hunt down a culprit many times... Until it dawned on me that it was equally load, even when I turn around or cover my ears.

BrisWombat Apr 10

@kaffando I just saw this toot and missed the poll, add another vote for the one constant type (high pitch).
My sympathies for the state of your condition.

@WhombeX

Oh, thanks so much. Ugh, the high pitched is probably the worst, nothing can mask it. Is there anything that gives you relief from it?

BrisWombat Apr 11

@kaffando no, but it is at such a high pitch (like old TVs) that i ignore it when i am listening to “normal sounds”. When it gets quiet or I focus on it is very loud.
For those with the condition where it sits in the range of frequency of talking or day to day noise, it must be horrible.

@WhombeX

Yes, when you think about it or talk about it, the volume increases. It's such a weird thing, it really is.

When I walk or talk or really, do any sort of activity, it gets louder. In addition, now that I have pulsatile as well, I hear my heart rate increasing when I move. It's fun! Not. 😎

@kaffando @WhombeX That sounds horrible! Being active is my go to coping strategy!

@LegoPink @WhombeX

I used to be quite active, lots of walking. Now, I find it too stressful, which of course makes my heart rate issues worse. Yep, not much fun.

@kaffando @WhombeX

It's interesting that sometimes during a tough massage on my neck the volume of the high pitch changes. That makes me think at least part of it has to do with the nerves.

Does anyone recognise the following?
I never use noise cancellation on my headphones. It blocks out the noise that blocks part of the high pitched sound. Using noise cancellation makes me more aware of the tinnitus, makes it harder top ignore.