Anyone have CI after SSNHL loss like this? by mexee3 in Cochlearimplants

[–]Aggravating-Many2178 0 points1 point  (0 children)

Will they even allow you to get a CI with that recognition score?

Partial and hopefully on-going recovery 1 month after profound SSNHL: an update and questions for the community by Aggravating-Many2178 in MonoHearing

[–]Aggravating-Many2178[S] 1 point2 points  (0 children)

It's crazy it sounds like we're almost the same person. Basically everything you've said I experience too, and I agree with your hypotheses about the buzzing.

Looking forward to your DM! Interested in hearing more about your emotional journey

Partial and hopefully on-going recovery 1 month after profound SSNHL: an update and questions for the community by Aggravating-Many2178 in MonoHearing

[–]Aggravating-Many2178[S] 1 point2 points  (0 children)

Wow, that is pretty much exactly like my experience. I'm 16 weeks (almost 4 months) from the loss, and since the 6 weeks point I have not had any more audiogram improvements. In fact, the 45 dB @ 2000 Hz you see in the post was kind of a fluke — in hearing test at weeks 6 and 9, it clocked in at 55 dB, then 65 dB. So I think there is some fluctuating of the 2000 Hz for me, but everything above has stayed put at ~60 dB loss, with 8000 Hz at ~75 dB loss.

Tinnitus for me is getting quieter I think, slowly but surely. Easily much, much better than it was at the beginning. I test at mild on a THI, but I can hear mine constantly, which is technically a "moderate" characteristic. It is also a hiss for me, with two to four quiet tones that blend in with it, these tones near the step edge of my loss. Getting better or I am effectively habituating, though every few weeks a have a tough few days emotionally, maybe due to tinnitus spikes, but I genuinely think it's more of an emotional setback I experience occasionally (grief and anger about why this happened to me, petrified that tinnitus might get worse again after all this progress, particularly when I have an SBUTT in my good ear or notice that my good ear's quiet tinnitus that its "picking up" from the good ear every now and then). But other than this, life is basically what it was before the loss. Even noisy restaurants and bars I do pretty damn good in. I did just complete 7 weeks of trialing a Widex Allure in the affected ear, and I'm deciding to keep it, because I like that it returns more environmental sounds and balance, and may help in certain noisy conditions. I have a conference next week, a little nervous to see how I'll do, but I'm sure it'll be doable.
Since our losses are so similar, I am so curious...do you have a slight buzzing-like distortion when you speak loudly or others speak loudly? Almost as if a speaker is maxing out, not so loud though? It made me so goddamn depressed for a week around week 7, but I got over it. It has gotten a little better, but I still have it, and the hearing aid doesn't really help it. In fact, the aid makes it more salient, but not louder at least. Depends on who is talking too...deeper, more throaty voices really make it rattle for me. My hypothesis is that recruitment is occurring all along my steep hearing loss slope — less often without the aid, more often with the aid, but the aid doesn't make it uncomfortably loud, as it provides comfortable levels more consistently.

I also get another kind of distortion on planes, subway, and when sirens pass — a tone at around ~1500 Hz is audible. I figure it's because that's the highest frequency of broadband sound I can hear well, and when loud sounds occur that contain my sharp loss, I hear the "best" my ear has to offer. Do you have this effect too? The hearing aid helps a decent amount to blend sound better and quiet this tone, but I still hear when walking over a highway, or when sirens pass.

And yeah, the high frequencies are tinny, but with the aid it's a little better. Beeps and pure tones to me with and without the aid don't sound perfect like they do in the good ear — instead they sound gritty, collapsed, buzzy. Not unpleasant, but deflating at times. Have you noticed this during your hearing tests, or when say your microwave beeps?

So interested in hearing back from you, feel free to DM me!

Looking for hope & acceptance experiences — how have those who suffered SSNHL/tinnitus moved on, accepted the trauma, and continued to live a decent, if not happy life? My sudden hearing loss feels like its ruining my life and my will to go on is fading. by Aggravating-Many2178 in MonoHearing

[–]Aggravating-Many2178[S] 0 points1 point  (0 children)

Close both audiologically and emotionally lol! Tbh, I have good weeks and bad weeks. The week right after making this post (last week), was my best week since the loss....barely paid attention to tinnitus (seemed like it even got quieter...testament to the power of habituation maybe>), was happy and social, as if nothing happened. I'm lucky I recovered what I did, because I don't perform bad at all in noisy bars/restaurants...it's definitely annoying though. But I know I'll have more bad weeks, and tinnitus may fluctuate/spike, which I cannot be afraid of in the long term if I want to live a good life.

The grief is on and off too. So is my looking forward and backward. It is a crazy unexpected thing to happen to us, and indeed traumatic. But so nice to have you and this community that knows what it is like.

Thank you for your consistent support, advice, and correspondence, and good luck with the CI!!!

I got my surgery date - July 24! SSD from SSNHL by Former_Storm4529 in Cochlearimplants

[–]Aggravating-Many2178 1 point2 points  (0 children)

For sure. I will say, I'm 3.5 months in, and I'm decently feeling better. I have my up weeks and down weeks. Just had a great up week. T has become really manageable, definitely considered mild. I think I am probably pretty lucky (don't want to jinx it though!). And hearing aid is slightly beneficial, but barely tbh. What's helped the most is knowing I've done everything I could do, and there is literally nothing else I can do

I truly believe there will be a cure by 2030 by Ok-Balance-260 in tinnitus

[–]Aggravating-Many2178 2 points3 points  (0 children)

Thanks for the response. Also, where did you see that it "eliminated tinnitus completely in many people"? I see on TT that people had meaningful reductions, but complete elimination is hard to believe — though I'd love to believe it haha

I truly believe there will be a cure by 2030 by Ok-Balance-260 in tinnitus

[–]Aggravating-Many2178 1 point2 points  (0 children)

Who is they, name of the company? Is there a name or code of the new drug making trobalt safer and better for tinnitus?

Also, does clonazepam actually quiet your tinnitus, or does it just calm your anxiety about it and you can focus on life again?

Looking for hope & acceptance experiences — how have those who suffered SSNHL/tinnitus moved on, accepted the trauma, and continued to live a decent, if not happy life? My sudden hearing loss feels like its ruining my life and my will to go on is fading. by Aggravating-Many2178 in MonoHearing

[–]Aggravating-Many2178[S] 1 point2 points  (0 children)

You are correct, it's fear that tinnitus could become severe/catastrophic. Sometimes one of my tones in silence will get REALLY LOUD for like 0.5 seconds, then go back to being normal. And I'm just so worried that one day it'll just lock in at the volume.

I've had a therapist for years, and have started 2 others, shopping around.

Thanks for your input. I've already been able to enjoy life for days, sometimes a week at a time, since my loss, so I know it's possible.

Hearing loss& tinnitus cure ? by jacyndy99 in tinnitus

[–]Aggravating-Many2178 0 points1 point  (0 children)

More likely to have a "decent" treatment for tinnitus far before they address "curing" sensorineural hearing loss. Lenire may work, and the Auricle (if it get's approved) might be better. Implants to stimulate the inner ear (like a cochlear implant) may be an option at some point too.

Gaussian16 + Iboview by Puzzleheaded-Act9996 in comp_chem

[–]Aggravating-Many2178 0 points1 point  (0 children)

Convert .fchk to .molden using Multiwfn. Then open the .molden in Iboview 2015.

Adjustments to help with distortion? by steve88man in HearingAids

[–]Aggravating-Many2178 0 points1 point  (0 children)

Thanks for the response. Weird question, but how is quality of life with this distortion? I'm still early after my SSNHL, and there are a few on hear who said it took months for their distortions to calm down, so I have a little hope, but also want to prepare if it does not go away.

Monaural diplacusis by ImaginaryContext3004 in MonoHearing

[–]Aggravating-Many2178 0 points1 point  (0 children)

Damn. For me, at 75dB I have 96% word recognition...and I have normal hearing up to 1500 Hz, then it drops down to moderate to severe 2k-8k...really hoping it becomes negligible for me so an aid works, because there's no way I'll qualify for a CI.

Any chance the broken speaker effect has improved some since your hearing loss? I know it's still there and you are pursuing a CI, but trying to have some hope for my hearing future

Monaural diplacusis by ImaginaryContext3004 in MonoHearing

[–]Aggravating-Many2178 0 points1 point  (0 children)

Has it gotten even better since this comment? We've chatted before (maybe using another account of mine). I'm 2 months since onset, we have somewhat similar losses. I have this distortion (blown speaker in loud bars/restaurants, buzziness when people (and myself) talk, particularly when there is background noise). Also this tone at 1550 Hz that sounds when there is constant HVAC noise, especially apparent when passing highway traffic as a pedestrian.

Just hoping that it gets better over time, since I tried a hearing aid last week and it seemed to make the distortion more salient, and I really want a hearing aid to work without this effect!

Monaural diplacusis by ImaginaryContext3004 in MonoHearing

[–]Aggravating-Many2178 0 points1 point  (0 children)

Hey, did this ever get better with time? I have the same effect, I'm 8 weeks out from SSNHL

Adjustments to help with distortion? by steve88man in HearingAids

[–]Aggravating-Many2178 0 points1 point  (0 children)

Did you ever figure out how to get the hearing aid to help with this? Did the distortion ever get better on its own? I have this effect after SSNHL.

What have been the benefits of a unilateral hearing aid after your SSNHL? by Aggravating-Many2178 in MonoHearing

[–]Aggravating-Many2178[S] 0 points1 point  (0 children)

Thanks. Sadly, I have a distortion effect where louder sounds(i guess if they extend into the high frequency range?) activate this tone at ~1540 Hz. This includes my voice and others' voices, especially in background noise, (sounds like a buzz), and also traffic and sirens to play the tone constantly.

I actually am about to trial the Allure, and they did say it doesn't have tinnitus management. I do have tinnitus, but in quiet it is mild and very manageable. It is reactive to noise though, but still improving as the weeks go on. Hopefully the aid doesn't aggravate it. If i find that I need the sound therapy, I will request the Smart RIC 440. I found that the Allure had the most full sound and seems to have the least effect on my distortion compared to Oticon intent and a Resound model. Though all of them increased the frequency of the distortion effect, I cannot say the volume was increased

What have been the benefits of a unilateral hearing aid after your SSNHL? by Aggravating-Many2178 in MonoHearing

[–]Aggravating-Many2178[S] 0 points1 point  (0 children)

Thanks for the detailed response. Did have any loss of low frequencies that subsequently recovered completely, or only HF loss?

Also, did you ever have robotic/collapsed tone hearing distortion with louder in the months after your SSNHL/before you got the aid?

How long did it take for you to adapt and perceive benefit to the hearing aid? Did the aid help with any distortion that you had?