Back for Support — In the Depths of Despair with Worsening Hearing Loss and Tinnitus

[derpytia]

Hi @derpytia, I remember you. I'm sorry to hear you are struggling.

I'm not doing great at the moment either. I have gone through phases of habituating to the tinnitus and getting on with my life as much as I can with hyperacusis. Then some noise exposure that really shouldn't be damaging gives me a new tone or two and I have to start over. I have so many sounds in my head and in my ears now it's ridiculous.

I remember you too How many tones do you have now? If I concentrate (some of my sounds morph together with others because of how close in pitch they are), I am up to 15.

 

[dan]

Hi @derpytia, I remember you. I'm sorry to hear you are struggling.

I'm not doing great at the moment either. I have gone through phases of habituating to the tinnitus and getting on with my life as much as I can with hyperacusis. Then some noise exposure that really shouldn't be damaging gives me a new tone or two and I have to start over. I have so many sounds in my head and in my ears now it's ridiculous.

Sounds like my story.

 

[Bart]

Hey guys. Some of you might remember me, some of you will not. But I'm back.

Back again in the depths of despair. Worsening hearing loss and worsening tinnitus. I don't want to scare the true newbies. You guys will likely take the normal route of getting better and moving on with your lives.

I am not normal and well every 1-2 years I lose more hearing from doing something that is normal.

All my high frequency and half of my mid frequency hearing is gone. You can imagine the unmaskable hell in my head and ears.

I'm coming back for support. I just had the most wonderfully close to normal two years of life. Now hope was ripped away from me by another loss. I tried not to come back here. Truly I tried very hard to be strong and carry on. I was making money, going places, sleeping (sometimes without meds and my masking track), eating good food... I found the love of my life. A woman I adore and cherish with all my heart. Long distance but that doesn't diminish our love and has not for over a year. (And no, I don't accept religious and homophobic statements on my sexuality and love life).

I had personal growth. I had plans. I felt like I had hope.

Yet here I am. Stuck. Back here.

I would like some support and some hope. Regardless of the fact that I haven't participated here for years I have been occasionally keeping up with research and treatments. Very discouraged to see that Frequency Therapeutics has failed.

So yes. I am back.

I feel your pain as my story is very similar to yours.

But we need to try and stay confident that we can get back to this good place. We have done it before so we know it is possible. We have done it before and will do so again. Time is a healer. It will just be a temporary setback towards the roads to success. Never give up hope.

 

[Alue]

I remember you too How many tones do you have now? If I concentrate (some of my sounds morph together with others because of how close in pitch they are), I am up to 15.

Wow 15 is a lot! I don't know exactly how many sounds I have. I have 5 or 6 tones that I can hear most places, two of which are unmaskable. If I'm in a quiet place or have earplugs in, I have a handful of other tones. Those lower tones seem to pop up and increase in volume if I'm not well rested or have been exposed to loud noise. I try to not count or even acknowledge the ones that I only hear in quiet places, and like you said, some of them sort of meld together. Some of them are constant, but others are non-static. Some beep off and on, it's difficult to describe what those sound like but I have found them to be the most bothersome.

I don't think I have as severe of hearing loss, but I have lost a lot of my high frequency hearing. I also get this weird thing when doing hearing tests where I will hear certain frequencies at low volume, but it doesn't sound like a pure tone, there is this distortion when the tone is at a low volume. The distortion isn't present at higher volumes, only when it gets close to my hearing threshold. I don't know if that means I'm beginning to lose my hearing in that frequency range or what.

 

[derpytia]

I also get this weird thing when doing hearing tests where I will hear certain frequencies at low volume, but it doesn't sound like a pure tone, there is this distortion when the tone is at a low volume. The distortion isn't present at higher volumes, only when it gets close to my hearing threshold. I don't know if that means I'm beginning to lose my hearing in that frequency range or what.

I had that experience with my audiology test and my audiologist said it is likely feedback from damaged hair cells. The sound hits them and because they are damaged they make a sort of feedback noise. So likely you have some hair cells in your cochlea there that are already damaged

 

[Alue]

I had that experience with my audiology test and my audiologist said it is likely feedback from damaged hair cells. The sound hits them and because they are damaged they make a sort of feedback noise. So likely you have some hair cells in your cochlea there that are already damaged

O lovely. But thanks for the information. Feedback is a good way of describing the sound. My audiologist/ENT just shrugged their shoulders.

Sadly that's in the 2-4 kHz range where I previously had zero hearing loss. I did have that when I did a ultra high frequency hearing test years ago, but only at the very high frequencies back then.

I'm curious, do you experience that feedback in a lot of frequencies or just one?

 

[derpytia]

O lovely. But thanks for the information. Feedback is a good way of describing the sound. My audiologist/ENT just shrugged their shoulders.

Sadly that's in the 2-4 kHz range where I previously had zero hearing loss. I did have that when I did a ultra high frequency hearing test years ago, but only at the very high frequencies back then.

I'm curious, do you experience that feedback in a lot of frequencies or just one?

Usually I only get the feedback during audiology tests because they give pure tones for the most part. I can't tell you what tones those are but maybe I can get my audiologist to give me a copy of my next hearing test. My hearing loss is soooooooo bad. I'm amazed I can still hear speech.