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

[derpytia]

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.

 

[Brian P]

Why does the hearing loss keep accumulating?

 

[Ed209]

I'm really sorry to see you here again, derpytia. You've been through a lot, but you understand the process of recovery more than most on this site. It's a path well-trodden for you and I strongly believe you will get back into the rhythm of life again, but it may take some time. There will always be moments where we feel we are getting beaten down, and not just by tinnitus and hearing-related issues, but by life itself. We all lose our grip on the handle at times because life can be a cruel son of a bitch.

Try not to let yourself sink into a state of despair because there's a whole army of people here who have your back and understand what you're going through. Take baby steps forwards.

 

[aura]

Hello... again.

I'm also back after 8 normal years and I understand very well what you're going through.

You will find here all the support you need.

 

[derpytia]

Why does the hearing loss keep accumulating?

Wish I had a clear answer Brian. All tests normal save for audiograms. Fixing to go in for another one soon to see what the damage is now but it's a whole process since insurance in the USA is a bit of a nightmare especially since COVID-19.

No tumors. No deficiencies... Just losing like huge chunks of hearing every 1 to 2 years on a given day of being a normal human doing normal human things.

Maybe I just lost the genetic lottery.

 

[Brian P]

Wish I had a clear answer Brian. All tests normal save for audiograms. Fixing to go in for another one soon to see what the damage is now but it's a whole process since insurance in the USA is a bit of a nightmare especially since COVID-19.

No tumors. No deficiencies... Just losing like huge chunks of hearing every 1 to 2 years on a given day of being a normal human doing normal human things.

Maybe I just lost the genetic lottery.

Autoimmune ear disease?

 

[Jack Straw]

I am so sorry you are suffering so much. I hope it gets better quickly and you can resume your life and enjoy your new relationship!

 

[InfiniteLoop]

@derpytia, we all go through up and downs with this evil condition. You are stronger than you think because you have been able to recover from multiple relapses and worsenings.

The hearing in my left ear keeps getting worse and the tinnitus intensity and persistence goes along. In my case, it might the onset of aging, but I don't understand why the hearing loss and tinnitus is just in one ear.

Stay calm, and try to go back to your life.

 

[quietatnight]

@derpytia, I remember you, we're both old timers and have had our shares of ups and downs. I'm glad to hear from you. I just wish it was under different circumstances.

I'm wishing you all the best on your road back to recovery and normal days again soon.

Take care.

Louie
Quietatnight

 

[ThomasF]

Staying positive in these sorts of circumstances is difficult. While I am not a long standing member here, I have felt enormous relief just by being able to read the stories of others that share my plight as well as tell my own.

I want you to know that you are not alone and that we are rooting for you.

 

[DebInAustralia]

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.

Hydrops?

Would you consider the John from Ohio Meniere's protocol? Diuretics? LDN (Low-Dose Naltrexone)?

 

[Nathaniel Teposo]

We have a common situation. Worsening of tinnitus and hearing after almost a decade of living a normal life again.

But it's get better in time and hope yours will.

 

[valeri]

Stay strong girl! You will be fine again. I remember your story from years ago, you've been through some tough times.

 

[TheDanishGirl]

I remember you. I must admit it's kinda nice seeing one of the people from back when I was still early into the tinnitus/hyperacusis journey. I often feel devastated about the fact that I seem to be the only one left suffering from back then. Everyone else seems so have improved and moved on. Of course I do NOT at all like the circumstances of why you have returned I hope you will improve with time. I hope we all do.

 

[derpytia]

I remember you. I must admit it's kinda nice seeing one of the people from back when I was still early into the tinnitus/hyperacusis journey. I often feel devastated about the fact that I seem to be the only one left suffering from back then. Everyone else seems so have improved and moved on. Of course I do NOT at all like the circumstances of why you have returned I hope you will improve with time. I hope we all do.

Hey you, I remember you too. I'm sorry you were still suffering. I feel bad now that I was enjoying two years while you were stuck here by yourself.

Just wish this would go away. The hearing loss I could eventually deal with. This worsening is different this time. It's so intrusive that it can't be masked anymore because I can no longer hear the frequencies required to mask it. If I ever manage to habituate, I don't know if I'll have any quality of life anymore.

 

[Juan]

No tumors. No deficiencies... Just losing like huge chunks of hearing every 1 to 2 years on a given day of being a normal human doing normal human things.

Do you have symptoms after noise exposure (meaning for instance walking around traffic, a normal city walk)? Headaches, ear pressure etc?

 

[Juan]

. I often feel devastated about the fact that I seem to be the only one left suffering from back then.

You and I... haha.

 

[Juan]

The hearing loss I could eventually deal with.

How? Do you use hearing aids?

This worsening is different this time. It's so intrusive that it can't be masked anymore because I can no longer hear the frequencies required to mask it.

Do you hear your tinnitus when you wake up in the morning?

Does your brain cancel out or ignores the tinnitus at any time?

 

[GregCA]

I often feel devastated about the fact that I seem to be the only one left suffering from back then.

You could be making the same mistake therapists make: just because people don't come back to express suffering anymore doesn't mean they're over it. You're not alone.

 

[Michael B]

I remember you. I must admit it's kinda nice seeing one of the people from back when I was still early into the tinnitus/hyperacusis journey. I often feel devastated about the fact that I seem to be the only one left suffering from back then. Everyone else seems so have improved and moved on. Of course I do NOT at all like the circumstances of why you have returned I hope you will improve with time. I hope we all do.

I'm not a regular on this website but do drop in on occasion and happen to read your post. I wanted to let you know that you are not alone and I truly believe others continue to have trouble with their tinnitus despite no longer contributing as they once had. I myself fall in this category.

 

[Tanni]

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.

Hey Tia, I remember you. I actually randomly thought about you a couple of months ago.

Your last two years sound incredibly impressive - I can't believe how much you were able to do with intrusive tinnitus. That takes a huge amount of strength.

Hopefully this new setback will be temporary. But even if it isn't, remember that new/louder sounds always seem worse when you first get them, and its normal to think you will never be able to cope with them. You've done it before - you can do it again

 

[derpytia]

Hello again. It's been 8 long years. I am now considered severely and profoundly deaf and I wear hearing aids. I can still hear speech level so at least I can talk to people without wearing hearing aids. I am just so... hopeless. My tinnitus is beyond catastrophic levels. So beyond the scope of suffering I could have ever comprehended when I first got it and came here in 2014. Didn't matter how much I protected, I still lost hearing when exposed to normal sound levels that people hear every day. My audiologist predicts I will need cochlear implants by the time I am 40. I honestly will be surprised if I live that long.

It is soooo hard to hold onto hope. I just want to quit, but I have far too many people who I love and who love me. I am so afraid that one day that love will not be enough and I'll do something to myself.

I wish that medical science progressed in leaps and bounds at the same pace my hearing loss and tinnitus did.

New sufferers: Do not take my case as your definite future. I am a decidedly unique outlier much like I am in other medical areas of my life. I just come here to hopefully glean some support and maybe a glimmer of hope.

 

[UKBloke]

My audiologist predicts I will need cochlear implants by the time I am 40.

Very sorry for the situation you're in. These afflictions absolutely test us to the limit.

There's evidence to suggest that tinnitus improves for some people post-cochlear implant surgery. This 2018 study is quite an informative read, especially in terms of which procedure type to opt for when attempting to tackle tinnitus is a high priority.

None of this is easy but I guess we just have to try and take each day the best we can. I'm sure those around you who love you understand.

 

[Sonic17]

I'm not a regular on this website but do drop in on occasion and happen to read your post. I wanted to let you know that you are not alone and I truly believe others continue to have trouble with their tinnitus despite no longer contributing as they once had. I myself fall in this category.

Yup, I fall into the "no improvement group" as well. In the early days of my tinnitus I was on the site daily, now I just visit once in a while to see if there are any new treatments. Ears ringing since April 2017

 

[Tweaker]

Ears ringing since 2010. I've had ups and downs along the way. Pretty severe now but hanging on, hoping for improvement. A few months ago, pre-COVID-19, life was pretty good. Tinnitus is such a horrid condition. Many of us feel your pain.

 

[dan]

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

Tinnitus did that to me as well. I was back here after 2 years of tinnitus bliss.

That's what this shit does. It throws you a life line, but the rope is made in China and rips.

 

[glynis]

Very sorry for the situation you're in. These afflictions absolutely test us to the limit.

There's evidence to suggest that tinnitus improves for some people post-cochlear implant surgery. This 2018 study is quite an informative read, especially in terms of which procedure type to opt for when attempting to tackle tinnitus is a high priority.

None of this is easy but I guess we just have to try and take each day the best we can. I'm sure those around you who love you understand.

Hello @derpytia.

Please don't give up hope.

I also have bad hearing loss and have dual purpose hearing aids and severe tinnitus in both ears. It never stops and it is hard going but I've chosen to stay positive, living a nice life but yes, a noisy one.

I have a wonderful job, two cats, am single now and loving life on my own as an independent woman.

We can have a good life still.

I might go deaf also but come what may, I will face it if it happens so not going to dwell on what might or might not happen.

I don't come on here much now as my life is very busy with my job. Try stay positive and look for the good in life!

Love,
Glynis xxx

 

[derpytia]

Hello @derpytia.

Please don't give up hope.

I also have bad hearing loss and have dual purpose hearing aids and severe tinnitus in both ears. It never stops and it is hard going but I've chosen to stay positive, living a nice life but yes, a noisy one.

I have a wonderful job, two cats, am single now and loving life on my own as an independent woman.

We can have a good life still.

I might go deaf also but come what may, I will face it if it happens so not going to dwell on what might or might not happen.

I don't come on here much now as my life is very busy with my job. Try stay positive and look for the good in life!

Love,
Glynis xxx

I wish I could have your mindset Glynis. You've always seemed to handle tinnitus far better than I ever did.

 

[derpytia]

Through all this pain, one thing is interesting to me. I was going over some of the articles that Elouise Koops (who was a benefactor of the Daniel Ballinger Memorial Fund we raised years ago) on the neuroplasticity of tinnitus.

I am blind on my right side. I was born with a congenital defect in my eye known as PHPV and they had to remove the lens when I was a baby. Now they tried to make me wear eye patches as a child to force me to use my lens-less eye to see. I hated it cause not only were the patches uncomfy but my vision out of that eye was so so so blurry that I could do very little but sit and wait for the patching time to be up. Subsequent surgeries made me acquire glaucoma but by the time that happened I was just... not using that eye. Just seeing out of my left dominant eye. And now, even if I try to see out of my right eye I cannot. The eye is most certainly blind by my brain has sort of... cut it off. It is as if sight in that eye just no longer exists in my actual BRAIN. I cannot use it or try to see out of it at all if that makes sense. It's as if it doesn't exist to my brain save for physical sensation.

Ironically, that is the ear that has the worst tinnitus. I have tinnitus in my left ear but it is far less noticeable and I sleep on that ear the most. The old tinnitus tones are more in my head than my ears now but as of this increase it's unfortunately a combo of the two... Isn't that weird? It's like my brain just kinda refocused all resources to my left side of my head. Even my muscle tone on my right side around my eye and stuff isn't as good. When I smile it's crooked because I have to really put effort into tightening up that cheek muscle to make it "even".

(Funny that I'm still very much right handed haha). But as far as everything goes with neuroplasticity, it really does feel like the brain refocused all its "good" efforts to my seeing side and left everything a big mess on my right side. I wonder if it's of any significance or not.

 

[Alue]

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.