Suicidal

[FGG]

I figured. IIRC, you have profound losses in the far end of low and high. One would probably have to make an awkward sound with an app like this. It must be difficult because hyperacusis makes loud sounds unstable and dangerous, but you also need loud volume to cover the profound range.

It just made me wonder, because your Speech-in-noise tests are normal and you say conversations are generally better. I would think there would be some way to mix sound to help with speech.

I am at severe in some of my high end before it falls off a cliff, so maybe there is a way but I just don't have the know how to tweak it.

Maybe I will try again if I get my recent ear pain to settle.

 

[Gee82]

I have read the success stories and feel more depressed. So many of them, if you look at their post history, actually come back to the forum after posting their success story, spiked, worse, distressed or the calm was temporary before the storm.

I am one of them. Last summer my tinnitus gave me a lovely break for 3 months, only to come back louder and with an extra tone. Here I am now, over 2 years in, from success stories to suicide thread.

Habituation doesn't seem to be on my horizon either, and I am not sure I have the strength to endure this miserable suffering until some help comes out of the trials.

But you are still very early in and have chances to improve or habituate or try things that may work for you. I hope you can fully recover from this horrible condition. ADs helped me to survive when anxiety and despair took over in the first year; I see that you are cautious with meds, but please don't rule them out as they do help to some extent.

 

[roy1159]

As I have mentioned, my speech comprehension problems seem similar to yours for what it's worth (struggle a lot with recorded audio--though maybe not quite to the same extent--but not in person conversation). I don't see many people on the forum with that problem, and it has discouraged me plenty of times too (still does).

Forgot to mention in my last post, too, that my "speech in noise" test also came back normal.

I highly suspect that, like me, you are going to have a very abnormal extended audiogram. Speaker quality seems to make a slight difference to me, too. For instance, using a Bose Sound Bar in front of the TV allows me to catch more words than I would otherwise.

Take Magnesium for nerve stuff (especially liquid even though it tastes horrible) if you aren't already. It can help.

i'm sure my extended audiogram will be abnormal. I just don't understand why this kind of damage is so rare and assuming there is a lot of damage to IHC (as I can barely understand speech besides conversations in person and sometimes the news broadcast which is a struggle as well) and ultra high frequencies, how come there is no indication for it in the 4-8 kHz range or the ABR test?

It's super frustrating in the sense that your hearing isn't functional at all but nothing comes up in the tests. I'll be honest, I can barely hang on daily with the hearing problems, the severe tinnitus in itself is a nightmare in itself. I can almost say with certainty that my young brain has deteriorated a lot due to the severity of the tinnitus and hearing problems... I think I can forget about going to university next October as well, I don't think my damaged brain can handle that. I can't think of a way to hang on daily... although I'd really to go back to my normal life but it's a distant fantasy sadly.

At least with only tinnitus, albeit severe, I could have tried bit by bit going back to normal life, but with the current situation I can barely hold on to life. I will go as far as saying I've lost everything I had due to this... and all because of working in a cafe (?!), it almost sounds like a joke.

 

[roy1159]

This comment is for @roy1159 as well.

Have either of you tried like equalizers or equalizer apps on the computer? My hyperacusis is worsened by high frequency noises so when I was doing sound therapy, I downloaded "Audio Equalizer" to turn down certain frequencies. Attached is a screenshot of the basic interface.

View attachment 43859

I realize that most of the work needs to be done on the actual speaker, not just an app, but I'm curious if these help or not.

I have tried loudness equalizer in my room's sound system, it didn't have much of an effect. Even in my quiet room I have trouble understanding speech coming out of the speakers (which are quality speakers for their price) so I can say it's probably not the quality of the sound system. It amazes me how I was able to do so much damage although doing everything right and protecting my hearing religiously. I wonder if the tinnitus itself has a role in speech comprehension, I haven't gone through the research regarding that. In most cases I know that tinnitus in itself doesn't have to do with it.

 

[Zugzug]

I have tried loudness equalizer in my room's sound system, it didn't have much of an effect. Even in my quiet room I have trouble understanding speech coming out of the speakers (which are quality speakers for their price) so I can say it's probably not the quality of the sound system. It amazes me how I was able to do so much damage although doing everything right and protecting my hearing religiously. I wonder if the tinnitus itself has a role in speech comprehension, I haven't gone through the research regarding that. In most cases I know that tinnitus in itself doesn't have to do with it.

Unless your tinnitus is so much louder than the noise where you are missing the speech, I think it's so much more likely that they coincide. In other words, your brain is producing tinnitus at the same frequencies where you have speech problems because of a weakened input.

One can definitely have perfect speech recognition abilities and also have pretty severe tinnitus. Speech recognition problems are typically a combination of hearing loss outside of the standard frequency ranges along with synapse damage. Fortunately, there are drugs in the pipeline for both.

It's really odd that you have no idea how you got it. I guess the most logical explanation is that you just have sensitive hearing genes? Obviously, we are not all created equally with regards to how much noise we can tolerate.

Even then. You say that you protected, which is actually impressive to do before getting the hearing problem. I wonder if the cause has nothing to do with noise. I'm not sure.

 

[Marin]

@AliasM, I completely empathize with your struggle, and you wrote exactly what I say to myself everyday. I don't want to die; I want to live a full life with my husband and children! Instead H is torturing me to death. I'm the complete opposite of a success story, but I wanted to offer you some hope. You are very early into tinnitus & hyperacusis (I know 3 months of this hell seems like forever, though) and this can still improve dramatically for you.

I personally know one mother who developed pain H and screaming tinnitus 3 weeks postpartum. She protected her ears when she could considering she also had a new born to take care of, and she improved over many months. She still has mild H now, but she can live her life.

Hang in there!

 

[roy1159]

Unless your tinnitus is so much louder than the noise where you are missing the speech, I think it's so much more likely that they coincide. In other words, your brain is producing tinnitus at the same frequencies where you have speech problems because of a weakened input.

One can definitely have perfect speech recognition abilities and also have pretty severe tinnitus. Speech recognition problems are typically a combination of hearing loss outside of the standard frequency ranges along with synapse damage. Fortunately, there are drugs in the pipeline for both.

It's really odd that you have no idea how you got it. I guess the most logical explanation is that you just have sensitive hearing genes? Obviously, we are not all created equally with regards to how much noise we can tolerate.

Even then. You say that you protected, which is actually impressive to do before getting the hearing problem. I wonder if the cause has nothing to do with noise. I'm not sure.

Yes I guess my genes have to do with it. I think the cause has to do with noise otherwise I wouldn't have the hearing problem. I really can't see a future for myself living like this everyday. I hate saying this but I really feel disabled in a way. I hope to have the courage to end this soon if things don't turn out better, I know I can't live like this and have known since the onset of the symptoms. I feel like I'm doing a favor for my family but deep down it's the damn survival instinct and the fear of botching the suicide attempt.

 

[Zugzug]

Yes I guess my genes have to do with it. I think the cause has to do with noise otherwise I wouldn't have the hearing problem. I really can't see a future for myself living like this everyday. I hate saying this but I really feel disabled in a way. I hope to have the courage to end this soon if things don't turn out better, I know I can't live like this and have known since the onset of the symptoms. I feel like I'm doing a favor for my family but deep down it's the damn survival instinct and the fear of botching the suicide attempt.

I strongly encourage you to reread @Aaron91's post. I don't say this to minimize your suffering, as I've been suicidal for years, even at the beginning of hyperacusis, but you are not the person I think of as someone in a position to commit a rational suicide. So many things you haven't tried and by the time you exhaust them all, FX-322 could even be released. Are you going to cycle through antidepressants one by one? Demand to see more doctors? Change your hobbies to cope for a few years?

I understand the suicidal thoughts, but it takes time. I've seen many doctors, tried probably 30 supplements, tried 3-4 antidepressants, tried sound therapy, tried steroid therapy, tried other immunosuppressants, and have been so disabled that I haven't talked in a normal voice volume or left my house in over a year. And not being able to talk doesn't even crack the top 50 of the worst parts of my life. Showering is difficult, moving in my chair the wrong way is difficult. Typing is often difficult. I've had suicidal thoughts basically daily.

I still wouldn't consider myself there yet, or even really that close.

 

[Ava Lugo]

Unless your tinnitus is so much louder than the noise where you are missing the speech, I think it's so much more likely that they coincide. In other words, your brain is producing tinnitus at the same frequencies where you have speech problems because of a weakened input.

One can definitely have perfect speech recognition abilities and also have pretty severe tinnitus. Speech recognition problems are typically a combination of hearing loss outside of the standard frequency ranges along with synapse damage. Fortunately, there are drugs in the pipeline for both.

It's really odd that you have no idea how you got it. I guess the most logical explanation is that you just have sensitive hearing genes? Obviously, we are not all created equally with regards to how much noise we can tolerate.

Even then. You say that you protected, which is actually impressive to do before getting the hearing problem. I wonder if the cause has nothing to do with noise. I'm not sure.

In cases where people have bad reactive tinnitus and hearing loss, do you think the brain is trying to match the external sound volume level by increasing the tinnitus to be as loud as the external sound because the brain is trying to "hear" but it can't hear properly due to hearing loss so it's basically compensating by having the reactive tinnitus react to every sound? I didn't get a chance to read Roy's posts yet so I don't know if he also has reactive tinnitus but I saw your comment to him so I had to ask.

 

[Zugzug]

In cases where people have bad reactive tinnitus and hearing loss, do you think the brain is trying to match the external sound volume level by increasing the tinnitus to be as loud as the external sound because the brain is trying to "hear" but it can't hear properly due to hearing loss so it's basically compensating by having the reactive tinnitus react to every sound?

That is the mainstream scientific belief. Why some brains don't care and others do is just a matter of luck (aka how predictive their brains are).

 

[Ava Lugo]

I strongly encourage you to reread @Aaron91's post. I don't say this to minimize your suffering, as I've been suicidal for years, even at the beginning of hyperacusis, but you are not the person I think of as someone in a position to commit a rational suicide. So many things you haven't tried and by the time you exhaust them all, FX-322 could even be released. Are you going to cycle through antidepressants one by one? Demand to see more doctors? Change your hobbies to cope for a few years?

I understand the suicidal thoughts, but it takes time. I've seen many doctors, tried probably 30 supplements, tried 3-4 antidepressants, tried sound therapy, tried steroid therapy, tried other immunosuppressants, and have been so disabled that I haven't talked in a normal voice volume or left my house in over a year. And not being able to talk doesn't even crack the top 50 of the worst parts of my life. Showering is difficult, moving in my chair the wrong way is difficult. Typing is often difficult. I've had suicidal thoughts basically daily.

I still wouldn't consider myself there yet, or even really that close.

You've managed to adjust despite a very difficult disability?

 

[Zugzug]

You've managed to adjust despite a very difficult disability?

I've started Lexapro and it makes me want to kill myself a little less, though the hearing condition is the same. The tinnitus is actually probably worse.

I'm not the standard though as I have a really fucked up disease that affects probably 1 in millions.

 

[roy1159]

I strongly encourage you to reread @Aaron91's post. I don't say this to minimize your suffering, as I've been suicidal for years, even at the beginning of hyperacusis, but you are not the person I think of as someone in a position to commit a rational suicide. So many things you haven't tried and by the time you exhaust them all, FX-322 could even be released. Are you going to cycle through antidepressants one by one? Demand to see more doctors? Change your hobbies to cope for a few years?

I understand the suicidal thoughts, but it takes time. I've seen many doctors, tried probably 30 supplements, tried 3-4 antidepressants, tried sound therapy, tried steroid therapy, tried other immunosuppressants, and have been so disabled that I haven't talked in a normal voice volume or left my house in over a year. And not being able to talk doesn't even crack the top 50 of the worst parts of my life. Showering is difficult, moving in my chair the wrong way is difficult. Typing is often difficult. I've had suicidal thoughts basically daily.

I still wouldn't consider myself there yet, or even really that close.

I encourage hope when it's not false hope. Assuming FX-322 will resolve my issues, it will be years before it will be possible (if at all...) and I'm not from the US so no one can predict when it will reach markets outside the US. At least people in this forum managed to achieve things in life before their situation began, I was just about to start my adult life and achieve what I hoped to achieve and now I can't do any of it. How can I go through the days when I can't even take part in escapistic activities? can't study or better myself in any way, and for now can't even work because of neurological physical problems which I'm afraid are turning chronic. I've lost all hope also because I have no coping mechanisms left at all and I've nothing to look forward to. I wish there was help but there is none, my situation couldn't be worse.

 

[Zugzug]

I encourage hope when it's not false hope. Assuming FX-322 will resolve my issues, it will be years before it will be possible (if at all...) and I'm not from the US so no one can predict when it will reach markets outside the US. At least people in this forum managed to achieve things in life before their situation began, I was just about to start my adult life and achieve what I hoped to achieve and now I can't do any of it. How can I go through the days when I can't even take part in escapistic activities? can't study or better myself in any way, and for now can't even work because of neurological physical problems which I'm afraid are turning chronic. I've lost all hope also because I have no coping mechanisms left at all and I've nothing to look forward to. I wish there was help but there is none, my situation couldn't be worse.

I share quite a bit of your psychological profile. I hate false hope. I'm like 10/10 fact-based, evidence-based kind of person. I studied math so my brain is literally trained for proving things with logic only. I don't even believe in FX-322 for myself (I have a dark, progressive, complicated, and severe form of hyperacusis that isn't noise induced).

As far as "achieving things in life before their situation began," I think you need to get outside of your own head a little bit (and I say that lovingly). You're right; you are amazingly young to have hearing problems. I feel young, but I'm a decent amount older than you. Let me share a little of my backstory so you know what I was robbed of.

High school sucked for me. I got to college and was a mess the first year. Smoked a lot of pot, drank a lot, wasn't very moral, frankly. Around sophomore year, I dropped the pot and found myself. I set out a goal (that would take from that point about 10 years) to become a math professor. I also met my (now) wife in college.

I get to grad school; my wife sacrifices by commuting far to work. I save my career by passing Ph.D. qualifying exams. Shortly after, my best friend dies unexpectedly, I developed symptoms of a systemic autoimmune disease. I was really sick. Flu-like symptoms, intense suicidal pain, fatigue, neuropathy, dryness, many other things. I spent the entire summer after my second year on a couch crying and wishing I was dead. I then had to take a semester off.

After the semester off, I was still chronically sick. I went to school, researched, took tests, taught with pain and fatigue. My "winter breaks" and "summer breaks" were massive pain flare ups after the stress of the semesters ended. This went on for about 4 years. I "managed" it with running and cutting out all sugar.

But through it all, I was successful. I was a good student in my class; my research was solid. I was going to make it. I was going to achieve my ten year goal. My wife, who had sacrificed to help put me through grad school (though I had a stipend), was going to be rewarded with a shared home; we were going to have kids.

Last year of grad school was absolutely brutal. I spent many hundreds of hours applying for jobs, typing cover letters, studying schools, practicing interview questions. I also was trying to publish my work to put me in the running for a job (market for professors sucks). I was fortunate to land a few on-site interviews for tenure-track positions. These interviews included multiple hour long presentations, meeting with deans, meeting with students, all sorts of stuff. One was two full days, no breaks. I did well.

I landed the tenure-track position I wanted. Knowing that I had a long-term position in the works, my wife and I began house hunting. On any given day, we would have to leave work and commute 3 hours (one way) to check out a home and quickly place a bid. After a number of months, we found a beautiful home (the one I am suffering in now) and got our offer accepted. The plan was to start a family in about a year.

I finish up my school year, typing my 150 page dissertation. We had to close on the house, deal with all of the pain in the ass insurance and homeowner bullshit (my wife did most of this, thankfully). My wife watched as the company she put in great work at for years refused to let her work from home to make our new living arrangement work. Regardless, she persevered and landed an amazing work-from-home job that she currently holds.

We were really going to make it. Two great jobs. An absolutely gorgeous home. A family in the future.

We finally move in. I'm not kidding you, five fucking days after we move in, my disease flares up. But instead of pain, I develop balance problems, tinnitus, and (at that point) minor hyperacusis. I'm not worried, I think it's just an ear infection or something.

I watch as it just keeps worsening and worsening. I lose my ability to converse, wear earplugs and earmuffs 24/7. I cry throughout entire car rides.

It finally got bad enough where I realized that I couldn't teach at my new job. I told my employer and we agreed to take the semester off. During that semester, I saw two upswings. I thought it was going away and that I could put it behind me. It wasn't stable enough for me to teach so we agreed to take one more semester off.

All I did was play ~40 dB music for 1-2 hours as an experiment to see what it did to my hyperacusis. That experienced dropped my LDLs by about 30 dB. I couldn't tolerate any sound. It even took me a long time to eat because I couldn't tolerate the sound of my own biting.

Finally, my employer and I meet and we (cordially under the circumstances) mutually part ways. We met through video chat (during COVID-19) and we fucking typed to each other. I lost my job through a typing conversation. (This is not any anger towards my boss, he was a really awesome guy).

Doctor finally puts me on long-term steroids. I improve by 20-25%, but level off completely. To this day, I am roughly around that level. I haven't left my house in a year. I wear earmuffs 24/7. I can't talk, can barely tolerate whispering. I was rejected disability income. My wife also had her life robbed. No kids for us anytime soon; she tiptoes around her own house. On top of providing all of the money, she has done most of the house work over the past 2 years.

I don't believe in anything. I probably have an autoimmune disorder attacking my nerves so FX-322 almost surely won't help much. Even if it was hair cells, my immune system will just kill them again. There won't be a cure for autoimmune diseases anytime soon. There won't be a regenerative medicine for nerves anytime soon (all pre-clinical). What am I living for? I'm living for the chance that it eventually gets so bad that I can't hear at all.

Trust me when I say, I know what it's like to be robbed of life.

 

[roy1159]

I share quite a bit of your psychological profile. I hate false hope. I'm like 10/10 fact-based, evidence-based kind of person. I studied math so my brain is literally trained for proving things with logic only. I don't even believe in FX-322 for myself (I have a dark, progressive, complicated, and severe form of hyperacusis that isn't noise induced).

As far as "achieving things in life before their situation began," I think you need to get outside of your own head a little bit (and I say that lovingly). You're right; you are amazingly young to have hearing problems. I feel young, but I'm a decent amount older than you. Let me share a little of my backstory so you know what I was robbed of.

High school sucked for me. I got to college and was a mess the first year. Smoked a lot of pot, drank a lot, wasn't very moral, frankly. Around sophomore year, I dropped the pot and found myself. I set out a goal (that would take from that point about 10 years) to become a math professor. I also met my (now) wife in college.

I get to grad school; my wife sacrifices by commuting far to work. I save my career by passing Ph.D. qualifying exams. Shortly after, my best friend dies unexpectedly, I developed symptoms of a systemic autoimmune disease. I was really sick. Flu-like symptoms, intense suicidal pain, fatigue, neuropathy, dryness, many other things. I spent the entire summer after my second year on a couch crying and wishing I was dead. I then had to take a semester off.

After the semester off, I was still chronically sick. I went to school, researched, took tests, taught with pain and fatigue. My "winter breaks" and "summer breaks" were massive pain flare ups after the stress of the semesters ended. This went on for about 4 years. I "managed" it with running and cutting out all sugar.

But through it all, I was successful. I was a good student in my class; my research was solid. I was going to make it. I was going to achieve my ten year goal. My wife, who had sacrificed to help put me through grad school (though I had a stipend), was going to be rewarded with a shared home; we were going to have kids.

Last year of grad school was absolutely brutal. I spent many hundreds of hours applying for jobs, typing cover letters, studying schools, practicing interview questions. I also was trying to publish my work to put me in the running for a job (market for professors sucks). I was fortunate to land a few on-site interviews for tenure-track positions. These interviews included multiple hour long presentations, meeting with deans, meeting with students, all sorts of stuff. One was two full days, no breaks. I did well.

I landed the tenure-track position I wanted. Knowing that I had a long-term position in the works, my wife and I began house hunting. On any given day, we would have to leave work and commute 3 hours (one way) to check out a home and quickly place a bid. After a number of months, we found a beautiful home (the one I am suffering in now) and got our offer accepted. The plan was to start a family in about a year.

I finish up my school year, typing my 150 page dissertation. We had to close on the house, deal with all of the pain in the ass insurance and homeowner bullshit (my wife did most of this, thankfully). My wife watched as the company she put in great work at for years refused to let her work from home to make our new living arrangement work. Regardless, she persevered and landed an amazing work-from-home job that she currently holds.

We were really going to make it. Two great jobs. An absolutely gorgeous home. A family in the future.

We finally move in. I'm not kidding you, five fucking days after we move in, my disease flares up. But instead of pain, I develop balance problems, tinnitus, and (at that point) minor hyperacusis. I'm not worried, I think it's just an ear infection or something.

I watch as it just keeps worsening and worsening. I lose my ability to converse, wear earplugs and earmuffs 24/7. I cry throughout entire car rides.

It finally got bad enough where I realized that I couldn't teach at my new job. I told my employer and we agreed to take the semester off. During that semester, I saw two upswings. I thought it was going away and that I could put it behind me. It wasn't stable enough for me to teach so we agreed to take one more semester off.

All I did was play ~40 dB music for 1-2 hours as an experiment to see what it did to my hyperacusis. That experienced dropped my LDLs by about 30 dB. I couldn't tolerate any sound. It even took me a long time to eat because I couldn't tolerate the sound of my own biting.

Finally, my employer and I meet and we (cordially under the circumstances) mutually part ways. We met through video chat (during COVID-19) and we fucking typed to each other. I lost my job through a typing conversation. (This is not any anger towards my boss, he was a really awesome guy).

Doctor finally puts me on long-term steroids. I improve by 20-25%, but level off completely. To this day, I am roughly around that level. I haven't left my house in a year. I wear earmuffs 24/7. I can't talk, can barely tolerate whispering. I was rejected disability income. My wife also had her life robbed. No kids for us anytime soon; she tiptoes around her own house. On top of providing all of the money, she has done most of the house work over the past 2 years.

I don't believe in anything. I probably have an autoimmune disorder attacking my nerves so FX-322 almost surely won't help much. Even if it was hair cells, my immune system will just kill them again. There won't be a cure for autoimmune diseases anytime soon. There won't be a regenerative medicine for nerves anytime soon (all pre-clinical). What am I living for? I'm living for the chance that it eventually gets so bad that I can't hear at all.

Trust me when I say, I know what it's like to be robbed of life.

Wow what a rollercoaster... I'm sorry this hell landed on you. I wish at least I'd be able to complete my academics like you before this mess, now I can barely concentrate and remember things. While reading your comment I zoned out several times because of my tinnitus blaring, I really feel my brain deteriorated. I know my situation isn't getting any better (it gets worse with new physical conditions that are also out of my control), and I know I can't lead a normal life so I don't see a good reason to stay alive... it's not like I'm living anyway. I wish I was mentally strong as you, but for me my situation is too hard to bear. I know that if my situation doesn't get better soon I'll pull the plug, it's just a matter of time. For sometime I was angry at the world and doctors and everyone, but now after trying to resolve things for a year and running out of options, all I want is for this nightmare to end.

 

[Zugzug]

Wow what a rollercoaster... I'm sorry this hell landed on you. I wish at least I'd be able to complete my academics like you before this mess, now I can barely concentrate and remember things. While reading your comment I zoned out several times because of my tinnitus blaring, I really feel my brain deteriorated. I know my situation isn't getting any better (it gets worse with new physical conditions that are also out of my control), and I know I can't lead a normal life so I don't see a good reason to stay alive... it's not like I'm living anyway. I wish I was mentally strong as you, but for me my situation is too hard to bear. I know that if my situation doesn't get better soon I'll pull the plug, it's just a matter of time. For sometime I was angry at the world and doctors and everyone, but now after trying to resolve things for a year and running out of options, all I want is for this nightmare to end.

I completely feel you on concentration issues. I have had horrific brain fog. I can't really read books continuously. Even flipping the pages is stimulating and distracting. My brain fog has been a little better recently because I've been drinking coffee, but it's overall been bad over the past 2 years.

I will repeat this kindly. @Aaron91 shared a bunch of really good questions that you have not answered. One thing that always frustrates me is when someone insinuates that the disability is depression. In other words, depression is the reason why I don't go for walks, as opposed to being unable to tolerate them.

With this being said, if you feel like you are in a position to commit a rational suicide, you should have no problem answering his questions and also a whole lot more.

It is absolutely totally irrational to commit suicide before cycling through every anti-depressant.

Also, if FX-322 can help you, the fact that you don't live in America should not be a make or break situation with suicide. I'm sure if it came to it, members here would support a GoFundMe or something. We don't even know the results yet and they are coming out (probably this week)!

You're just not, in my opinion, in the rational suicide territory. I am NOT saying your problem is depression, as opposed to a hearing problem, but I do think it's blinding you. Not nearly enough time has gone by and not nearly enough good answers to @Aaron91's questions.

There's no plan and I get it. You have brain fog and it's difficult. There are so many things yet for you to figure out though.

 

[SadMan]

It has been 5 months, but my tinnitus has not gone away.

I can't focus on anything. My nights have been nightmares. I have trouble sleeping. I am being tortured every day. My tinnitus is so violent, I can hear it even in a noisy environment. I have reactive tinnitus.

 

[AliasM]

Zugzug, I am sorry to read your story. We have all list so much. I wonder if mine is autoimmune damage too but they all say no. I know I was flaring in other parts of my body when this started. I also feel I am getting worse and this is an active process evolving in real time but I am constantly dismissed - this is despite my ESR and CRP being high when this all started. I don't know what those levels are now. They won't test me. The reason they say no is because my hearing is low normal with minor loss at 8 kHz. They say if it was autoimmune I would have had drastic sudden hearing loss.

I am wondering what your hearing loss is like?

 

[AliasM]

It has been 5 months, but my tinnitus has not gone away.

I can't focus on anything. My nights have been nightmares. I have trouble sleeping. I am being tortured every day. My tinnitus is so violent, I can hear it even in a noisy environment. I have reactive tinnitus.

It is the same for me, you are not alone. I don't even know what caused it.

 

[MRItechssuck]

Midrange is usually the range to increase to help hearing speech, but you probably have tried this.

Also, if FX-322 can help you, We don't even know the results yet and they are coming out (probably this week)!

Wait... what? I can't be on here much... Lenire seems to have fizzled... University of Michigan has their travel restrictions for their trial... and they are so slow... OTO-313... seems like nothing? OTO-413?

Someone please catch me up...

I have severe arthritis where I can hardly open my Turmeric bottle, inflammation, severe tinnitus and hyperacusis, several bad discs in my back (which led to the tinnitus)... so much fun.

 

[Orions Pain]

One thing I think a lot about are the thousands of people who are subject to loud noise daily. Amateur musicians, professional musicians, DJ's, opera singers, broadway performers, bartenders, bouncers, club promoters, dancers, construction workers, people who work at loud venues or in industries full of events with constant loud music. The people who have to get a series of annual MRI's for other conditions and have them with no hearing protection.

Just feel incredibly unlucky to feel so awful all the time and plagued by facial nerve pain and reactive tinnitus with a bad baseline. I literally feel sick (flu-like) from the constant stress that these conditions cause and there seems to be no end in sight. My nervous system is shot and I'm always feeling like I'm freezing even when it's warm. People say give it 3 months, 6 months, a year, 2 years, etc but it only seems to get worse. I have a bad feeling that even FX-322 won't help the horrible cluster of symptoms I have and I'm just exhausted.

 

[FGG]

Midrange is usually the range to increase to help hearing speech, but you probably have tried this.

Wait... what? I can't be on here much... Lenire seems to have fizzled... University of Michigan has their travel restrictions for their trial... and they are so slow... OTO-313... seems like nothing? OTO-413?

Someone please catch me up...

I have severe arthritis where I can hardly open my Turmeric bottle, inflammation, severe tinnitus and hyperacusis, several bad discs in my back (which led to the tinnitus)... so much fun.

Welcome back. So sad to read your updates. I was hoping you'd be better...

Very briefly:

OTO-313 had good results and are set to recruit for Phase 2 (and are extending past the 6 month time frame).

OTO-413 is for synaptopathy, different kind of hearing loss than FX-322, responsible for "hearing in noise difficulties" also linked to tinnitus. They had good Phase 1 results but are pausing to redesign a next trial (they will be on the Tinnitus Talk Podcast soon so maybe we can have an update on both drugs).

FX-322 repairs cochlear hair cells which are linked to hearing loss and resultant tinnitus. They are about to release results any day that will include tinnitus results.

SPI-1005 is a new one of interest. It reduces tinnitus in Meniere's patients and helps with neuroinflammation and even may hold promise for hyperacusis.

Refresh my memory, did you have any hyperacusis or just tinnitus?

 

[Zugzug]

Zugzug, I am sorry to read your story. We have all list so much. I wonder if mine is autoimmune damage too but they all say no. I know I was flaring in other parts of my body when this started. I also feel I am getting worse and this is an active process evolving in real time but I am constantly dismissed - this is despite my ESR and CRP being high when this all started. I don't know what those levels are now. They won't test me. The reason they say no is because my hearing is low normal with minor loss at 8 kHz. They say if it was autoimmune I would have had drastic sudden hearing loss.

I am wondering what your hearing loss is like?

I'm not officially diagnosed yet. To be honest, nothing totally fits, but I do have a positive Sjogren's blood marker (SSB, less important than SSA apparently). I've also read that early Sjogren's can take on a hardcore neurological type. Ears can also be involved, though you don't see what I have often.

If one made a pie chart of my situation, the biggest piece would be Sjogren's, then a big piece of "other autoimmune," then a smaller piece of "other, unknown."

After much deliberation about what I technically have going on, I don't think I have AIED, at least by the canonical presentation of it. My doctors don't think so either.

I have severe loudness hyperacusis (and tinnitus), where my ears can't tolerate noises. It feels like nerve issues. There's actual science behind why AIED acts the way that it does. It's often quick and asymmetrical. Or by "quick," it acts quickly, but may go in and out of remission. This makes sense because there are so few hair cells so that any direct or indirect immune response that affects the hair cells is likely to be fast and extremely sensitive to which side is hit first.

The things that worsen my condition are inconsistent with hair cell damage. Exercise was like the worst thing for it and I've communicated with people with AIED who all say exercise either doesn't hurt or helps. Even low level noises makes my startle reflex worse. If I was undergoing hair cell loss, even under the theory that I have hidden hearing loss, it doesn't make sense that at 2 years in with such a severe problem, I would have such razor sharp (too sharp) hearing in all frequencies. My initial audiogram was measured up to 20 kHz and looked very good. I also had a small dip at 8 kHz, though still in the normal range.

I think it's neuro Sjogren's. When I developed the disease 6 years ago, my very first symptoms were neurological. It makes sense that this flare up is also neurological.

Do you have a backstory that suggests autoimmune? Doctors can definitely be dismissive.

 

[MRItechssuck]

Refresh my memory, did you have any hyperacusis or just tinnitus?

Thank you... I was hoping you had improved as well... that was a much appreciated recap.

Everyone is fortunate to have you on this forum.

I have hyperacusis in my right ear, and I need to keep it completely plugged up if I leave the house.
Left ear... someone can slam a door... fine.
Right ear... if I flip a light switch on too quickly, I get a stabbing pain... click a medicine bottle, etc.
I have trained myself to plug my right ear when opening a soda can.

With my arthritis, I haven't taken Ibuprofen since the MRI... as you know how medication can worsen the ears.

I guess I will never buy that '69 GTO convertible I always wanted.

Thanks again.

 

[GBB]

Tinnitus making me feel like Patrick Bateman today: "there is an idea of a [GBB], some kind of abstraction, but there is no real me, only an entity, something illusory, and though I can hide my cold gaze and you can shake my hand and feel flesh gripping yours and maybe you can even sense our lifestyles are probably comparable: I simply am not there."

I feel technically present but wholly vacant from daily life.

 

[twa]

@AliasM, I completely empathize with your struggle, and you wrote exactly what I say to myself everyday. I don't want to die; I want to live a full life with my husband and children! Instead H is torturing me to death. I'm the complete opposite of a success story, but I wanted to offer you some hope. You are very early into tinnitus & hyperacusis (I know 3 months of this hell seems like forever, though) and this can still improve dramatically for you.

I personally know one mother who developed pain H and screaming tinnitus 3 weeks postpartum. She protected her ears when she could considering she also had a new born to take care of, and she improved over many months. She still has mild H now, but she can live her life.

Hang in there!

Great story!

 

[twa]

I share quite a bit of your psychological profile. I hate false hope. I'm like 10/10 fact-based, evidence-based kind of person. I studied math so my brain is literally trained for proving things with logic only. I don't even believe in FX-322 for myself (I have a dark, progressive, complicated, and severe form of hyperacusis that isn't noise induced).

As far as "achieving things in life before their situation began," I think you need to get outside of your own head a little bit (and I say that lovingly). You're right; you are amazingly young to have hearing problems. I feel young, but I'm a decent amount older than you. Let me share a little of my backstory so you know what I was robbed of.

High school sucked for me. I got to college and was a mess the first year. Smoked a lot of pot, drank a lot, wasn't very moral, frankly. Around sophomore year, I dropped the pot and found myself. I set out a goal (that would take from that point about 10 years) to become a math professor. I also met my (now) wife in college.

I get to grad school; my wife sacrifices by commuting far to work. I save my career by passing Ph.D. qualifying exams. Shortly after, my best friend dies unexpectedly, I developed symptoms of a systemic autoimmune disease. I was really sick. Flu-like symptoms, intense suicidal pain, fatigue, neuropathy, dryness, many other things. I spent the entire summer after my second year on a couch crying and wishing I was dead. I then had to take a semester off.

After the semester off, I was still chronically sick. I went to school, researched, took tests, taught with pain and fatigue. My "winter breaks" and "summer breaks" were massive pain flare ups after the stress of the semesters ended. This went on for about 4 years. I "managed" it with running and cutting out all sugar.

But through it all, I was successful. I was a good student in my class; my research was solid. I was going to make it. I was going to achieve my ten year goal. My wife, who had sacrificed to help put me through grad school (though I had a stipend), was going to be rewarded with a shared home; we were going to have kids.

Last year of grad school was absolutely brutal. I spent many hundreds of hours applying for jobs, typing cover letters, studying schools, practicing interview questions. I also was trying to publish my work to put me in the running for a job (market for professors sucks). I was fortunate to land a few on-site interviews for tenure-track positions. These interviews included multiple hour long presentations, meeting with deans, meeting with students, all sorts of stuff. One was two full days, no breaks. I did well.

I landed the tenure-track position I wanted. Knowing that I had a long-term position in the works, my wife and I began house hunting. On any given day, we would have to leave work and commute 3 hours (one way) to check out a home and quickly place a bid. After a number of months, we found a beautiful home (the one I am suffering in now) and got our offer accepted. The plan was to start a family in about a year.

I finish up my school year, typing my 150 page dissertation. We had to close on the house, deal with all of the pain in the ass insurance and homeowner bullshit (my wife did most of this, thankfully). My wife watched as the company she put in great work at for years refused to let her work from home to make our new living arrangement work. Regardless, she persevered and landed an amazing work-from-home job that she currently holds.

We were really going to make it. Two great jobs. An absolutely gorgeous home. A family in the future.

We finally move in. I'm not kidding you, five fucking days after we move in, my disease flares up. But instead of pain, I develop balance problems, tinnitus, and (at that point) minor hyperacusis. I'm not worried, I think it's just an ear infection or something.

I watch as it just keeps worsening and worsening. I lose my ability to converse, wear earplugs and earmuffs 24/7. I cry throughout entire car rides.

It finally got bad enough where I realized that I couldn't teach at my new job. I told my employer and we agreed to take the semester off. During that semester, I saw two upswings. I thought it was going away and that I could put it behind me. It wasn't stable enough for me to teach so we agreed to take one more semester off.

All I did was play ~40 dB music for 1-2 hours as an experiment to see what it did to my hyperacusis. That experienced dropped my LDLs by about 30 dB. I couldn't tolerate any sound. It even took me a long time to eat because I couldn't tolerate the sound of my own biting.

Finally, my employer and I meet and we (cordially under the circumstances) mutually part ways. We met through video chat (during COVID-19) and we fucking typed to each other. I lost my job through a typing conversation. (This is not any anger towards my boss, he was a really awesome guy).

Doctor finally puts me on long-term steroids. I improve by 20-25%, but level off completely. To this day, I am roughly around that level. I haven't left my house in a year. I wear earmuffs 24/7. I can't talk, can barely tolerate whispering. I was rejected disability income. My wife also had her life robbed. No kids for us anytime soon; she tiptoes around her own house. On top of providing all of the money, she has done most of the house work over the past 2 years.

I don't believe in anything. I probably have an autoimmune disorder attacking my nerves so FX-322 almost surely won't help much. Even if it was hair cells, my immune system will just kill them again. There won't be a cure for autoimmune diseases anytime soon. There won't be a regenerative medicine for nerves anytime soon (all pre-clinical). What am I living for? I'm living for the chance that it eventually gets so bad that I can't hear at all.

Trust me when I say, I know what it's like to be robbed of life.

I listen to The Paleo Mom/Whole View podcast on AIP (Autoimmune Protocol). Many people have changed their life with the AIP diet. I'm 5 months in with tinnitus and hyperacusis. I also started the AIP diet then, many of my symptoms are much better.

Just a thought. I'm sorry for what you are going through. Your wife sounds like a gem. My family do not try to be quiet or help in any way.

Blessings,
twa

 

[Luman]

It has been 5 months, but my tinnitus has not gone away.

I can't focus on anything. My nights have been nightmares. I have trouble sleeping. I am being tortured every day. My tinnitus is so violent, I can hear it even in a noisy environment. I have reactive tinnitus.

I'm very sorry to hear this. But, you're relatively new to tinnitus, at five months. It seems to be very bad for many until a year or so passes.This is what happened to me. Eventually, for the majority of people, the brain learns to tune it out. I know that this sounds like a lie, and impossible, but it's true. Your brain is smart, and it will eventually habituate.

Best wishes, and hang in there.

 

[AliasM]

I keep a diary of symptoms for my twice yearly rheumatologist visits so I know how I was feeling and when. I got a diagnosis of Psoriatic Arthritis in December 2018 after my son was born, but 2020 was a great year for me, mostly remission, until late August.

My neurological symptoms started for me on the 22nd August. I developed weeks of daily severe right sided temporal headache (sharp shooting and stabbibg pains) with accompanied severe global pressure headache after lifting a light weight incorrectly at the gym. Zero headache history in my life prior to this date. Going back over my notes though, I wrote down that I started flaring in my joints on the 16th August... so maybe it wasn't exertion headache from the gym? My bloods were taken a few days after my flare onset and my ESR and CRP were high which confirmed my autoimmune activity at least.

Long story short but I went to the emergency room late August my headaches were so bad. My GP thought I had Temporal Arteritis, an autoimmune condition. The emergency department did a Head CT (normal) then a lumbar puncture. It showed raised intracranial hypertension and they send me home on Diamox. The said I was too young for Temporal Arteritis. My symptoms didn't fit Idiopathic Intracranial Hypertension. I had no history of headaches, vision ok etc but they didn't care. They needed the bed for someone else so kicked me out. Regardless I took the Diamox in fear of going blind and waited for Neuro appointment. My ears started ringing soon after. Google told me that tinnitus was a side effect of the Diamox so I didn't stress too much because Google also said it goes away when you stop taking the drug and I knew the drug was temporary until I saw the Neuro. It was also quieter and nowhere near as high pitch as it is now. The intracranial hypertension turned out to be a misdiagnosis as I always suspected and the headaches and ringing went away anyway.

Fast forward to late November 2020 where I returned to the gym but I was not tolerating exercise at all. Coincidentally, I wrote in my pain diary that I was starting a new flare at that exact time. Days later those same 2 headaches I had in August were back. I went to Emergency 12 times in December. The headache was incredibly bad, and daily, 24 hours, and the ear ringing was coming and going. Surprise surprise, my ESR and CRP were high again but they said again that I am too young for Temporal Arteritis and I just had a migraine. Take Ibuprofen they said EVERY SINGLE TIME. They dismissed my high inflammatory markers saying they are non specific.

I was headache free 5 days over Christmas which was a blessing. On the 28th December in the evening though, another really bad one came on. The next morning I woke to severe ringing and it has never gone away. I have only gotten worse. It started in the right side, same side as the temporal headache, but moved to the left ear a week later. 2 weeks after that the pain hyperacusis set in.

The last 3 weeks my left ear is significantly worse and the headaches are back. No one thinks my issue is autoimmune though. Not the GP, the ENT or even the rheumatologist. They all go on about how I don't have the sudden deafness that autoimmune inner ear disease brings and how my hearing is fine.

I am so scared for my next autoimmune flare up. I might lose my hearing next time. I am due for a flare up and I am not on any treatment at all. I didn't take Methotrexate for my joints because the pain was always manageable and the side effects of Methotrexate were worse than my symptoms.

I think I developed an insidious autoimmune condition that is not in their textbooks that affected my ears. Everything fits. The flare of my joints, the headache onset, my blood work... all at the same time both times. Like you I think it is the nerve. I think the tinnitus I experienced in August/September was not a side effect of Diamox. Now I strongly believe that my ears were being attacked then but it was not severe.

I went for a repeat hearing test last week because the tinnitus and the blockage in my left ear has worsened and even the audiologist threw me out. He wouldn't give me a repeat hearing test. Totally unnecessary he said. My hearing is fine.

I have seen SO MANY doctors and none are listening. I have just been prescribed Propranolol and Amitriptyline as a migraine preventer. I don't know whether to take it or not. I honestly don't trust these people. They don't live with the consequences of their incompetence, I do... and AM. I am disabled now. In 3 months I have gone from being on top of the world to completely disabled and suicidal. Like a switch.

Sorry that was long. Hope it helps. Does it fit with your story?

 

[AliasM]

I have hyperacusis in my right ear, and I need to keep it completely plugged up if I leave the house.
Left ear... someone can slam a door... fine.
Right ear... if I flip a light switch on too quickly, I get a stabbing pain... click a medicine bottle, etc.
I have trained myself to plug my right ear when opening a soda can.

Thanks again.

Same with me. Pain hyperacusis in right ear. I need to keep it plugged even overnight because the sound of the crickets outside cause it pain. Left ear, no problem. Left ear has worse tinnitus though, and is my only ear with hearing loss. My headaches were right side and my tinnitus started right.

Audiologist and ENT told me that hyperacusis was an anxiety/emotional response and if I can control those, I will be able to control the hyperacusis. If it is emotional (and I agree that my anxiety and distress is off the charts) then why don't I have hyperacusis in both ears?