Reaching the End of the Road — Hyperacusis Caused by Cancer Treatment (Immunotherapy)

This is my first post, long time lurker here. I can say that hyperacusis alone has single handedly ruined my life.

A little bit of a back story. I am a cancer patient who went through a lot of treatments in the last two years just to live. Little did I know that the devil was waiting for me, waiting for the right moment, when I was the most vulnerable. When I got diagnosed with cancer back in 2019, I told myself, “this too shall pass”. It did. I was cancer free but unfortunately I relapsed as soon as the chemo ended. Again I was put on immunotherapy, it wasn’t bad, I mean it wasn't good but I had the will to live. I had a good job, I was young, everything was fine. My goal was set on the end line, the day I get off treatments and start going to work and get my regular life back. I was very healthy before cancer and relatively healthy even during the treatments.

In October 2020, I started noticing some weird dizzy spells. I was still on immunotherapy, it was my last cycle so I thought it could be because of that. But I started to feel these weird shocks from loud sounds. The first time I experienced it was truly horrifying, like the earth from beneath me had split in two pieces. Slowly but surely it started happening more and more. I identified the culprit to be sound, I was getting sensitive to sound. I have never been a depressed guy, even through my treatments I was always the one cracking death jokes. Hyperacusis made me utterly depressed, I lost my will to live. I made several visits to ENTs and audiologists but to no avail. They cared about my cancer but now that I am cancer free but suffering, nobody gives a damn! It continued to get worse and got to its full form by December, even my own voice hurts now but it is somewhat stable for the last month or so (it has not gotten worse, fingers crossed) but it is still very severe. I also have some reactive tinnitus but it is a non-issue, hopefully it stays that way. I don’t understand how someone can live like this, I try to avoid people, places, most of my days are spent hiding away. Sometimes I get tired and venture out which helps tremendously with the mood but is not so easy on the ears, also I keep reading how you should protect your ears at all costs! I live in NYC so naturally I am surrounded by a lot of noise living in a big city. I have loud neighbors and the screams of their children instantly make me suicidal. I have tried many times to ask them to keep it down but they just don't listen.

I have seen a few people on Tinnitus Talk saying, “hey these things are not nearly as bad as having cancer”. Well you are right, they are not, they are far far worse, cancer can’t even come close to the level of torture I am in these days. I was young, I had dreams, now I just wish my cancer comes back and kills me, because I am too much of a coward to do it myself! I am going to my home country in a week, I haven’t met my parents, extended family, and friends in three years. My parents live in a relatively quiet neighborhood and we have a pretty huge house, nice and quiet. Hopefully change of atmosphere and meeting people I love will help me in some way, I am just dreading the long flight. I really hope I don’t collapse from all the noise, I don’t know! I don’t even know what I am doing anymore in life. For the first time in life I am utterly lost. I am giving this two more months, if it continues to get worse or I see no improvement, there is no point to a life like this!

 

Your ears can still recover with time.
It can get a lot, worse. Keep the faith, you'll get better.

 

Welcome to the club none of us here ever asked to join. Sounds like you’re another victim of ototoxic medication.

It’s sobering and validating to hear a cancer survivor say this condition is worse than cancer. I can’t say what it’s like to have cancer but depending on what kind of cancer and given the choice it probably wouldn’t be as a straightforward decision as people without cancer would think. 50% to have my life? Yeah, I think I’d seriously consider it.

The best thing you can do now is protect your ears, especially for your long flight home. Make sure to get some kind of nasal decongestant as well for the descent - the last thing you want is some kind of barotrauma. Make sure you also get ear defenders too for the airport and takeoff in the plane. It will be easier on your ears to equalize than ear plugs.

The good news is we may be the first generation to walk on this planet and see a treatment. The research is promising and if hyperacusis is associated with hearing loss then there’s a very good chance regenerative drugs, which are around the corner, will help us.

 

I too am a cancer survivor and I would rather go through all of that again than the hyperacusis I have now.

 

What do you mean when you say it can get worse? You mean the hyperacusis?

Not just worse! It doesn't even come close, it is way worse. Mind you the treatments I had were the most intense forms of chemo, so I didn't have an easy route. Left me with episodes of dizziness, weakness and nausea but that's about it. I wasn't forced to hide away like a hermit, I met my friends/family, I was happy and not in pain.

I am always confused about how much should I protect? Should I protect against everything and live in isolation? I am not even sure if that is possible. Some people say overprotect, some say under protect. I don't think a cure will come anytime soon. Reading some of the research it looks like we are still not even sure what is the root cause of hyperacusis, so how will we fix it? Not to mention that hyperacusis is a blanket term. Some people gets ear pain that lasts for days, whereas some experience pain just when exposed to sound. For example I had leukemia but you would be surprised to know, how many subtypes of leukemia there are! Each has a different prognosis, some are chronic, some acute. Likewise I think a lot has to be put into understanding hyperacusis first, let alone cure it. But it all starts with healthcare professionals like audiologist acknowledging that this is a disorder in the first place, instead of something in my head due to depression. Sending me off to CBT like some therapist will heal my physical pain, why don't you give me a handgun to blow my brains out!

I do hope I am wrong and the cure to hearing loss, cures hyperacusis!

 

I'm so sorry this is happening to you. Hyperacusis is difficult. Mine also started about the same as yours did. I never knew such a thing existed. I wear earplugs when I go outside the house or walk in my neighborhood. When I know it might be loud in the car, I'll wear earplugs. One day this week, I realized I had only worn earplugs one time during the day. I think it is starting to get better, it's still there, but better. I have hope for you also that it will get better with time.

twa

 

It breaks my heart to read this. Managing to overcome cancer and ending up dealing with hyperacusis. I guess this is a good thread to cite whenever people say that we should be grateful to have hyperacusis and not something like cancer. Watching my father dying from cancer was hard af. He suffered tremendously. Everybody could see that. People to understand have to see the suffering with their eyes. Tinnitus and hyperacusis are invisible, therefore we have to deal with all the crap of society's incapacity to acknowledge our kind of suffering.

 

This resonated with me. I am so sorry for all of this. There is a lot of contradictory advice out there, and hyperacusis in general is just one huge conspiracy (literally). I am personally in the protect team. I feel it's better to go that route than risk worsening through damage.

From what I've heard, chemo is horrible for all sorts of reasons. Especially on the ears. I am hoping that you improve from this.

Any way to get back to your home country? I moved away from home to a quieter area and it's been much less stressful. I can't imagine being in NYC of all places with this. I hope your family can understand this and make the necessary accommodations for you.

I have never had a cancer diagnosis but I have loved ones, survivors and those who lost their lives to it. It is screwed up but I pray for a diagnosis every day. I am guessing I'll get one eventually. I would hope to get a terminal diagnosis so I have an excuse to live my last days to the fullest, even if my ears scream at me. It's better than living in fear and wasting my days away dodging land mines (pots and pans) in hopes of eventually getting better.

My old therapist told me she had a client who was a cancer survivor. No hyperacusis but severe depression. She said "I'd take cancer again instead of depression. People empathize with you, they give you flowers, they walk for you. Doctors listen. They don't treat you like you aren't trying hard enough."

That rings true for us. We get no ribbons or walks. Nobody stopping us in the street seeing our earmuffs and groveling at our feet saying how brave we are. No fundraisers raising millions in our name. We get treated like maniacs and, occasionally, laughed at.

I saw my aunt, my favorite relative, wither away from pancreatic cancer and it was heartbreaking. She was the strongest woman I knew; survived her husband running away with a teenager and leaving her with 2 kids to raise with my mom, among other tragedies. I envy her for a multitude of reasons. Her strength, resilience even see death's door... and her diagnosis, period.

I want to believe there is hope. We are still leagues closer to treatment than we were 10 years ago. I'm hopeful that FX-322 and others will do anything, and even if not, provide some insight on what the cause(s) may be.

I speak with Bryan Pollard here and there and he says the first step is educating the medical community, which he has been fighting for. It's a really small step with many more after that, but it's something. We have a voice, even if it's really small whisper right now. I think it is helpful to hold onto these grains of hope. There is a little bit of something, which is better than nothing.

But in the end, I still totally understand where you're coming from.

 

By could get worse I do mean it could be worse if you get subjected to any more trauma to your ears through experiences talked about here, like dysacusis, reactive tones over the real world, wavering, etc.
If it's just ringing, or some H, count yourself at least semi lucky that there's a definite chance of healing.
I do firmly believe that you can recover but it will take a long time man, like give yourself a year.

 

I would say if you know something is going to hurt you, such as opening a squeaking door, making a hot drink or whatever it might be, then sling on your earmuffs. You wouldn't walk on a broken leg because you know not only how painful it would be but also how much further damage it could cause. I always say if you're unsure you are better off protecting than not protecting. You certainly can't do more physiological damage, that's for sure.

The advice which says to expose yourself to sound is based on old science which is not grounded in any kind of research that demonstrates what happens at a peripheral level. Moreover, the studies that show TRT helping hyperacusis are not measured against placebo and also do not take into account the fact that the body may have healed by itself. There are many cases of people get hyperacusis, decline TRT, and then improve. So TRT, which is recommended on the basis of noise exposure, has very little science backing it. The science behind it for tinnitus is even more damning.

Hyperacusis does indeed to have a broad set of elements/symptoms and perhaps categories, perhaps some psychological, but the idea that it is something that is "stuck" in the brain is just lazy science, period, although there is evidence to suggest that some cases of hyperacusis have a heightened centralised gain, and this is only inferred from changes in ABR brain wave ratios (V and I or III and I) observed in mice.

Remember, the same people telling you to not protect are the same people who say more than half the frequencies in the human cochlea serve no purpose, and yet the latest research is showing that these higher frequencies that audiograms don't test for are indeed critical to our perception of clarity.

As for whether regenerative treatment being able to help us, the jury is still out, but I for one am hopeful. When I strip down all the latest research and lab experiments and take a step back, I remind myself of anecdotal cases of people who see their symptoms improve after receiving cochlea implants. This would suggest then that the issue, at a very basic level, is one of input, and regenerative medicine will almost certainly prove to be a much more thorough and gentle way of restoring input than a cochlea implant.

It is also speculated that hyperacusis has an inflammatory element and that a drug like Ebselen could help us due to it's ability to cross the blood-labyrinth barrier as it has a very small molecular size compared to other anti-inflammatories. There are studies in mice showing Ebselen treating antibiotic induced hyperacusis in mice, although there has been some debate as to whether the hyperacusis the mice were suffering from was loudness hyperacusis, pain hyperacusis or both, and whether Ebselen helped with only loudness hyperacusis or both.

What is certain is that treatments for ear-conditions are way behind diagnostics. That means that we should eventually be able to eliminate possible causes of hyperacusis by seeing what doesn't work. It's possible that neither FX-322, OTO-413 or Ebselen will help us and if that's the case, scientists will have to rethink again. Personally, having read a lot of the medical research and exchanged ideas and thought experiments with some very intelligent members on this forum, I am inclined to believe that one of if not a combination of these drugs will restore us to some kind of normality. I will not go into detail here as to why that may be the case but am happy to point you in the direction of some threads that could shed some more light on this. In short, these may not be a cure, but they could be a treatment. But I'm inclined to say they'll be at least one or the other.

 

It truly is devastating, I fought cancer for two years and I don't think I have the patience to go on fight another battle. Mind you I had the most intense cancer treatments, I didn't have the easy way out, so you are right in quoting this thread whenever someone brings up the argument.

This was really moving, I am sorry you are feeling this way. Yes it might sound twisted but I wish that my cancer returns too! I am in remission now and still have to take a lot of meds everyday because I still have a high relapse chance. I often miss my meds in the hopes that my cancer comes back, I know it sounds fucked up but I do that often. Once I stopped going to my oncologist, she is the only doctor I would say who gets me and truly cares about me! I guess she thinks of me as some she invested so much time in and doesn't want this to overcome my life. I was crying to her on the phone, I told her I don't want anymore treatments and that I would pick death over hyperacusis. She at that moment truly realized how serious I was about this!

You are right, when you have cancer everyone is so sympathetic. I remember getting cards and phone calls from people I barely knew. My boss would call me every week, telling me how brave I was. I still find people around me are very understanding when I tell them about my ear issues. I guess because they feel that I have been through so many treatments, surely that would leave a mark on my body. I guess I feel somewhat lucky'ish in this aspect that I got cancer, I know sounds twisted! I sometimes wonder if I never had cancer and all of a sudden started developing hyperacusis, like many people do. Surely I would have been laughed at and my family/friends would think I have gone nuts, so I know it is harder for the average joe who has to fight this battle alone and get ridiculed. I blame the ENT doctors and audiologist for this, who brush of tinnitus and hyperacusis like it is a non-issue. So many people commit suicide over this yet these doctors refuse to bat an eye.

I want to move back to my home country so bad, for one the savings I have here would turn into a fortune over there, USD conversion rate is pretty high. The second that my parents are filthy rich and back home and would gladly give me one of the many houses they own. I would also have their love and support, something that I miss terribly and they are really very loving. The area is really nice and secluded too, so it is not like the congested New York where I have to pay $2000 for a crummy studio apartment with traffic right outside my window. The only issue is I have really good insurance here and some of the pills I can't get back home, which are really crucial for my cancer. I guess I am going to go and find out, if I am just really happy there, screw cancer, it can come back for all I care. Better than living with hyperacusis in NYC. It is just amazing how drastically this thing has affected the way I think about life now, something even cancer couldn't do!

 

I assure you bud, I don't have just "some hyperacusis"! My own voice and chewing hurts so it is pretty debilitating, otherwise I wouldn't have posted. I do hope you are right though and it heals with time. As for precaution, I try to prevent further damage. I wear earplugs everytime I go out, have earmuffs with me on hand. But still one has to survive, I have to go to my appointments, buy groceries, not to mention the long flight coming up.

I agree that TRT and CBT are no cures. In fact it sounds outright dangerous, on one end they say to protect yourself from loud noises but they are ok to put things in your ear to make sound for 8 hours a day. My ears need healing, I would say this causes more damage than cures, how it helps people is beyond me. These pseudo treatments also hinder actual cures as people think we are just getting along fine with CBT and TRT etc.

As for protecting my ears, I do take caution now after some tough lessons and listening to my clueless audiologist. I wear earplugs everytime I am out and have earmuffs at hand for when it gets louder. Have adapted hobbies that are less stressful on ears, like watching movies with subtitles and no audio, reading. Unfortunately one most still survive, I have to go to my oncologist every other week for appointments and stuff, buy groceries. I am also a sucker for sports used to lover soccer but too much shouting so have opted out for volleyball and badminton, in which you don't yell at each other a lot lol. Playing just elevates my mood greatly so I figured I should at least play sometimes, I do still wear earplugs and ask my friends to keep it down while we are playing. The point that I am making is that it is virtually impossible for me to protect against hurtful sound. I do exercise a lot of caution now but one most live and survive and avoiding sound is impossible!

I haven't researched about it much and it clearly looks like you are more knowledgeable about this than I am so I will take your word for it. When do you think these drugs would potentially come out, I do hope I am proven wrong and a cure comes out real soon. I do still believe the problem starts with out so called health care experts like my clueless audiologist, who think it is all in your head!

 

Amidst this crappy shit and misfortune, at least it seems like you have a choice to go somewhere safer for your ears let alone the fact that you have a system to support you financially. This is huge.

At this point I would give everything to had a similar option on the table, so I wouldn't think about suicide as my only option.

New York is noisy, I was there one year ago when I wasn't that bad, hyperacusis was rather mild. No pain. I keep reading people who live in the US, complaining a lot about how noisy is their place. Well I gotta tell you, even New York was a "walk in the park" noise-wise compared to where I live. But yeah I get the point. Flee NYC now before you get any worse, since you have that option.

 

I am sorry about what you are going through. People's take on cancer and people's take on hearing problems differ a lot:

- If you recover from cancer you defeated cancer, you are a hero.

- If you are crippled by hyperacusis or other hearing problem, you are just weird.

That's how people see things. Actually there is another aspect of this: hearing issues make others feel bad, they cannot accommodate all the time to someone who cannot hear well, or cannot be around loud sound, so it is not only the sufferer's problem, it becomes a problem for your friends, couple, family etc... that's what makes it hard to bear.

As for NYC: if I were you I would just move. That was my choice when my hyperacusis was severe. I moved to a small beach town and never regretted it.

Good luck!

 

I can relate to this, as I did have cancer as well back in 2017. I would rather go through those treatments and that hell and not this hyperacusis that I am left with after chemo and other meds I have been on since.

I feel for you! Keep the faith. Hopefully the new treatments coming hopefully soon will help us!

 

Hi @luckyme, I was just wondering how you were doing?

 

This deserves a bump.

@luckyme

 

As someone who has gone through that kind of extreme hyperacusis (whispering to someone, chewing, typing "silently" on my keyboard), I am sympathetic.

I hope things got better for you. Good luck!

 

Did yours improve on its own or did treating your otosclerosis help?

 

My stapedotomy solved it for me.

 

Is there any theory as to why that is?

 

Hi guys, I am doing fine. Going home was a good decision and I feel more relaxed.

Unfortunately my hyperacusis got worse after a setback, it is crazy how cautious we have to be around sound. Just one small gathering, I thought I would be fine without the earmuffs but baam.

I don't have the will to live anymore. My latest reports also show some detection of cancer again. I guess I am happy, in a twisted way, I want my suffering to end. I am too afraid to do it myself, so I will just let cancer run its course. I have stopped taking my cancer medication, haven't really told my family yet because they won't be happy.

I hope doctors take people like us seriously in the future and there is a cure soon for this hell on earth!

 

Hey @luckyme.

I can’t imagine the BS you have been through. Handling cancer is enough to break most people but you were really dealt a shitty hand and yet you still fought. I feel so sorry that this is what we have to do to escape this terrible disease. I don’t know if I’ll ever get back to where I was but I know the feeling of having it all then having nothing at all. I can’t even enjoy my kids for 5 minutes as their voices aggravate my ears and every minute of the day I think about this awful condition, I’m present but my mind is elsewhere.

I wish you all the best in whatever you do. You didn’t deserve this but you fought harder than most people would and that’s highly commendable. I hope that some miracle happens for you.

 

Thinking of you and praying for comfort, strength and hope today.

Blessings,
twa

 

Not to be too over confident, but you stand a large chance of getting better. Hang in there.

I at one time (3 years ago) experienced the hyperacusis "fire" in both ears when the wood floor creaked.

Today, I drove at 75 mph with the windows cracked and the radio playing (audio book) at low level. I never thought things would improve. I started to improve two weeks after my lowest point (pain levels).

Currently, I will plateau for a solid 3-6 months then experience more improvement. I actually had a setback two weeks ago and now back to baseline. I can honesty say that I would be further down the road of recovery if I had not gotten too over confident on a few occasions.

 

It takes SO LONG to SLOWLY improve.

Aren't benzos / steroids an option whilst dealing with cancer treatments to tone down your tinnitus/hyperacusis hell?

Just letting it take you when there's still hope out there down the pipe seems nonsensical... not to downplay everyday being suffering. There are stories of improvements, we should be part of those stories.

 

You may want to try light therapy - aka LLLT, Photobiotherapy.

Hyperacusis is mostly caused by nerve damage inside the ear, as the nerves have pain sensors, sound becomes painful. But the good news is that nerves can heal over time, but it takes a long time and new damages can cause setbacks and slow down healing.

Light therapy is simply sending photons inside the ear to increase ATP production and speed up the healing process, there has been many studies done that shows it can help healing of nerves or brain damage.

The treatment itself can be very cheap and has no real side effects. All you need is a powerful LED in the near-infrared frequency range of 670 to 1000 nm, such as 850 nm as it can penetrate deeper in the skull. In the past people used un-focused lasers, but nowadays LED are much more powerful for a fraction of the cost, and safer than lasers.

I used that approach after my noise trauma, and after a few years I am 90% cured of hyperacusis.

You also need to protect your ears - there is no such as over protection. I would avoid going to loud bars in an enclosed space or clubs even with ear protection as the bass frequencies cannot be blocked by earplugs and can cause damage if you have weak ears.

 

Hi guys, I know you all mean well and I know your heart is in the right place. Sometimes I wake up in the night and cry, "why? why are you letting this thing kill you?" It is just some stupid thing wrong with your ears!" But the day goes by and I still don't take my medication. I keep questioning as to why it all happened to me! I was young, athletic, had no medical issues. All of a sudden I get hit back to back twice with cancer and then as if my suffering wasn't enough, hyperacusis and tinnitus came along.

I know there are success stories but there are stories about people not getting better. To be honest, death doesn't scare me as much as a permanent life with hyperacusis. I spoke to my parents and girlfriend about assisted suicide, I might be able to get it as I have cancer. But the thought of me dying makes them cry, my dad says that the biggest grief for a parent is the death of their young son. Why must I live? Are we all their pets? Made to suffer just so our family can spend some time with us while we wither away in pain. Each day I find myself moving closer and closer to killing myself, for there are fates far worse than death!

 

Damn man, I hope you can somehow get better. That was sad to read.

 

I'm very sorry to hear about your situation. How long do you think it will take for the cancer to take over now that you're stopping your meds? I know you want to end your suffering and I don't want to give you any false hope but you never know what might be around the corner that could help us.