Authored by Jerad J. D. Rider
“I only see my son at night when he is sleeping soundly,” Erin wrote while wiping tears that welled up in her angry eyes. “This is so unfair!”
Knowing all the things you’ve lost may never be returned? That may just be the cruelest part of having these conditions; that tinnitus and noxacusis don’t supply a lost and found when they are catastrophic. In many cases, anyway; there’s always an exception. Nonetheless, it’s baleful, and haunts this mother, 32, that lives in South Carolina; who mourns her absent motherhood and wishes for a miracle. Witnessing this current loss is utter devastation, and knowing that a second chance to closely raise her precious son is getting more improbable as days become the span of months and months portend the threat of years arouses monumental dread she hates to think about.
“I have to get him back!” Erin exclaimed. “Losing my son is too much! He’s autistic and doesn’t understand why mom is gone, or how to be more quiet. He makes a lot of noises—yelling and expressions of excitement—and they permanently worsen my reactive tinnitus, which is catastrophic. To try to block the noises, he lives downstairs and I’m upstairs. My husband does all the work to care for him. I have to insert earplugs and wear my earmuffs to block the distant sounds my child makes below my bedroom while I’m hiding like an outcast. Even protection isn’t enough to be around him; I still worsen. This shatters my heart into a thousand pieces! I love my son and want to be around him more than anything!
“All I can do is hope I’ll get better with time and silence, allowing me to be around my kid in double ear protection. But oftentimes I wonder Is this how it’s gonna be with no chance of recovery? Will I ever be a mom and see my son again? Like really, really see him? Not as an observer from a cut-off distance, far away, that never interacts, but as a present mother. Will that come to pass? This is very cruel. Malevolent conditions. Inhumane and sickening.”
Very sickening. They rob a child from his mom and make her like a prisoner that hides from every sound, because the sounds of daily life will bring the brutal consequence of further aural torture. Permanently, too, as Erin has discovered. Sounds are just too prominent, part of every little task in life’s complex arrangement, and how does one conduct a life when sounds are toxic kryptonite, even with protection?
Sayonara, precious life; that’s what all this suffering amounts to, isn’t it? Erin’s former glowing life a bygone memory.
And understandably, she is furious, since bad advice from doctors is the reason she’s in carnage.
Patients who battle sound-reactive tinnitus and different types of hyperacusis oftentimes reveal it was bad advice from doctors which ignited their malicious flames beyond extinguishment; that doctors lacked the know-how to engage these rare conditions, but never showed reality: that they were in the dark as much as those athirst for shafts of light to work out their predicaments. So that was why those problems struck those unsuspecting patients—they blindly trusted doctors, just like Erin did.
She’s standing in a line among an endless list of victims, the Aural Victim Line, with shadows of regret which cast their overwhelming dread across a room which has no exit, as thoughts of unforgiving rage encircle her existence (It’s medical malpractice!, although that isn’t provable in many situations; invisible conditions make it near impossible).
Erin herself has three to battle: reactive tinnitus, now her biggest problem (10 different tones . . . a cacophony of pervasive phantom noises, disgusting and deafening and neverending; and daily she gets brand new tones whose loudness increases from sound exposures and the benzodiazepine she’s tapering), pain hyperacusis, also known as noxacusis (described as an “intense gripping sensation” around her ears and face that’s instant and delayed when hearing certain sounds, but more delayed than instant, lasting hours at a time), and MEM, middle ear myoclonus (“fluttering or pulling” in her ears with loud SNAP! sounds, and she said it’s a sign of middle ear damage).
“I think my history of noise abuse probably paved the way to get these conditions, blasting music in my car and jamming it on my headphones as well. Plus I was on Wellbutrin and gabapentin, very ototoxic meds. But it was a specific song with lots of heavy bass that played from this super powerful speaker system in the car that likely did me in: Vivien by Crosses. I remember thinking It feels like this song is sending tons of vibrations through my brain. Maybe it was. I don’t know. But all that history got me here and then the doctors dropped the ball, making my symptoms grow to catastrophic instead of staying mild or healing.
“Had they pointed me in the right direction in the early stages of tinnitus and hyperacusis, I could have avoided the worst of this nightmare that now has no solutions. I could have saved my chance to be a mom! In that critical window of recovery following the onset of these conditions, a bunch of mistakes destroyed me, which you’ll read in my account. So my body didn’t have a chance to recoup, and now it’s like I’m too far gone for that. You know, I think it’s kind of like catching cancer in its early stages—you can stop it, thankfully—but when you catch it too late, it’s a different story; it takes over and undermines the body.
“When things got bad initially, I didn’t know what was happening and went to the ER. A doctor gave me a benzodiazepine (Ativan), naming stress as the cause of everything. He didn’t mention hyperacusis, nor did he know what to make of this (I don’t think he believed it), but he said the med would help the muscle spasms in my ears. At first it did, and also helped the tinnitus at first.”
(Although later Erin would learn that such reprieve was like a false mirage, tricking her perception. Would disappear into the air and usher in calamity, as she would get the dreaded tolerance symptoms many people cross with benzodiazepines, beginning with the taper, and a symphony of tinnitus tones would fire up, catastrophic and reactive to every sound almost. Before that would arrest her, she’d see some other doctors.)
“Next was an otologist (a skilled ENT), and he also pulled the stress card and dismissed my symptoms as no big deal (even this ENT didn’t believe I had sensitivity to sounds, and he was an ear doc!), but worse than that, he said I should keep exposing to normal sounds.”
(She’d follow his command, which down the road would prove to be another bad command, when time would bring her worsenings for all her aural symptoms. Just like Christmas Day, when something would happen because she wouldn’t be as careful with sounds as necessary (doctor’s orders, after all): dropping a plate in the sink with a booming CLACK! sound, and then someone yelling in a video game; that, too, wouldn’t help. And not to mention the countless other exposures to everyday sounds, like talking, cooking, using the sink and shower, and being around her son. Eventually, all of these would blow her aural engine, like a hard-run car that isn’t equipped for such abuse.)
“During the appointment the doctor looked at me like I was loony tunes. I told him I had awful pain in and around my ears when exposing to sounds, and that when the pain would come my ears would ring like crazy. He said that that was normal, like I had a migraine issue going on, and then prescribed me Nurtec, a med to try for that. Of course it didn’t help.
“So then I saw a neurologist who also said my symptoms were caused by anxiety and stress (by this point such a claim was what I had expected), and didn’t believe what I was saying, just as the others hadn’t. But he ordered an MRI to rule out major things, despite me saying earlier that I had unstable tinnitus and sound sensitivity. At the time I didn’t know what hyperacusis or noxacusis was (not long after I learned about them on the Internet), but I thought the doctor would know what was going on. And being a newbie to all of this, I didn’t understand that the MRI was risky, to be honest.”
(The doctor had assured her that the MRI would be a cinch. “It’s a safe procedure, mam . . . not a thing to fret about.” Yet later it would dawn on her it wasn’t safe at all. She’d do the stupid MRI and worsen her condition, where then her sensitivity to normal, daily noises would start to plummet even more!)
“Finally I saw an ENT who did believe me when I said I had tinnitus, hyperacusis, and MEM (I had diagnosed myself based on research from the Net). He was the only one who believed me of the four, and he officially diagnosed me with these conditions.
“I retreated to silence once I understood the truth of noxacusis, and how the pain from sounds was dangerous for my ears. Thankfully it helped to tame it some, but only as long as I stayed in silence. Silence hasn’t done a thing for my tinnitus, though, which worsens daily no matter what I do. Maybe because it’s impossible to get complete silence, even with protection. Total silence is a lie, as sounds are everywhere. A nearby road with traffic bleeds through the insulating foam of my earmuffs and earplugs. While my nox has gotten better with my best attempts at silence, the faintest sounds continue to worsen my tinnitus. The benzo I’m tapering is probably adding to all this as well. I have a lot of anger at these doctors. They led me to the gallows, as now I’m trapped in this unsustainable situation where I’m grieving the losses of my son and life.”
Erin’s story highlights why it’s critical for doctors, and also audiologists and other specialists, to know what noxacusis is and rarer forms of tinnitus—both misunderstood, so much so that every doc (of many that she counted on) didn’t give her good advice or offer her belief. Except the final ENT who did profess that he believed and diagnosed her formally (after she had searched the Net and pitched him all the info), but didn’t give her good advice on how to handle everything. (Trusting the Net, support groups on social media, and platforms such as Discord, instead of docs and hospitals, are usually some shady things, but not with these conditions. Exceptions to the rule, which adds to all the irony. The truth about it is, is that the patients themselves are the experts on what they have, just as Michael J. Fox remarked about Parkinson’s. And because doctors so often fail hyperacusis and reactive tinnitus patients, the patients take the reins, becoming their own doctors. They do not have a choice. They have to to survive.) These illnesses are finicky, fragile and precarious. Wrong moves on the chessboard equal cruel catastrophe. Had all these doctors Erin met administered the proper care—or even one, for heaven’s sake!—perhaps she wouldn’t be here.
The problem is, however, is many facing these conditions wrestle with the “pushback.” They’re not believed or just assessed as cuckoo or imagining the problems with their broken ears, shocking insults injected by the people we’re conditioned to trust in our hour of need: doctors and others in the medical establishment. This isn’t all doctors, of course it isn’t all of them, but it’s enough that patients feel shafted or mistreated.
When doctors don’t believe them, that certain things aren’t possible because they haven’t heard of them, clinging to closed-mindedness is what it really is (and the irony, of course, is medical literature exists for these conditions; so ignorance is recklessness—there’s no excuse for it). And sometimes, even worse, they know of their existence (papers ripe with literature provided by the patients), but still hold to their disbelief, strangely aligning themselves with denialism, a psychological condition where a person bats reality away in some distorted aspect. Well no archaic outlooks should have their footing in the medical establishment of 2025.
These medical people are often intelligent and trained to be adaptive, so they should know better. Good doctors do exist, but when it comes to certain ear conditions, finding them is like a needle in a haystack, so people like Erin pay the price.
Erin’s grim account is meant to educate the world. And doctors, hopefully. Let’s hope they learn a thing or two, sparing future patients from the Aural Victim Line, searching for an exit in a room which has no exit.
*Patient’s name was changed for privacy purposes.
*AI (Artificial Intelligence) wasn’t used to write or edit this article.
The drs never told her to block her ear canals, that is why she developed reactive tinitus and TTTS it’s the same story .
She followed the advice by the people on forums and ended up like them.
James u didn’t read the story just the headline I think. Cuz what u said completely contradicts what the story says. Erin WASN’T protecting or blocking as u put it bcuz doctors told her not to and she got catastrophic worse from that. Then she started to protect after all the damage did her in
What damage you have no clue about this condition.
You can’t damage your ears by everyday sounds that only you percieve as loud, hyperacusis increases your auditory gain, which is in your brain.
You cant develop TTTS from paperclip falling.
Everybody blames the drs. Even I did. Guaranteed she was manipulating her hearing when hyperacusis started to get that bad.
James, what you’re talking about is LOUNDNESS hyperacusis (the brain gain issue). There is another hyperacusis form called PAIN hyperacousie or noxacousis , which is a compté different illness (from the inner ear, see Dr Megan Wood research). And you can surfer both. So, please don’t judge, that’s extremely complicated for everyone, they’re is no generic solution for both illness.
You are right I didn’t read the article, as its always the same thing. I get upset seeing people suffering and doing the wrong things which you can tell as they use words like protection.
I have now read it and it says it started of as hyperacusis then developed into reactive t and pain.
It is the same story as everybody else on reddit. It is the same pattern.
Hyperacusis is only made worse by using plugs or muffs and sitting in silence .
So the hyperacusis could not have got worse without doing that.
As for the other meds who knows if they made it worse.
But reactive tinnitus and TTTs is very common in people with hyperacusis who use ear muffs or plugs.
James, what would your suggestion be? I am starting to think that silence is the way to go and noise therapy doesn’t help at all.
Silence will make your hyperacusis worse, it is a fact. That is why DRs and all medical websites advise against it.
Tinnitus, hyperacusis all requires retraining. You can do with normal everyday sounds. Just don’t plug or muffs or anything stupid like that.
You have no idea how bad it can get.
Hi James,
My TTTS appeared as I was sleeping and woke me up. I had never used ear plugs at that time except for at a concert or super loud place like a festival. I didn’t even think I had hyperacusis for awhile because I didn’t experience issues with my son screaming. But I was showing a lot of hyperacusis symptoms to low frequency noises. I just didn’t realize it. My tinnitus turned reactive around the time I developed more severe TTTS and I hadn’t been using plugs. I didn’t hunker down on protection until it got bad.
James. Your advice is what has killed many people with this. Gaslighting them to keep exposing when regular sounds are doing damage. You obviously have never had these afflictions to any severe degree or youd know the truth.
Excuse me, the treatment for both hyperacusis and tinnitus is sound therapy. Reddit DIY home treatment of using plugs and muffs when you have hyperacusis is what causes people symtoms to become severe, it’s a medical fact and that is why there is a warning on all medical websites that mention hyperacusis.
What exactly is damaged? Explain medically. You can’t damage your hearing on normal sounds that is not our body works. Don’t make stupid comments like that.
Hello James, I would like to challenge you and any of the authors of these ‘medical websites’ to provide any studies, and proof that this is the case, excepting that old study which was carried out witha small number healthy college students which found temporary and transient increased loudness perception after one week of earplug use. None of those students had hyperacusis, before or after the study.
Exposure therapy is indeed to be recommended but not in the manner in which you preach, protection from major setbacks is also important.
As others have said, for milder cases this might not be the case and for many their struggles with hyperacusis will be temporary and will return closer to baseline in the months following an incident, but there are different kinds of hyperacusis and your attempt to gaslight sufferers based on the advice of these medical websites and professionals who are not up to date on the research on hyperacusis is not helpful to anybody, and could lead to worsening for some.
Yes this is the study that was conducted that all the gaslighters refer to “jastreboff” healthy collage student study . If they have healthy ears the study is completely irrelevant.
You are the perfect NPC James, brainless <3
Right James you know all right ? Idiot
I wouldn’t take any advice from that James guy. Has zero clue what he’s talking about
If you suffer from loudness hyperacusis, sound therapy might help but be careful.
If you suffer from real PAIN hyperacusis, you can aggravate your case… (See Bryan testimony on the youtube channel).
And I do confirm personally. Si be extremely carefull with that
I think you’re a doctor…
Amanda, please leave us alone, find yourself some mild preachers friends, open a discord server where you’ll all be free to speak about how far you understand this hell disease more than anybody understand it(even reschearcher who works on it for several years) but PLEASE PLEASE leave severe sufferers alone
Same has been done by 5 E.N.T. doctrs of gujart who charged money, assured cure, relief, not done, despite repeated complaints, proofs to police, no FI.R. has been done, same was reported tothe court, inaciton,.
I will hold onto the belief that treatments are coming to help you..and all the others… please keep the faith, Erin. You have become a wonderful beacon of love & light in this community of sufferers, despite the pain you live with each day. 💖
I’ve had noxacusis since 2012. This article is correct about the cluelessness of doctors and the disorder.
However, hyperacusis is not impossible to treat for a fair number of us, even if you have had it for years. Clomipramine (225 mg) has given me substantial relief in the past year or so, maybe by about 90%. It has had no effect on my tinnitus.
I would recommend others with hyperacusis give it a try and see if it works for them. Just don’t give up too early, it took a long time to kick in for me.
Hi BR, I’m so glad to hear you’ve improved on clomipramine! Myself and a few others have taken the initiative to start a spreadsheet tracking folks’ experience with clomipramine for noxacusis and loudness hyperacusis. We would love to add you to the spreadsheet (under your name BR or anonymously). Please let me know if you’d be open to that! Thank you, Ana.
I’m already on your spreadsheet. Thanks for organizing it for us. (:
yet the average dose is 50mg, no doctor will prescribe that much.. ive seen ur comment on other places
All I can say is this is a tragic story. The thing that stands out the most with me though is the fact doctors actually order MRI’s for people with sound sensitivity! AN ENCLOSED MRI with hearing protection IS WHAT CAUSED all my issues !!!
I am so very sorry this happened to you, You are young though and I don’t know how long you have been this way. It does take time for some, but it is not impossible to have much improvement. If this happens no more loud music , concerts or MRI’s. There are alternative test they can do,
Thank you Kathy. I agree. I should have never had an MRI.
This all began in September 2024. Sadly, I have lost a lot of hope as my tinnitus continues to worsen so quickly. If it weren’t for that I’d have some hope on improving to a quiet livable life.
Hi Erin, I went through a similar experience. Have you looked into any Physical Therapy or Neuromuscular Massage. I found significant relief. The muscle tension, especially in my neck, jaw, and back were extreme. As I relieved that tension, my hyperacusis and tinnitus reduced significantly. I also had to change my breathing to using my diaphragm instead of lifting my chest with my neck and shoulder muscles. The tension was caused by dysfunctional breathing. I hope you find some relief soon.
Take care Erin, I understand what you surfer. We understand.
Guys please stop answering to “james”, she a spanish weirdo who claim to understand H/nox better than any researcher or severe sufferer fighting this hell for years.
Amanda, you sucks !
Comment *Hello my friends. My name is Chris, I am 37 years old and I am from Greece. I worked as a professional musician for about 18 years. I never wore earplugs and I often sat in front of the speakers! I also have anxiety disorder for over 10 years (I never took medication for it). 1 year and 8 months ago, while I was showering at home, water got into my ear and it blocked it. I found a random ENT doctor after a while and went to his office. I told him that I am a musician with probably a sensitive and damaged auditory system. (and the doctor himself was a musician!). Well, he suctioned me with the well-known medical tool. He hit me twice on my eardrum and it hurt a lot. He did the suction (90db tool intensity) and I went home. It was quiet at home and I told my wife that I was hearing a continuous sound in my ear, like “beeeeeeep”.. Very low and only when I closed my ears I could hear it. She thought it was from the suction and that it would go away soon! From the next day, a 3-day live followed. I went to work normally, without earplugs. After the 3rd day and when I woke up at noon, the low “beeeeeeep” had now become a “BEEEEEEP”, 4-5 levels louder than the original.
(October 4, 2023). Then the downhill slide of my life began! Crying, panic attacks, anxiety, stress, sadness, mood disorders, phobias, etc. I went to a psychiatrist and he gave me xanax (0.5) and minitran (2/10 the lowest dose) for 6 months. The biggest mistake I made was starting live performances 1 month after my tinnitus started. Gradually and about every 2 months, my tinnitus increased. I worked for about 7 months, 3 days a week (considered a lot of days for a musician per week). I wore earplugs, but there was a gradual increase in tinnitus every now and then. Also, a mild hyperacusis to specific sounds (metallic, hitting cymbals, bags, etc.) was created from the beginning. I never had a problem with the intensity of my music in live performances. Today, the one tinnitus I had in my left ear, became polytonic and reactive in both ears and in the center of the brain. They gradually created. Each time I had to come to terms with the new changes from the beginning. (again crying, sadness, suicidal ideations, etc.). My wife was going through all these bad things and was pregnant. He became a dad in October 2024 for the first time. Today my child is almost 8 months old and I have NOT been happy with him yet! I can’t feel happiness. I still don’t believe that he is my child. All this, because of the tinnitus. I forgot to mention that halfway through the pregnancy, my wife lost her dad! Amidst all the problems, she experienced this too.. She didn’t have time to mourn him until today. Because, back then, her mind was on me and what I was going through and the child she had in her belly. She hasn’t mourned him yet now either. Why? Because she has our 2nd child in her belly! I will become a dad for the 2nd time and I won’t be happy with this child either! I know it..I feel it..I even know the ending I will have in the end….. I have told my family.. The first 3 farewell videos are already ready.. I hope they never have to see them! I hope for a treatment of even a small relief as soon as possible.. I have stopped working.. I offer nothing at home.. Neither as a husband, nor as a father.. At least that’s how I feel. My wife says that just being in their lives is enough for them! She loves me more than anything else. We have been together for almost 18 years. Since I was 20! We grew up together. We dreamed of our family.. And now that we have achieved it, I am abandoning them day by day! I am constantly reading about what to do and what not to do regarding tinnitus. Discord, Reddit, forums, scientists, doctors, sufferers, etc. Everyone says opposite things to each other. “Don’t wear earplugs”, “wear earplugs”, “change your lifestyle”, “lifestyle doesn’t matter”, “take antidepressants, they will help you”, “don’t take such pills, you will get worse”.. I am very confused. I don’t know what is right and what is not. I ask for your help. You are not sufferers and you know what is true. I am afraid of the sound of a penis. I am afraid of my child’s voices. They cause me to have an increase in reactive tinnitus for days maybe. I don’t know if they will also worsen my hyperacusis. I feel hopeless. Help please! Thank you very much.. With respect, Chris
*I forgot to tell you that a few days after the auditory trauma of the ENT, I went to his office to ask him what I was hearing.. With a humorous tone and a stupid smile, he replied: “you’ll learn to live with it, it will never go away”.. I felt like I went straight to hell.. He could have told me at least the basics, like a professional doctor. That “be careful of sounds”, “wear earplugs”, “eliminate stress because it makes it worse”, “get a cortisone injection within 10 days because it may not progress” etc. He told me ABSOLUTELY NOTHING of these, which would have protected me even a little!
how are you?
for those who take benzo, are we all screwed? if i already have tinnitus and i want to taper, you mean it will be catastrophic?