Hearing Loss and Severe Tinnitus — From Loving Life to Suicidal in 2 Months

Thanks for asking. I am not quite suicidal, but I am not doing too well either; my condition is very unstable and could change at any moment.

Two weeks after the car ride, which I attributed to the worsening and the return of noxacusis, I did improve quite suddenly. In fact, I had an amazing day, the best in a long time (indeed, I felt like myself, @Pinhead!). It happened after repeatedly doing the Valsalva maneuver (carefully) the night prior. This dislodged some mucus, presumably from my middle ear. It may point to Eustachian Tube Dysfunction and/or inflammation. I got suspicious because, during the worsening, the crackling while swallowing got much louder than normal. I also slept in an upright position. My next day was amazing! I woke up to an amazingly low tinnitus (low-moderate, I would say, and it stayed like this for an entire day!).

This got a bit worse the next day, again worse the next day, then worsened badly again. But it was then improved here and there and got worse again. Repeated attempts at doing Valsalva were not as successful, but at least the noxacusis seems to be gone again. Earlier, I also developed some pain in my right ear, which was aggravated even by pressing on my molded earplug. It seems that have receded, too. But the hiss from hell comes often, like this morning, when it was truly catastrophic - competing in loudness with, even overpowering, the shower. It got better later in the day, then got bad again. It's a roller coaster.

It seems my tinnitus is more complex than I thought, and I have some middle ear issues that exacerbate it. It almost seems that the loud "hiss from hell" I usually get every morning is related to it. My best times are ringing/pure tone, which appears quieter and might be my "DCN tinnitus." But it is a loose theory; I don't really know.

My hyperacusis is generally better. Things are too loud, and I cannot tolerate many sounds, but it has stayed on the improved level from a few months ago. Reactivity is worse. I could tolerate the refrigerator generally okay until recently, maybe with a minimal spike, but now it spikes me horribly.

I am very, very tired of this. Finding the potential middle-ear relationship gave me some hope, but I am unsure how to attack it—presumably some inflammation. I will see an ENT, but I am not very hopeful about it.

Overall, I am worse than a year ago, even if I can tolerate things better. I have these better days, but bad days dominate. I am trying to find a truly quiet place to move. I feel best in silence or among nature sounds. I am tired of hearing people and their pointless noises. Lawn mowing, leaf blowing (yeah, that, too, in spring), wood chipping, Harley motorcycles, modified cars, etc. I can't stand these anymore.

My tinnitus now has four levels... Mild, which becomes ignorable. Moderate, which sucks, but overall livable. Severe, not livable, but if you are strong-willed, you may hang on for a longer while until it shreds you down to pieces. And catastrophic, which makes you plan the exit pronto. I am between moderate (30%), severe (50%) and catastrophic (20%).

Based on what I read, the rate and amplitude of my changes (volume) are somewhat uncommon.

 

I have a sad update to write: a terrible setback.

About two weeks ago, I went to see Dr. Maison at Mass Eye and Ear, a tinnitus researcher and clinician, at his newly opened Tinnitus Clinic on the first day of its operation. I had an extended audiogram done, which damaged me terribly. I was slightly apprehensive. My first bad tinnitus indeed showed up the morning of the original audiogram done in early February 2023, a little over three weeks since my trauma. But one done a week later and another a month later (this one by Dr. Maison) did not seem to set me back. I also had a partial extended audiogram done in May 2023 by another audiologist, which did not seem to cause issues.

I also had a tympanogram done, but it was just that, without an acoustic reflex test, and it did not feel bad at all. It was just a whoosh in the ears. I know people often warn about it, but I think the reflex test component is dangerous due to a loud sound. It really did not seem very offensive.

I am in a terrible place. The tinnitus is relentless, catastrophic upon waking up, and always severe. It is no longer livable. It is so ironic that I seek help from audiologists and doctors but get worsened by them. Why cannot I learn? I wanted to see Dr. Maison to understand what research might be happening. As far as his clinic, it does not seem promising at all. He is against TRT and Lenire, so at least that's it. He offers "counseling," hearing aids for sound enhancement, and, surprise, Neosensory. Not very promising.

I communicated to him my setback and tried to explain that audiologists really need to consider what they think is safe is not safe for tinnitus patients, especially with reactive tinnitus (and hyperacusis). I am not sure I got my point across. He also referred me to a psychiatrist. I no longer need this type of help; I habituated to a "reasonable level of tinnitus." It is impossible to habituate to a catastrophic level that is worsening in response to exposure to many trivial sounds like refrigerator or cat purring. It is simply not livable. He talks about "attention given to tinnitus." I am sorry, I don't buy it. I don't buy that because I used to have good days, and I paid attention to tinnitus all the same, and it did not make it worse.

My tinnitus is of two kinds. "Hiss from hell" I wake up to, and it morphs into a less intense ring/tonal late in the day. It is just that the high and low levels are much higher than in the beginning. It has been the pattern that started pretty much after the original audiogram in February 2023. Before, I was getting near silence at night, but instead of the ring, now it is no longer. I theorized this is a middle ear issue. But maybe cochlear damage is progressing in response to even "safe" levels of exposure. I am not sure, but I don't believe this is just hyperactive DCN, as per Dr. Shore's model.

I am just about to hit 18 months since my trauma. It has been a constant downhill, despite taking precautions, really living a quiet life, and using protection around any loud noise, but also not overprotecting and having exposure to daily normal noises at home. I had this seemingly minor follow-up trauma from which I only partially recovered. To recap them:

• Original standard audiogram in February 2023.
• DIY test tones in April 2023.
• Playing crickets via hearing aids for an hour in October 2023.
• Ride in my sports car at the end of April 2024 (in 25 dB custom earplugs). I imagine the car could have been 90 dB due to speed, but it is objectively not that loud. It would be a non-event for healthy ears.
• Extended audiogram in June 2024.

This is very sad. I am not sure how long I can continue with this. My ability to work is now in question. I took a few days off to recover, but it is not going well. My house, while not very loud, is close enough to the road that bothers me - relentless Harleys and other redneck vehicles. I found a remote location where I might move temporarily, but not until later this summer. It may be my last ditch to save myself. Again, I considered stem cells but could not handle a long trip. I definitely would not go to StemCells21 in Thailand; it is too far, and that clinic is very sketchy. I am considering one of the places in Panama, but this is a long shot, obviously.

Thank you for following my story. I am afraid there is not much left of it. I hope to make it to the two-year mark I tried to promise myself, but this is now in question.

P.S. I also saw a random ENT at the end of May to discuss potential Eustachian Tube Dysfunction and my "Valsalva miracle." He was useless. I also probably mistakenly let him syringe my ear to remove earwax. He could not use a curette (of course, he wanted to use suction). It seemed to mirror if there was a spike; at least he tried to be careful and went slow about it. It's still dangerous and, at best, a waste of time and money.

 

@gameover, it has been a while since I’ve posted. I’m doing much better (mentally) for the most part. The tinnitus is still there (but a little less bothersome and maybe some habituation); the hyperacusis has improved by about 80%. I’ve concluded that no ENT or medical professional can help with this; it just takes time for the brain to “settle.” It may take 3, 5, 10 years, but so be it. I’ve learned to stay busy and get excited about things that I love to do. I get a few terrible days here and there; I now know that the spikes don’t last forever; I don’t panic. I try to cherish and live out the “good days.”

I’m coming up on 21 months since onset. I'm hoping that things will continue to improve in time. The miraculous improvement in my hyperacusis gives me hope. Some folks here say it takes three years or so to see significant improvements.

Hang in there, my friend.

 

There's a place in Oregon that helps people with hyperacusis. The chief audiologist where I go sent one of his patients there, who locked herself in the room with earplugs and noise reduction headsets. He told me the worst thing to do is plug your ears and that masking sounds (TRT) is the way to go. He's done extensive research and has tinnitus.

 

Some here have followed this exact advice and are now catastrophic. Anecdotes are not reliable.

 

It's good to hear from you, @Buddy123. I'm glad you are having good days, your hyperacusis has improved, and you are enjoying life in general. I am very envious.

Of course, most normal doctors are useless. Useless is the best-case scenario; they can worsen you due to their ignorance of these conditions.

Yeah, the brain to settle. I am trying, but mine is going in the opposite direction, sadly, despite my efforts to the contrary. I never recover fully to a previous state after which setback; it has always been partial recovery, with these few magic good days thrown in. I don't know what it is. Is it constant neuroinflammation or synaptopathy, or is it progressing "collapse" of the inhibitory parts of the brain? The worst part is the increasing reactiveness of tinnitus and lowering tolerance. Hyperacusis reached a plateau long ago and has not improved or regressed, showing how unrelated the condition is to reactive tinnitus. Noxacusis is coming and going, but it is lurking there. It, however, is very connected to reactive tinnitus, and I feel the relationship. It is strange because most ear pain should be explained by middle ear issues, usually with the muscles like tensor tympani or, what is somewhat novel and not often discussed, tensor veli palatini that controls the Eustachian tube. Still, I cannot modulate reactiveness by manipulating the middle ear muscles. Very elusive. Theories abound, and despite reading a ton of stuff, including various recent research papers, I am not getting closer to understanding what is happening. Very little research has been done about reactive tinnitus.

Unfortunately, I am staying busy, working, but it is not enough. I keep worsening, and it is sound exposure that is setting me back. It does not have to be bad, just certain kinds of sounds, especially high frequencies, I realized (like the audiogram). Low frequencies might be unpleasant (I still hate Harleys with a passion), but they do not really set me back; high frequencies literally kill my brain. I tried to listen to a marvelous violin piece by Paganini. Despite enjoying it tremendously for a couple of short minutes, it just sets me back badly. So cruel.

I want to make some last-ditch efforts to save myself; I don't want to give up just yet, though the situation is increasingly dire. I am moving soon temporarily to a calmer place, and I am also about to decide to go for stem cell therapy. It requires flying, which will be very tiresome and risky. I hope this can restart something in my brain and body to enable healing.

At the same time, I feel this may be inescapable, and I may need to accept that this will lead me to a sad end. Severe reactive tinnitus combined with noxacusis is something unfathomably cruel that can make life simply impossible.

Please. TRT is not a proven therapy; it is a grift scheme invented by that pseudo-scientist Jastreboff. Most people with mild/average/moderate even tinnitus improve on their own despite this nonsense therapy. It is possible it can help some people (maybe just a placebo effect), but people with reactive tinnitus combined with hyperacusis can readily get irreparably worse.

 

Yeah, fucking TRT. Ignorants will keep repeating and believing this nonsense while we wither and die. I want to die because this terror is unlivable. It is no longer worth living. Voluntary assisted death should be a human right and should be easily accessible.

I did not understand it. It is very hard to understand unless one lives the nightmare we do.

 

This post shouldn't have been allowed.

 

I've been living with this nightmare for nine years. Every night for nine years, I've woken up to a deep ringing that never seems to go away. It's been a constant presence, and I've even experienced loud hissing throughout the day for multiple days.

At first, I thought every little noise was causing it, so I started protecting my ears and became hyperaware of any sound. I thought I was causing it to worsen, so I stopped plugging my ears. I no longer worry about loud noises like dishes banging or car doors slamming, and I play music and vacuum the house without trying to protect my ears.

I've started to get better, and I've realized that it's all mental – I no longer let the fear of noise affect me or worsen my tinnitus.

 

Severe, often catastrophically loud hiss is with me every day.

I don't overprotect; I only use hearing protection outside when not in safe spaces like the woods. And in the car. I avoid noises that aggravate my condition. I specifically do exposure exercises like listening to music recently. In fact, I enjoy it immensely because music was one of my favorite hobbies, a crucial element of my life. Despite this, it winds up my reactive tinnitus, which then transforms into noxacusis (for me, these two are clearly linked, unlike baseline tinnitus and hyperacusis, the latter being largely independent of anything). Not sure what I am doing wrong. Maybe a few minutes was too much at one time, and it needs a more gradual approach (like 30 seconds to start with).

Anyhow, I do not subscribe to the camp that thinks total silence is the solution, but also, consistent with the "brain retraining camp," pushing through pain is also counterproductive.

Some of us may be too far gone to undo the maladaptive damage. Indeed, there is a possibility of physical neuronal damage that simply cannot be bypassed via training. Nobody knows; everyone talks about it from their individual perspective and thinks they can apply it to others.

 

Be careful when doing the Valsalva maneuver as it can cause your eardrum to flutter, popping it in and out, possibly leading to a spike in your tinnitus. It's okay to do it a few times a day.

If you can tolerate a Sudafed, I would take a small dose, 10 mg daily. It will dry you out and possibly give you more better days.

 

I don't understand how some people can withstand their tinnitus in silence or with earplugs. They are built differently from me. I'd rather slit my own throat than "protect" my ears. I literally break down in tears if I spend 2 minutes away from other sounds. My low-frequency tinnitus is utterly overwhelming in the quiet.

 

I have no choice. When my tinnitus is raging, nothing masks it. It will just become louder.

 

If it's going to get worse from NOT protecting, it's a very easy decision to make.

 

@BlueMoon86, how bad is your hearing loss? Do you use a hearing aid?

 

My hearing loss is moderately severe/moderate until 3 kHz, where I hear exceptionally well (like below zero dB). I also have a mild dip at 6 kHz. My loss was sudden and unexplained. Hearing aids made the poor-quality, distorted sound in my left ear louder—unwelcome noise on top of unwelcome noise. I'd rather be deaf.

 

Hearing aids do not 'undistort' distorted hearing; they only amplify sound.

 

When I wear my ReSound hearing aid, it helps to reduce the ringing in my ear. I always use white noise and meditation apps with the hearing aid, and they have been a lifesaver for me. I have profound hearing loss in my right ear, so I only need one hearing aid for my left ear. It's important to have a Bluetooth hearing aid.

 

@gameover, you have read many posts here, and I don’t know how much of anything I write can help. But I have had horrible high-pitched (11 kHz - 13 kHz, not sure) tinnitus for some eight years now.

And I have been in hell all these times. To think:

I used to keep a map of the quietest places in the world and had hoped to visit them because I craved quiet and natural silence so much. Then the tinnitus hit me.

The one thing that has helped me personally is to understand living can be hell. We are all one accident from actual hell - or death.

But while we are alive, try to create space to allow yourself to enjoy the limited time you have with those you love or to accomplish endeavors you genuinely care about.

Warmest Wishes,
Allen

 

How are you doing, @gameover?

 

I heard about your bad tinnitus case from @Buddy123. You are one of the strong ones among us. Yeah, I was aware that life could turn into hell at any moment; this caught me off guard despite some clues I should have followed (e.g., misophonia). It's too late for that. Yeah, I am still alive despite the odds, and despite the tinnitus being much worse overall than when I started this thread, I have learned to cope with it a little better. I'm still trying to figure out how to reinvent myself in this new hell of a life. I hope I can. Thank you, I appreciate you writing this.

Thank you for asking, bud! It's a little bit better. I have not had a catastrophic day in like a week, which is not great, but the stability of - even bad tinnitus - is very welcome. It's too early to tell, but I started massage therapy for the jaw/face/neck muscles. I never thought I had any issues there, but some of these muscles are badly tight. So, I am trying to address that to see if I can get any relief. I need to do anything I can (that's reasonably safe). Time, patience, and protection do not seem enough...

I hope you're doing ok. It seems you are also one of those who found your "groove" despite living in hell.

 

That's good to hear.

Massage is key. Make sure to get your temples and head massaged. So much stress is there from our torment. Keep doing that, and even gently have your ear lobes pulled.

Eat garlic and fish.

I found my groove, touch wood, and I pray you do too. This shit is diabolical. Much of what life deals with is.

Big hugs. I am praying you slowly find your groove,
Daniel

 

Hello Everyone,

My name is Tim, and I’m new to this forum. Today marks the seventh day since I developed tinnitus in my left ear. I attended a Def Leppard concert last week, with the stage to my left. I remember thinking how loud it was, but I never imagined it could lead to tinnitus.

I'm 45 years old and generally haven't been exposed to many loud environments, though I’ve mowed the lawn while wearing Apple headphones and attended a few other concerts, but not many. Like you, @gameover, my life was amazing before this—great wife, kids, and home. I have four kids with my high school sweetheart, and two of them are still in high school.

Even after just seven days, this experience has been incredibly challenging. It affects every aspect of my life. I've already lost 10 pounds from not eating and feeling super anxious. I’ve even looked up various ways to end my life, though I really don’t want to go down that path. I reached out to a clinic in Switzerland about voluntary assisted death (they mentioned they do see tinnitus sufferers), but it requires spousal consent. I’ve also considered using a firearm, but I’m terrified of the impact it would have on my kids and how it could scar them for life.

I had my hearing tested a few days ago, and initially, my ear canals were completely blocked with earwax (maybe that was a good thing?). After they removed the wax, they found that I have a 15 dB drop between 1000 Hz and 3000 Hz and about a 20 dB drop at 6000 Hz in my left ear, compared to my right ear, where I don't have tinnitus. It doesn’t sound too severe, but I’m not sure what to make of it. My ENT mentioned it could be a temporary threshold shift, which usually resolves in a few days, but it’s been a week now.

I’m just trying to find ways to cope. The mornings and days are the hardest. I work from home, and I’m terrified of how quiet the house will be when my wife (who’s a teacher) and kids go back to school in September. I’ve been using Loop earplugs, which make everything quieter, and oddly enough, that seems to help a little. Maybe it’s because I’m training my brain to cope by hearing the sound with the earplugs in. However, the thought of always needing earplugs nearby is frustrating.

Anyway, I’m here now and praying for all of us. Sorry for the long post!

 

@gameover, My God, I’m so flattered that you said you missed me.

Some observations:

Look at what happened, though—I dared to point out some limitations in @Michael Leigh's TRT, and this outraged and incensed his Cult Followers (should I have expected any other reaction?).

I had a terrible time even trying to schedule an appointment with a psychiatrist. One, who my Primary Care Physician recommended, reacted like a vampire confronted with a crucifix when I mentioned I was stressed from tinnitus. He actually shouted, "Get CBT!" and then hung up. Is this their defensive reaction to the lack of an effective treatment?

As Polio did, COVID-19 is going to leave a whole generation with lifelong symptoms, including troublesome tinnitus. We already know about Kent Taylor's tragic demise and the murder-suicide reported by @TLion.

Since there is still no effective treatment, patients will be tossed around like the proverbial hot potato. Psychiatrists will insist it’s an ENT problem, while ENT doctors will regard it as psychological and send the patient right back to the psychiatrist.

A friend who recommended this psychiatrist assured me that he considered TRT and CBT about as effective in treating tinnitus as using a garden hose to put out a forest fire—which is one of the reasons I respected him.

Curiously, my audiologist gave me the name of a supposed TRT practitioner. Wouldn't you know, she also identified herself as an Evangelical preacher. I would have been as nauseated by her urging me to rely on the Lord as I was by those drugs.

This is also one of the truly unconscionable aspects of these TRT/CBT proponents; they shift from treating it as a medical issue to an ethical/moral one—as indicated by Jastreboff's disgusting censure of those who don't “get” TRT as being "white flag wavers"—or even to a religious one, as I mentioned above.

After the fiasco of that first antidepressant, he prescribed Buspar (buspirone), which initially gave me epileptic-like brain zaps, shortness of breath, nausea that brought tears to my eyes, and diarrhea that kept me home all day. I asked myself, "Is the real purpose of these drugs to make you so sick that when you go off them, you’re just relieved that tinnitus doesn't seem so bad after all?"

With unbearable sadness, I realized, "You wouldn't have had to endure this gauntlet of misery if you’d never had tinnitus." And please, spare me any commentary about how I’m just "feeling sorry for myself" (and what does that even mean?). Imagine the cruel stupidity of saying that Kent Taylor or Gaby Olthuis should be ostracized for "feeling sorry for themselves."

This has completely ruined my retirement. My wife has become distant and curt and has essentially removed herself emotionally from our marriage.

She confronted me with the news that most of her friends routinely ask her, "Dave isn’t really going to harm himself in the near future, is he?" I reply, "Of course not," but I also know that if Pegasos and/or Dignitas had offices in Chicago, I would have most assuredly applied.

 

I’m sorry you’ve found yourself in this difficult situation.

First, you're only 7 days in. You might want to consider intratympanic steroid injections. While there are no guarantees, this is the only treatment that might help if done quickly. However, you need to act immediately. Oral prednisone is not recommended; it's unlikely to be effective and comes with significant side effects. It's also an off-label therapy. I regret not pursuing the injections myself, but by the time I considered it, nearly 30 days had passed. If I knew then what I know now and were only a week post-trauma, I would have tried it if possible.

Second, at just 7 days in, it's far too early to consider drastic measures like assisted suicide. I understand the shock and anxiety, though. My tinnitus began 3 or 4 days after my trauma, and it was a shock. Initially, it was mild, so I remained hopeful. Things started to worsen around the 1-month mark and became severe by the second month.

This condition is terrible and the hardest thing I've ever faced, but there is a chance it will improve. Your hearing loss isn’t severe, and the link between hearing loss and tinnitus is not fully understood. It varies depending on individual brain function and other issues that might be contributing factors, such as TMJ or neck muscle problems, which you might not be aware of yet. You can explore these possibilities later on.

It's easier said than done, but try to relax and avoid panicking. Anxiety and panic only make things worse. A word of caution: be wary of antidepressants. If you visit a doctor in this state, there's a good chance they might prescribe them, but they can be very risky for tinnitus sufferers (and risky in general).

You’re using hearing protection, which is good, but give your ears a rest without over-relying on it. The debate between sound exposure and protection is ongoing, with no clear consensus. Some research suggests that sound enrichment after hearing loss can be beneficial and might prevent cortical remapping that could worsen tinnitus. Use common sense: avoid sounds above 70 dB (and definitely above 80 dB), but don’t isolate yourself from tolerable sounds. At the same time, don’t force yourself to endure sounds you find uncomfortable. Definitely avoid anything that causes discomfort.

 

Heh, yes, I appreciate your writing skills! TRT is nonsense and a scam that can be harmful. CBT can be perhaps helpful in managing things for some people, but I have not met a useful therapist. I have a physical issue to solve; I don't need psycho jumbo-mumbo.

I have not updated folks here, as it is too early to declare success, but after four sessions of TMJ muscle massages and one session of dry needling of the tensor veli palatini muscle, I think this is doing something. I thought I had zero jaw issues, but it turns out my jaw and neck muscles are very tight. While today I have a bit of a setback, I had one of the best weeks in several months. I could feel the effect of working on these muscles on my symptoms in real-time. My hiss from hell tinnitus has been greatly reduced, replaced by the less reactive and more tolerable ring.

I think everyone suffering from tinnitus should try these to see if they get relief. These muscles send signals to the dorsal cochlear nucleus, and it is theorized they can affect the cochlea directly. This is consistent with the oft-cited Norena model ("An Integrative Model Accounting for the Symptom Cluster Triggered After an Acoustic Shock" paper).

 

I'm very happy to hear you've achieved some improvement. I really hope it continues!

 

@gameover, you must be from the New England area. I am from the Boston area, and I made an appointment to see Dr. Maison @ Mass Eye & Ear, too - do you think it would be worthwhile to see him? They said I have to do all kinds of tinnitus-specific testing in order to get an appointment with him first, and they cannot fit me in until January... What the heck am I supposed to do between now and then!?

 

Well, it may be worth seeing him, but don't expect an audiologist, including him, to help you. You may get a referral to a psychiatrist/CBT therapist and/or ENT, both pretty much useless (ENT can be helpful with steroid injections, but your clock is ticking). When I saw him, it did not require any special steps or testing.

Besides steroids, the only thing you can do is to consider looking for co-factors like jaw/neck issues. The theory goes you may have dormant asymptomatic issues, and only after hearing damage do they surface in the form of tinnitus. I think I got some improvement from face muscle massages and dry needling, but as usual, I jinxed myself - my setback from yesterday is even worse today. I hope I will get better.

Other than that, there is not a lot you can do but give it time. I also recommend removing any stressors from your living situation. If you can get away somewhere to relax, I think it could do a lot of good.

 

I just talked to my ENT today about the intratympanic steroid injection. Fortunately, she is pretty responsive. She tells me it is something she can do, but it is not likely to help. It would be a "hail mary," and she says the risks are that the hearing and tinnitus can get worse, get infected, or leave a hole in my eardrum. BUT - she will do it if I want to.

I've been reading some studies, and one in particular shows that it worked well. It's been nine days for me, and I'm going crazy - but one of the tones has gone away (there were two), and the stuffiness of the ear seems to be going away slightly. I do feel like the higher pitch is getting a little louder, but maybe it's just because I'm hyper-focusing on it... which I'm trying not to do.