How Does One Live with Catastrophic Tinnitus?

How does one live with catastrophic tinnitus?

I have no will to live anymore. I got mine from COVID-19, and I made it worse with my only escape, which was video games and music at volumes less than 70 dB.

Not sure what to do anymore; I don’t know if I can survive. I sit here crying as I type this. I need to know if there is hope. I’m 33, my birthday was today, and all I can think about is this noise.

Is this ever going to get better?

 

It isn't easy @kyscrivens, but one's ability to cope with tinnitus can improve with time. Treatments fall into three, possibly four categories; they are not cures: counseling, medication, sound therapy, and possibly surgery. Sometimes, a combination of these treatments is required. It all depends on what the underlying cause of the tinnitus is. Tinnitus might be cured in some instances if the underlying medical cause can be treated with surgery.

Some people are vehemently against taking some or all types of medication to help cope with tinnitus, but I disagree with this train of thought. Tinnitus can have a serious impact on a person's mental and emotional well-being, as you have described in your post. The more stressed a person becomes with tinnitus, the more intrusive it can appear. Talk to your GP/PCP and explain how you feel. If you haven't been seen at ENT or been referred to an audiologist specializing in tinnitus and hyperacusis management, I advise you to do so.

I advise you not to listen to audio through any headphones, even at low volume. This includes earbuds, Airpods, headsets, noise-canceling, and bone-conduction headphones, as you risk worsening tinnitus. Please click the link below and read my thread: New to Tinnitus, What to Do?

Take care,
Michael

New to Tinnitus, What to Do? | Tinnitus Talk Support Forum

 

Thank you for your response. Unfortunately, I think the headphones lesson is too late for me. I don’t use them anymore and wish I had known that before making them worse. I am prescribed Klonopin, but I’m scared it’ll only make my tinnitus worse, and all I hear about are horror stories about benzodiazepines. I want to survive and live, but the anxiety and stress are all too much at this point. I don’t know how anyone manages at this level.

What about my job? I’ve been off for a while. I work in injection molding but wear molded earplugs. If I survive this, should I quit and find something else?

 

Hi @kyscrivens,

You have asked for advice, so I will try to help you. It is based on my 28 years living with noise-induced tinnitus, which I believe you have. This type of tinnitus can be very debilitating when severe, but it can improve with time and treatment, which I briefly touched on in my previous post.

Please stop reading negative stories about medications you have been prescribed by your ENT or your GP/PCP doctors, in particular about Klonopin (Clonazepam). Providing Klonopin isn't taken too often, and in large dosages, you should be fine. Your doctors should be able to advise you further. You have been prescribed this medicine because your tinnitus is severe at the moment and is probably causing you a lot of distress.

My ENT consultant prescribed me Klonopin in 2010 because my tinnitus was very severe. After I asked her to be candid about my condition, she said I was the second worst tinnitus patient that she had met in all the years she has been practicing as an Audiovestibular physician. She said she would never give up on treating me. Klonopin helped me immensely; I don't know what I would have done without it. I was advised to take it when my tinnitus was severe and for as brief a period as possible. I took 2x 0.5 mg tablets whenever my tinnitus was severe, and it reduced the tinnitus over 12 to 24 hours to more tolerable levels or complete silence. I haven't had a problem with Klonopin in 13 years and still have it on prescription. I take it once or twice a month, for 1 or 2 days, then stop.

As I previously mentioned, tinnitus can seriously affect a person's mental and emotional well-being. So please follow the advice of your doctors and try to get a referral to see an audiologist who specializes in tinnitus counseling.

Go to my started threads and read: Keeping Things Simple with Tinnitus, I Have Noise-Induced Tinnitus, What Should I Do? Please read the posts mentioned in the list, which can be found on my started threads.

Your working environment could be a problem for you at the moment. Even though you are wearing earplugs, if external sounds are loud enough, they can pass through your head and transfer to your inner ear by bone conduction and spike your tinnitus, which is something you don't want. Only you can know how you feel in your work environment because we are all different.

Take care. Try to stop reading up information about medications and tinnitus online.

Michael

 

I appreciate your response and your kind words.

I have one final question for you, please. It’s about bone conduction. How loud does the environment have to be for that to take place? I have a dB meter, and I can check to be safe. But I’m not too sure about the levels, etc., and what could cause more damage. So, what would a safe work environment noise level be with custom molded earplugs, where it wouldn’t produce more damage?

Also, I’m assuming my tinnitus will get worse with age. How will I cope? Based on my reading, tinnitus seems to always get worse, and I feel like mine is already at its max.

 

If you work in a noisy environment, you may want to consider changing jobs.

It's not worth the risk.

@Michael Leigh is absolutely correct about bone conduction. Even though you wear earplugs and earmuffs, the sound will still travel through your skull with the chance of damaging your ears and tinnitus further.

 

Please stop reading about tinnitus online because it will do you no good, especially if it is negative information about tinnitus. This is why I have advised you to read my post: Keeping Things Simple with Tinnitus. It is on my started threads, and I advise you to print it. Print the posts: Tinnitus and the Negative Mindset, Acquiring a Positive Mindset.

This is not necessarily true and I have explained this in my post: Will My Tinnitus Get Worse? It is on my started threads. It is listed on the thread: I Have Noise-Induced Tinnitus, What Should I Do?

Noise-induced tinnitus, which I believe you have, will usually remain stable for many years without worsening. The most common reasons this type of tinnitus worsens are further exposure to loud noise or using any headphones, even at low volume. Headphone use will not adversely affect everyone who has noise-induced tinnitus. However, many people find that their tinnitus can get worse when they use them. It is your choice what you decide to do. Please type headphones in the search box at the top of this page and read the posts. Read my thread: Can I Habituate to Variable Tinnitus?

No two people will experience noise-induced tinnitus the same. Hyperacusis often (but not always) accompanies this condition. Hyperacusis is having oversensitivity to sound. It comes in various levels of severity, and like tinnitus, no two people will experience it the same. It can be treated so its severity is reduced or completely cured for some people. I once had very severe hyperacusis with pain; it was completely cured by wearing white noise generators as part of TRT. Please read my thread: Hyperacusis, As I See It. There, I explain sound levels and advise against overusing hearing protection and using sound level meters.

Using a sound level meter can instill negative thinking about tinnitus and constantly remind you that you have a problem. Once you habituate, you will be able to get on with your life and do everything that you want to. You need to take some precautions, which I have explained in my posts: The Habituation Process and How to Habituate to Tinnitus.

Please stop reading about tinnitus online, as it often instills negative thinking. This can halt or completely stop the habituation process. Follow the advice of your doctors; try to see an audiologist for tinnitus counseling. Take up a new hobby or interest, which will help direct your mind to more positive things in life.

All the best,
Michael

 

It's basically "fake news", what you've read.

For most people it gets better, you just don't hear about it/most of them do not register on forums in the first place, or they leave after habituating.

A lot of the stuff you will read on the web are "worst case" stories. I would advise you to keep to positive stories only, if you can.

 

Yes, although in the short term after trauma it can improve with some healing if you're careful, but it will almost certainly get worse over years and years, although much of the time it may be so gradual that you won't notice it, but then you may have sudden worsening along the way. That has been my experience over a couple of decades as well. To minimize the worsenings, protect your ears from loud noises, even around the house, like with hair dryers, vacuum cleaners, blenders, mowers, power tools, and more.

I wouldn't bother with TRT (Tinnitus Retraining Therapy) as it has been shown to be ineffective vs. standard of care in a study:

Tinnitus Retraining Therapy Is Ineffective, Latest Study Finds

 

Stop with this; you have no evidence that it gets worse. You have said this 100s of times, and it's tiring. Your experience isn't every person who has had tinnitus. Most don't get worse; otherwise, you would see it everywhere. You have also said that most people's tinnitus is mild; it can't be both.

 

@kyscrivens, be clear that the phrase "get better" is used synonymously on Tinnitus Talk to mean either:

1. An actual reduction of tinnitus volume/loudness/number of sounds.

or

2. Habituation.

I've noticed that most mean point 2 when I question those who claim to be "better," often after at least two attempts at asking them. "Getting better" people, for some reason, don't tend to like being asked what their definition of "getting better" entails.

 

TRT being ineffective would be great. It worsens many people.

@kyscrivens, I'm so sorry about that. First of all, do not listen or read to most of what @Michael Leigh (not a real name) says. He dishes a lot of dangerous advice, is a shill for TRT snake oil salesman, and is just an obtuse graphomaniac.

Above all - do not let yourself worsen with loud sounds. This may require changes in living arrangements, which is easier said than done. Try to live as healthily as possible, distract yourself, and hope you will improve. Not everyone does, but many do. Good luck.

 

I should clarify, I was referring to the volume/tones of the tinnitus getting more intense over many years, not referring to habituation or someone's response to their tinnitus.

Most people with tinnitus do have mild tinnitus, just as I used to. My past mild tinnitus got worse over about 20 years, going from a 1 to 3, and I would still call it mild despite that worsening.

Not everyone's tinnitus will worsen as quickly or as much as mine has to become severe with a more sudden worsening like I experienced over two years ago, and continued to worsen since. But there is a general trend over the long run.

Of course, the other conditions that are common with more severe tinnitus, such as hyperacusis, reactivity, noxacusis, TTTS, and hearing loss just make the whole situation worse as well. So, I continue to recommend protecting your ears as to avoid a faster worsening than will otherwise happen.

Indeed - it's a risk. So many things can make you worse.

 

I totally agree with you @Utdmad89. I will say tinnitus can get worse for some people over time, but this is usually caused by an underlying medical condition within the auditory system, like Meniere's disease, to give one example. Exposure to loud noise is one of the most common causes of tinnitus and is an entirely different kettle of fish. This condition usually remains stable for many years without getting worse, as an underlying medical condition doesn't cause it. Continuous exposure to loud noise and using headphones, even at low volumes, often cause this type of tinnitus to get progressively worse. If a person has hyperacusis with their noise-induced tinnitus and it doesn't improve by itself or treatment isn't sought to reduce the severity or be completely cured, it can make a living with noise-induced tinnitus problematic. This will usually manifest itself as spikes in the tinnitus. However, tinnitus itself may not necessarily get progressively worse.

Some people believe once they habituate, they can return to their old lifestyle, having followed the erroneous advice of some ENT doctors and audiologists. These health professionals know about the ear's anatomy, but many know little about tinnitus. Tinnitus cannot be learned from a book or medical school in any great depth. One has to live with tinnitus and preferably have experience of it being mild, moderate, and severe to fully understand the way the condition can affect a person's mental and emotional well-being. Tinnitus and, to some extent, hyperacusis, or having some oversensitivity to sound, is all mental. I don't mean the severity of these conditions can be controlled by mere thought. However, they are an integral part of a person's mental and emotional well-being and cannot be separated from it. Stress makes tinnitus worse, and tinnitus can make stress worse. It can become a vicious cycle, and if stress is not managed, a person could quickly find themself spiraling down into a vortex of confusion and discontent.

It is further exposure to loud noise, such as going to concerts and clubs with the belief wearing earplugs they are safe. Nothing more could be further from the truth. Listening to music through headphones, earbuds, headsets, AirPods, noise canceling, and bone conduction headphones with often a completely cavalier attitude that their tinnitus is cured because they rarely hear it is another false belief that their noise-induced tinnitus won't get worse. They might get away with this for a while, but suddenly and completely out of the blue, they find their tinnitus returning with a vengeance and ferocity they didn't think possible. I have explained this in my thread: Can I Habituate to Variable Tinnitus?

Some medications can make tinnitus worse temporarily. Stress is another important factor that needs to be kept under control, as mentioned above. Of course, one must be careful when exposed to loud sounds. The answer isn't to carry a sound level meter or hearing protection for every hint of loud noise; one has to reach for earmuffs or earplugs. This induces panic and fear and is not healthy for one's mental and emotional well-being. If a person is oversensitive to sound, the answer is to seek treatment to help desensitize the oversensitivity to the auditory system. This can be done with the correct treatment: wearing white noise generators. They must be introduced very slowly, and one must be under the care of an audiologist specializing in tinnitus and hyperacusis, as counseling may be required. Posting links to dismiss the effectiveness of treatments like TRT and CBT is the wrong approach. It is negative counseling that helps no one who visits Tinnitus Talk for help with tinnitus and hyperacusis management.

Some people are quick to say Hearing aids, Medication, counselling, TRT, CBT, sound therapy and relaxation exercises for tinnitus management are out of date. Until the medical profession comes up with something better, these are some of the best treatments currently available, to help people have a better quality of life with tinnitus.

Michael

 

Once again, you're stating that it's a fact that tinnitus gets worse. You have no evidence other than your own experience. And my original post is hardly funny. If it's inevitable that tinnitus gets worse, then most people's tinnitus wouldn't be mild. You contradict yourself to suit what you are preaching at that time.

 

This is 100% false. Please do read the definition of "habituation" before making such statements.

This condition can vary in pitch, intensity, and difficulty. No two people face the same tinnitus, and some stay at home due to it. Some level of habituation is possible, but to say that they can be 100% habituated and do as they did before once habituated is false.

 

Thanks for the information and warnings to the good members of Tinnitus Talk. I see that often - he parrots the same opinionated misinformation post after post.

To be clear, I was not referring to anyone with underlying medical conditions or who was continuing to experience further noise trauma or exposure to unusually loud noise, causing their worsening over time. Statistics even show that tinnitus is more frequent in older people. The first thing they say is that it's gotten worse. Tinnitus isn't just a mental thing, as you said - the volume actually gets worse, often new tones/sounds as well over time.

You have said many times that you habituated more than once after going through many years of TRT. Yet, you have been claiming since February that your tinnitus has gotten worse and was as bad as it's ever been, calling it "horrendous" and "very severe" and mentioning that even popping your benzos wasn't helping much anymore.

You even went as far as to order a very expensive new-fangled electronic device (Cleanhearing Sono) that makes clicking sounds that you think will actually help with his increased level of tinnitus, which, of course, wasn't working, so you called the company and discussed returning. And you clearly said that you do not have spikes and that this was a new worsening you couldn't explain. That all sounds more supportive of what I was saying about worsening over time.

Perhaps listening to your "singing" stereo system and reel-to-reel tape recorder was a factor. Also, bad things can happen when popping benzos.

In any event, your tinnitus worsened, and you called it "horrendous." You are still struggling for that elusive help with that new "clicking sound" device while still popping benzos as needed, so I don't see how you can say you are habituated except by some twisted definition you came up with.

Reference where you mentioned your tinnitus worsening and using a device trying to help:

https://www.tinnitustalk.com/posts/705767

Read my post again. I explained that mild tinnitus can worsen yet still be mild. I thought I made it very clear. I even gave a specific example with mine worsening from 1 to 3 years. That's worse, yet it's still mild. ZERO contradiction. My severe tinnitus happened after that. Tinnitus usually worsens over many years, sometimes with sudden worsenings, but it doesn't mean it will get severe. You need to protect to improve your odds, so be careful.

Sure, it's very unlikely, but I hope your tinnitus improves so you can spend time with your family and be happy again. Maybe Dr. Shore's device will help you in a few years. Be patient and stay optimistic. Perhaps consider Clomipramine if things get too difficult.

 

Hi @fishbone, long time no see. Habituation can have different meanings for different people. Please read my posts: The Habituation Process and How to Habituate to Tinnitus. I appreciate and respect your vast experience in noise-induced tinnitus and hyperacusis. However, I am of equal experience and have counseled people with noise-induced tinnitus and hyperacusis for many years. I am still learning.

I have never said that a person is able to do 100% of what they used to do after they have habituated.

Take care,
Michael

How to Habituate to Tinnitus | Tinnitus Talk Support Forum
The Habituation Process | Tinnitus Talk Support Forum

 

Yes, your tinnitus will most likely get better at some point. It may also get worse either before or after that time. By learning its triggers, most of us can live some meaningful life—perhaps not the life we had before, but maybe involving new work and hobbies. I can no longer enjoy the live rock music I used to love, but I can manage the occasional carefully chosen concert in other genres or some other live event. Sometimes I have to leave before the end of the show. It's a case of adjusting your expectations. My tinnitus was noise-induced and is accompanied by hyperacusis, which has been slowly easing since I first acquired it five years ago.

 

Numerous factors can lead to tinnitus or further annoyance. There are a few things we can control and some we can't. From my experience, I do my best to control what I can. Everything from stress, diet, lifestyle, and more can possibly affect our tinnitus. Journaling and seeing what helps and what does not can be beneficial.

 

@Utdmad89, why are you so combative so often? Even way before your current worsening, you were critical of the severe camp, warning mild cases that they may severely worsen if they are not careful and generally going after "negative thinking." Now you have horribly worsened, and that still has not humbled you? Of course, not everyone's path is the same; the triggers/conditions to worsen (and to get the initial onset) vary widely.

But being cautious is really warranted here, and that's what, e.g., @RunningMan is preaching. Isn't it better to be overly cautious and keep the tinnitus at a manageable level vs. chancing it and severely worsening?

I mean, it is like many life choices we make in normal life. But I think the risk profile has negatively changed, not in our favor, once we got this affliction, even mildly.

 

Are you taking the piss! Look at yourself before you judge me. You're on almost every thread being combative, patronizing, or just playing rude. Where have you been humble?

I didn't find it helpful. The same few people have a pop at what they see as people who are less in their eyes because they don’t fit specific criteria. I could be like this with most people, but I'm not. @RunningMan isn't warning anyone; he just keeps stating that tinnitus worsens whatever you do like it's a fact, which isn't true.

 

I knew it wouldn't take long for people like you to start mentioning the difficulties that I have recently been going through with my tinnitus and throwing it straight back at me. It is one of the reasons I prefer not to use my real name on the Internet. I shall return in kind since you have been candid and direct with me. Before I do, I want to say that I thought you were a person that would show more respect.

The increase in my tinnitus has nothing to do with it getting worse over the years or listening to my Hi-Fi and enjoying my music through my recent purchase of an Akai Reel-to-Reel tape recorder. This is totally different from the increase in your tinnitus, which has been brought on by you frequenting clubs where loud music was played, riding noisy motorcycles, and working on noisy engines, as mentioned on your profile. It is you that have made your tinnitus worse. I am sorry to hear about the difficulties that you are experiencing with your tinnitus and hope that, in time, you can get some treatment. For this to happen, you must acquire an open mind and change your negative thinking mindset because tinnitus is all mental, plain and simple. I don't mean its severity can be controlled by mere thought. I am saying that tinnitus is integral to our mental and emotional well-being and cannot be separated from it.

A person that has negative thinking about tinnitus and hyperacusis and believes no treatment is helpful other than a complete cure, is setting themselves up for a life of pure misery. I have explained the dangers of a negative mindset in my posts: Tinnitus and the Negative Mindset, Acquiring a Positive Mindset. I advise you to print and read them. @fishbone and I go way back, and I have a lot of respect for his knowledge and expertise in tinnitus and hyperacusis. In hindsight, I believe my wording regrading habituation was incorrect and for this reason asked @fishbone to read my posts: The Habituation Process and How to Habituate to tinnitus.

In December 2023, I started to develop a build-up of saliva at the back of my throat and noticed my voice was becoming a little harsh. I also noticed I was coughing more than usual. To use that well-known saying, it often felt like I had a frog in my throat, as I was also having some difficulty speaking. A friend noticed this and brought it to my attention. I went to my doctor, and he diagnosed post-nasal drip. Please look up the condition online. It can be an annoying problem and quite common. It can come on suddenly, then go away and return. There are various treatments for it. The most common use is a steroid nasal spray and a Breathe Easy nasal spray that contains micro-diffused seawater.

My doctor advised me to use the nasal sprays in the morning and evening. By late January 2024, I was starting to feel better. My doctor advised me to continue using the sprays. In early February, my tinnitus suddenly got louder, as previously mentioned, and reminiscent of the four years it took me to habituate from 2008 to 20012 for the second time. I didn't know what caused it, but now I believe it was the steroid nasal spray. The ear, nose, and throat are all connected. Of course, I was very worried and was sent off for the Cleanhearing Sono device. It helped briefly, but I experienced difficulty using it as my tinnitus increased.

I have stopped using nasal sprays, and my tinnitus has returned to normal. My Tiex machine stopped working last May after 11 years of use. I want to give my ears complete rest and will probably start using Cleanhearing Sono in June. Cleanhearing was kind enough to extend the rental period free of charge until August. If my tinnitus improves, I will buy the Sono device. If I experience any adverse reactions using it, I will return the device and explain my reasons.

Michael

 

@gameover is right. In all my previous posts in this thread, and in many others, I have recommended protecting your ears. So, there is something you can do to combat worsening.

 

Maybe in this thread. But we both know you have chucked out that tinnitus always gets worse without any other warnings.

And @gameover, nowhere have I said not to protect your ears. I'm in hearing protection for 90% of my day.

 

To summarize, absolutely none of us here have any clue. The only thing we can all agree on is that blasting music directly into your eardrum is bad.

I agree that TRT can be dangerous for some, as white noise generators may not be ideal. However, most people who experience tinnitus have a mild, stable variety, and it’s the anxiety of suddenly developing this condition that’s a massive factor for them. In my personal opinion, TRT can be helpful to those people. Acceptance is the key component to living with tinnitus, and time is the most critical factor in delivering it. Maybe TRT can get you there slightly faster, who knows.

There is really no understatement when people mention that no two people's tinnitus is alike. @Michael Leigh attributes his worsening in part to steroid nasal spray. I’ve been using steroid nasal sprays on and off for months, and if anything, they bring me relief.

It would be easy for me to sit here and say that people's tinnitus often gets worse based on my personal experience because mine worsened. But that would be false. I know many people in my trade who have tinnitus and have never noticed any change, regardless of what they do.

It’s a shame to see people I like arguing quite vehemently with one another, but I understand it’s because they each have a strong viewpoint on how to prevent tinnitus from worsening. So, I know it comes from a place of care.

 

I wasn't trying to be disrespectful by "throwing it back at you," but those were facts supporting the point I was making in reference to worsening and habituation (or lack thereof).

Those things I mentioned in my profile are over a lifetime, but I have protected my ears since my tinnitus turned severe 27 months ago. I have had worse developments during that time.

I don't expect a complete cure and never talk about that. Hopefully, there will be an actual treatment in the not-too-distant future that helps lower tinnitus, something that the Auricle device should do for some people, based on the study. The loudness of tinnitus makes all the difference in how it affects someone. I was habituated to a milder form of tinnitus for over 20 years. Severe tinnitus is completely different.

While tinnitus isn't mental, it can be very disruptive when trying to focus on something. There is a direct brain connection with severe tinnitus automatically activating the sympathetic nervous system and putting you into a fight-or-flight response, even if your thoughts and focus are on something completely unrelated. Benzos are one thing that can help with that temporarily, which you mentioned taking yourself.

I think I have read most of your commonly referenced posts.

Good luck habituating. Hopefully, the Cleanhearing Sono device will help.

I can't recall every post, and the context would matter, such as if I was following up on someone who said the tinnitus volume would definitely get lower. But I have certainly given the protection advice often outside of this thread.

 

I'm sorry I come that way to you.

All I know is that minor things that would not bother a normal person one bit worsened me—a minor door slam, a drive in a car in 26 db custom-fitted earplugs. The only way to keep stability for me was to live a very quiet life; even then, I slowly but progressively worsened, even if my ability to deal with it improved. But I cannot keep up with every serious worsening. I tried to live normally to the extent I could, yet here I am with much more tinnitus and now more persistent noxacusis. Overprotecting increased hyperacusis, but seemingly temporarily. Some of us may be doomed, including you and me. Maybe we share some ancestor with shit genes.

I wish you the best, really.

 

I am pleased you found some relief using the steroid nasal sprays, @Hardwell. It did help relieve the post-nasal drip. Although I am not using the steroid spray at the moment, I am still using the Breathe Easy nasal spray, which doesn't contain steroids. I realize it's possible the symptoms of post-nasal drip will return because my understanding is that this condition can be difficult to treat. As I previously mentioned, my tinnitus has now returned to normal. If I have to resume using the steroid nasal spray, I will try using it at a reduced capacity.

I fully agree with your comments, @Hardwell. In the ten years I have been visiting Tinnitus Talk, it has been my purpose to help people with difficulty coping with tinnitus and hyperacusis and not to get into arguments with other members. Over the years, I have had to place certain people on ignore because their intention, unlike mine and others, to try and help people in distress with tinnitus is to ridicule and draw people into an argument, which is not what I am about. It is one of the reasons I am a private person and rarely talk about my personal life or go into any great detail about the difficulty that I sometimes have with my tinnitus. Even though I am a veteran of this condition, it became extremely variable in 2008. Thankfully, I have habituated to this, which took over four years.

I wish you well,
Michael

 

Everyone: