Six Months of Tinnitus — Three ENTs and Three "Learn to Live with It" Later...

You said that the ENT poked a hole in your ear drum. My ENT suggested to doing that, but I didn’t have it done because I was afraid it would make my tinnitus worse? Did it make your tinnitus worse? How did your ear feel when he did it?

 

TRT is a scam.

Try physiotherapy.

 

This is very true. In their 5 minute lecture about tinnitus in school they hear, "Oh patients just habituate to it eventually and it isn't a problem." This leaves out the fact that tinnitus is a spectrum and in the higher spectrums it is harder and harder to habituate. Not that it can't be done, but that it can takes a longer time and can be very distressing. Some minority of people also can't habituate regardless of tinnitus severity due to their brains not having that capacity.

 

Reading this made my blood boil!

One part of me says, they have this response because they either never experienced tinnitus or only experience tinnitus at the very low side of the spectrum/intermittently. They are ignorant and this is the response they give because they can't conceptualize it.

The other part of me says, fuck this person. They are too stupid and up their own ass to have any sympathy for something they don't understand. If they truly believe what they said to you and think you are bringing this upon yourself, they deserve to lose their license.

It is well understood at this point and time that tinnitus is VERY distressing and life changing. Although different, tinnitus is similar to pain. Would you tell someone who is in really bad pain that its not that bad and its how they are thinking about it? No, you fucking wouldn't. Someone who works in the audiology field who doesn't know this by now shouldn't be working in it.

 

Agree 100% with what you said. The vast majority of people on here realise volume is completely different from perception. Also TRT isn't some form of magic cure and those of us on this forum know that (apart from the copy & paste headphone guy).

 

My first time through TRT, I was stricken with panic attacks, heat stroke (weird I know but my body equilibrium was wild), extreme hyperacusis, and catastrophic tinnitus. I lost 30 pounds (155 to 125), couldn't sleep, was unable to drive more than a mile or so. Things were BAD. Being in full fight or flight mode the counseling was calming and the TRT white noise devices did help.

However, if one has a basic knowledge of tinnitus, limbic system, sympathetic nervous system... the counseling is fairly mundane and not much use. It is based on Jastreboff and I believe some of his theories have been debunked?

So I would only recommend TRT if one has the $ and is in an absolute total panic with catastrophic hyperacusis and/or tinnitus. Otherwise, this forum would probably be just as helpful, if not more so.

 

Doctors are filthy, money-grubbing pigs who are completely disenchanted with their jobs. If they cannot diagnose you in 10 minutes, they will never diagnose you unless you have money or are actually in the hospital and it is a life or death matter.

Your problem CAN be diagnosed and treated. However, unless you are paying out of pocket you are likely to suffer until you learn to accept the condition, the condition goes away on its own, or it kills you.

 

What treatments are you referring to when you mention paying out of pocket?

 

Imagine you are Tom Brady. After the first game of this upcoming NFL season, Tom Brady complains of a pulsatile ringing in one ear or both. Given his fame and value to his team, he will immediately be sent to the hospital for a thorough evaluation.

In a short time (days) Brady will be seen by multiple specialists - ENTs, neurologists, neurointerventional radiologists, cardiologists, and probably a host of others if necessary.

Doctors will give him extensive blood work and examine his external body thoroughly. They will examine his heart and vasculature comprehensively. They will exhaust every question possible regarding his pulsatile tinnitus to determine what makes it better or worse, if anything. Then they will give him comprehensive scans of his brain, neck, skull base, cervical spine, jaw, and temporal bone.

Some of the most educated and skilled professionals in the world will work together to analyze the scans and all the other data to try to find the problem. They will likely find the problem quickly because it is Tom Brady and his life matters. Your life - not so much, unless you have money or fame.

If you go to the doctor, the doctor might dismiss your concerns at first due to ignorance or apathy. Because the doctor is inundated with patients with crap insurance and has a tight schedule, you will get ten minutes at most to talk about your problem. The doctor will scribble some notes and likely forget about them forever as you are getting shooed out the door so they can profit from the next sheep walking through the door.

If you are lucky you will get an ENT appt. At the appt., the visit will be much the same. After a brief examination of your ears, you will be shooed away, maybe with an appt. for an MRI/MRA. Your scans will be analyzed by some unknown radiologist who doesn’t know a vein from an artery ( hyperbolic, but representative of general ignorance). If the radiologist finds nothing, the ENT will say there is nothing I can do.

At that point, you are shuffled back to your primary care doctor who probably doesn’t even have the scans. The doctor will be reluctant to give you any more referrals because the scans ruled out anything “dangerous.” That is not true but who are you to question the almighty, right? At this point, you have probably been enduring PT for at least six months and still have no hope for a diagnosis or cure. Why?

BECAUSE YOU’RE NOT TOM BRADY.

Your insurance, like that of most Americans, entitles you to garbage treatment if their problem cannot be solved with an antibiotic, a shot or a pill. The only things you get that Tom Brady does not are:

1. A hard time.
2. A copay

Good luck. You’ll need it.

 

So what happens to Tom Brady in the end?

Say his hearing tests come back perfect, scans come back all clear, bloods clear, everything looks fine but he complains of extremely loud ringing in his ear? What can the doctors do then? How do they stop the ringing?

They don't.

Recently, a billionaire (Kent Taylor, Texas RoadHouse) killed himself when his tinnitus got worse.

Being rich does not cure tinnitus.

 

Kent Taylor had pure tone tinnitus and he had it only a short while. I am pretty sure tinnitus was only part of the reason he committed suicide. Pulsatile tinnitus usually has an identifiable cause if there is enough investigation. The problem is that the average person cannot get extensive testing and examination and if they do it often takes years. Moreover, there is often no continuation of care, no doctors from different disciplines working together to arrive at a solution. The care is often fragmented and unsatisfactory.

It is not CERTAIN a cause would be found for Brady’s hypothetical pulsatile tinnitus but there is a good chance the cause would be found and quickly.

Read about Dick Cheney and his heart trouble. That guy should have been dead years ago. His political influence and wealth have saved him.

 

What makes you think Kent Taylor had anything else going other than the insanely horrible tinnitus spike from getting the COVID-19 vaccine? Maybe he had highly reactive tinnitus and he couldn't take it.

 

Because normal people do not kill themselves because of sound in their ear.

 

Extraordinarily simplistic and in my opinion, offensive comment.

 

Tinnitus comes in many forms and intensities and no two people will experience it the same. Please be in no doubt tinnitus can be a seriously debilitating condition and affect a person's mental health in such a way, they might want to cause their own demise.

It is not a matter of "normal people do not kill themselves because of a sound in their ear", which isn't entirely accurate because the noise is actually coming from the brain, although many perceive the sound mostly in the ears.

With respect you are relatively new to tinnitus and have much to learn. I advise you to think carefully before making such a statement again, because tinnitus can change fast and can be ruthless and very unforgiving in its severity.

Michael

 

Are you aware that Kent Taylor only got two hours of sleep every night for four consecutive months?

Can you fathom the scorched-earth destruction that would result in anyone's consciousness from such monumental sleep deprivation?

This, I believe, even exceeds the infamous methods used by the KGB and North Korean State Police.

Are you familiar with the now famous case of Gaby Olthuis from the Netherlands, and how a panel of physicians concluded that such severe tinnitus warranted a visit from one of them to administer a lethal drug? They apparently presumed that the most humane solution was what "normal people" would in fact be entitled to as a final end.

 

I was not familiar with that euthanasia case. It is not reasonable, at least in the United States, to offer euthanasia for distorted sound perception, whether arising internally or externally. There must be a way to surgically render a person deaf, which should eliminate the sound. To me, being deaf is preferable to death. Of course, no surgeon in the US and much of the world would purposely destroy a person’s hearing because of subjective sound perception. One would probably need to travel to a country like Mexico or Thailand.

I have gone through periods of sleep deprivation, including two times of 100 straight hours with no sleep. My sleep problems were not due to tinnitus but were nevertheless disabling. Still, I never thought about suicide.

I stand by my original comment that normal people do not want to kill themselves because of tinnitus. If everybody thought like Kent Taylor, we’d be short a couple billion people on this planet.

 

You should give @Michael Leigh's post another read.

 

I will not be too harsh on you because you clearly lack the knowledge and understanding to realize how severe tinnitus can be for some people. What I won't abide is someone that is not willing to learn and visits this forum to sprout absolute rubbish. I have had tinnitus for 26 years and am still learning more about this condition and life, for no-one knows everything. Therefore, please note the following:

If the auditory nerve were to be cut and one becomes deaf according to what you have written, the patient would still hear the tinnitus because the noise is coming from the brain. I have corresponded with a few deaf people that have tinnitus and feel incredibly sorry for them, because they are unable to use sound enrichment to help distract from hearing the tinnitus as they are deaf.

It reads on your profile cause of tinnitus unknown. Although this can happen, something usually causes it. The most common cause is exposure to loud noise and typically, it is listening to audio through any type of headphones at too high a volume. Other types of loud noise exposure will cause it too. If your tinnitus was noise induced, it is probably low and manageable at the moment. Please be aware this type of tinnitus can change fast as mentioned in my previous post and unleash a ferocity of noise upon you that you wouldn't believe possible. I truly hope this doesn't happen because you will come to realize what the members in this thread are talking about.

My advice is to acquire more knowledge about tinnitus. Start by perusing the many posts in this forum and hopefully prevent your tinnitus from getting worse. This way you will not utter pure bunkum due to your lack of understanding.

I wish you well,
Michael

 

Suicide is not the only factor when considering how incapacitating this condition is.

I previously posted this:

"With all due respect, I have been analyzing all sorts of websites on tinnitus ever since I got this condition on 01/2014 and I have encountered so many tragic, heartbreaking notices of suicides that I eventually lost count. This includes reporters' articles from interviews with the ATA, personal stories on all sorts of YouTube sites, reports from the British News Media, and most tellingly the number of sufferers who once posted on this forum who were never heard from again (or who we learned about for a fact).

Let's not forget the consequential pathologies from this condition such as alcoholism, drug addiction, divorce, incapacitation that led to lifelong reclusiveness, domestic and other forms of violence, lives generally ruined that led to homelessness, and misdiagnoses that led to treatments for unrelated mental illnesses."

 

Wish I could give you what I am experiencing and see what you think. >;/

You are lucky to have only what you have. Why are you in this thread? You obviously have no clue how bad tinnitus can get. It doesn't matter who you are or how strong you are.

 

Reactive tinnitus is a small subset of the tinnitus population, so it’s hard to say with certainty.

Here’s what we know about Kent and the timeline of his unfortunate suicide:

• Owner of the noisiest restaurant chain (Texas Roadhouse) in existence
• Contracts COVID-19 in November 2020
• Develops severe tinnitus from COVID-19 (unknown if he had pre-existing tinnitus)
• Tinnitus progressively worsens to a point where sounded like a jet airplane taking off
• Sought out Lenire in Ireland and had specialized experimental treatment
• Immediately saw improvement in one of the ears after said treatment
• Started feeling good and hopeful for the future
• Gets a COVID-19 vaccine shot in March 2021
• Tinnitus goes back to excruciating levels almost immediately
• Kills himself with a gun 2 days after the COVID-19 vaccine shot

I think it’s fair and reasonable to say tinnitus was the main culprit for Kent’s unfortunate demise. But I won’t hold it against anyone if they were to say his suicide was premature. He only had it for 4 months. No telling where he and his tinnitus would end up 2 years down the line minimum.

I still hold the belief that suicide is illogical if one hasn’t exhausted all possible options, namely trialing through every single antidepressant available for instance.

 

If he got relief after treatment in Ireland, one must ask why he didn’t go back for treatment after the tinnitus returned.

My pulsatile tinnitus in my right ear gets quite loud at times. I heard it for 8.5 hours straight while driving home from a trip yesterday, even over traffic. When I don’t sleep well and get stressed it is worse. I have also been having other symptoms. Oh yeah, I’m poor too. Despite those issues, I don’t want to kill myself. I firmly believe Kent had other problems and the tinnitus sent him over the edge.

 

Oh dear, you just don't give up. Please go to my started threads, and read: What Is Severe Debilitating Tinnitus? Take your time and read it without skimming. Hopefully you will then understand.

I hope your tinnitus never reaches these relentless levels.

Michael

 

@Russell Grimes, I don't understand why you can't believe that severe/catastrophic tinnitus is enough for someone to want to end their life.

 

I'm ready to exhaust all options. Please help.

 

I would tell you it might be time to consider looking into antidepressants and find which ones can help you. Maybe it can improve your mood, sleep, anxiety, and make you function somewhat normally at least. For what it’s worth, I’ve seen testimonies of people’s tinnitus and hyperacusis improving while on them (it seems rare though), so it has to be worth considering at some point.

But I’m fully aware that you oppose all drugs/medications at the moment, so I can’t really offer you much advice then. I suppose you could look into creating a comprehensive brain boosting nootropic stack. Some more patience is probably needed too. Wait it out more, protect yourself from injurious noise and improvements/stabilization should come to you.

But if someone is at a point where they are brainstorming or planning on ways to commit suicide and they have not yet cycled through all available antidepressants, I think they’re acting irrationally. It makes no sense. What do you have to lose at that point? Might as well go all-in with as much drugs/medication as humanely possible to help improve QoL if there’s a chance that it could. Who gives a shit about ototoxicity or worsening at that point.

Something to think about.

 

Does it make sense to you that a suicidal person would get a COVID-19 vaccine? If he wanted to live because his tinnitus was not that bad before he got the COVID-19 vaccine, why would he kill himself just two days after the vaccine if the tinnitus once again became severe? Why would he not seek the treatment that worked for him before?

There are people with severe, debilitating diseases that cause progressive physical decline. Many of those people do not kill themselves. This Kent guy had a boatload of money and the ability to walk and talk and function physically. His only limitation was his fragile mind.

 

I've had tinnitus for 19 years. I've had severe tinnitus for 13 years. I'll leave those reading to figure out why this is relevant by the end of the post.

When I was 19 years old, I worked at a music venue, so subsequently became friends with a lot of professional musicians and music students.

One of my friends was studying music at university at the time and told me one day (after classes) they had just attended a lecture on the dangers of hearing loss and tinnitus.

At this, my "ears pricked up" (ho! ho! tinnitus humour).

Le Me:


Mon Friend: Oh no! That must be awful!

Le Me:




1 concert and an ear infection later:


Oh, but I didn't commit suicide, did I? So all of the above is invalid.

If that's what you're thinking, then let me let you in on something. This is me now:


Basically, this website contains the best warning you're ever going to get as to where this rabbit hole leads, and if what you see here doesn't convince you, then you're just going to have to wait until your own inevitable decline does.

I've said it before and I'll say it again: most people don't learn by being told, only by being burnt/stung themselves. Just like me.

 

I’ve asked myself this question too and it’s the one of the few things that makes your argument hold any water, but if you took the time to look into this matter, it’s clear the evidence points to tinnitus being the sole driving force behind Kent’s eventual suicide.

We have testimony from his son, Max Taylor. According to him, Kent spent every waking minute looking for a way to cure his tinnitus. He reached out to tinnitus researchers like Hubert Lim and even donated $500k to support new clinical studies using Neuromod’s Lenire (aims to treat tinnitus). He sought out meditation books on how to find joy when he was at the worst point of his suffering.

The nature of Kent’s tinnitus — "a jet airplane taking off in your ear 24 hours a day, seven days a week — sounds extremely difficult to cope with. I’m sure you could find people who would, but I also think you’ll find a whole lot of people who won’t be able to manage really well with tinnitus as roaring loud as that.

Here’s the article to back up my claims if you were wondering. Unfortunately, it’s locked behind a paywall, but a kind user was able to screenshot some sections of the article here.

I initially thought he may have also suffered from other debilitating long term symptoms (aside from tinnitus)c aused by COVID-19 such as impairments in cognition and mental health, but no additional information has ever been presented to suggest this.

So, while I agree we shouldn’t be pretending as if we know what was happening in the personal lives of these people and that it’s always best to wait for more information to come out before we make rash judgments, there’s more than enough evidence however, to conclude that Kent was suffering brutally from tinnitus for 4 months which ultimately led to his unfortunate suicide. I think your judgment is a bit misguided here, but don’t let that stop you from feeling differently on the matter anyway. It’s a discussion forum after all.