I'm Not Committing Suicide. I'm Being Murdered by Merciless Tinnitus.

Can I share your sentiments Bam.
This affliction is just too much, my suffering friend.
Sometimes I cope, after a fashion,
but I also despair.
Dave x
(Who a lifetime ago
used to be a classy Jazzer.)

 

Hello -to those here. Title of thread totally completes my situation. I am not a new member.
I returned after quite some time when capable, and after I read:

@ Telis: "....it’s nice having people here these days that understand what tinnitus can do to a person. I joined TT around 5 years ago, there were a few of us that spoke out, but we were very quickly attacked and most were shoved out...."
Very much agree. Thanks Telis for saying so. Same happened to me.
Certain people who narrow-mindly criticize people's suffering at this level, really have no idea or understand what severe chronic T is, or how/had/what happened to them related to it. Why are specific people ignorantly making quick judgements and assumptions of others suffering, as if they're experts?

No- my T has not improved "with time"...not even the slightest. I didn't leave because I "got better" or "scared" as some assume. I became incapacitated. 5 yrs suffering to now progressively physically disintegrating overall from lack of true help and care from "outside the internet" medical field. It IS a disease.

@Auttumnly: "You don't have many options left when you have severe tinnitus and severe hyperacusis."
Agreed. Severe chronic T is when one struggles daily and nightly in not being able to normally physically function because movement escalates and exacerbates the symptoms preventing to do the daily trivial things some people with "lesser" form of T take for granted, -assume- and criticize others for not doing same?! The inability to handle reading the reality and truth from sufferers on -selected- threads on TT? Very strange indeed.

@ Bam: "Silencing this thread and maintaining the status quo is exactly what all the ENT’s, doctors and coping industry leaches all want. So they can go on belittling, sneering and stealing off their easy prey.....trapped sufferers"
Very much agree of this being number one - it's frightening.
Personally, it's very much appreciated to read others being straight-forward and honest to the core, which NEEDS to be said especially on a support forum! I do not feel so alone now. It takes one to know one. How else can anyone be able to express their frustrations, share experiences, bring up awareness on it with others at same level, when certain people keep redirecting to shush the truth and belittle the severity so many here consistently describe?

Because of twisted ignorance, is what it means to being murdered by merciless T. So loud, yet still not heard.

 

Welcome back...this time around you will have lot of people here, who do understand what it's like to be in that situation.

 

Bam. Ditto. I've had this for 10 months (a lightweight compared to many Herculeans on this forum), but it doesn't matter how long you've had it. It kills you every @%$#ing moment of every day. I came very close to silencing it permanently just last night. I have good days and bad as far as coping with it. The killer for me is no quality sleep.

Latest crumb of hope was that a friend told me she had it for 5 years after a bad ear infection, and then it just went away completely after using garlic oil in her ears for a week. Guess what's in my ear right now, stinking up my headphones? But the main thing is how this completely murders you into not caring about anything anymore. Have not gotten a full 8 hours of sleep for almost a year. I have adapted as much as I can, with the sound of crickets in a headband with speakers to sleep, and on my computer, in my car - 24/7 crickets. It's the only thing that masks it. But I can still hear it unless I crank the crickets so loud that I'm probably going to make it worse. I got so furious wit it all that I started slamming the side of my head with my hand REALLY hard and screaming STOP IT!!!! And then I heard a loud Piiiiing and then it went away but the tin in that ear is now a bit louder. Genuis. It makes you do really stupid things.

Taking every bloody supplement you can name. Well, I stopped because I couldn't afford it anymore, just down to magnesium, ginko, Vit. A and a few others.

I have to say that the garlic oil seems to be doing something, as my entire sinus area is clearer than it has been for 1.5 YEARS when this allergy BS started that led to the tin. Breathing totally clear now, no crap in my throat - so that's something, I suppose. I'm 62 but I used to be really fit, training to climb Mt. Whitney and Shasta, really strong and loving the outdoors. Now I have to struggle to wash my hair and go get groceries. I have to take earbuds and crickets just to take a walk. I want to hear the BIRDS.

I just don't care about anything anymore. This has ruined me. I really hear you on that. I can't afford thousands of dollars for some gadget. I don't see a future anymore. I'm giving it until the end of this year, and if it's still as bad as it is now, I'm gone.

I would normally be so much more hopeful and encouraging, and I was after the initial suicidal bout, but it's been going on and on and I am just spent from no good sleep. I hope you find some relief, my friend. I hope we all do.

 

Torture. That’s what it does. When it’s constant and neverending it blunts emotion. It effectively turns you in to a hollowed out zombie. And we are suffering an intensity and longevity of torture that is pretty much beyond compare.

Every single day I want to shake my family and friends and say wake the fuck up?!? Do you not see or understand?!? I hear a piercing scream in my brain day and night that never ends....Unless you’re in imminent danger of killing yourself or are about to be waterboarded indefinitely I can no longer empathise with you. We have nothing in common.

And I don’t want platitudes and encouragement to live in this tortured state for years.....I want you to be as outraged as me that there is almost a complete lack of care or awareness for those of us suffering this torture.

I want you to understand that I want a f***ing treatment beyond trying to convince myself this hideous noise is somehow normal......and in the abscence of that I want support to end this nightmare in a humane way.

And to be very fucking honest I do not think I can call you a friend if you’re way of dealing with my suffering is to simply encourage me to rot in a dark horrible corner until i can take no more.

 

I am so so sorry my friend, as I am for every one of us real sufferers.
(Important to differentiate I feel.)
I have no master strokes to offer unfortunately.
I’m reluctant to suggest anything as you’ve probably tried everything already.
I feel just as desperate as you sound.

The two things that help me slightly are Melatonin at night.
A low dose of 2mgs helps me to sleep longer, though of course, I still wake up tired from neuronal activity.
And paracetamol during the day when the pressure in my head increases.

We all deserve so much better than this.
We deserve the life we had before.

Dave x
Jazzer

 

@Bam - Yes. it IS torture, and I would be as outraged and off the charts angry as you are if I had any energy left at all. I'm spent. You can out-outrage me.

@Jazzer - Thank you.

 

Sadly my outrage is a total waste of time. I will inevitably just burn myself out and be as spent as you in due course my friend.

And when all is said and done the myriad of dire consequences of what T did to our lives will be blamed for our demise instead of the actual disease.

 

Your outrage is not a waste of time Bam.
You excell at writing stuff other people feel, but don't necessary express as well as you do...you are truly gifted that way.

I really think, that threads like this one help to start a fire of outrage.
An outrage at the medical establishment for failing to give us a WAY OUT..
Be it cure, effective treatment, or at least a dignified peacefull ending, which does not involve having our brains splattered on a concrete sidewalk under some bridge.

It might seem that your outcry is falling on deaf ears, but you have the attention of many...
One of those could turn out to be "the one" who will be inspired to find a way to get rid of this evil, life destroying piece of shit for good.

 

I agree...

@Bam - I just now found this thread and read your story. I’m very sorry to hear what has happened to you. A lot of people here saw their hopes and dreams crushed... and had to figure out a plan B to carry on.

Wolfears’ comments just gave me an idea.

Why not turn your outrage and personal experience with T into a book?

It’s clear you have the talent and a way with words that would enable you to create an excellent - and long overdue- open letter for more awareness... perhaps even a greater sense of urgency for finding a cure.

If you couldn’t get the book published, you could always release it as an e-book to be spread to whoever could have an impact.

Another reason I suggest this, is that it seems to me that writing, sharing your story and discussing the unfairness give you some comfort. That it’s important for you to inform others what it feels like. And you excel at that.

The project itself could give you an outlet...

Also... You care for animals and donate to animal welfare. You want to give a voice to those who suffer but are too often overlooked. Animals and tinnitus sufferers share that at least.

Perhaps your story, your writings could make a difference?

 

How can it be normal to wake each day to excrutiating noise in one’s head. The pain is enormous and yet most of us try to keep going in whatever way we can.

 

This is why the concept of habituation exists and doctors fall back on the line ‘oh most people get used to it.’ Because how many of us severe sufferers even bother with doctors anymore?!

I haven’t seen one in months. I’m in hell and my life is a million miles from where it would have been without this vicious curse but as far as my GP is concerened I’m a ‘habituation success’. Statistically I’m alive and as I’m no longer seeking help or guzzling their useless drugs, I must be no longer bothered by my T.

The statistics are a fucking joke and the BTA’s top priority should be to uncover how many people in the U.K. commit suicide linked to T each year and more importantly how many people live in a state of being actively suicidal and have zero quality of life due to this condition.

This forum shows a shockingly misrepresented number......It stinks of a mass turning of blind eyes at best and not a huge stretch to see it as a cover up to retain the status quo of downplaying the effects of T to defend the bullshit coping industry and drug companies who love peddling AD’s and benzodiazepines to desperate people who have zero other choice of treatment, often worsening our mental states to the point of complete collapse.

 

Here for example is a text exchange with a ‘leading tinnitus specialist’ in the U.K. Hashir Aazh. I paid him over a thousand pounds for CBT and when it didn’t work (and wasn’t even proper CBT) he desperately tried to lure me back in to having more sessions. When he realised I had wised up his response was blunt to say the least.

These f***ing people need to be named and shamed and shut down. They cannot cure tinnitus. They cannot help with tinnitus. All they can do is make your situation more dire by robbing you of money with false promises.

 

Another tinnitus expert I don't trust is Professor Richard S. Tyler who was recently appointed to Neuromod's clinical advisory board. This expert has publicly stated that people who don't habituate are simply anxious and stressed and don't want to accept their tinnitus. Habituation, according to him, also means that you rarely hear your tinnitus. Severity doesn't matter. Everyone can learn to ignore their tinnitus. A bit ironic because he also says tinnitus annoyance is influenced by tinnitus characteristics... but apparently doesn't affect habituation. Images from his presentation under spoiler.

Spoiler

Dr. Hashir Aazh also has a twitter account and youtube channel.

Spoiler

 

That guy is a perfect example of yet another typical medical ass clown...
I would like to revert to my old analogy of rigging a cattle prod to this guy's sack and jamming the trigger.

Then it would be very interesting to observe, how long before "acceptance" and the subsequent "learning to ignore the pain" would take place.
Maybe someone could also create a power point presentation to go with it?
I would pay good money to see that one unfold.

 

The numerous broken frail men I saw hunched on this mans sofa with their anxious looking partners waiting for ‘treatment’ was truly shocking and sad. I was just one of dozens lining up to pay him £200 an hour for nothing more than bullshit waffle. This man and others are shattering peoples hope and pushing them ever closer to suicide with their falsehoods.

 

Were they all men?

 

Wow, that is a powerful point. Where exactly does this "most people habituate" statistic come from anyway? Anyone know of a solid source?

 

Whilst an unhelpful generalisation is it not borne out of what Bam describes above?

That most people are told that they have to get used to it by their GPs and so choose not to follow up (classified as habituated), that fewer people kill themselves than who choose to ‘live with it’ (classified as habituated) and that those who seek support for it are mostly treating the reactions and thought processes in relation to it thus making it underrepresented, as it is then incorrectly placed under the anxiety/depression banner then

 

I think @Hazel found these two studies: link1 - link2

Spoiler

Prefer not to answer / Do not know: <1%
Not at all: 32%
Slightly: 47%
Moderately: 16%
Severely: 3%

But with a condition as common as chronic tinnitus, even if "only" 3% suffer severely, that's still millions of people. Also, 1/5 is moderately-severely affected.

Edit: But about the second link, "Field 4814 was collected from participants who hear or heard noises (such as ringing or buzzing) in their head or in one or both ears that last for more than five minutes at a time, as defined by their answers to Field 4803 and except those who indicated they were completely deaf, as defined by their answers to Field 4803"
So are we even talking about chronic tinnitus here?

Study 3: Prevalence, severity of tinnitus in the US

• 7.2% reported their tinnitus as a big or a very big problem
• 42% who reported it as a small problem

 

If you paid £200 per CBT session then you have been completely taken advantage of as you already know.
I have CBT training although not for tinnitus and that fee is extraordinarily high.
I’ve tried hypnotherapy, cranial therapy, homeopathy and numerous expensive supplements. The result seems to be that I must endure it and just try to cope. All were helpful but nothing has changed the tinnitus.
It’s fraudulent to indicate that CBT treatment can actually reduce tinnitus but that’s my personal opinion.
@Bam

 

The keywords which sum up true, deep tinnitus suffering are the relentless, sickening, torturous noise which leaves you continuously hollowed out mentally, emotionally, spiritually and physically.

 

I WANT TO SHARE WITH YOU ALL AN EMAIL I SENT TO THE TINNITUS CLINIC IN LONDON A FEW WEEKS AGO. SUFFICE TO SAY THERE WAS NO RESPONSE....


Dear Jacqueline

Let me explain, I have had loud ringing in my ears for over 30 years. In fact, I also have a loud high pitched static sound above any noise which kicked in 5 years ago. I used all my cognitive skills to deal ( with assistance from Jane Henry book, very good) with those traumas and was able to find a way to live along side them fairly trouble free in the end ( as much as of course they continue to play in full verse). However, 2 months ago a loud bass like sound started in my left ear. I thought someone was playing loud music in a house or in a car next to me as I heard this pounding bass sound. I went to find the source and it became apparent that it was coming from my ear. The sound in a quiet environment is unreal...pounding and rasping and loud. I can feel the sound physically and it makes all the other sounds feel like nothing in comparison. It gets mixed with other sounds of a similar frequency (like car running sounds or commercial aircraft passing overhead) to either exacerbate them or make me feel disorientated with lots of confusing heavy bass noise. If I close the windows at home, it feels like there is a bass war going on outside but it's coming from my ears (nothing is going on outside ?!?!)

A truly confusing sound. If I sit in a quiet place it builds quickly into a huge noise and is utterly unbearable. It is crushing me and all the mental resources and knowledge I used before aren't helping me. It almost feels like it can't be defined as tinnitus, if that makes sense, because so many people describe tinnitus as ringing or high pitched whereas this is a low frequency deep ugly loud booming bass sound. Have you ever heard of anything like this? I'm so desperate I'm reaching out hoping for some kind of miracle or light. Frankly, I'm so bad I don't want to go on and i truly feel like I will be soon taking my own life. I just can't see a way out. That is not a threat, it's just what my mind feels is the only way out of abject daily mental torture which debilitates so highly my daily life and pleasure.

My logic right now is that I cannot believe that anyone could live with this and if they do, it must be abject misery and suffering. The noise is so loud, confusing and wearing there is no comfort to being with it, whatever cognitive reasoning I apply. Have you ever known anything like this?

Thanks in anticipation.

 

Kind of a telling scene from the film that depicts how life stops when an intrusive sound enters your ears!

The Truman Show (1998) | (1/5) | Radio

Keep volume low!

 

My whole point for nearly a year is that we are all consistently targeted by fraudulent people who we are supposed to trust. In my opinion Hashir Aazh is a snivelling little pathetic conman... plain and simple. He is also one of the NHS’s ‘top tinnitus guys’. He privately profits from this absurd badge. He also is in bed with local ENTs and shrinks who he tries to foist on his patients in return for a kick back. All of them are laughing and know full well none of us will benefit from their ‘expertise’ because none of them actually have any when it comes to this entirely misunderstood nightmare. But when they’re in on the biggest ruse in medical history do they give a fuck?!? No.

 

Every single one I saw. I will never ever forget their forlorn desperate faces. Each and every one of them was in the same desperate boat as me. One was literally trembling as his wife held him.

 

Think you mean Groundhog Day?

 

Ideally, this is a perfect place for a team of investigative journalists to come into and expose this lethal condition for what it is...

A short interview with the trembling man would likely reveal a sad story of yet another sufferer, who will most likely be forced to end his life in a gruesome way, because the medical establishment, media and various tinnitus associations keep pretending, that people like him don't exist.

 

Unfortunately, most people will not believe tinnitus can do that to a person. He would be classed as mentally ill (overly anxious type) as many people live with tinnitus no problem. I have talked to tinnitus experts in my area, they believe that the difference between someone that is not bothered by tinnitus, and someone who is has absolutely nothing to do with the tinnitus itself, and everything to do with having a predisposition to mental illness (anxiety). I would imagine having a history of anxiety would definitely be a factor, but so would the severity of the condition! It’s handy to just look one direction though I guess.

I was also told that tinnitus is all roughly the same volume. This I know is absolute garbage, at onset of my tinnitus after barotrauma, I had a little high pitch hiss that I actually had to plug my ears to hear, or be in bed. The only reason this bothered me is because I thought i might be loosing my hearing, no issue otherwise.

After a visit to the doctor I was given antibiotic ear drops, hiss turned to louder hiss, continued with the ear drops on doctors orders, louder hiss turned into noticeable hearing loss, multiple loud tones heard over environmental noises. Back to doctor, antidepressants, sleeping pills, plus benzos, head now going haywire. This lead to cold turkey because I thought the pills were making it worse, oops now I’m really in trouble, things worse again through withdrawal. I live in hell for years in this state with not a single “expert” believing this story about the dramatic changes in my tinnitus. Gave up seeking treatment, or even speaking about it.

Tinnitus for 5 years wore on me, shingles appears from what I believe to be from years of tinnitus stress, attacks all nerves on the right side of my spine, couldn’t walk. Something also to do with my spine on top of shingles. Doctor orders MRI, fourty minutes in the machine not given protective muffs, now I’m in the elite tinnitus club!! I’m to the point that I’m now mentally unstable, can’t sleep for more than 10 min at a time, wake shaking with shooting adrenaline from the extreme tinnitus racket, my brain is screaming in pain, my ears/brain are pressurized, I sit and shake all day crippled and exhausted, but impossible to sleep or relax even a bit.

I went from wow I wonder what this noise is to I’m not sure I can take it for one more hour even if I want to, not to mention being terrified and thinking about being forced to off myself. What can be worse than being forced out by your own hand because you can no longer handle the torture and exhaustion, there is nothing more terrifying, I would rather take my chances, walk into a war field and be killed by someone else, anything but having to do it myself.

I’m trapped in hell now, I don’t want to have to die, but I can’t live like this forever. I worked hard for the life that I have, only to have it wiped out by some stupid condition that no one understands. Not in my wildest dreams could I have ever imagined this. All I had to do was not go to the doctor to avoid tinnitus, no drugs, no mri and all okay. Now, it’s funny because the same group of people that caused this snub me and downplay the condition, and disrespect me. I hope there is a special place in hell reserved for all these people.

I’m the same person that could cope at various levels of tinnitus, it’s not like my personality has changed, it was only the tinnitus that changed.

It’s all humiliating, the entire thing, talking about it here, looking lazy and being useless, looking like shit from the suffering, becoming a alcoholic just to try and numb the pain and pass out, offing yourself the most humiliating of all. I was once a proud person, now all I feel is shame.

Sorry that’s a long terribly written emotional post something about the man sitting shaking in his wife’s arms just made me sick, it’s all too familiar.

 

Reading this makes me literally sick to my stomach.

I hope that all the tinnitus apologists and chest pounders on this board do read your post very carefully and then think long and hard, before they try do downplay someone's situation ever again.

The medical establishment already does a good job of that... they don't need any help.