Two Year Anniversary

[Lane]

There's not a health problem on earth that can destroy the entire spectrum of your life so comprehensively as severe tinnitus.

It sounds like you're probably unaware of the severity of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). Here's a LINK to the Introduction Section of a website focused to it. If anybody reads even a few of those introductions, it will likely be quite an eye opener. Pasted below is the first paragraph in the very latest introduction. It's quite typical of the members on that forum.

BTW, people with CFS tend to be particularly vulnerable to developing tinnitus. Whereas tinnitus involves some kind of faulty interplay between the brain and the auditory system, ME/CFS is--generally speaking--some kind of faulty interplay between the brain and the immune system, the brain and the endocrine system, and the brain and the neurological system.

In short, a multi-system breakdown, preventing people from doing much in their daily lives. Exercising is not possible for most people, as it causes all symptoms to dramatically worsen. Getting out of bed is often off limits for days, weeks, months, or even years at a time. They often live in severe pain, and are usually unable to think or sleep in a way that would be--even remotely--considered normal.

Here's a LINK to a thread on this forum started by someone with ME/CFS.

Hello everybody. I have recently started suffering all the symptoms of CFS, mainly: Fatigue, PEM, body aches, headaches, exaustion. I've lost the ability to leave the house for long. I've been greately affected Cognitively as well. I just have no energy for anything anymore, pretty much lost my life to this.

 

[GregCA]

I tried sleeping well ... but same (long term) pattern...

Tried taking B12 ... same ...

Acupuncture ... same ...

Changing salt content ... same ....

Various sound treatments ... same ...

Drinking self squeezed fresh juice ... same ...

Melatonin ... same ...

etc., etc.

All above tried over weeks if not months....

Allen

I don't mean to sound daft, but the process you describe above is "throw to the wall and see what sticks". I was talking about a more scientific approach to a diagnosis, for example, exploring things like blood work, imaging (CT, MRI), etc... Here is a flowchart you can follow (with your doctors): https://www.tinnitusresearch.net/index.php/for-clinicians/diagnostic-flowchart

For example, you don't say if you've had a hearing test and what it showed. In many instances, T is caused by hearing loss, and knowing that sometimes opens the door to solutions. You could be in the lucky set that does have solutions.

 

[fishbone]

So this is my two year anniversary (I take 6/18/2016 as the day my tinnitus started, give a day or two since it kind of sneaked up on me, low a first, and then louder and louder until I couldn't deny that something was wrong). It's been the hardest two years of my life.

I debated what I should write. On the one hand, I could write a "Yippee I am in a happy place now" post and it wouldn't be completely inaccurate. In many ways, I have adjusted to the high 12-13khz eeee, sometimes glassy, sound in the head. I don't get angry any more. I don't even hate it. I have come to accept it. Many times, I have even caught myself feeling "happy" playing with my children or playing on the piano despite a roaring noise in my head.

But on the other hand, I am not happy. T is all pervasive. Every day I hear the sound, I ask myself, how did I get here? I always protected my ears ... didn't have trauma... am only in my 40's... You know, I used to treasure silence. I looked up the quietest places on earth and planned to visit each of those places.

If this shit can happen to me, anything can - including things much much worse (e.g. life-ending things...). That realization is both terrifying as well as liberating...

After two years, this is my standard pattern. 50-60% bad, 20-30% mediocre, 5-10% good (4-5 bad days, 2 ok days, once in a while 1-2 good days). In the bad times, my head aches; the sound is all pervasive (nothing masks it). In the mediocre times, the sound is all pervasive, but the ache is not there. In the "good" times - I sometimes don't hear it when outside. And even when I hear it going to sleep, those low levels wouldn't bother me.

I feel like living in hell, but I am ok. I accept my T as a amputee might accept a missing limp. I will live despite my condition.

For the newbies, this post might sound bad, but please don't freak out. Life is about change and adapting to change. It is the case even if you don't T ... even if you are cured of T.

Until one day, science and technology progresses such that we all become immortal and healthy (bacteria is immortal for example), the human condition has to be defined by the will to survive ... the strength to live another day ... despite challenges.

And so many things are in our head, too. Take for example, my love for "silence." I used to love silence because that was when I felt most calm, and I treasured calm immensely. After T, for the longest time, I found no calm. It was terrible. But more recently, I have found calmness despite T (one time playing piano, another time running in the park with my 5 and 7 year old boys, for example). So while I may have lost "silence" forever, I know I don't necessarily have to lose the "essence" of "silence" forever.

I want to wish everyone strong mental fortitude ... and luck. Getting mad at T will just let T rob that many good seconds of your life from you. Don't let it. Find the will to live ... and live well...

Try, we deserve it.

You have done well. You may not realize it, but you are way stronger, than you were two years ago. All of us dream of a cure, but we do need to live our lives as well. Just keep up the positive mentality and do your best to keep moving forward.

 

[Allen Y.]

I don't mean to sound daft, but the process you describe above is "throw to the wall and see what sticks". I was talking about a more scientific approach to a diagnosis, for example, exploring things like blood work, imaging (CT, MRI), etc... Here is a flowchart you can follow (with your doctors): https://www.tinnitusresearch.net/index.php/for-clinicians/diagnostic-flowchart

For example, you don't say if you've had a hearing test and what it showed. In many instances, T is caused by hearing loss, and knowing that sometimes opens the door to solutions. You could be in the lucky set that does have solutions.

Oh...

I have seen 3 ENTS ... 2 GPs... 4 alternative medicine doctors ... 3 audiologists.

I have not done an MRI (all mainstream doctors said my symbols don't justify it) ... but have done blood tests ... but nothing there showed anything to the doctors...

I have followed the flowchart. I get to the sensory neural -> chronic hearing loss (high frequency, above 9k hz) path ... but no causal treatment identified.

Allen

 

[Allen Y.]

You have done well. You may not realize it, but you are way stronger, than you were two years ago. All of us dream of a cure, but we do need to live our lives as well. Just keep up the positive mentality and do your best to keep moving forward.

For the first year, I was yearning for a complete cure. Every time my T diminished, I thought I was on my way ... only to get knocked down to ground zero a few days (or hours) later.

Now I still hope ... and yearn ... but I don't get "knocked down" any more when the spike hits...

 

[GregCA]

I have seen 5 ENTS ... 3 GPs... 4 alternative medicine doctors ... 2 audiologists.

I have done an MRI ... and blood tests ... but nothing showed anything to the doctors...

I have followed the flowchart. I get to the sensory neural -> chronic hearing loss (high frequency, above 9k hz) path ... but no causal treatment identified.

OK, so HF hearing loss seems to be the culprit then.
Have you tried hearing aids that support high frequency amplification?

 

[Allen Y.]

OK, so HF hearing loss seems to be the culprit then.
Have you tried hearing aids that support high frequency amplification?

I did ask my audiologists - but since my speech tests returned 100% - they say hearing aids aren't recommended.

My understanding is that no hearing aid aims to improve things above 8khz (my loss is above that), at 7-8 khz, I have 5-15, maybe 20 db loss, but they say that's "mild."

My loss is really above 9kz ...

 

[GregCA]

I did ask my audiologists - but since my speech tests returned 100% - they say hearing aids aren't recommended.

My understanding is that no hearing aid aims to improve things above 8khz (my loss is above that), at 7-8 khz, I have 5-15, maybe 20 db loss, but they say that's "mild."

My loss is really above 9kz ...

Some hearing aids do go above 8-9 kHz. See https://www.hearingtracker.com/hearing-aids/signia-pure-primax-7px

It may or may not help you, but since you are eligible for a free trial by law, I'm not sure why you wouldn't want to give it a try. Hearing aids don't just help people who don't score 100% at the speech test. I score 100% but I can tell the difference when I wear my hearing aid.

There is no downside to trying, I think.

 

[BLane]

Happy 2nd Anniversary Allen Y. This July will be my 2nd Annv. as well. My experience has been very similar to yours, except that mine came on suddenly, in full force. I've read that in the 3rd year it gets easier to deal with.

 

[BobK544]

Allen Y said: Every time my T diminished, I thought I was on my way ... only to get knocked down to ground zero a few days (or hours) later.

Allen i think you captured the essence of living with T.

 

[Allen Y.]

Some hearing aids do go above 8-9 kHz. See https://www.hearingtracker.com/hearing-aids/signia-pure-primax-7px

...

There is no downside to trying, I think.

I don't like hearing aids. They amp up sound ... so we hear better. But I hear well enough.

By amping up sound, you expose your hair cells to that much more sound, which reduces their lifespan. And then when they go, then what, turn up more?

It's not sustainable.

I am 47. Audiologists told me it doesn't make sense for me to use hearing aids. Usually people have to strain to hear ... and then that straining process causes in some people T. But hearing aids per se does not cure T in general is the opinion I got from all three audiologists...

 

[PortalNaut]

It sounds like you're probably unaware of the severity of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). Here's a LINK to the Introduction Section of a website focused to it. If anybody reads even a few of those introductions, it will likely be quite an eye opener. Pasted below is the first paragraph in the very latest introduction. It's quite typical of the members on that forum.

​

So sorry Lane, but if you could review and post the link to that intro please. It doesn't work for me. Thanks!

 

[AmericanJosh]

To say 'if you didn't get T some other health condition would have come along anyway' is ridiculous. Look at the OP. 60% of his days are basically miserable. He now enjoys around 5% of the happiness he used to have. This is utterly devastating for a man in his prime trying to support a family and give his kids a happy upbringing. How can you offer love and joy when you're living under these awful prisoner of war style conditions.

However you dress this up. There are very very few health conditions that can have this devastating permanent effect on your happiness and well being without any chance or hope of relief.

This is why people with tinnitus kill themselves day in day out while the rest live on the edge of a cliff that might collapse anyway.

As the OP's statistics suggest, it's not a life.

I have never read a news article of someone killing themselves because of T alone, much less a rash of such articles.

Here are some health conditions that can mess up your life as much and certainly more than T.

Lupus
Chronos disease
Small fiber neuropathy
General neuropathy
Most spinal and neck injuries and disorders
TBI
Severe epilepsy
Stroke
MS
Parkinsons
Louis gehrigs disease
Loss of a limb
And the list goes on and on

I have T. It's about a 7. But life must go on. I wish I didn't have it and it is tough at times, but if I don't live my T then I can go on with life.

 

[Wolfears]

I have never read a news article of someone killing themselves because of T alone, much less a rash of such articles.

Here are some health conditions that can mess up your life as much and certainly more than T.

Lupus
Chronos disease
Small fiber neuropathy
General neuropathy
Most spinal and neck injuries and disorders
TBI
Severe epilepsy
Stroke
MS
Parkinsons
Louis gehrigs disease
Loss of a limb
And the list goes on and on

I have T. It's about a 7. But life must go on. I wish I didn't have it and it is tough at times, but if I don't live my T then I can go on with life.

I can't believe you just wrote this.
There are many suicides because of Tinnitus alone...I don't feel like digging up news articles right now, but there are plenty that can be googled if you look.
Just off the top of my head, I remember reading the news article about the boat skipper, who jumped to his death after he was told that there is no cure for Tinnitus, or the firefighter who killed himself because his Tinnitus sounded like country music.
And no they had no previous history of mental illness...just bad Tinnitus.

Of course there are always doubters, who will try to blame some mental condition, but I'm not quite sure why it is so hard to accept the fact that people kill themselves over Tinnitus alone.
I'm not sure if you are trying to provoke an argument of sorts, but severe Tinnitus is certainly on that list...unless a lifetime of 24/7 brutal torture by sound isn't quite enough for you, I'm not sure what the hell are you exactly trying to accomplish here bud.

 

[AmericanJosh]

I can't believe you just wrote this.
There are many suicides because of Tinnitus alone...I don't feel like digging up news articles right now, but there are plenty that can be googled if you look.
Just off the top of my head, I remember reading the news article about the boat skipper, who jumped to his death after he was told that there is no cure for Tinnitus, or the firefighter who killed himself because his Tinnitus sounded like country music.
And no they had no previous history of mental illness...just bad Tinnitus.

Of course there are always doubters, who will try to blame some mental condition, but I'm not quite sure why it is so hard to accept the fact that people kill themselves over Tinnitus alone.
I'm not sure if you are trying to provoke an argument of sorts, but severe Tinnitus is certainly on that list...unless a lifetime of 24/7 brutal torture by sound isn't quite enough for you, I'm not sure what the hell are you exactly trying to accomplish here bud.

I don't doubt people have killed themselves due to tinnitus, but I know for a fact, as a researcher and avid news junkie, that there are not thousands, much less hundreds, of suicides due to tinnitus. 50 million people have tinnitus - one would certainly expect a news article a day due to suicide over tinnitus. Just because a few people have done it, or someone knows someone who did it, doesn't mean its an epidemic or even common.

Here are the most common causes of suicide in the US - no mention of tinnitus. Like I said, from my training and experience in social work, I firmly believe that many suicides are driven by anxiety and depression with other issues (like tinnitus, pain, etc) being too much to bear in all.

• Depression. It is one of the leading causes of suicides around the world. ...
• Hopelessness. ...
• Fear. ...
• Perfectionism. ...
• Regrets. ...
• Traumatic experience. ...
• Mental illness. ...
• Stress.

 

[Wolfears]

I don't doubt people have killed themselves due to tinnitus, but I know for a fact, as a researcher and avid news junkie, that there are not thousands, much less hundreds, of suicides due to tinnitus. 50 million people have tinnitus - one would certainly expect a news article a day due to suicide over tinnitus. Just because a few people have done it, or someone knows someone who did it, doesn't mean its an epidemic or even common.

Here are the most common causes of suicide in the US - no mention of tinnitus. Like I said, from my training and experience in social work, I firmly believe that many suicides are driven by anxiety and depression with other issues (like tinnitus, pain, etc) being too much to bear in all.

• Depression. It is one of the leading causes of suicides around the world. ...
• Hopelessness. ...
• Fear. ...
• Perfectionism. ...
• Regrets. ...
• Traumatic experience. ...
• Mental illness. ...
• Stress.

Yes but remember out of those 50 million of people who have tinnitus only about 5% have the debilitating kind...if you spread that across the whole US, it's no longer that big of a number.
Also remember that the top 3 conditions (and the last one) you just mentioned are all present with those that have the debilitating tinnitus...either as a direct result of tinnitus, or are further amplified by it because I'm very sure, that if they didn't have them before tinnitus, they will definitely have them after tinnitus sets in.

Lastly, there are medications out there to reduce pain, stress or depression but not a single one to reduce the volume...with tinnitus it's all about the volume and intrusiveness.
Medically speaking, a tinnitus sufferer has nowhere to turn to reduce those...that is a big one, because when you realize that nobody can help you, lot of people tend to freak out and take drastic mesaures.

 

[AmericanJosh]

Yes but remember out of those 50 million of people who have tinnitus only about 5% have the debilitating kind...if you spread that across the whole US, it's no longer that big of a number.
Also remember that the top 3 conditions (and the last one) you just mentioned are all present with those that have the debilitating tinnitus...either as a direct result of tinnitus, or are further amplified by it because I'm very sure, that if they didn't have them before tinnitus, they will definitely have them after tinnitus sets in.

Lastly, there are medications out there to reduce pain, stress or depression but not a single one to reduce the volume...with tinnitus it's all about the volume and intrusiveness.
Medically speaking, a tinnitus sufferer has nowhere to turn to reduce those...that is a big one, because when you realize that nobody can help you, lot of people tend to freak out and take drastic mesaures.

I agree that this all sucks. When I injured my back, I was shocked to find out how little medicine can really do for me. We can't even cure baldness yet, much less so many other health issues.

I haven't seen any research that tinnitus causes any other health issue. In fact t is not an illness or disease. It's a symptom of other issues like minerals, acoustic injury, ear infection, head injury, etc.