Is Tinnitus Really the One Unbeatable Monster Which Is Invulnerable to Every Possible Weapon?

[vermillion]

Hello,

I'm a 32 years old. I had been reading many threads of this forum and found many useful information. My initial intention was to seek advice for my recent tinnitus onset that began 3 months ago.

I don't know exactly how my tinnitus came up. As a man that needs to consider always the worst case scenario, i had been obsessed in searching Tinnitus Talk to track down and get inspired by success stories of people with catastrophic tinnitus that managed to live a normal and happy life, so i could convince myself that this can really happen, in the possibility of things might reach that point for me. This search was pointless. I could find nothing more then horror stories, people in denial, people suicidal, former members that might as well committed suicide, people who insulted and underestimated the pain and suffering of the few folks who tried to follow a positive approach. On top of that Tinnitus Talk made me numb in following possible treatment approaches. For every treatment practice or/and medicine approach etc. there had been always a thread that filled me with doubts, fear and disappointment.

That said, in the beginning, for sensitive people like me this support forum added to me much more pain and distress to the pre-existing anxiety that tinnitus alone still provides. It made me lost my hope and my faith. Two necessary factors to trust as life companions. On top of that it made me depressed, gave me panic attacks with cruel posts and horror videos and made me gradually isolated from my social activities. Not the best strategy, indeed. When i saw the documentary video of Gabi Othius i was overwhelmed and i fainted. Then i read other stories about people that committed suicide. On top of that i realised that few people in this forum/community also stepped to the exit out. I won't judge. I respect those people. I hope they found the peace they 've been seeking desperately. I had been wondering if this is the future for me. It indicates how serious this condition can be. I respect all of us who had the bad luck to contract this ailment. On the contrary it has been quite soothing reading a few positive posts, but I constantly wonder:

Is tinnitus the ONLY one unbeatable monster which is invulnerable to every possible weapon?
Is suicide the only relief for severe tinnitus?

My tinnitus is 24/7. It never stops. It began as one mild tone unilateral. Now it's bilateral with various sounds. Will it ever stabilise? After three months i suppose that it's here to stay. Right now is maskable. I try to find a diagnosis. Went to many ENTs. Had many medical exams. Audiograms, high frequency audiograms, Tympanometry, Otoacoustic Emissions, ABR, MRI, CT, Blood test. Good results.

Now I ended up working with a neurologist. Got a 24-hour encephalography as well. Maybe EBV virus/encephalitis is the culprit. Nothing is for sure. I surpassed the fear that this forum gave me and decide to trust my doctor. He claims that my tinnitus can be gone. However from all the posts here that emphasises the uselessness of doctors, i am almost convinced there is zero chance for that, but i hold a hope. Is that bad? I decided to follow his drug therapy. I was so afraid in the first day. After two days there had been moments my T was a bit improved. Then back again to baseline. Maybe it was a coincidence. The good thing for sure? No horror stories after intravenous drugs. I'll wait patiently to see the progress. Who knows?

Four days now i feel a bit more optimistic. What matters is that i have to find a way not to get worried for what future may bring. It's not easy. I want to feel free again. To truly listen again to my friends stories with no worries of my tinnitus in the background of my mind. I hope i won't have to quite my dance profession due to the music exposure. I also hope i can play the piano again. I quite the piano due to fear of making things worse. This cost me much and amplified my depression. I want to be myself again. To find my smile that made me adorable. I am a vivid, shinny guy with good sense of humor.

Now a few questions for which i would appreciate answers especially from veterans.

1) Idiopathic/progressive tinnitus: Correct me if i am wrong. I observed from people stories that this kind of tinnitus is prone to get worst overtime to the point that gets unmanageable compared to noise-induced which tends to stay stable (or even resolve). Couldn't find a good story for this. Anyone out there who has one?

2) Considering the diversity and the unpredictability of tinnitus, do patients from ototoxicity or idiopathic tinnitus have poorer prognosis compared to the ones from noise exposure? The reason that i am asking is that many acquaintances of mine, and almost all the success stories here fall on the latter category. They claim their tinnitus is stable, barely listen to it or even best... resolved! However mine after 3 months is way different compared to the sound of it's mild onset, to the point that makes me worried about my future. It's not just a minor annoyance.

3) Does multi-tone tinnitus indicates nerve damage in the brain and single tone tinnitus cochlear damage? Is tinnitus that you listen in your head different and/or more debilitating compared to the one that you listen only in your ears? Again about prognosis between those two?

Data here is so scarce that is hard to find. There are so many people asking the same questions and the answers are fragmented throughout the forum . I believe a FAQ has to be established validated by scientific data. The doctor's corner also is poor. What about a possible scientist's corner? TT is a good place to confess and express our suffering with no limits as being altogether in one big party, but sometimes this becomes almost an addiction that amplifies our focus on T. TT has to evolve beyond just a forum. But that is another discussion.

In conclusion. Life with T is not easy. People are different. Every tinnitus case is different. I hope the best to everyone out there who fights with this ailment. With no offence i'll try to limit my visits here. I don't know what the future will bring. Will my tinnitus resolve? Will my T remain stable to the point i can manage to habituate. Will i kill myself? Will i die from cancer, stroke or insomnia? Everything is possible. There is no way to predict the future. The only thing that i know is that i am afraid. But i'll try to cope for today and invite a friend to my place for some company.

Guys, i sincerely wish the best to all of you. You are strong people.
Bye-bye

Ps. I feel for sharing below this success stories blog. It calmed me down reading these stories during a hard night:
http://tinnitussuccess.com/stories/

 

[Paul10]

The success stories you linked were very reassuring. I'm beginning to understand that T is extremely unique, so even most fellow sufferers will not really understand your personal feelings. My T is relatively new, about 4 months; both ears and head, various frequencies. A few days ago, a new low frequency noise joined to add to the high and has brought back the terrible anxiety and the same thoughts you're having. I feel this new noise is the worst. But you know what? As I write this, I realise I thought that about the others when they kicked in. But I'm still here. This new one is bringing a lot of anxiety and sadness; but T will not win this fight. By the grace of God, I'll get through this period. You are correct about forums - but remember, very few people come T forums to say they used to have T but got over it. For 99% of us on here, we're all still in the woods grasping for helps and hope.

 

[JurgenG]

I'll read your post better another day, but wanted to reply on this.
"3) Does multi-tone tinnitus indicates nerve damage in the brain and single tone tinnitus cochlear damage? "
I don't think there is -any- proof of this? I've never heard about it.
What I do wonder, if you have nerve damage, don't you also have cochlear damage?

 

[vermillion]

I'll read your post better another day, but wanted to reply on this.
"3) Does multi-tone tinnitus indicates nerve damage in the brain and single tone tinnitus cochlear damage? "
I don't think there is -any- proof of this? I've never heard about it.
What I do wonder, if you have nerve damage, don't you also have cochlear damage?

I'm trying to figure out all these statements from various posts and the descriptions of various symptoms. Of course i am not a scientist so i just wonder. I'm constantly reading about the below tinnitus offenders: cochlear nerve damage (cilia), auditory nerve degeneration/damage, nerve synapses damage between the cochlea and the auditory cortex etc. I'm super confused Jurgen! Maybe it's pointless to figure out. It's frustrating. Sure thing is that my brain rings, rings, rings... endless party time!

 

[Amber]

I read your questions and they have a common denominator: there are no answers...! At best we have educated guess work but no conclusive answers!

 

[Foncky]

Is suicide the only relief for severe tinnitus?

We are not sure about that. You don't want to experiment too soon.

 

[glynis]

Welcome to Tinnitus @vermillion .
Tinnitus can be mild and go to the extreme and one or more sounds and in one ear or both and the head.

The forum can have helpful posts but also ones from desperate people who its mental torture for or overwhelming unwanted emotions and depression and carnt see a way out !.

I hope everyone can take some positivity and information out of the forum as well as make friends and feel that they can get support.

My tinnitus journey has been ups and downs without mentioning the other Menieres symptoms.
Last year for a few months I hit rock bottom with blasting tinnitus and in my head.
For me Nortryptaline made a massive difference and its finding what helps you too.
I hope everyone can give support and guidance to those struggling to adjust to tinnitus as it is a shock to the newcomers and dealing with how they are feeling
....lots of love glynis

 

[Alue]

Data here is so scarce that is hard to find. There are so many people asking the same questions and the answers are fragmented throughout the forum . I believe a FAQ has to be established validated by scientific data.

There are a number of people here that back up what they say with data or by citing clinical research although you have to be careful looking at how the study was conducted and if it has been peer reviewed. There are probably even more people that make claims that are based on anecdotal evidence.

You say data here is scarce, well that's because there haven't been a lot of good studies done regarding noise exposure and tinnitus or the prognosis of tinnitus with different etiologies. It's difficult to run a controlled study when you are going to permanently damage a portion of your test subjects hearing.

As for your questions.
1. I don't think so. I haven't seen any evidence that idiopathic is worse than noise induced. In fact I sometimes feel the opposite, but that's just my opinion. I will say this, noise induced tinnitus that occurred after years of loud noise exposure is unlikely to go away. Noise induced tinnitus that occurred after a single event is more likely to improve unless it was a particularly severe noise exposure in which case it can result in some pretty nasty chronic tinnitus. I think this is why you see a lot of success stories from people that got mild tinnitus after a single exposure.

2. See above. There was a large poll done on this site, it would be interesting too look at the data and see if there are any trends.

3. I don't think anybody knows. I've picked the brains of three doctors that work in tinnitus research and although there are opinions, there is no definitive answer. I highly doubt one causes silica damage exclusively and the other causes nerve damage exclusively. Cochlear nerve damage/degeneration seems likely in a lot of cases.
Personally, I've experienced tinnitus in my ears and tinnitus in my head, and for me the head tinnitus feels much more intrusive, but one person's experience doesn't mean much.

 

[vermillion]

I read your questions and they have a common denominator: there are no answers...! At best we have educated guess work but no conclusive answers!

Yes @Amber, unfortunately that's correct. No universal, conclusive answers.

All the best.

 

[vermillion]

We are not sure about that. You don't want to experiment too soon.

Hello @Foncky,
I've read your story on your profile page. I consider you as a veteran of the kind. I'll keep your advice with respect.
(By the way i love your avatar.)
Keep it up my friend.
Kind regards.

 

[vermillion]

My tinnitus journey has been ups and downs without mentioning the other Menieres symptoms.
Last year for a few months I hit rock bottom with blasting tinnitus and in my head.
For me Nortryptaline made a massive difference and its finding what helps you too.
I hope everyone can give support and guidance to those struggling to adjust to tinnitus as it is a shock to the newcomers and dealing with how they are feeling
....lots of love glynis

@glynis i admire the way you stay positive, in spite your "hit rock bottom" moments. I have read countless generous responses/advice of yours to desperate members. I'm sending you my best wishes for more calm days of relief. People like you make this place brighter. Accept my gratitude and respect.

All the best to you and your family.

 

[vermillion]

Hello @Alue,
I would like to thank you for your time responding to my questions. I also have read many of your stuff here.

There are probably even more people that make claims that are based on anecdotal evidence.

Countless. I'm more and more convinced that T is like our finger prints. Never the same for anyone.

It's difficult to run a controlled study when you are going to permanently damage a portion of your test subjects hearing.

I am sorry @Alue. Didn't get that one.

1. I don't think so. I haven't seen any evidence that idiopathic is worse than noise induced. In fact I sometimes feel the opposite, but that's just my opinion.

Your opinion makes me hope of that desired morning, waking up in total silence. Wishful thinking?
@Alue What do you think about the reliability of hearing tests?

2. See above. There was a large poll done on this site, it would be interesting too look at the data and see if there are any trends.

Is it possible to send me the link?

I've experienced tinnitus in my ears and tinnitus in my head, and for me the head tinnitus feels much more intrusive

You tell me!

@Alue i sincerely wish all the best for you.
Stay strong.

 

[Sam Bridge]

@vermillion alue meant that its difficult to run tests because you can potentially ruin someone's hearing. Even more so with a person that already has hearing damage.

 

[vermillion]

@vermillion alue meant that its difficult to run tests because you can potentially ruin someone's hearing. Even more so with a person that already has hearing damage.

Thanks @Sam Bridge. It's still vague for me all this hearing tests think. Personally I went under many audiograms. Do you believe that was dangerous?

 

[Sam Bridge]

Thanks @Sam Bridge. It's still vague for me all this hearing tests think. Personally I went under many audiograms. Do you believe that was dangerous?

Na i have had a few of those no problems.

 

[Ed209]

Four days now i feel a bit more optimistic. What matters is that i have to find a way not to get worried for what future may bring. It's not easy. I want to feel free again. To truly listen again to my friends stories with no worries of my tinnitus in the background of my mind. I hope i won't have to quite my dance profession due to the music exposure. I also hope i can play the piano again. I quite the piano due to fear of making things worse. This cost me much and amplified my depression. I want to be myself again. To find my smile that made me adorable. I am a vivid, shinny guy with good sense of humor.

Hi Vermillion, you're in the acute phase of T, so your emotions are understandably all over the place. I see no need to quit piano, or your dance profession. Give yourself some time to rest and mentally recharge. Maybe it's a good time to go on a vacation and take some of that stress off your shoulders. Sometimes I think we can make ourselves worse when we read too much; it's easy to cross that fine line into obsessional thinking.

As far as I know there is no evidence suggesting that idiopathic tinnitus is worse, but there are so many ways that tinnitus can arise. You never know, your T may fade or go completely; it's still early days. In either case, if it doesn't go you will likely adapt and no longer care about it. Just don't prioritise it, and don't quit doing what you love. Instead, purchase some custom molded ear plugs and use them whenever you're in a loud environment.

Tinnitus takes time to overcome. There are no magic pills, and no known effective treatments that work on all types of T. However, once you do learn to truly accept it, you will start to move forward with your life, and tinnitus will slowly become less and less important to you. One day you will realise that it no longer bothers you.

 

[vermillion]

Tinnitus takes time to overcome. There are no magic pills, and no known effective treatments that work on all types of T. However, once you do learn to truly accept it, you will start to move forward with your life, and tinnitus will slowly become less and less important to you.

Thanx @Ed209.
Your positive views throughout the forum and your rational state of mind is really encouraging.

One day you will realise that it no longer bothers you.

Can't wait for that!

Maybe it's a good time to go on a vacation and take some of that stress off your shoulders. Sometimes I think we can make ourselves worse when we read too much; it's easy to cross that fine line into obsessional thinking.

For now a possible vacation is out of the question. I have to make my living. However i'm willing to change my strategy. Stop reading too much about T and focus on my professional errands. Thumbs up for your precious advice.

As far as I know there is no evidence suggesting that idiopathic tinnitus is worse, but there are so many ways that tinnitus can arise. You never know, your T may fade or go completely; it's still early days. In either case, if it doesn't go you will likely adapt and no longer care about it. Just don't prioritise it, and don't quit doing what you love.

My T hadn't improved. The contrary i would say. So i got so discouraged and started to relate to the possible extreme cases. One way or another I must forget those ones, keep calm and take baby steps.

@Ed209 it's been a pleasure.
Thanx for your time.
All the best!

 

[Alue]

Hello @Alue,
I would like to thank you for your time responding to my questions. I also have read many of your stuff here.


Countless. I'm more and more convinced that T is like our finger prints. Never the same for anyone.


I am sorry @Alue. Didn't get that one.


Your opinion makes me hope of that desired morning, waking up in total silence. Wishful thinking?
@Alue What do you think about the reliability of hearing tests?


Is it possible to send me the link?


You tell me!

@Alue i sincerely wish all the best for you.
Stay strong.

There may be many different kinds of T that we have yet to differentiate.

What do you think about the reliability of hearing tests? I think they are rather archaic and inadequate in identifying hearing damage. You can have significant damage and still have a normal audiogram.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2812055/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5325255/
You can lose a lot of 'fidelity' in your hearing and still have a perfect audiogram. Think of it like this: perfect hearing is like having a 4k TV. Loose a little bit and you step down to 1080p HD, but it's still a great picture. Lose some more synaptic connections and you drop down to standard definition. Lose some more and now your at antenna broadcast with poor reception. At which point you are starting to notice a big difference, you are having a harder time hearing conversations in noisy environments etc. Your ears are still transmitting a signal, but there is a lot of noise (static) in the signal now. Your brain doesn't like this and it works in overdrive to try to fill in the gaps, but it does a poor job and you end up with all sorts of artifacts. Why do some people with hearing loss get tinnitus and others don't, nobody knows.

Here is a link to the TT survey results: https://www.tinnitustalk.com/threads/tinnitus-hub-talk-survey-results.14295/
I do not have the raw data.

 

[glynis]

@vermillion,
Thank you for your kind words ....lots of love glynis

 

[Jack Rodgers]

I remember the tinnitus forums in 2000 before the Internet became so awesome and forum software so fantastic. These were crude but filled with pain. I told my story and asked if there was a cure. The answer was NO. I cursed, felt sorry for myself for 15 minutes, then accepted my fate and got on with my life. One thing I learned was to stop trying to gain sympathy for myself. People can't understand. Move on and be the best. When I am working I don't hear my tinnitus and I've learned to not go looking for it.

About 1 year after the event, I began to relax musclewise although I never returned to my former jovial self completely.

After screaming on this forum, perhaps finding a more positive forum or thread will help. You can and will survive and can still enjoy pizza. Tomorrow...pizza. The next day...pizza. What could be better?