Is This Really It? Is There More to Tinnitus Than Just Sitting Around in Pain for Decades to Come?

[Michael Leigh]

Ok, I get what you are saying about headsets. I have not used them much at all, but have on flights with plugs. So hopefully the plugs have helped. But will stop altogether.

Using plugs will not make much difference. Headphones are bad for anyone with noise induced tinnitus. If one chooses to use them they risk their tinnitus becoming worse. I know some people find this hard to believe but the evidence is there, just read some of the many posts in this forum from people that have NIT and regret using headphones. Something has caused your tinnitus to increase, in most situations it is either headphone use or exposure to loud sounds that causes noise induced tinnitus to become worse.

This still confuses me. If you think my increase in tinnitus is from some source of sound, yet I may be over protecting, I can't win.

I am not saying over protecting necessarily causes tinnitus to increase. However, it often makes the auditory system more sensitive to sound.
Try to see a Hearing Therapist or Audiologist that specialises in tinnitus and hyperacusis management and treatment.

Michael

 

[Mark A]

Using plugs will not make much difference. Headphones are bad for anyone with noise induced tinnitus. If one chooses to use them they risk their tinnitus becoming worse. I know some people find this hard to believe but the evidence is there, just read some of the many posts in this forum from people that have NIT and regret using headphones. Something has caused your tinnitus to increase, in most situations it is either headphone use or exposure to loud sounds that causes noise induced tinnitus to become worse.



I am not saying over protecting necessarily causes tinnitus to increase. However, it often makes the auditory system more sensitive to sound.
Try to see a Hearing Therapist or Audiologist that specialises in tinnitus and hyperacusis management and treatment.

Michael

Is there any way to safely watch a movie on a flight when you have tinnitus?

 

[MRItechssuck]

Wear earplugs under the headphones and turn the headphones up so you can hear. I fly every week and never had a problem in 20 years... until the MRI of course.

I don't think headphones cause pressure inside the ear, bud earbuds do. I think people just play stuff too loud... there are constant loud environments and then sudden loud traumas, or a combination.

I've had two main traumas 20 years apart... that's it. I've always used earplugs in movies and such, and my tinnitus fully went away earlier (mild). Now it is severe... you learn this when you have seen both sides.

 

[MRItechssuck]

Earplugs or passive protection help in the lower frequency bands better, where active noise reduction cancels out high frequencies better.

I posted this before, the pioneer for musician in-ear monitors. He talks about sealed ear buds causing deafness because of the sound pressure. The sound pressure causes our muscles to try and make the ear drum stationary to protect us. Then then the musicians can't hear as well,so they turn the volume up louder.

But he might also be trying to sell his new earbuds... lol

Good video... IMO.

 

[PeteJ]

See my video first - and then tell me whether mine is mild or severe?

I have made two conscious decisions regarding my tinnitus.

1. To try every reasonable option that I can find that may facilitate better coping.

2. I am determined to 'live for' my beautiful family and to continue to contribute to family life as best I can while searching for improvement.

On Bruxism.
You will never master relaxation with clenched jaws.
My childhood was a nightmare of isolation due to a mentally ill mother who could not bond with me.
Years later I went for psychotherapy to a brilliant woman who solved my TMJ pain by diagnosing bruxism, and coaching me - as above.
If you can control your jaws (soft mouth - hanging jaw) throughout the day, the practice will continue throughout the night.
Sorry to be so insistent, but always be aware of where your tongue is while mastering this 'trick.'
(See above.)

What video? What are you talking about?

Re: Control your jaw....

I only have one compliment to your reply. My brother has the same suggestion/recommendation.

I don't think it matters. Why? I think my tinnitus is so severe, it 'impacts me' in my sleep. I might keep my jaw relaxed while awake but I am not able to carry on to when I am able to sleep.

 

[FGG]

You think in phase 3 Frequency Therapeutics might blow open the restrictions to entry to tinnitus sufferers if their phase 2 findings reveal significant relief? Pure speculation obviously, but IMO this is beyond the issue of ethics in my opinion, and a matter of morality. Unfortunately ethics and morality often do not play well with each other.

Tinnitus is not currently an exclusion at all. In fact, they are testing tinnitus in the experimental arm of the same current trial. It just can't be cited as your primary reason for wanting to be in the trial.

You just also have to have x number of documented unchanged hearing loss frequencies (apparently can be just at ultra high frequencies based on one user's interview with them if you have enough data points. Ie: if you have certain--unsure what specifically--changes at 10 kHz, 12 kHz and 14k rather than just say 12 kHz). Also has to be completely unchanged over 6 months. They are testing this for NIHL and SSNHL, both of which almost always (always?) have at least some degree of tinnitus associated with them.

My tinnitus, even though bothersome, was not what excluded me (I had plenty of other hearing issues to report to them though). My audiogram was.

 

[mark998]

@Mark A

This is different to a headphone that uses a large diaphragm/speaker that generates and moves air pressure in the ear canal which only has one place to go that is towards the eardrum. White noise generators use the same principle as a hearing aid.

Does it stand to reason that listening to headphones at a very low volume would create a very small amount of air pressure on the eardrum, perhaps at a level that isnt damaging?

 

[MRItechssuck]

Headphones at a low level are fine, IMO there is very little increased "air pressure," it isn't a sealed system.
Ear buds that seal, as in the video, are really bad.

 

[Michael Leigh]

Does it stand to reason that listening to headphones at a very low volume would create a very small amount of air pressure on the eardrum, perhaps at a level that isnt damaging?

I have stated many times in my posts that not everyone with NIT are affected by headphone use. However, many people are. Therefore, it is up to the individual to decide for themselves what they wish to do. I personally think people with noise induce tinnitus should read some of the many posts in this forum from people with NIT that regret using headphones even at low volume because their tinnitus has increased. If such a person with noise induced tinnitus still decides to use headphones, and should their tinnitus increase then they only have themselves to blame because they were warned.

If you want to believe ENT doctors who are physicians and not tinnitus specialists and tell you want to you to hear that, that listening to headphones at low volume causes no harm then go right ahead. I know the majority of them haven't got a clue about tinnitus as they treat underlying medical problems within the auditory system that causes the tinnitus. They treat the Ear, nose and throat, this is their field of expertise not tinnitus.

The choice is yours.
Michael

 

[Michael Leigh]

Is there any way to safely watch a movie on a flight when you have tinnitus?

If the movie has subtitles then I feel this is the safest way of watching it, rather than risk my tinnitus becoming worse. I am an Audiophile and used to listen to music a lot through headphones which eventually gave me tinnitus. This was because I was listening at too high a volume without realizing it. I wish I knew this 23 years ago. I haven't used headphones since and don't miss them because I know the destruction they can do to a person' s life if they have noise induce tinnitus and risk using headphones. Someone contacted me after habituating for 6 years. She was working and enjoying life to the full. Her tinnitus was originally noise induced. She decided to return to using headphones and kept the volume low. Within one week the tinnitus increased and now she cannot work because of the distress that these dangerous devices have caused.

People that have tinnitus that was not noise induced do not understand the dangers I have written about, so be very careful when following their advice. If they tell you using headphones at low volume carries no risk, they do no know and are wrong. There is a risk and it is real.

Michael

 

[Jazzer]

Hopefully by year 2 FX-322 will be out and we can stop wasting our time with secondary contributors to tinnitus and address the real cause—hearing loss.

Just to clarify - Bruxism does not cause Tinnitus - as has been implied here.
But it does cause TMJ pain, which I suffered with for 20 years.
I cured it without recourse to splints.
By adopting an (SM - HJ) posture I was free of it.
I offer it here because it worked for me.

 

[Jazzer]

What video? What are you talking about?

Re: Control your jaw....

I only have one compliment to your reply. My brother has the same suggestion/recommendation.

I don't think it matters. Why? I think my tinnitus is so severe, it 'impacts me' in my sleep. I might keep my jaw relaxed while awake but I am not able to carry on to when I am able to sleep.

"Dave's Tinnitus Story,"
on YouTube.

 

[mrbrightside614]

Tinnitus is not currently an exclusion at all. In fact, they are testing tinnitus in the experimental arm of the same current trial. It just can't be cited as your primary reason for wanting to be in the trial.

You just also have to have x number of documented unchanged hearing loss frequencies (apparently can be just at ultra high frequencies based on one user's interview with them if you have enough data points. Ie: if you have certain--unsure what specifically--changes at 10 kHz, 12 kHz and 14k rather than just say 12 kHz). Also has to be completely unchanged over 6 months. They are testing this for NIHL and SSNHL, both of which almost always (always?) have at least some degree of tinnitus associated with them.

My tinnitus, even though bothersome, was not what excluded me (I had plenty of other hearing issues to report to them though). My audiogram was.

I know it's in their secondary outcome measures. My curiosity is that if it shows great effectiveness in tinnitus as a secondary measure, they'll indicate it as a primary outcome measure in phase 3 and allow tinnitus sufferers whose #1 complaint is tinnitus into the trial. I don't see why Frequency WOULDN'T do that. Opening up the first locally administered stem cell therapy to millions that are suffering would get them paid much more than from the simple hearing loss group, I would imagine.

 

[FGG]

I know it's in their secondary outcome measures. My curiosity is that if it shows great effectiveness in tinnitus as a secondary measure, they'll indicate it as a primary outcome measure in phase 3 and allow tinnitus sufferers whose #1 complaint is tinnitus into the trial. I don't see why Frequency WOULDN'T do that. Opening up the first locally administered stem cell therapy to millions that are suffering would get them paid much more than from the simple hearing loss group, I would imagine.

They won't do that because when they applied for their IND to the FDA it wasn't for tinnitus. They can't change their primary study population mid way. BUT, what they can do, is add tinnitus to their experimental arm (which they have done), and if they show it works for that with experimental arm data, it can be used off label for tinnitus when it passes phase 3 for hearing loss and gets released. This is faster than starting a new trial for tinnitus, which they could do, but I'm sure they know it's unnecessary because people would pay out of pocket for the treatment.

 

[mrbrightside614]

They won't do that because when they applied for their IND to the FDA it wasn't for tinnitus. They can't change their primary study population mid way. BUT, what they can do, is add tinnitus to their experimental arm (which they have done), and if they show it works for that with experimental arm data, it can be used off label for tinnitus when it passes phase 3 for hearing loss and gets released. This is faster than starting a new trial for tinnitus, which they could do, but I'm sure they know it's unnecessary because people would pay out of pocket for the treatment.

Your expertise is appreciated even if it's upsetting lol

 

[FGG]

Your expertise is appreciated even if it's upsetting lol

Get an extended audiogram if you haven't yet (I know you were looking to), you might qualify.

 

[mrbrightside614]

Get an extended audiogram if you haven't yet (I know you were looking to), you might qualify.

You mean for a potential phase 3? I'm going to my ENT in the morning tomorrow and am hoping she will call for one. Is there anything I should mention to ensure her compliance?

 

[brokensoul]

"Dave's Tinnitus Story,"
on YouTube.

Nice video you made. I enjoyed how you talk about it so genuinely. Looks like music really was your great joy in life. I really appreciate that you made the effort to raise awareness about tinnitus. You will live forever on YouTube ;-)

What a pity though to see the comment section derailed by an idiot who thinks tinnitus is a matter of being positive to have it reversed (and goes on to refer to Julian Cowan Hill). People like that just make our struggle even harder.

Severe or intrusive tinnitus doesn't physically kill you, but it kills the person you used to be. It has a massive impact on your life. It's the truth and no psychobabble is going to change anything about that.

 

[FGG]

You mean for a potential phase 3? I'm going to my ENT in the morning tomorrow and am hoping she will call for one. Is there anything I should mention to ensure her compliance?

Just tell her you think you may have hearing loss in the upper frequencies and you want to rule that out as a measure of some of the cochlear damage that you have sustained. There is no reason to refuse you if you are willing to pay out of pocket. You may have to be referred to one that can do it if she can't (not all places calibrate to higher frequencies).

This would at least tell you if Frequency is likely to help you (OHC = audiogram changes) vs the synaptopathy drugs.

 

[Jazzer]

Nice video you made. I enjoyed how you talk about it so genuinely. Looks like music really was your great joy in life. I really appreciate that you made the effort to raise awareness about tinnitus. You will live forever on YouTube ;-)

What a pity though to see the comment section derailed by an idiot who thinks tinnitus is a matter of being positive to have it reversed (and goes on to refer to Julian Cowan Hill). People like that just make our struggle even harder.

Severe or intrusive tinnitus doesn't physically kill you, but it kills the person you used to be. It has a massive impact on your life. It's the truth and no psychobabble is going to change anything about that.

My dear friend - thank you for seeing clearly my intention to tell the truth of this malady.
I looked through the other videos on YouTube, and to be honest, not a single one of them addressed the severity of this 'thing,' and said what I wanted to say.

Most offered a treatment or cure - when us severe sufferers absolutely know there is currently neither.
People like JCH are more than happy to dress up their own brand of psychobabble as the answer, and to charge a lot of money for it.

Tinnitus is such a unique challenge because it strikes us physically, mentally and emotionally.
Coping with it employs all of my courage, determination, and my resources.
Coming to terms with it is really a fight to regain my life.

As the stoics say - we have to accept those things that we cannot change, in order to free us from the bondage of futility and torment.

My best daily practice is to lie in a hot bath, to induce soporific comfort,
to hear it, without listening to it,
to ask my tummy to breath for me,
and to drift off into a meditational doze.
It amounts to developing a calm acceptance.

Very best wishes BS - and thank you once again for kind, understanding words,

Dave xx
Jazzer

 

[Mark A]

"Dave's Tinnitus Story,"
on YouTube.

I just watched the video also. So well done, and shows much of the thoughts and emotions we all feel as severe sufferers. I was gasping as you describe such similar feelings as I have. Some of the YouTube comments though show how purposely ignorant and crass the public can be on this topic. I feel sorry for anyone who seeks support from family and friends who are stubborn and ignorant about tinnitus. There should be public service announcements on tinnitus. Thank you again for your time Dave.

 

[OnceUponaTime]

I would love to hear how your tinnitus is and is there more to this than just sitting around in pain for decades to come? Thank you for all of your time.

Hey @Mark A ,
I've been meaning to reply to this thread but had to think about it for a bit.
Yes, there is more than just sitting around in pain for decades.
I'm not sure if I ever wrote my full story here, but I am sure there's bits and pieces all over TT. At times my postings have been a desperate cry for help and other times, simple comforting words. I've had tinnitus for 8 years, and I can tell you, I am not the same person I was before tinnitus hit me.

There is too much to say about how a life is changed when a person gets tinnitus. We can write a book.
I will start by saying that a positive, optimistic, hopeful personality is a plus.
Once that evil anxiety from hell hits you, your world gets thrown into this whirlwind of fear and desperation you think you can't come out of it. But you can. It's not easy, or there's no fast lane and it is painful, but you can come out.

In the last 8 years, I've seen my 5 yo daughter turn into a beautiful 13 yo teenager full of life and joy. She's an avid reader, and excellent seamstress and crocheter. Her smiles lift my spirits. My 2 yo has turned into a 10 year old little artist who enjoys to paint and loves Bob Ross! (Go figure ) Yes, there is more than sitting around in pain for decades. There's life, and pockets of joy, and peace, and beauty and love and memories... But honestly, it has not been easy. It has been very difficult for me to live with tinnitus but I have learned to do things in different ways, almost like becoming ambidextrous. Tinnitus bothers me everyday, I just live with it one moment at a time.

I now have new hobbies, I've meet new friends, I've learned to slow down and listen to my body. I have found new ways of doing life with tinnitus. No, it was not the life I had in mind, but it is the life I have now and I try my very best to live it gracefully and with my chin up as my girls are watching me. I do not hide the tears from them, they see my struggles and pain but they see me get up everyday and keep pressing forward.

When you feel you can't take it anymore, reach out to someone you know will understand. There are many wonderful, kind people here on TinnitusTalk ready to help you and offer you support when you need it. We cannot take tinnitus away from you but we can help you go through that particular difficult time, when you are struggling the most.

I sometimes do not give a respond on a particular subject here on TT because, for whatever you say, there's always someone who is going to contradict what you say and try to argue with you. I am here just to offer some kind words and support and receive some when I need it. I am not an expert on tinnitus, but I have suffer enough with it to know that we need a cure now.

Yes, there is more than just sitting around in pain for decades. I encourage you to try your very best to calm down and remove anxiety and stress from your life. You have to find what works for you. Balance your life... you have to make a conscious effort to be positive and hopeful. Feed your mind with positive thoughts, reach out and get all the help you need, help others, try different treatments, try new hobbies, watch more comedy, lighten up... cry if you have to, but never give up!


{{{Big hug}}}} to let you know, I understand your struggle.
Once​

 

[ankoump]

Also watched the video Dave, I concur that it is really well done and resonates with my plight. It's awesome that you are doing your part.
All the best.

 

[Mark A]

Hey @Mark A ,
I've been meaning to reply to this thread but had to think about it for a bit.
Yes, there is more than just sitting around in pain for decades.
I'm not sure if I ever wrote my full story here, but I am sure there's bits and pieces all over TT. At times my postings have been a desperate cry for help and other times, simple comforting words. I've had tinnitus for 8 years, and I can tell you, I am not the same person I was before tinnitus hit me.

There is too much to say about how a life is changed when a person gets tinnitus. We can write a book.
I will start by saying that a positive, optimistic, hopeful personality is a plus.
Once that evil anxiety from hell hits you, your world gets thrown into this whirlwind of fear and desperation you think you can't come out of it. But you can. It's not easy, or there's no fast lane and it is painful, but you can come out.

In the last 8 years, I've seen my 5 yo daughter turn into a beautiful 13 yo teenager full of life and joy. She's an avid reader, and excellent seamstress and crocheter. Her smiles lift my spirits. My 2 yo has turned into a 10 year old little artist who enjoys to paint and loves Bob Ross! (Go figure ) Yes, there is more than sitting around in pain for decades. There's life, and pockets of joy, and peace, and beauty and love and memories... But honestly, it has not been easy. It has been very difficult for me to live with tinnitus but I have learned to do things in different ways, almost like becoming ambidextrous. Tinnitus bothers me everyday, I just live with it one moment at a time.

I now have new hobbies, I've meet new friends, I've learned to slow down and listen to my body. I have found new ways of doing life with tinnitus. No, it was not the life I had in mind, but it is the life I have now and I try my very best to live it gracefully and with my chin up as my girls are watching me. I do not hide the tears from them, they see my struggles and pain but they see me get up everyday and keep pressing forward.

When you feel you can't take it anymore, reach out to someone you know will understand. There are many wonderful, kind people here on TinnitusTalk ready to help you and offer you support when you need it. We cannot take tinnitus away from you but we can help you go through that particular difficult time, when you are struggling the most.

I sometimes do not give a respond on a particular subject here on TT because, for whatever you say, there's always someone who is going to contradict what you say and try to argue with you. I am here just to offer some kind words and support and receive some when I need it. I am not an expert on tinnitus, but I have suffer enough with it to know that we need a cure now.

Yes, there is more than just sitting around in pain for decades. I encourage you to try your very best to calm down and remove anxiety and stress from your life. You have to find what works for you. Balance your life... you have to make a conscious effort to be positive and hopeful. Feed your mind with positive thoughts, reach out and get all the help you need, help others, try different treatments, try new hobbies, watch more comedy, lighten up... cry if you have to, but never give up!


{{{Big hug}}}} to let you know, I understand your struggle.
Once​

You can't imagine how timely this is and how much I needed to hear this. Your daughters sound terrific and obviously give you so much joy and it reminds me how much I want to relax a little and appreciate my family again, even if it is in a different way. I want to return to a positive and calm mindset so much, but it is so loud this time around. Your beautiful thoughts really gave me the lift I needed today, don't stop being you. I'd have more to say but I am so exhausted and deprived of sleep. I'm also at work where I need to hide my tears so I don't look weak, you know, back to the fake world! Thank you again for your support.

 

[Ed209]

I have been reading on this forum for many years, and have been commenting a lot lately as my own condition has deteriorated substantially over the past three months. I have been speculating on the cause, but can't pinpoint anything for sure. What really scares me is how loud it has become. I compare it to things in the house like the refrigerator which used to mask it pretty well. Now I have a hard time hearing the refrigerator. I know trying to associate the loudness with a dB value is not easy to do and may not be that meaningful, but the audiologist said it's over 70 dB. When I try it at home, I have to get closer to 85 dB before I drown it out with similar frequency sounds. Maybe very inaccurate, but it scares the hell out of me and makes me think I have the loudest tinnitus around. I would say a 9 of 10. I thought my tinnitus several months ago was very manageable, but not so much today.

From all those, I have read so much from, @JohnAdams, @Bill Bauer, @Michael Leigh, @Jazzer, @Ed209, @fishbone, @OnceUponaTime, or anyone who wants to chime in, I would love to hear how your tinnitus is and is there more to this than just sitting around in pain for decades to come? Thank you for all of your time.

Hi Mark, as you already alluded to, tinnitus cannot be accurately measured by using external sounds and the A-weighted decibel scale. There are many reasons as to why, such as your audio equipment's ability to accurately replicate a given frequency, matching the pitch of a frequency to your tinnitus, and how we interpret various frequencies differently from a psychoacoustic point-of-view. That is just the tip of the iceberg. As a comparison, I just opened up Whist and set it to 90 dB and did a frequency sweep (through iPhone XR speakers), and nothing that came out of the app masked my tinnitus, but I'm aware that that has no real meaning. That does not mean my tinnitus is louder than yours. In fact, for all I know, yours could be a lot louder than mine. We have no way of accurately and objectively comparing tinnitus with each other. If science could find a way of doing this, however, it would help significantly, as drug and medical device trial results could be measured objectively rather than subjectively.

When I had what I considered mild tinnitus I could still hear it over the TV, but I didn't think about it at all. That is why I stupidly went to gigs and clubs for years afterwards with no hearing protection at all.

Your tinnitus could be perceived as louder for many reasons, and I think stress in your case could be a good candidate considering what you've been through. Nobody can say for sure, though, as there are various other plausible explanations.

I echo what Once said above. You have to find a way of pressing forward, and in time, you'll find your feet again. Try not to let tinnitus dominate your thoughts and the only way to really do this is to keep busy and to occupy your mind with deeply meaningful tasks.

Stay strong and don't ever be scared or embarrassed to ask for support if it all becomes too much for you.

 

[Ed209]

Hey @Mark A ,
I've been meaning to reply to this thread but had to think about it for a bit.
Yes, there is more than just sitting around in pain for decades.
I'm not sure if I ever wrote my full story here, but I am sure there's bits and pieces all over TT. At times my postings have been a desperate cry for help and other times, simple comforting words. I've had tinnitus for 8 years, and I can tell you, I am not the same person I was before tinnitus hit me.

There is too much to say about how a life is changed when a person gets tinnitus. We can write a book.
I will start by saying that a positive, optimistic, hopeful personality is a plus.
Once that evil anxiety from hell hits you, your world gets thrown into this whirlwind of fear and desperation you think you can't come out of it. But you can. It's not easy, or there's no fast lane and it is painful, but you can come out.

In the last 8 years, I've seen my 5 yo daughter turn into a beautiful 13 yo teenager full of life and joy. She's an avid reader, and excellent seamstress and crocheter. Her smiles lift my spirits. My 2 yo has turned into a 10 year old little artist who enjoys to paint and loves Bob Ross! (Go figure ) Yes, there is more than sitting around in pain for decades. There's life, and pockets of joy, and peace, and beauty and love and memories... But honestly, it has not been easy. It has been very difficult for me to live with tinnitus but I have learned to do things in different ways, almost like becoming ambidextrous. Tinnitus bothers me everyday, I just live with it one moment at a time.

I now have new hobbies, I've meet new friends, I've learned to slow down and listen to my body. I have found new ways of doing life with tinnitus. No, it was not the life I had in mind, but it is the life I have now and I try my very best to live it gracefully and with my chin up as my girls are watching me. I do not hide the tears from them, they see my struggles and pain but they see me get up everyday and keep pressing forward.

When you feel you can't take it anymore, reach out to someone you know will understand. There are many wonderful, kind people here on TinnitusTalk ready to help you and offer you support when you need it. We cannot take tinnitus away from you but we can help you go through that particular difficult time, when you are struggling the most.

I sometimes do not give a respond on a particular subject here on TT because, for whatever you say, there's always someone who is going to contradict what you say and try to argue with you. I am here just to offer some kind words and support and receive some when I need it. I am not an expert on tinnitus, but I have suffer enough with it to know that we need a cure now.

Yes, there is more than just sitting around in pain for decades. I encourage you to try your very best to calm down and remove anxiety and stress from your life. You have to find what works for you. Balance your life... you have to make a conscious effort to be positive and hopeful. Feed your mind with positive thoughts, reach out and get all the help you need, help others, try different treatments, try new hobbies, watch more comedy, lighten up... cry if you have to, but never give up!


{{{Big hug}}}} to let you know, I understand your struggle.
Once​

Amazing post, Once. You're such a wonderful person.

 

[OnceUponaTime]

Amazing post, Once. You're such a wonderful person

Awwww, thank you, Ed. So are you.
Just don't tell Mark about the whip ok???... hahaha
You'll scare him like you scared @Jcb . BTW, I haven't seen him here lately. Hmmm

 

[fishbone]

Hey @Mark A ,
I've been meaning to reply to this thread but had to think about it for a bit.
Yes, there is more than just sitting around in pain for decades.
I'm not sure if I ever wrote my full story here, but I am sure there's bits and pieces all over TT. At times my postings have been a desperate cry for help and other times, simple comforting words. I've had tinnitus for 8 years, and I can tell you, I am not the same person I was before tinnitus hit me.

There is too much to say about how a life is changed when a person gets tinnitus. We can write a book.
I will start by saying that a positive, optimistic, hopeful personality is a plus.
Once that evil anxiety from hell hits you, your world gets thrown into this whirlwind of fear and desperation you think you can't come out of it. But you can. It's not easy, or there's no fast lane and it is painful, but you can come out.

In the last 8 years, I've seen my 5 yo daughter turn into a beautiful 13 yo teenager full of life and joy. She's an avid reader, and excellent seamstress and crocheter. Her smiles lift my spirits. My 2 yo has turned into a 10 year old little artist who enjoys to paint and loves Bob Ross! (Go figure ) Yes, there is more than sitting around in pain for decades. There's life, and pockets of joy, and peace, and beauty and love and memories... But honestly, it has not been easy. It has been very difficult for me to live with tinnitus but I have learned to do things in different ways, almost like becoming ambidextrous. Tinnitus bothers me everyday, I just live with it one moment at a time.

I now have new hobbies, I've meet new friends, I've learned to slow down and listen to my body. I have found new ways of doing life with tinnitus. No, it was not the life I had in mind, but it is the life I have now and I try my very best to live it gracefully and with my chin up as my girls are watching me. I do not hide the tears from them, they see my struggles and pain but they see me get up everyday and keep pressing forward.

When you feel you can't take it anymore, reach out to someone you know will understand. There are many wonderful, kind people here on TinnitusTalk ready to help you and offer you support when you need it. We cannot take tinnitus away from you but we can help you go through that particular difficult time, when you are struggling the most.

I sometimes do not give a respond on a particular subject here on TT because, for whatever you say, there's always someone who is going to contradict what you say and try to argue with you. I am here just to offer some kind words and support and receive some when I need it. I am not an expert on tinnitus, but I have suffer enough with it to know that we need a cure now.

Yes, there is more than just sitting around in pain for decades. I encourage you to try your very best to calm down and remove anxiety and stress from your life. You have to find what works for you. Balance your life... you have to make a conscious effort to be positive and hopeful. Feed your mind with positive thoughts, reach out and get all the help you need, help others, try different treatments, try new hobbies, watch more comedy, lighten up... cry if you have to, but never give up!


{{{Big hug}}}} to let you know, I understand your struggle.
Once​

Your post puts a huge smile on my face. Even I at times, need to be lifted mood wise and your post did it for me, Ty.

 

[OnceUponaTime]

Your post puts a huge smile on my face. Even I at times, need to be lifted mood wise and your post did it for me, Ty.

Aww @fishbone, If I could tell you how many times your posts have done that for me, I would, but I lost count.
Makes me happy to know I put a smile on your face today.
Keep in touch.

 

[Mark A]

Hi Mark, as you already alluded to, tinnitus cannot be accurately measured by using external sounds and the A-weighted decibel scale. There are many reasons as to why, such as your audio equipment's ability to accurately replicate a given frequency, matching the pitch of a frequency to your tinnitus, and how we interpret various frequencies differently from a psychoacoustic point-of-view. That is just the tip of the iceberg. As a comparison, I just opened up Whist and set it to 90 dB and did a frequency sweep (through iPhone XR speakers), and nothing that came out of the app masked my tinnitus, but I'm aware that that has no real meaning. That does not mean my tinnitus is louder than yours. In fact, for all I know, yours could be a lot louder than mine. We have no way of accurately and objectively comparing tinnitus with each other. If science could find a way of doing this, however, it would help significantly, as drug and medical device trial results could be measured objectively rather than subjectively.

When I had what I considered mild tinnitus I could still hear it over the TV, but I didn't think about it at all. That is why I stupidly went to gigs and clubs for years afterwards with no hearing protection at all.

Your tinnitus could be perceived as louder for many reasons, and I think stress in your case could be a good candidate considering what you've been through. Nobody can say for sure, though, as there are various other plausible explanations.

I echo what Once said above. You have to find a way of pressing forward, and in time, you'll find your feet again. Try not to let tinnitus dominate your thoughts and the only way to really do this is to keep busy and to occupy your mind with deeply meaningful tasks.

Stay strong and don't ever be scared or embarrassed to ask for support if it all becomes too much for you.

Ed209, a big thank you! I have met some truly amazing people here and really appreciate the sincere and selfless support you and others have given. I have definitely struggled, and it doesn't help how the mind can play some really sinister games on us, and it has to me lately. But reminding me of reality and what matters and letting go of what doesn't helps me claw back to living life again. With the support from here and family, I am more encouraged than ever to getting there. Thank you.