How Can I Avoid Wanting to End My Life If Hearing Renegeration Programs Won't Be Successful?

[punkaddict]

Not really sure what people would say to this, I guess I'm just curious on others views that may comfort me during very dark times.

As many of us have heard, regenerative medicine will potentially be released in the next decade (hopefully). As mine came from acoustic trauma/mechanical trauma, I feel this maybe my best shot for a significant treatment/cure. My problem is the time span between that. Given I have minor noticeable hearing loss and I doubt mine will ever just go on its own, this is likely the only thing keeping me going in the following years, as I have daily suicidal ideation and very low mood. I just feel like after years of CBT, therapies and bimodal stimulation, the chances of habituating or accepting are still rather low; and if I was to wait however long it takes until FX-322, OTO-313 and Decibels drugs and find out either first or second hand they do very little for tinnitus, it would just completely crush me. I don't know how I would stop myself ending it there and then considering a large chunk of my life would have already gone.

There have been jokes about FX-322 not working and suicide rate going up, but I don't really see it as a joke, it's a reality. Any tips or advice on how to not want to end my life at that point? I may be more used to it, but feeling how I feel now 5-10 years from now just seems very very likely.

I'll probably take a break from here soon to try and work towards habituation, but if unsuccessful, I'll still be posting I guess.

I can remain hopeful, still see little reason for it not to work given temporary HL = temporary tinnitus, permanent HL = permanent tinnitus and it's a symptom not a disease.

But I also have to be realistic as I'm no cochlear expert.

 

[Chester]

Your tinnitus is so new. Give it 2 years time, and you will definitely see improvement. By the time you get to that stage, you won't think of ending your life. My tinnitus improved massively after about 23 months, and now, after 30 months, it is almost gone. Mine is not noise induced though. Hang on. You will get there.

 

[Bill Bauer]

I feel this maybe my best shot for a significant treatment/cure.

Your most realistic hope is that your tinnitus fades by itself and that at some point (should you still be able to hear it after it fades) it will become quiet enough for you to be able to habituate to it.

 

[Flamingo1]

Regenerative medecine is already working in other areas of medecine There will never be a dead stop to research. There may be some failures along the way but success is often built on past failures- which can shed more light on a solution

 

[TheDanishGirl]

Your tinnitus is so new. Give it 2 years time, and you will definitely see improvement. By the time you get to that stage, you won't think of ending your life. My tinnitus improved massively after about 23 months, and now, after 30 months, it is almost gone. Mine is not noise induced though. Hang on. You will get there.

Not all tinnitus fades you know. Most do, but not all, so please don't make promises.

 

[BobDigi]

Well after 5 years my tinnitus is louder than it was when it started. And I look after my ears. My advice would be stop clinging on to a hope of something that might be about in 10 years and accept it's probably not going anywhere. And begin the process of habituation today.

They will probably never cure or improve tinnitus at all. Certainly not in our lifetime. So accept your tinnitus and forget a cure for now.

5 years ago I joined this site. People were talking about a cure on the horizon back then. And guess what, 5 years later nobody has benefited from a medical breakthrough. And in 5 years time the situation will be the same. Somebody will join the site, people will say the medical world has a new trial, and the cycle keeps going. I don't mean to be dash your hopes, but you need to accept today's reality, not tomorrows dreams. Otherwise you'll never habituate!

 

[Markku]

Give it 2 years time, and you will definitely see improvement.

Mine started relatively mild in retrospect. It has gotten worse twice over the years, for no apparent reason I can attribute it to. Now the only thing in my daily life that masks it is the shower. It's a literal hell. Combine severe vision issues and other health problems with that, and your life tends to consists of ploughing through one day at a time.

Please don't make promises you can't in good faith deliver on.

 

[linearb]

They will probably never cure or improve tinnitus at all. Certainly not in our lifetime. So accept your tinnitus and forget a cure for now.

Oh? So Susan Shore, Lim and University of Michigan are all faking their data, and the significant improvement I saw in my tinnitus after using the Shore device for two weeks didn't happen?

Fascinating.

 

[Chester]

Not all tinnitus fades you know. Most do, but not all, so please don't make promises.

While I agree with your comment, all I wanted to do is, to give the OP some kind of positive hopes to carry on. That is what he wants at this stage. Doesn't matter what happens in the end, having positive hopes is much much better than living with dark thoughts.

 

[TheDanishGirl]

While I agree with your comment, all I wanted to do is, to give the OP some kind of positive hopes to carry on. That is what he wants at this stage. Doesn't matter what happens in the end, having positive hopes is much much better than living with dark thoughts.

It's vital to have positive hope, but it must be realistic hope imo. I would say that it's highly likely OP will get better... It seems most do, but I would never promise it, but the odds are in his favour.

 

[Manny]

Mine started relatively mild in retrospect. It has gotten worse twice over the years, for no apparent reason I can attribute it to. Now the only thing in my daily life that masks it is the shower. It's a literal hell. Combine severe vision issues and other health problems with that, and your life tends to consists of ploughing through one day at a time.

Please don't make promises you can't in good faith deliver on.

And you still founded and run this board. Wow, that's seriously amazing. Thanks man.
You're not alone. Hugs.

 

[Jack Straw]

Seeing that your tinnitus is new. It will more than likely get better over time. Sure it can get slightly worse over the decades, but it will prob get better than it is right now given some time.

Not sure why you think biomodal stimulation and CBT won't help you. Have you tried either?

 

[punkaddict]

Your most realistic hope is that your tinnitus fades by itself and that at some point (should you still be able to hear it after it fades) it will become quiet enough for you to be able to habituate to it.

I get this may be an easier outcome, but I can't help but see this as a less realistic outcome given the hearing loss. I mean maybe you're right, but I still frequently use headphones (at low volumes), smoke sometimes and eat junk so I could easily be back here with the same or louder volume than what you suggest.
It's just the worst thing that's ever happened to me, the only thing keeping me alive are the fleeting hopes and the thought of my dad hearing I ended my life

 

[linearb]

Take comfort in the fact that suicidal ideation is super super common among new sufferers, and becomes progressively more uncommon the further out you get?

Take comfort in the fact that what you find on line tends to be a mix of worst-case scenarios and incorrect information, and if stuff you're reading online scares you just stop consuming that content?

I just feel like after years of CBT, therapies and bimodal stimulation, the chances of habituating or accepting are still rather low;

You've only had tinnitus since march of this year, right? And bimodal stimulation isn't a thing that exists in the wild yet? So you're speculating that you're going to have years of CBT and bimodal stim, and none of it's going to work?

Why are you putting so much energy into worrying about stuff that will probably never happen, and even if it does it's years in the future? That's textbook anxiety thinking.

 

[GlennS]

Oh? So Susan Shore, Lim and University of Michigan are all faking their data, and the significant improvement I saw in my tinnitus after using the Shore device for two weeks didn't happen?

Fascinating.

Yes. It's interesting how as one reads threads outside of the Lenire thread the rest of this board seems to function as if it doesn't exist. The pessimism is crushing on this board.

 

[punkaddict]

I don't mean to be dash your hopes, but you need to accept today's reality, not tomorrow's dreams.

I appreciate the honesty and realism, I'm not discounting habitation, I'm just at a point where that seems near impossible for me. As a CBT video I saw once mentioned, if the patient was already prone to isolation and low mood (in addition to ASD, anxiety etc.), they are a lot less likely to habituate, no matter the volume. Maybe if I experienced some reduction somehow this wouldn't seem so unachievable, but right now I wake up every morning to my head blaring and a desire to end my life given this is likely forever, caused by a stupid piece of plastic claimed to be 'safe'. I'd rather die if it just continues to make me mentally insane every day

 

[punkaddict]

Not sure why you think biomodal stimulation and CBT won't help you. Have you tried either?

Not yet, suppose I'll try them with enough money and time. I'm just unsure about efficacy, I can see my self trying both and feeling the same, unless I experience reduction which isn't guaranteed. I'm someone who feels very unlucky, so thoughts of nothing working for me cloud my mind

 

[linearb]

I appreciate the honesty and realism, I'm not discounting habitation, I'm just at a point where that seems near impossible for me. As a CBT video I saw once mentioned, if the patient was already prone to isolation and low mood (in addition to ASD, anxiety etc.), they are a lot less likely to habituate, no matter the volume. Maybe if I experienced some reduction somehow this wouldn't seem so unachievable, but right now I wake up every morning to my head blaring and a desire to end my life given this is likely forever, caused by a stupid piece of plastic claimed to be 'safe'. I'd rather die if it just continues to make me mentally insane every day

hey buddy I've had a lifetime of problems going back to childhood ADHD and adolescent severe depression and anxiety; by my early 20s I'd been through a year of severe depersonalization and then developed tinnitus and severe visual snow.

I still have all those problems to varying degrees, but I wake up many mornings and smile. I rely on medication more than I'd like, and I have to put some small chunk of time into brain-management (I get like ~30-120 mins vigorous exercise most days as a result of the lifestyle I have in the woods, then aim to put 10-30 mins into meditation/yoga). For the moment I have accepted these limitations as things which enable a higher quality of life than I'd have otherwise.

I hope you're able to find a way to calm some of your distress soon.

 

[Candy]

@punkaddict please do some CBT ASAP - your thoughts are neither entirely accurate nor helpful. They are keeping you stuck. Time will heal, you're 3 months in. Let's talk in 2 years? Where are you based, in the UK?

 

[BobDigi]

As a CBT video I saw once mentioned, if the patient was already prone to isolation and low mood (in addition to ASD, anxiety etc.), they are a lot less likely to habituate, no matter the volume.

You've done what a lot of people do, go online, and cling on to the worst piece of news or advise they've found. I have OCD and anxiety, and my tinnitus seems louder than the vast majority. Ridiculously loud, high pitch screech and unmaskable. But I'm pretty well habituated. I get my times where it feels so loud it gets me down. But 95% of the time I don't think about it. If you get offline researching, get on with your life and accept your tinnitus is here to stay, you'll eventually habituate and enjoy your life regardless of tinnitus. If you research, cling on to medical breakthroughs that won't happen, feel sorry for yourself and dwell on it you'll be stuck. I don't mean to sound harsh. And I've been where you are so I understand. But the truth is you only have 2 choices.

 

[Bill Bauer]

It's just the worst thing that's ever happened to me

Same here...

 

[linearb]

You've done what a lot of people do, go online, and cling on to the worst piece of news or advise they've found. I have OCD and anxiety, and my tinnitus seems louder than the vast majority. Ridiculously loud, high pitch screech and unmaskable. But I'm pretty well habituated. I get my times where it feels so loud it gets me down. But 95% of the time I don't think about it. If you get offline researching, get on with your life and accept your tinnitus is here to stay, you'll eventually habituate and enjoy your life regardless of tinnitus. If you research, cling on to medical breakthroughs that won't happen, feel sorry for yourself and dwell on it you'll be stuck. I don't mean to sound harsh. And I've been where you are so I understand. But the truth is you only have 2 choices.

I think this is a good way but we need to be careful saying "you WILL habituate", because not everyone does even if they do "everything right", and that's not their fault, it's just that broken bodies and brains aren't all the same and some people have tougher hands to play than others.

That said, yeah, playing the hand you got dealt as best you can is all you can do, in any case.

 

[GregCA]

I'm someone who feels very unlucky, so thoughts of nothing working for me cloud my mind

You seem like the perfect candidate for CBT.

 

[BobDigi]

I think this is a good way but we need to be careful saying "you WILL habituate",

Fair enough. Perhaps I should say, it gives you the best chance of habituation.

 

[ChrisBoyMonkey]

There is research looking specifically into tinnitus, not hearing loss, with the purpose of treating/curing it. Bimodal neuromodulation probably won't be the only option. You may have seen the recent news with the University of Arizona.

 

[Mathieulh]

I think this is a good way but we need to be careful saying "you WILL habituate", because not everyone does even if they do "everything right", and that's not their fault, it's just that broken bodies and brains aren't all the same and some people have tougher hands to play than others.

That said, yeah, playing the hand you got dealt as best you can is all you can do, in any case.

To be fair, statistics show 98% of chronic tinnitus sufferers do habituate, so the odds are in our favour. Of course if you tell yourself that you are part of the 2% that won't, even though you can't predict the future, all it'll do is add to your anxiety and delay the process.

Either way habituation, because of the way our brain chemistry works, takes a very minimum of 6 months and isn't something that can be rushed, it can however be delayed indefinitely by associating T with a threat.

 

[Rb86]

I have faith that you will make improvements. I have felt the way you do, and I probably will again too. But I want you to know I made improvements and that alone has given me hope. Yes sometimes I take 1 step forward and 2 steps back. But it isn't as bad as my first day, which was beyond masking.

Drink a lot of water every day, stay hydrated. Eat healthy but get full, ya know? I don't just mean salads. Eat soup and chicken and rice etc etc. Nourish your body. Ease up on the smoking and quit if you can. Practice releasing tension from your body. Start with your toes and focus intently on them. Release the tension in them. When you've done that work your way up and focus on releasing the tension. Keep going until your body is deeply relaxed.

Sleep is super super important. I started with benedryl, sometimes after 4 hours I took it again. I now take melatonin every night.

During the day it's important to get out of the house and get engaged in a project. Your mind needs to be exercised and challenged.

I want you to focus on doing these things.

Do not focus on some research or magic cures. Trust me, should that ever come to market we will all find out. Until then, dont pay attention to that.

So far, my own best medicine is doing what I said and trying to be patient. Focus on weekly trends, not hourly, not daily.

Slow down and breath.

 

[JohnAdams]

Have hope. I have myself experienced a successful, although not complete, treatment for my hearing issues and there are many cross correlative attributes of my treatment with FX-322, as well as other like OTO-6xx. FX-322 has been shown to improve hearing in animals and humans. This is not the same technology as other tinnitus treatments like Keyzilen (AM-101), that have failed. A big culprit for our issues is hair cell loss and they ARE regenerating hair cells and the end result of hearing restoration has been observed in animals and humans. FACT. For other issues dealing with nerve and synaptic damage, there are neurotrophic drugs like BDNF (OTO-413) that have been shown to also restore hearing function in animals that will begin human trials this year. Also, there is Lenire, which also seems to hold great promise for alleviating tinnitus symptoms for a certain subset of us.

We are entering a new era of medicine and it is starting with the human ear, so there is much to be hopeful for.

The only thing I'm worried about is the business end of the process of getting these drugs out.

 

[GregCA]

To be fair, statistics show 98% of chronic tinnitus sufferers do habituate, so the odds are in our favour.

Citation needed, along with the definition of habituation that leads to that number.

I'm habituated, and it's neither a success story nor a good outcome. The dictionary definition of habituation is "getting used to something", it doesn't mean "it's doesn't affect/bother you anymore".

In my case, it means I'm not surprised by it anymore and it only causes me sporadic anxiety.

 

[Mathieulh]

Citation needed, along with the definition of habituation that leads to that number.

I'm habituated, and it's neither a success story nor a good outcome. The dictionary definition of habituation is "getting used to something", it doesn't mean "it's doesn't affect/bother you anymore".

In my case, it means I'm not surprised by it anymore and it only causes me sporadic anxiety.

To quote Dr. Hubbard:

https://www.tinnitustalk.com/threads/does-everyone-eventually-habituate.10855/#post-134000

"The best data we have indicates that about 98% of people with tinnitus go on to habituate."

He also made a video about this: