I Don't Understand What Kind of Tinnitus Others Are Hearing to Be Able to Cope

[joe e]

Five months of tinnitus and desperate.

I read all these stories of people working and going about their lives like tinnitus is just an annoyance. I just don't get it. I'm barely functional. Masking it is laughable... I can almost "feel" the loud ultra high frequency noises, with different sounds and frequencies in each ear.

I've gone months now totaling around 2 hours sleep per night. Sometimes none.

Doctor just prescribed Seroquel after trying drug sampler platter over time (nortriptyline, mirtazapine, trazodone, xanax, ambien).

It's literally hard to believe that in a few short months someone can go from feeling like the healthiest/luckiest person in the world to contemplating suicide. It hurts to even think and type that word, yet here I am.

I'm really losing hope. I so wish everyone suffering from tinnitus could experience a miracle. Much love...

 

[Vicki14]

It's literally hard to believe that in a few short months someone can go from feeling like the healthiest/luckiest person in the world to contemplating suicide.

It's such a cruel condition Joe and you're definitely not alone in your thoughts. You're still in the early stages of it so fingers crossed things improve for you! x

 

[GoatSheep]

https://www.ncbi.nlm.nih.gov/m/pubmed/22626945/

Perhaps try clonazepam. It's longer acting. I was only able to get 2 hours of sleep on Ambien, trazodone and Ativan. Seroquel knocked me out but gave me a massive spike the 2nd day.

Many people on the board say it quiets their tinnitus. It certainly does mine. I am able to get 6 sometimes even 8 hours of sleep on it.

Of course be advised of the risk of benzos and dependency, withdrawal etc. I'm not advocating for its use persay but you already tried one Benzo and as you say a sampler platter of other meds. I did the same. Most here recommend only using it sparingly when your tinnitus is at its worst.

I hope things get better for you no matter what. I still struggle daily with suicidality and I honestly fear going off the clonazepam because of how loud my tinnitus was before taking it.

 

[Harley]

Five months of tinnitus and desperate.

I read all these stories of people working and going about their lives like tinnitus is just an annoyance. I just don't get it. I'm barely functional. Masking it is laughable... I can almost "feel" the loud ultra high frequency noises, with different sounds and frequencies in each ear.

I've gone months now totaling around 2 hours sleep per night. Sometimes none.

Doctor just prescribed Seroquel after trying drug sampler platter over time (nortriptyline, mirtazapine, trazodone, xanax, ambien).

It's literally hard to believe that in a few short months someone can go from feeling like the healthiest/luckiest person in the world to contemplating suicide. It hurts to even think and type that word, yet here I am.

I'm really losing hope. I so wish everyone suffering from tinnitus could experience a miracle. Much love...

What you are feeling is completelly normal and you are not alone.
Those who are able to function don't have debilitating Tinnitus, because otherwise they would be debilitated as well.

There are some on this board, who will try to tell you that you are weak minded or "pessimistic" (or other bs words that don't even make sense).
Do not listen to them.
They are not the ones getting less than 2 hour sleep per night.
They are just chasing their egos and trying to compare dicks (metaphorically speaking of course).

Many of them actually get worse and then come crying (usually something to the sense, that they had "no idea just how bad Tinnitus can get")

Having said that, there are also lot of nice and caring people here, who won't be trying to put you down and who will listen to you without applying judgement.

Tinnitus is quite possibly one of the most horrid conditions in existence, when on the severe end of the spectrum.

I know this probably won't make you feel any better, but while most people are looking forward to vacations, parties and relax time, I'm looking forward to a dental procedure in couple of months, because I will get to be unconcious for a while, while they are pulling my wisdom teeth.
Yes, being unconcious will be my highlight of this year.

This is our reality now, but there might be hope on the horizon via bimodal stimulation, which is the first actual treatment that directly targets Tinnitus.
So hang in there for a bit longer.

 

[Elliott.S]

Do you know what caused your tinnitus?

 

[Earing]

Ya sorry for you condition. Mine is like a high hiss. I can function as though it is not there. I do have sensitivity to noise though, and my tinnitus is reactive. Hang in there. I know a guy who had it like an ambulance horn in his head. It is way better and he has habituated nicely. He is a musician and still plays bass and guitar live. Then there are the medical advancements coming down the pipe (hopefully). FX-322 is supposed to help us, and will be going into phase 2 testing shortly.

 

[GregCA]

Five months of tinnitus and desperate.

I read all these stories of people working and going about their lives like tinnitus is just an annoyance. I just don't get it. I'm barely functional. Masking it is laughable... I can almost "feel" the loud ultra high frequency noises, with different sounds and frequencies in each ear.

I've gone months now totaling around 2 hours sleep per night. Sometimes none.

Doctor just prescribed Seroquel after trying drug sampler platter over time (nortriptyline, mirtazapine, trazodone, xanax, ambien).

It's literally hard to believe that in a few short months someone can go from feeling like the healthiest/luckiest person in the world to contemplating suicide. It hurts to even think and type that word, yet here I am.

I'm really losing hope. I so wish everyone suffering from tinnitus could experience a miracle. Much love...

You say you don't know what your root cause is. What have you done to diagnose it?

 

[Astro]

Five months of tinnitus and desperate.

I read all these stories of people working and going about their lives like tinnitus is just an annoyance. I just don't get it. I'm barely functional. Masking it is laughable... I can almost "feel" the loud ultra high frequency noises, with different sounds and frequencies in each ear.

I've gone months now totaling around 2 hours sleep per night. Sometimes none.

Doctor just prescribed Seroquel after trying drug sampler platter over time (nortriptyline, mirtazapine, trazodone, xanax, ambien).

It's literally hard to believe that in a few short months someone can go from feeling like the healthiest/luckiest person in the world to contemplating suicide. It hurts to even think and type that word, yet here I am.

I'm really losing hope. I so wish everyone suffering from tinnitus could experience a miracle. Much love...

It took me atleast 2 years to be able to "cope" I was suicidal for the first year and severely depressed the second. I think it was a combination of me being tired of being miserable and my brain getting used to it. But I started making myself busy, unreasonably busy, doing things I love.. and now I'm at the point where I'm just loving my life with my ears screaming at me the entire time. Sometimes its bothersome at night when I need to get right to sleep for a busy day and cant. But other than that I somehow am just okay with never having silence again... I never thought I could live without just being able to be in a dark dead quiet room ever again... but I'm honestly okay with it not. The ear pain and fullness is what bothers me now... the ringing is just there

 

[John Mahan]

It took me atleast 2 years to be able to "cope" I was suicidal for the first year and severely depressed the second. I think it was a combination of me being tired of being miserable and my brain getting used to it. But I started making myself busy, unreasonably busy, doing things I love.. and now I'm at the point where I'm just loving my life with my ears screaming at me the entire time. Sometimes its bothersome at night when I need to get right to sleep for a busy day and cant. But other than that I somehow am just okay with never having silence again... I never thought I could live without just being able to be in a dark dead quiet room ever again... but I'm honestly okay with it not. The ear pain and fullness is what bothers me now... the ringing is just there

And OP, I would say many arrive at Astro's place. Not that we have a lot of choice. Hopefully your mind can too adjust. For me, I even get 'softer days'. That is when I get to get off the fun ride called tinnitus for a short ride. But a bit of sleep...mine changes dramatically with sleep either direction...mostly worsens with sleep...and then off to the races again.

Keep is the most impossible acceptance of all. Acceptance of the noisy neighbor you can't move away from. That takes a lot of time and really surrender. One must give up I believe to accept on some level and then things will get better. Most cries for help...not all...are from the early days as Astro, me and many others went through.

 

[joe e]

Tried Seroquel last night...it caused the loudest spike I have ever experienced.

I feel a little weaker every day.

I pray for us all.

 

[MagicMike]

Tried Seroquel last night...it caused the loudest spike I have ever experienced.

I feel a little weaker every day.

I pray for us all.

Joe... I'm with you, bud. Today is loud as hell for me too. I've been dealing with this for two months - so even though I've had very loud and very quiet days, I'm at the beginning of this journey and have no idea where it will lead. But recently I've been thinking about a few things and thought they might be of interest.

1. There's is now way to objectively measure the loudness of tinnitus. It's not like we can record it, right? In fact, the idea that our tinnitus has any real "volume" at all is probably misguided. I have no idea what makes it seem loud, soft or more/less intense, but there are no actual sound waves, right?

2. The likelihood is that our state of mind at any given moment can impact our perception. If we're anxious, and hypervigilant, we could experience the tinnitus as louder.

3. Similar to the tinnitus itself, there's no way to objectively measure our state of mind at any given moment. In other words, when I'm feeling anxious, it's very hard for me to objectively know how anxious I am and concurrently how that anxiety is impacting my perception of my tinnitus.

At the end of the day, I don't think I'm a very good at objectively measuring how loud my tinnitus is with any real precision.. much less what causes it to vary.

All this leads me to the conclusion that putting lots of energy into tracking and trying to figure out what was making my tinnitus better or worse, likely isn't going to get me anywhere. So I'm just trying to let that go.

When I couldn't sleep for more than an hour a night for a month (and totally losing my shit) I eventually just focused on getting to sleep as opposed to trying to figure out the T and what could potentially make it better or worse. I did the same cocktail round that you did. Klonopin did help for a while... though I was eventually able fall asleep with CBD infused with melatonin. Recently I've been able to get to sleep without any meds, and though I don't sleep as well as I did in the pre T days I am improving. Frankly, I find that my ears can scream regardless of how much sleep I get. So I'm doing my best now to just keep telling myself that I can live with this shitty sound... I don't love it, and I'm still hoping it goes away, but I can live with it and in fact have a great life - no matter how bad it gets. That's what I'm telling myself every day... and I've been doing CBT to reinforce that thinking... which I think is helping too.

Bud, I hope you find some comfort here and elsewhere... mainly within.

 

[JohnAdams]

but there are no actual sound waves, right?

correct, but that doesn't mean that the nerve impulses creating the perceived loudness can't be stronger or weaker in different people.

 

[MagicMike]

correct, but that doesn't mean that the nerve impulses creating the perceived loudness can't be stronger or weaker in different people.

Absolutely. The problem is there's just no way to objectively measure our perception of those neurons firing. And our state of mind (also subjective) can impact that perception. Another way I've been thinking about this is that there are certain subjective variables - like perceived loudness, state of mind, anxiety, etc... and objective variables - like what we eat, medicines and supplements we take, how much we sleep, etc. And we're all constantly trying to figure out how the objective variables and subjective variables interact. But because the subjective variables are subjective, I feel like I'm always chasing a moving target. That's one of the big reasons why I find this fucking condition to be so damn frustrating. Many of us had that experience where we think our T is quieter one day... but it's still there. Then you go down that rabbit hole... how much quieter is it? Is it really quieter? I'm less anxious... is that making it quieter or am I less anxious because it's quieter. Wait, now I'm anxious again. Is it getting louder? It's ultimately kind of a pointless exercise because there's no way to come to a reasoned conclusion. I feel like the people who recover ultimately experience T in a very binary way... either they hear it or they don't, and if they do they either care about it or they don't. I wish there was a way to flip the "I don't care" switch and have immediate relief... but we all know that's not how it works.

 

[JohnAdams]

The problem is there's just no way to objectively measure our perception of those neurons firing

yes that's right. that would be like reading the mind

 

[John Mahan]

Absolutely. The problem is there's just no way to objectively measure our perception of those neurons firing. And our state of mind (also subjective) can impact that perception. Another way I've been thinking about this is that there are certain subjective variables - like perceived loudness, state of mind, anxiety, etc... and objective variables - like what we eat, medicines and supplements we take, how much we sleep, etc. And we're all constantly trying to figure out how the objective variables and subjective variables interact. But because the subjective variables are subjective, I feel like I'm always chasing a moving target. That's one of the big reasons why I find this fucking condition to be so damn frustrating. Many of us had that experience where we think our T is quieter one day... but it's still there. Then you go down that rabbit hole... how much quieter is it? Is it really quieter? I'm less anxious... is that making it quieter or am I less anxious because it's quieter. Wait, now I'm anxious again. Is it getting louder? It's ultimately kind of a pointless exercise because there's no way to come to a reasoned conclusion. I feel like the people who recover ultimately experience T in a very binary way... either they hear it or they don't, and if they do they either care about it or they don't. I wish there was a way to flip the "I don't care" switch and have immediate relief... but we all know that's not how it works.

You just got T. A good summary. My view is subjective T...you believe your perception of T may be variable. I don't believe that being at this longer than you. I used to question that as well. Sometimes the neurons firing giving you T are more worked up. This isn't a perception thing. Its a reality thing you perceive. Yeah, its variable. Mine is quite variable. Neurons excited more for unknown reason. Sleep is my trigger....both higher and lower, mostly I wake up to higher T. My perception of its variation is real. I am not aiding or subtracting by my anxiety level or thinking about it. It is what it is...just like the first time it appeared.

Over time you will learn to accept the highs and lows better. They will still bug you but not as much.

My thoughts.

 

[Harley]

Absolutely. The problem is there's just no way to objectively measure our perception of those neurons firing. And our state of mind (also subjective) can impact that perception. Another way I've been thinking about this is that there are certain subjective variables - like perceived loudness, state of mind, anxiety, etc... and objective variables - like what we eat, medicines and supplements we take, how much we sleep, etc. And we're all constantly trying to figure out how the objective variables and subjective variables interact. But because the subjective variables are subjective, I feel like I'm always chasing a moving target. That's one of the big reasons why I find this fucking condition to be so damn frustrating. Many of us had that experience where we think our T is quieter one day... but it's still there. Then you go down that rabbit hole... how much quieter is it? Is it really quieter? I'm less anxious... is that making it quieter or am I less anxious because it's quieter. Wait, now I'm anxious again. Is it getting louder? It's ultimately kind of a pointless exercise because there's no way to come to a reasoned conclusion. I feel like the people who recover ultimately experience T in a very binary way... either they hear it or they don't, and if they do they either care about it or they don't. I wish there was a way to flip the "I don't care" switch and have immediate relief... but we all know that's not how it works.

I think that when it comes to Tinnitus, perception is reality.
The end result is, that the sufferer feels a volume increase.

I personally feel, that the volume actualy physically increases, but can't discount the possibility that it is being percieved differently.

For example the other day I was awakened (from the little sleep ai already have) by a much louder Tinnitus.
I doubt that my perception would shift and awaken me in such way.

Either way, knowing the exact mechanism is not much of a comfort to someone who is experiencing a spike, as they are hearing louder Tinnitus regardless of the cause.

 

[Ctw]

Do you know what caused your tinnitus?

Where have you been? How are you??

 

[Ctw]

Do you know what caused your tinnitus?

How have you been Elliot? Haven't seen you on here in a while.