Suicidal

[dan]

@PeteJ, maybe you could try LumoMed laser treatment in Florida? It helped someone on this forum. Kind of expensive though. I'm thinking of that or their home laser - Luci basic.

Try Lenire, much better odds.

 

[just1morething]

Try Lenire, much better odds.

Lenire isn't available in many parts of the world. I'm not sure the general consensus of it working that well either.

 

[dan]

Lenire isn't available in many parts of the world. I'm not sure the general consensus of it working that well either.

Lasers don't work. 1000%.

 

[just1morething]

Lasers don't work. 1000%.

@scotty03874 seemed to have good results with LumoMed. Not with audiogram improvement, but with his tinnitus.

 

[ajc]

@scotty03874 seemed to have good results.

Never ever never ever consider one anecdote evidence enough. It's a waste of money to try LLLT.

PLACEBO

 

[just1morething]

Never ever never ever consider one anecdote evidence enough. It's a waste of money to try LLLT.

PLACEBO

Right, we need more anecdotal feedback, good or bad. They sent me a list of testimonials and I asked to talk to some of those people. It's about the same with Dr. Shim.

I realize there are many people trying to take advantage of our affliction to fatten their wallet.

 

[PeteJ]

Yes.

It is horrible indeed. Nobody has figured out the "why" yet, because both you and I with the same symptoms could have a very different kind of lesion. In my case, the hypothesis is that otosclerosis has damaged hair cells in my cochlea, not due to an acoustic trauma, but due to toxicity of enzymes instead (a bit like ototoxicity of meds, perhaps).

In your case (acoustic trauma), it could be hair cells dead by power shock wave, or synaptopathy, or both... or something else!

But the net result is that we both end up with this screechy loud noise 24x7. Maybe both of our root causes ended up in the same maladaptive plasticity process in the DCN.

That means we are fucked then?

It's just so shocking and horrible that I felt normal in January and then after the trauma, the acoustic trauma makes so I am like this now.

My left ear pain too. My left ear is warm and I even think that the temperature increases if that is possible. There is pain in the cheek and jaw too but maybe not as bad as others here. The pain is mostly in the ear but when it's really bad, it is the muscles there too. I don't know what else to say except this is torture.

 

[PeteJ]

@PeteJ, maybe you could try LumoMed laser treatment in Florida? It helped someone on this forum. Kind of expensive though. I'm thinking of that or their home laser - Luci basic.

For what? What is that?.

I also find it difficult to just go to a grocery store or local doctor appointment.

 

[GregCA]

That means we are fucked then?

For the moment, I'm afraid yes. There are 2 things I look forward to:

1. symptom reducing bi-modal stimulation: this isn't going to cure us (and won't give me back any hearing), but it seems promising at reducing the noise
2. hearing regeneration tech: I am pretty optimistic about restoration of hearing leading to improvements in T, but that's quite a few years away

My left ear pain too. My left ear is warm and I even think that the temperature increases if that is possible. There is pain in the cheek and jaw too but maybe not as bad as others here. The pain is mostly in the ear but when it's really bad, it is the muscles there too. I don't know what else to say except this is torture.

I understand. My ear canal is very sensitive too, and that's too bad because I have a hearing aid that, every once in a while, rubs against it (it's a BTE kind), so I get those "stab me in the ear" moments randomly too. That's on top of a baseline of discomfort and hearing loss that makes the ear feel "tight" all the time.

I have a bigger problem too, which is otosclerosis: a degenerative disease that leads nowhere good. To try and do something about it I have to take huge daily doses of fluoride, and I have no idea what that is going to lead to either: it doesn't seem that healthy.

Having hearing loss and not hearing things like rain drops also affects your morale. We humans rely on our senses to "feel the world": it's the interface between the world and our beings. When we lose that, we lose a connection with the world, and that's very hard to deal with.

Does your ear only feel warm to you or is a doctor able to assess a higher temperature? If the latter, it is a symptom that doctors should be able to latch on to start going down their 5-whys path.

Good luck!

 

[OnceUponaTime]

You're still crying after 2 years Daniel.

I'm still crying after 8! Severe tinnitus is not something you can ignore or "put it on the back of your head," like some say. It is relentless, 24/7 loud noise.

With that said, I cry, I suck it up as best as I can and finish my day.... Yes, one day at a time is how I can deal with this monster. All life as you know it, changes in a blink of a second. All of a sudden, you cannot sleep, you have anxiety, depression, afraid of noises, getting a cold, allergies, mri's, going to the dentist, getting on an airplane, indoor activities, a truck passing by, fireworks.... dreading invitations to parties, crying babies, the city, balloons, motorcycles, medications, dating... shall I continue? It is different for every one, and everyone deals with it differently. We just need to be more kind and have compassion for the other person's suffering and at least lend an ear, offer some kind words, say a little prayer... send, give a hug.

All I can do is deal with what its been thrown at me today... at this moment. Tomorrow, I do not know what will it bring so I try not to think of it too much.

@Allan1967 Sending you a big hug. Hang in there. One day at a time, my friend.

 

[Agrajag364]

Everything would be permanent. I've tried to end it 3 times this weekend.

I cannot stand it anymore. In fact it's not even my tinnitus/hyperacusis, it's this hopelessness I feel.

Oh my goodness Allan that's terrible. Reach out to your kids. If you are still having a spike from Lenire it may well calm down.

 

[all to gain]

I'm still crying after 8! Severe tinnitus is not something you can ignore or "put it on the back of your head," like some say. It is relentless, 24/7 loud noise.

With that said, I cry, I suck it up as best as I can and finish my day.... Yes, one day at a time is how I can deal with this monster. All life as you know it, changes in a blink of a second. All of a sudden, you cannot sleep, you have anxiety, depression, afraid of noises, getting a cold, allergies, mri's, going to the dentist, getting on an airplane, indoor activities, a truck passing by, fireworks.... dreading invitations to parties, crying babies, the city, balloons, motorcycles, medications, dating... shall I continue? It is different for every one, and everyone deals with it differently. We just need to be more kind and have compassion for the other person's suffering and at least lend an ear, offer some kind words, say a little prayer... send, give a hug.

All I can do is deal with what its been thrown at me today... at this moment. Tomorrow, I do not know what will it bring so I try not to think of it too much.

@Allan1967 Sending you a big hug. Hang in there. One day at a time, my friend.

All of what you said is me!!

I'm finding it hard to stay alive. But I have young kids...

 

[BobDigi]

Hi Jeremy,

Sorry to see you are having a hard. If you're not able to habituated and wait the many up and coming treatments coming down the pipe line, have you considered steam cells? It seems to be one of the things people have found real success with.

There's nothing in the pipeline. And stem cell seems to be the answer to everything! But I expect it's overrated. I hope I'm wrong on stem cell. But nothing is round the corner. I'm not being deliberately negative. I just don't think it's helpful to give false hope.
Habituation is the only meaningful hope.

 

[gerhei]

For the moment, I'm afraid yes. There are 2 things I look forward to:

1. symptom reducing bi-modal stimulation: this isn't going to cure us (and won't give me back any hearing), but it seems promising at reducing the noise
2. hearing regeneration tech: I am pretty optimistic about restoration of hearing leading to improvements in T, but that's quite a few years away

I think that there is a third option and the option is already available, tested, evaluated and considered as valid therapy. It is called the "Heidelberg Model of Music Therapy" that is carried out at the DZM in the city of Heidelberg, Germany. I posted something in this thread here that is up-to-date:

https://www.tinnitustalk.com/thread...-chronification-of-tinnitus.8830/#post-475965

The therapy is also no cure in the strict sense, but it reduces the tinnitus in about 70-80% of patients significantly and can make it disappear in 5-10% of the cases. And I think that this is more than enough. Hearing loss can in many cases be compensated by hearing aids.

Let me know your thoughts.

 

[Bartoli]

The therapy is also no cure in the strict sense, but it reduces the tinnitus in about 70-80% of patients significantly and can make it disappear in 5-10% of the cases.

I'm very skeptic these numbers are true, as in, obtained in a measurable and scientifically correct way. We have more devices and treatments like Desyncra that juggle with numbers and definitions to claim good effectiveness and they were all a let down.

How come it has remained so relatively unknown when it can boast these results? My guess is because the claimed succes rates aren't close to the real-world numbers.

 

[GregCA]

I think that there is a third option and the option is already available, tested, evaluated and considered as valid therapy. It is called the "Heidelberg Model of Music Therapy" that is carried out at the DZM in the city of Heidelberg, Germany. I posted something in this thread here that is up-to-date:

https://www.tinnitustalk.com/thread...-chronification-of-tinnitus.8830/#post-475965

The therapy is also no cure in the strict sense, but it reduces the tinnitus in about 70-80% of patients significantly and can make it disappear in 5-10% of the cases. And I think that this is more than enough. Hearing loss can in many cases be compensated by hearing aids.

Let me know your thoughts.

Sure, here are my thoughts: sorry, I'm personally not interested in any therapy that deals with "distress". I don't have any distress. I just have loud tinnitus, so I'm only interested in therapies that will address that.

 

[EDDTEKK]

I think that there is a third option and the option is already available, tested, evaluated and considered as valid therapy. It is called the "Heidelberg Model of Music Therapy" that is carried out at the DZM in the city of Heidelberg, Germany. I posted something in this thread here that is up-to-date:

https://www.tinnitustalk.com/thread...-chronification-of-tinnitus.8830/#post-475965

The therapy is also no cure in the strict sense, but it reduces the tinnitus in about 70-80% of patients significantly and can make it disappear in 5-10% of the cases. And I think that this is more than enough. Hearing loss can in many cases be compensated by hearing aids.

Let me know your thoughts.

forget Heidelberg! I did the therapy and it did nothing. In my opinion it is even not worth to call it a therapy.
I would nobody recommend that shit.

 

[PeteJ]

No one is addressing the loud tinnitus, ear pain and hyperacusis that people have.

Enough with these "therapies" that address distress and are treatments for how "you react to the tinnitus."

I am so tired about reading about that and people advocate those treatments are therapies.

There are people here with tinnitus worse than mild and thus, those won't work. We need treatments that treat the tinnitus directly, whatever that is. Maybe it is improving hearing, treating hearing loss, repairing auditory damage or doing something to the brain so that stops malfunctioning and producing the tinnitus sounds. It needs to be a treatment that reduces tinnitus and helps make our ears normal again. :-(

 

[gerhei]

Sure, here are my thoughts: sorry, I'm personally not interested in any therapy that deals with "distress". I don't have any distress. I just have loud T, so I'm only interested in therapies that will address that.

First of all, this therapy doesn't deal with distress but "reprograms" the auditory cortex so that the noise becomes quieter a lot. Secondly, an attitude like this is in my opinion really unhelpful because it makes any sort of treatment that doesn't make the tinnitus diappear 100% impossible.

 

[gerhei]

forget Heidelberg! I did the therapy and it did nothing. In my opinion it is even not worth to call it a therapy.
I would nobody recommend that shit.

Oh, really? So why don't you tell us more about the therapy?

 

[all to gain]

I can't believe life has come to the point where I have to choose between leaving my young family behind or taking my own life because of the constant torment.

 

[DaveFromChicago]

To gerhei:
I tried Desyncra for 36 weeks (which was also supposed to reprogram the auditory cortex) and it was as useless as shining a flashlight on my head would have been.
I recall that during this period I gradually, intuitively realized that this sound application method was just too weak to directly affect whatever area of the brain (or any other anatomy) that was causing tinnitus (which is why I have high expectations for the addition of Trigeminal Nerve Stimulation in sound treatments).
Please note that I went into this with the most positive, hopeful attitude, so this failure cannot be ascribed to "negative thinking."
Check out the young lady who has posted various "My Life With Tinnitus" videos on You Tube.
She tried Neuromonics (another music based "therapy") and reported that it also did nothing.

 

[another sean]

There's nothing in the pipeline. And stem cell seems to be the answer to everything! But I expect it's overrated. I hope I'm wrong on stem cell. But nothing is round the corner. I'm not being deliberately negative. I just don't think it's helpful to give false hope.
Habituation is the only meaningful hope.

I didn't say anything was around the corner. 'In the pipeline' is not the same as 'around the corner'. I'm not giving false hope. It is fact therapies are being worked on. Just look in the Research News and Treatments forum.

 

[Daniel Lion]

I can't believe life has come to the point where I have to choose between leaving my young family behind or taking my own life because of the constant torment.

ATG you don't have to take your life, you have had tinnitus since June.
Calm down brother... we have talked about this... if you need benzos... get some... a cigarette, a shot of vodka, a run around the park.

You are not leaving your children... dig deep.
You have all of our support and love...
It's gonna take time...
Trust me please... you have to give it time...
Message me anytime... you are loved and your family needs you.we need you..
Hang tight brother and give it time please...

Please.

 

[all to gain]

ATG you don't have to take your life, you have had tinnitus since June.
Calm down brother... we have talked about this... if you need benzos... get some... a cigarette, a shot of vodka, a run around the park.

You are not leaving your children... dig deep.
You have all of our support and love...
It's gonna take time...
Trust me please... you have to give it time...
Message me anytime... you are loved and your family needs you.we need you..
Hang tight brother and give it time please...

Please.

I don't drink or smoke and am not about to begin just for tinnitus.

I refuse to take benzos. Drugs, ie medication, has messed me up for life. Unless a drug that cures tinnitus comes along I don't want to put any other crap in my body. I would literally rather die than do that.

Daniel, I not only have very high pitched whining/drilling/electrical tinnitus that is non-stop in both ears, but I have to contend with OCPD , which is all about perfection. Tinnitus and OCPD are a match made in hell. Think of tinnitus, then think of tinnitus x 10 or even more.

 

[Daniel Lion]

I don't drink or smoke and am not about to begin just for tinnitus.

I refuse to take benzos. Drugs, ie medication, has messed me up for life. Unless a drug that cures tinnitus comes along I don't want to put any other crap in my body. I would literally rather die than do that.

Daniel, I not only have very high pitched whining/drilling/electrical tinnitus that is non-stop in both ears, but I have to contend with OCPD , which is all about perfection. Tinnitus and OCPD are a match made in hell. Think of tinnitus, then think of tinnitus x 10 or even more.

I am sorry ATG... I just want to help... I know you are in pain times 100.
I understand your feeling about drugs and completely respect that. Without drugs, how to calm your nervous system down...? Meditation? Long walks? Hot baths?

I want to help, I want you to feel hope and to regain some faith that things can get better... what can I say? How can I help?

Guide me, tell me if you can...

You are new to this and going through the hellish part...

You need your family, they need you...
I want to help... but don't know how?
I am so sorry mate... I encourage you to hold on, it's early days... it took me a year to start to feel emotionally better, with no change in my tinnitus.

Let me know what I can do or say and I will do that.

Your friend, Daniel

 

[GregCA]

First of all, this therapy doesn't deal with distress but "reprograms" the auditory cortex so that the noise becomes quieter a lot.

The measured outcome is a score on a tinnitus questionnaire, not loudness, so the study does not prove any changes in the noise characteristics at all. If I misread the study, feel free to point out the parts that talk about volume reduction values.

Secondly, an attitude like this is in my opinion really unhelpful because it makes any sort of treatment that doesn't make the tinnitus diappear 100% impossible.

Well, you asked me what I thought about it, remember?

Let me know your thoughts.

I gave you my thoughts. I explicitly bolded and underlined the word "personally", because I know there are many sufferers who are in distress and would benefit from a distress-reducing therapy. I'm just not one of them, simply because I'm not in distress.

On another topic, I am quite well versed in tinnitus sound therapies, having created a few of them out of scientific papers. I've read many papers about them and understand well their principles of action. If there was one that actually stands out today with some level of effect on loudness, it's windowed white noise therapy. 12 dB reduction if I recall the study correctly.

Perhaps you didn't understand me: I'm not rejecting any therapy that doesn't make T disappear completely, as you imply. I'm just interested in therapies that target the intensity/volume of the noise, because I personally have little use for other therapies. Feel free to be interested in other things!

 

[GoatSheep]

The measured outcome is a score on a tinnitus questionnaire, not loudness, so the study does not prove any changes in the noise characteristics at all. If I misread the study, feel free to point out the parts that talk about volume reduction values.

Well, you asked me what I thought about it, remember?

I gave you my thoughts. I explicitly bolded and underlined the word "personally", because I know there are many sufferers who are in distress and would benefit from a distress-reducing therapy. I'm just not one of them, simply because I'm not in distress.

On another topic, I am quite well versed in tinnitus sound therapies, having created a few of them out of scientific papers. I've read many papers about them and understand well their principles of action. If there was one that actually stands out today with some level of effect on loudness, it's windowed white noise therapy. 12 dB reduction if I recall the study correctly.

Perhaps you didn't understand me: I'm not rejecting any therapy that doesn't make T disappear completely, as you imply. I'm just interested in therapies that target the intensity/volume of the noise, because I personally have little use for other therapies. Feel free to be interested in other things!

You've had success with this windowed white noise therapy?

 

[all to gain]

I'm just not one of them, simply because I'm not in distress.

You feel no distress? Did you when you first got it?

 

[all to gain]

I am sorry ATG... I just want to help... I know you are in pain times 100.
I understand your feeling about drugs and completely respect that. Without drugs, how to calm your nervous system down...? Meditation? Long walks? Hot baths?

I want to help, I want you to feel hope and to regain some faith that things can get better... what can I say? How can I help?

Guide me, tell me if you can...

You are new to this and going through the hellish part...

You need your family, they need you...
I want to help... but don't know how?
I am so sorry mate... I encourage you to hold on, it's early days... it took me a year to start to feel emotionally better, with no change in my tinnitus.

Let me know what I can do or say and I will do that.

Your friend, Daniel

Yeah, no one knows how to help. It's not your or their fault.

I feel no hope what-so-ever. All the so-called cures look 10s of years off and Neuromod looks like a dud and Shore's device is years away if ever. Where is the hope? I can't stand the very second I am living in.