Suicidal

[GregCA]

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

I didn't try it. See study here: http://www.tinnitusjournal.com/arti...ective-personalized-treatment-of-tinnitus.pdf

 

[Chinmoku]

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.

Brother, I understand. I have been suffering anxiety with strong hellish somatic expressions for years and tinnitus, when you have anxiety, is the worst thing because if before tinnitus you could relax in some moments and try meditation, relaxation etc, with tinnitus this becomes almost impossible and it is 100 x worse. Tinnitus feeds anxiety and viceversa, breaking this vicious cycle is extremely difficult. Add eye floaters, restless legs, and a medication that might be causing more problems than benefits but you can't stop if you don't want another dozen symptoms from hell, and you have a perfect storm. This is my life now. I'm sitting at work pretending that this crazy screaming hiss from hell and the other crazy symptoms are not important. I push through every single hour, sometimes minute. I cry a lot. I mourn my previous life. I see colleagues having the normal ups and downs of life and envy them because I'm now in a different category, the category of trying to make it until this evening and kiss my children again. They complain about things that make me laugh now.
Can we learn to live like this? I don't know. There are people who made sense of life in crazy conditions, like Stephen Hawking. There are people who have tinnitus and are also blind and have a ton of other problems, and they fight on. This does not help us directly, but shows that it is possible to carry on, at least for a little while. You are very negative on the fact that we will receive help from the medical community, but I am more optimistic. There is now a critical mass of research that has arrived at an almost breakthrough point. There is circumstantial evidence that Regain/FX 322 may really work, and we have several other players in the race, I hope OTO413 can help us too. Multimodal neuromodulation has started, this will lead to a healthy competition, my best hope is Susan Shore, I'm sure she will be able to help not just 25% of sufferers but a much larger percentage, and carry us to the other shore. Let's at least try to resist until some help is on the way, we owe this to our children, I don't know how, but we have to carry on.

 

[dan]

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.

How loud is your tinnitus?
How do you sleep?

 

[all to gain]

Brother, I understand. I have been suffering anxiety with strong hellish somatic expressions for years and tinnitus, when you have anxiety, is the worst thing because if before tinnitus you could relax in some moments and try meditation, relaxation etc, with tinnitus this becomes almost impossible and it is 100 x worse. Tinnitus feeds anxiety and viceversa, breaking this vicious cycle is extremely difficult. Add eye floaters, restless legs, and a medication that might be causing more problems than benefits but you can't stop if you don't want another dozen symptoms from hell, and you have a perfect storm. This is my life now. I'm sitting at work pretending that this crazy screaming hiss from hell and the other crazy symptoms are not important. I push through every single hour, sometimes minute. I cry a lot. I mourn my previous life. I see colleagues having the normal ups and downs of life and envy them because I'm now in a different category, the category of trying to make it until this evening and kiss my children again. They complain about things that make me laugh now.
Can we learn to live like this? I don't know. There are people who made sense of life in crazy conditions, like Stephen Hawking. There are people who have tinnitus and are also blind and have a ton of other problems, and they fight on. This does not help us directly, but shows that it is possible to carry on, at least for a little while. You are very negative on the fact that we will receive help from the medical community, but I am more optimistic. There is now a critical mass of research that has arrived at an almost breakthrough point. There is circumstantial evidence that Regain/FX 322 may really work, and we have several other players in the race, I hope OTO413 can help us too. Multimodal neuromodulation has started, this will lead to a healthy competition, my best hope is Susan Shore, I'm sure she will be able to help not just 25% of sufferers but a much larger percentage, and carry us to the other shore. Let's at least try to resist until some help is on the way, we owe this to our children, I don't know how, but we have to carry on.

I don't think i can live like this. It's taken life away from me. I am not the same person. But then the future of my kids without me goes through my mind... a future that would be completely different if I were still here!

I am very negative in regard to receiving help from the medical community. I feel things are many years off yet. Shore's device may be of no use to me as I have non-somatic drug induced tinnitus. And when is FX-322 supposed to hit the shelves? If it ever gets to that point it will be years off. Not 2-3, but 10+.

Hope is good, but holding onto false hop of fantasy isn't.

 

[Zach1230]

I should have gone today tolerable isn't a point no more instead I'll be going in the dark good luck T guys and gals

 

[Chinmoku]

I don't think i can live like this. It's taken life away from me. I am not the same person. But then the future of my kids without me goes through my mind... a future that would be completely different if I were still here!

I am very negative in regard to receiving help from the medical community. I feel things are many years off yet. Shore's device may be of no use to me as I have non-somatic drug induced tinnitus. And when is FX-322 supposed to hit the shelves? If it ever gets to that point it will be years off. Not 2-3, but 10+.

Hope is good, but holding onto false hop of fantasy isn't.

I think my tinnitus is a mix of ear infection and drug induced, so I am in a similar boat. I think Shore's device will help also non-somatic tinnitus. I hope FX322 is ready mid 2020s as they say, they are competing with Regain so hopefully they will hurry up, 2025? Five years like this or with the constant worsening I have been having since inception I don't know if I can manage, but I'll live day by day, maybe hour by hour, second by second. I can't leave my children alone.

 

[all to gain]

I think my tinnitus is a mix of ear infection and drug induced, so I am in a similar boat. I think Shore's device will help also non-somatic tinnitus. I hope FX322 is ready mid 2020s as they say, they are competing with Regain so hopefully they will hurry up, 2025? Five years like this or with the constant worsening I have been having since inception I don't know if I can manage, but I'll live day by day, maybe hour by hour, second by second. I can't leave my children alone.

You HOPE FX-322 is ready by the mid 2020s, but I doubt it will be. Even if it ready, there is no knowing how many people it will help, if any. It may do nothing for my or your tinnitus.

 

[MRItechssuck]

I'm hoping for any device, but Dr. Shore's seems the most promising in my personal opinion.

I haven't seen a thread dedicated to her device like the Neuromod one.

 

[GoatSheep]

I'm hoping for any device, but Dr. Shore's seems the most promising in my personal opinion.

I haven't seen a thread dedicated to her device like the Neuromod one.

It's in the Research News section because it's not been released. Lenire is in the treatment section because it's been released.

https://www.tinnitustalk.com/thread...igan-tinnitus-discovery-—-signal-timing.2805/

 

[GregCA]

You feel no distress?

I feel no distress.

Did you when you first got it?

I did. Big time.

 

[OnceUponaTime]

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.

I understand what you are going through because I was there too. Feeling hopeless, scared...not sleeping. It has taken years, years of tears, trying different therapies, barely hanging by one thread... but I am still here. I have to say that a combination of things throughout the years has helped me. Coming to TT, was one of them. I cannot say it has been a road full of roses and gardenias, but I have smiled and laughed again when at one point I thought that was impossible. My tinnitus is severe and 3 different noises... the drone being the "evilest" of them all. I have missed a lot of "events" and "special occasions" with family and friends but that's ok... They still have me, I still have them and with Periscope and video chatting, I have been able to "be present" in some way, when I can't. Please, give yourself sometime, let the ears calm down a little, try different things before calling it quits. I waited years and years to take any medications on a steady bases until last Spring when I thought I couldn't breathe anymore... and it has helped me. Today I am ok, still the buzz in my head...still I cried today...but I am ok. You will be too. Hang in there. Just one day at a time....

 

[all to gain]

I feel no distress.

How old are you Greg? What have you done to not feel distress and live with this beast?

 

[all to gain]

I understand what you are going through because I was there too. Feeling hopeless, scared...not sleeping. It has taken years, years of tears, trying different therapies, barely hanging by one thread... but I am still here. I have to say that a combination of things throughout the years has helped me. Coming to TT, was one of them. I cannot say it has been a road full of roses and gardenias, but I have smiled and laughed again when at one point I thought that was impossible. My tinnitus is severe and 3 different noises... the drone being the "evilest" of them all. I have missed a lot of "events" and "special occasions" with family and friends but that's ok... They still have me, I still have them and with Periscope and video chatting, I have been able to "be present" in some way, when I can't. Please, give yourself sometime, let the ears calm down a little, try different things before calling it quits. I waited years and years to take any medications on a steady bases until last Spring when I thought I couldn't breathe anymore... and it has helped me. Today I am ok, still the buzz in my head...still I cried today...but I am ok. You will be too. Hang in there. Just one day at a time....

What meds do you take? Do you have kids?

Still crying after 8 years doesn't give me much hope.

 

[PeteJ]

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

Why aren't any "experts" and researchers dealing with the physical phenomenon of tinnitus? People can't even universally explain or understand what is going on (with tinnitus).

The brain and ears (auditory system/cortex) is damaged or not working properly? Right? What else?

Can't researchers look at NORMAL aka "no tinnitus" brain and ears vs one with tinnitus and figure out what's wrong and treat it? There is neuro modulation and restoring hearing treatments in the pipeline but they can't say with certainty what it will do for tinnitus?

 

[ChrisBoyMonkey]

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.

Have you checked for clinical trials on your area? Even if these things aren't released yet, you can check to see if you qualify for a clinical trial near you.

OTO-313 is testing in Florida, I think an inclusion criteria is tinnitus less than 6 months but you're not much over that so it might be worth a try.

https://clinicaltrials.gov/ct2/show/NCT03918109

 

[OnceUponaTime]

What meds do you take? Do you have kids?

Still crying after 8 years doesn't give me much hope.

Yes, I have two girls. They were 2 and 5 when I first got tinnitus. Now after 8 years, I've seen them grow and I am happy that I have been here with them, even through this most difficult trial in my life.

I am sorry if my crying after 8 years doesn't give you hope. It is what it is. I am a girl after all... (chuckling) I am been transparent. Living with severe tinnitus is not easy for me, but I am doing it the best that I can since there is no other option for me at the moment.

I hope you find your own way of coping. Best to you.

Once

Oh, I take 1/2 of .5mg of Clonazepam, once a day when needed.

 

[Chinmoku]

You HOPE FX-322 is ready by the mid 2020s, but I doubt it will be. Even if it ready, there is no knowing how many people it will help, if any. It may do nothing for my or your tinnitus.

Yes, we don't know. It might not help you, on the other hand it might help you. At times tinnitus due to medication fades away, although it may take a long time. Given that we don't know for sure, we have a choice on what to believe.

 

[GregCA]

How old are you Greg?

Mid 40s.

What have you done to not feel distress and live with this beast?

1. I've used CBT successfully to deal with irrational thinking (I had used CBT in another context and reused the same toolkit) and help manage anxiety
2. I've let time go by. Time alone can help tons.
   
3. I've reclaimed some of the pleasures that had been taken away from me due to the initial anxiety: I can now eat/drink whatever I want (it makes no difference to my T), and I can keep playing my drums (with headphones, but at reasonable volume). The immediate post-onset world of interdictions left very little scope in way of enjoyable parts of life. I've pushed the boundaries to expand that scope with trial and error.
4. I've exhausted the parts that were under my control (I underwent surgery, researched therapies/cures, etc), so now I'm left with things that aren't under my control (for example, how my degenerative disease is going to evolve), which I don't feel bad about for the very reason that I have no control over them

Don't get me wrong. It is still extremely difficult to live with, but I have no anxiety: I know how tomorrow will be, and it won't be worse than today. It won't be any better either: it will suck just like today. I have more than a thousand data points to assert that. I have the same amount of data points that say that "I'll be able to make it to tomorrow", so I'm pretty confident that I will. So I will manage, until either I die, or an effective therapy has been found, whichever comes first.

 

[PeteJ]

Have you checked for clinical trials on your area? Even if these things aren't released yet, you can check to see if you qualify for a clinical trial near you.

OTO-313 is testing in Florida, I think an inclusion criteria is tinnitus less than 6 months but you're not much over that so it might be worth a try.

https://clinicaltrials.gov/ct2/show/NCT03918109

Why do people here think I can fly all over the world?

A) I can't afford it.
B) I sometimes don't even want to leave my own place. I will drive to the grocery store to buy some groceries but that is a different ordeal.

When the tinnitus is super loud (like now) and I have ear pain, I don't feel like going very far.

Doctor or dentist appointments are different since I don't control the environment and I am stuck listening to extremely loud tinnitus and feeling severe (usually) left ear pain.

It's torture.

Yet, I am advised to travel to various places in the USA and Europe? How many people with severe tinnitus do that?

Am I an exception? Am I the only one who is broke and finds it difficult to go places because of loud, intrusive debilitating tinnitus? I rate my tinnitus as 9/10 on average and I feel suicidal every day.

If there was a certain cure available, then I would force myself to go but otherwise, I don't know how.

 

[PeteJ]

Does anyone here have a combination of a hiss/ringing and probably two or three tones (where you can't tell) and some of the tones that don't blend in pause and restart?

It's 8 to 10/10. It's so loud.

Left ear pain with that. It makes no sense suffering with this. Suicide is the only thing that makes sense to me.

If Euthanasia was allowed here, I would do it.

 

[Bartoli]

Thanks Greg. This was a very balanced and honest post. It's ones like these that I need to read to push on and address some of the irrational thoughts I sometimes get about tinnitus.

I can keep playing my drums (with headphones, but at reasonable volume)

You mean electronic drums or a normal set with earmuffs?
Haven't touched my guitar in a very long time. I was a professional jazz musician. I only want all in, some home practicing doesn't interest me if I can't go and perform. Sucks big time. If it ever gets cured it's the first career change I'll make!

 

[Daniel Lion]

I understand what you are going through because I was there too. Feeling hopeless, scared...not sleeping. It has taken years, years of tears, trying different therapies, barely hanging by one thread... but I am still here. I have to say that a combination of things throughout the years has helped me. Coming to TT, was one of them. I cannot say it has been a road full of roses and gardenias, but I have smiled and laughed again when at one point I thought that was impossible. My tinnitus is severe and 3 different noises... the drone being the "evilest" of them all. I have missed a lot of "events" and "special occasions" with family and friends but that's ok... They still have me, I still have them and with Periscope and video chatting, I have been able to "be present" in some way, when I can't. Please, give yourself sometime, let the ears calm down a little, try different things before calling it quits. I waited years and years to take any medications on a steady bases until last Spring when I thought I couldn't breathe anymore... and it has helped me. Today I am ok, still the buzz in my head...still I cried today...but I am ok. You will be too. Hang in there. Just one day at a time....

I cry all the time... love you Once... you are perfection. One day at a time, laugh, cry, hug, kiss... such is life. We do our best... and will continue to. You are a champ, you are a role model, you are beautiful inside and out...

Have a good day... I'll see you around soul sister.

 

[Daniel Lion]

What meds do you take? Do you have kids?

Still crying after 8 years doesn't give me much hope.

I never popped a pill before tinnitus... I was strong as an ox.

Things change. I leaned on meds for the first 6 months, self administered, self prescribed.
I exercise everyday.
I laugh everyday.
I cry every day.
I exercise everyday and don't take meds with the exception to my once a month two day binge..

You are away from your family, you are suffering.
You should reach out for help.
You should cry.
No shame in that.
Dig deep ATG, seek help if you can't do it alone.
You are gonna beat this, you are gonna find peace. This is the hardest time now...

Who cares if I cry everyday till I die, some tears are joy, of love for friends and family, of memories, of hopes and dreams.

No shame in crying... it's healthy...

Now take one day at a time, change, transform, accommodate, comprise and get your life back.

You matter... you can do this...

Do it... stop asking why... ask how... how can I move forward...

Your success is necessary, not just for you, but your family and forum members like me...
I believe in you...

 

[Chinmoku]

Am I an exception? Am I the only one who is broke and finds it difficult to go places because of loud, intrusive debilitating tinnitus? I rate my tinnitus as 9/10 on average and I feel suicidal every day.

If there was a certain cure available, then I would force myself to go but otherwise, I don't know how.

No you are not. Some days I have hardly the strength and the willpower to get up from bed. I envy these people who can get into a jet and fly to South Korea, or Russia, or Thailand for prp/stem cells etc. I can hardly make it to my GP or to a specialist in my town. It makes me think my tinnitus is much worse, as I can't see myself in a 10-12 hours flight these days, although I took a lot of those in the past.
I think we need to improve/get used to it a little more before we can be more proactive. I know, it's hard, it seems impossible, but what else can we do?

 

[OnceUponaTime]

Who cares if I cry everyday till I die, some tears are joy, of love for friends and family, of memories, of hopes and dreams.

This!

Now take one day at a time, change, transform, accommodate, comprise and get your life back.

Wisdom in these words. I can write a book on this alone. A book on how tinnitus changed my life and all the "adjustments, changes, compromises, etc," I had/have to go through to finish each day.

 

[OnceUponaTime]

I cry all the time... love you Once... you are perfection. One day at a time, laugh, cry, hug, kiss... such is life. We do our best... and will continue to. You are a champ, you are a role model, you are beautiful inside and out... Have a good day... I'll see you around soul sister.

Thank you for the sweet and kind words, Daniel. I truly appreciate them.
I know it has not been easy for you either. I wish you good days my friend.
Big Hug!

 

[GregCA]

You mean electronic drums or a normal set with earmuffs?

It's a Roland vDrum (electronic).

 

[ChrisBoyMonkey]

Why do people here think I can fly all over the world?

A) I can't afford it.
B) I sometimes don't even want to leave my own place. I will drive to the grocery store to buy some groceries but that is a different ordeal.

When the tinnitus is super loud (like now) and I have ear pain, I don't feel like going very far.

Doctor or dentist appointments are different since I don't control the environment and I am stuck listening to extremely loud tinnitus and feeling severe (usually) left ear pain.

It's torture.

Yet, I am advised to travel to various places in the USA and Europe? How many people with severe tinnitus do that?

Am I an exception? Am I the only one who is broke and finds it difficult to go places because of loud, intrusive debilitating tinnitus? I rate my tinnitus as 9/10 on average and I feel suicidal every day.

If there was a certain cure available, then I would force myself to go but otherwise, I don't know how.

Sorry, I thought you were in Florida for some reason. Just trying to help.

 

[PeteJ]

No one wants to acknowledge that severe tinnitus exists and that people have it and suicide can be a decision by such people.

I am annoyed by people who keep telling thse people "to get help" or "call a doctor."

To those clueless people, I say go fuck yourself. If you don't understand or try to understand the suffering severe tinnitus is, then don't annoy people.

 

[all to gain]

I never popped a pill before tinnitus... I was strong as an ox.

Things change. I leaned on meds for the first 6 months, self administered, self prescribed.
I exercise everyday.
I laugh everyday.
I cry every day.
I exercise everyday and don't take meds with the exception to my once a month two day binge..

You are away from your family, you are suffering.
You should reach out for help.
You should cry.
No shame in that.
Dig deep ATG, seek help if you can't do it alone.
You are gonna beat this, you are gonna find peace. This is the hardest time now...

Who cares if I cry everyday till I die, some tears are joy, of love for friends and family, of memories, of hopes and dreams.

No shame in crying... it's healthy...

Now take one day at a time, change, transform, accommodate, comprise and get your life back.

You matter... you can do this...

Do it... stop asking why... ask how... how can I move forward...

Your success is necessary, not just for you, but your family and forum members like me...
I believe in you...

Taking one day at a time sucks. I like(d) planning for the future, now I can't.

Over and out.