Has There Been a Day Where You Didn't Think About Tinnitus Since You Developed It?

[Dr. Nagler]

Dr. Nagler is saying: More often than not I am totally unaware of mine upon waking in the morning (unless I purposely seek it, which I do not do ... because why would I??!!)

Well, I think you are a lucky guy Dr. Nagler... I don't have to seek my T.

I'm not lucky, Gabrielle. On the contrary, as I see it severe intrusive tinnitus is among the most unlucky things that can happen to you. It's a real life changer. So I do not consider myself to be lucky at all in that regard. In fact, at one point in time I thought my life was totally over!

The difference is ... I decided to do something about it.

 

[NiNyu]

@Dr. Nagler, Gab was not referring that you are lucky because you contracted T but that you are lucky to need **purposely seek for it** to be totally aware of it; upon waking in the morning.

If I needed to **purposely seek for it** in order to hear it, I wouldn't have a problem with it, I think.

 

[Mad maggot]

I never think bout my T but I can't exactly ignore it completely either. I just kind of accept and don't fight it. Nits weird because I don't like T and wish it would go away but I don't fight it anymore but just accept it the way I accept that I have to wear glasses and can't have proper vision.

 

[Gabrielle]

@NiNyu said:

@Dr. Nagler, Gab was not referring that you are lucky because you contracted T but that you are lucky to need **purposely seek for it** to be totally aware of it; upon waking in the morning.
If I needed to **purposely seek for it** in order to hear it, I wouldn't have a problem with it, I think.

Great NiNyu!!! You are just puting the words right out of my mouth. YOU understand what I wrote!!! Dr. Nagler did unfortunately not.
Your words are exactly correct!

THANKS and greets,
Gab x

 

[Dr. Nagler]

Dr. Nagler, Gab was not referring that you are lucky because you contracted T but that you are lucky to need **purposely seek for it** to be totally aware of it; upon waking in the morning. If I needed to **purposely seek for it** in order to hear it, I wouldn't have a problem with it, I think.

Great NiNyu!!! You are just puting the words right out of my mouth. YOU understand what I wrote!!! Dr. Nagler did unfortunately not. Your words are exactly correct!

I understand. I understand only too well. Perhaps I did not explain myself adequately.

What I was trying to convey was that I made my own luck in that regard. Back in 1994-1995, I used to hear my tinnitus every waking hour. I did not have to seek it at all. Immediately upon waking I became aware of the fact that my ears were SCREAMING. And that awareness stayed with me every waking moment of every single day. I even dreamed tinnitus - when I could sleep at all, that is. There was absolutely no escape for me.

I knew that I could not function like that. I could not live like that. In fact I did not want to live at all!

Thomas Jefferson said:

"I am a great believer in luck, and I find the harder I work, the more I have of it."​

So I worked hard - real hard - to find a solution. I was an all-or-nothing black-and-white perfectionist. I mean, really. I was a mathematics major who became a cancer surgeon. It doesn't get any more black-and-white than that. Black-and-white was how I was "hard-wired." And I had to change all that to make my own luck.

I have written on numerous occasions about the universal formula: Strategy, Determination, Flexibility, and Insight.

Well now when I wake in the morning, I am rarely ever aware of my tinnitus. And during the day when I do happen to become aware of it, my tinnitus will distract me ... but it rarely causes me much distress. My ears are still SCREAMING every bit as much as they were twenty years ago. That hasn't changed at all. In fact, several months ago - for some reason I cannot determine - it got even LOUDER. What has changed isn't my tinnitus; what has changed is me.

I am not on this board to gloat. I am here to tell you that there is hope. Real, honest-to-goodness, legitimate hope. Hope for meaningful lasting relief. I am here to tell you that if a hard-wired mathematician/surgeon can make that leap, then you can too. Your path is there. It may not be apparent to you. It may not be the same path I took. But your path is there nonetheless. Your job is to find it. And if that takes luck, then I respectfully suggest that you listen to Jefferson. Work hard - real hard - and make some luck for yourself. You deserve it, don't you?

Dr. Stephen Nagler

 

[NiNyu]

>@Dr. Nagler, 'What has changed isn't my tinnitus; what has changed is me.'

Fair, you do believe in this. But If you understand -- if you genuinely understand -- you should know that there's no such thing as **one size fit all** treatment/solution for any ailment/anybody.

While it's great that *changing your attitude/making your own luck* did work for you, for some people this simply **doesn't** work.

I don't want to change. Because even if I did, it wouldn't change one thing of what T causes.
I am completely disabled. When I travel by bus, shower, being in a cafe my T explodes and I can't understand speech anymore. It feels like war! If your T isn't **killer reactive** you don't understand this.

I wish all T was **killer reactive** cos then the T community would finally **wake up** and demand a real treatment. But that's not totally true. Rather I'd wish there was no such thing as T. Hearing loss, okay but no T. But they are obviously connected.

You believe that your T has never changed, but maybe it did. Maybe it got better over time. Thus you can handle it. Then the sudden worsening, and improvement? T is so whimsical, we never know. That's why all the few trials are useless unless they resolve T or have some permanent effect, which they don't.

It's hopeless. Unless T is going to resolve eventually. Or at the very least gets as quiet as a whisper in the dark this is **the end** for me.
You know, you are lucky. You are a doctor. Thus you have access to peace with dignity.

It doesn't matter what we write here. It's all a waste of time. All this time and effort put into this comments could have been used for finding a cure. We wasting our time! And time is the most precious commodity there is.

 

[Thongjy]

@Dr. Nagler is saying: More often than not I am totally unaware of mine upon waking in the morning (unless I purposely seek it, which I do not do ... because why would I??!!)

Well, I think you are a lucky guy Dr. Nagler... I don't have to seek my T.
It's there, every morning I wake up. Very LOUD.
I don't have to seek for it.

And it's not because of T is driving my buss... I have some (a lot) other things to do.

Can check if u are a back sleeper or side sleeper?

 

[Gabrielle]

@Thongjy Can check if u are a back sleeper or side sleeper?

Both.

 

[Mad maggot]

I don't think Dr Nagler was trying to say there was a one size fits all solution. He was trying to explain what worked in his case and that there is a solution for you but that you haven't found it yet. He wasn't suggesting that you had not found it yet because something is wrong with you as he didn't find his solution immediately either. I also think that when you are being affected so badly by your T and feel so desperate, that you are easily upset and misinterpret comments made by people - including Dr Nagler.
I myself get easily upset on the days when I'm not coping as well with my symptoms. And I can take offence at someone's innocent remark. It's because your coping ability is stretched to its limits and so anything else that comes along (such as a comment by someone that you read negatively) it is the straw that breaks the camels back.
What Dr Nagler was trying to say was that there is a solution for you. Don't lose hope. It's obviously taking longer than you would like to find the right solution and this is a huge stress for you. But keep looking and keep trying. Dr Nagler and all of us here want you to be well or if not we'll at least find some improvement to make things easier for you. We can suggest ideas that have worked for us that you can try. But it doesn't mean that it will work for you. It just means you keep looking and keep trying. Just like when someone has to try many different medications for a sickness like epilepsy or Parkinson's disease. The Dr may not find the right pill for you until you have tried two or three. But you keep trying.
I can tell that you feel Dr Nagler is criticising you because you have not got a solution yet and he has. But I'm sure that is not what he is implying. Rather, he read your post and like me saw your desperation and how badly you are feeling and wanted to offer you some hope to hold onto to keep going and not give up. Sometimes what we say however does not have the desired effect and may have the opposite one to which we were trying for. Which it seems has happened in this cas. So that rather than feel encouraged and supported by his comments, you feel under attack. Dr Nagler appears to be a very logical type of personality. Someone good at maths and organisation etc. not one for flowery words of love and comfort . So the way he expresses himself perhaps sounds clinical but isn't meant to be.
Sorry Dr Nagler if this is not true and I'm misrepresenting you! But what I mean is that while a woman might say words that sound more empathetic than a man might, it does not mean that the empathy is not there. It just might not sound as obvious because of the different language.
Anyway I'm a Sheila and I talk like a Sheila! Ha ha and I'm trying to say that we're all sorry and understand the struggle you are having and it really stinks to have T like you describe. We all hope you will keep searching and trying and find something that works for you but most importantly while you are searching for a solution or a way to lessen the problem, you find a way to live with this that doesn't drive you into the ground. Because I can tell from your post you are not feeling very happy at all and are in fact down right miserable. I've been in that place and it's an awful place to be. So my heart goes out to you and I hope you have someone to support and love you and help you and give you the hugs and flowers you need. But Dr Nagler is offering the factual approach without the flowery stuff - you need both but he can't give the two. You have to get the rest elsewhere.