William Shatner & Habituation

I told you - pain and temperature are exceptions.

Shatner and I are not deluded to the effect that we once suffered terribly from severe intrusive tinnitus but no longer do. The fact is ... we no longer suffer. But I'll tell you this. If it is a delusion, I'll take that delusion any day of the week over what I was going through before TRT.

Then why do you insist on arguing with somebody who used to suffer but no longer does??!! Why don't you consider the most remote possibility that there might really be something to what I have been saying here?

 

mr nagler, its all good that you dont suffer but its a fallacy to assume that just because you no longer suffer, that everybody else can no longer suffer too.

we all experience suffering in different ways. We all have different tolerances. Perhaps your tinnitus never really was that serious in the first place? And that realisation was what made you no longer suffer?

 

I don't believe that absolutely everybody else can do it. Just most everybody else. A few cannot. What it takes is:
Strategy
Flexibility
Determination
Insight

Right.

Right again. We are all unique. Our tinnitus is unique. And our suffering is unique.

But there is also a certain commonality that we share. My focus is and always has been on that commonality.

Perhaps you are right. Why don't you read the piece I have attached below and decide for yourself!

Best regards -

stephen nagler

 

i read your story nagler. This is typical of people who suffer from tinnitus. They suffer because life was perfect before tinnitus. Thats how your story began Nagler. Because you hadnt experienced any hardship previously, as soon as tinnitus came along, it was an unbearable torture.

Nagler the truth is, tinnitus is in fact rather trivial when you compare it to many of lifes other miseries. If you think tinnitus is tough, then how will you cope if and when life decides to punish you with something worse?

I would guess that most people on here only suffer from tinnitus and nothing worse otherwise they would not be spending so much time on here.

There are many more chronic incurable diseases out there. Many of which get worse, cause your physical health to deteriorate and lead to cancer and death. None of us are immune to any of them.

So actually the outlook is not as optimistic as you might like us to believe.

 

See TS. Here's the thing. You must be confusing me with someone who cares what you think about my suffering. I don't. I don't care a bit. What I do care about - deeply - is your suffering. That's the only reason I am here on this board: your suffering. But if you are not willing to have an open mind about it. If you think you already have all the answers. Well, good luck with it. That is a battle I will not fight.

 

I felt the same as you...I take campral, keppra and trobalt together and I'm near cured.

 

Danny have you ever thought you would be better regardless? You say you have zero hearing loss, there is a good chance your T just went away. You had only had it a matter of months before taking these drugs. I would get off the drugs before you do permanant damage to your body, you are probably fine.

 

If I was near cured I wouldn't spend a sixth as much time on here as you seem to.

 

Gone on its on? Very, very unlikely...I don't think reactive tinnitus, hyperacusis and 10/10 tinnitus just disappears.

 

I enjoy coming on here and talking to people and helping out. Plus, to be honest, I watch tv while I'm on the laptop.

 

then i think you are misinformed, because over the years i have read many, many, many accounts of people developing tinnitus, including pretty severe/reactive tinnitus, and having it improve dramatically or resolve entirely over the following months. this is why all the literature on the subject is careful to make a distinction between "acute" tinnitus, up to 6-12 months or so, and chronic tinnitus. Acute tinnitus often resolves spontaneously, because the body heals whatever the damage was before unwanted neuroplastic changes set in.

And, because this is so common, Telis's suggestion that the drugs you've taken may have had nothing to do with your recovery, is spot on. Because you have taken the drugs, you will never know what might have happened otherwise.

 

I never started campral or keppra till a few weeks back...As far as trobalt was concerned wasn't a permanent reduction as it was loud when I woke up until I took trobalt. I highly doubt I'd be cured naturally.

 

History repeats itself,

https://www.tinnitustalk.com/threads/william-shatner.315/#post-72696

19 years later and we are not one inch further. In 2030 we, those that are still around, can keep on laughing about it.

 

Actually, I think we are further. We would all like to think that progress is sort of a straight line with positive slope. Each each year brings more and more measurable results. But what is more often than not true where research is concerned ... is that progress is step-wise. We can go a long time without any measurable results at all, and then there is a vertical leap up ... followed by another plateau ... followed by another vertical leap ... and on it goes. Seems to me that we are on a plateau right now, but progress is definitely being made. What we are not yet seeing is the measurable result piece - but the next vertical leap may be not all that far away. There is just no way of knowing, which is what makes it frustrating.

So my own thinking back in 1994-5 was: While we are waiting, why not do TRT??!! Speaking only for myself (and Shatner, if I may) we are certainly glad we eventually found our way to TRT. Because here it is twenty years later ... and the world is still waiting for research for the cure to produce those measurable results!

 

Intrusive T, but was it ever painfully reactive?
As far as I understand Shatner, what he said in interviews, his was never reactive. One that sounds like the ocean and eeeeeeee?!

You see, and delusions never worked on me. That's the sad thing. My problem is T not my reaction to it. Keep in mind, I have lost all high frequencies (left). Hence I presume only those being deaf or as good as dead could have worse T.

But what you're saying here are paradoxes. As much as I like paradoxes, when it comes to T it just makes me cry.

Yeah, it's frustrating that research has brought nothing tangible/useful yet. Just a myriad of inconclusive abstracts and concepts. The cochlea is like a Pandora's box. You can open it but you won't understand its intricacy.

 

Intrusive doesn't mean painfully reactive. Intrusive means that you have to make significant compromises in your life because of your tinnitus. Like not only do you have tinnitus, but your tinnitus has you. As far as I know, Shatner's tinnitus was not "painfully reactive." And neither was mine.

That said, I see patients with "painfully reactive" tinnitus in my own clinic all the time. And they by and large respond very well to TRT.

 

Wow. This thread. Seriously, why so much animosity in here.

I never did TRT so I have no personal opinion on it from experience either way. All I know is that habituation is a very real process, and this is coming from someone who thought his tinnitus was the worst and there was no hope of ever getting over it.

Well I have. I'm 9 months in now and life is back to normal. What did I do? Nothing in particular, I just picked myself up and got on with my life as before. My tinnitus is still the same, however I just don't have any reaction to it anymore.

If TRT has helped as much as one person help achieve habituation then I can only see it as a positive thing. I know all too well the feeling of wishing not to wake up in the morning when I was in the dark place with this, to be released from that is like being given a second shot at life.

 

@eldudebro , if you do not have painfully reactive T it's possible to hab. and carry on with life. Having painfully reactive T is a whole different world.

Significant compromises in my life because of T is euphemism in my case. I cannot do anything anymore. Just open the faucet makes my T explode. It's really insane what's going on in my brain/ears.

 

A perfect description of habituation! I am so pleased for you. And it's great that you were able to accomplish it on your own.

 

I am sure that you (and likely many others) are tired of hearing me talk about TRT. I am sure it really gets old. But since this is a Shatner thread, and he did TRT, I feel I want to say just one time how old it gets - for me - hearing about the woes of "painfully reactive tinnitus" from folks who won't do anything about it.

There. I'm finished venting. Carry on.

 

Well, I just so happen to have a good friend who had T that turned out to be caused by a brain tumor. He had surgery to have it removed which made him lose all hearing in his ear.... All but the sound of screaming loud tinnitus that is. He can't even really mask because how do you mask when you're deaf in that ear? Anyway, he said it drove him crazy for a few years. But now, he lives a perfectly normal life. In fact, he went on to and finished med school. He loves his work and is one of the most at peace people I know.

He did tell me that it still bugs him at times, but he certainly does not let his affliction rule his life.

Also I have another good friend who has had tinnitus since middle school. His was most likely caused by chronic ear infections and needing multiple surgeries which left him half deaf in one ear, he no longer has an ear drum, and he has tinnitus. And he too lives a perfectly full life. In fact he said he hadn't thought of his tinnitus for years until I got mine and started complaining about it. Honestly, I didn't know either of my friends had it until I started complaining and after hearing what they went through, I felt pretty lame complaining about mine.

So yes, someone can be at least half deaf, have tinnitus, and still live life and enjoy it.

 

@MattK , you know, I am really happy for your friends that they can manage to experience a perfectly normal life. Even though they suffered for a few years prior.

You see, I'm one of those that cannot sleep in a room with one of those ticking clocks. It drove me nuts. Also, I cannot study with music on or the Tv. I need silence to concentrate. I used to meditate in silence or sounds of nature. Moreover, I enjoyed hearing my own voice when reading.

Now being half deaf on one ear, which is already pretty bad, the T-noise is killing it. Not only is it extreme loud, annoying and painful but it is reactive. Ultra reactive! I know yours is not. You said it once. But you did experience spikes or increase in loudness, right? Usually people call this a bad T day. Now imagine you have that bad T day everyday. Every little ambient sound makes your T not only explode but dwelling on that extreme level for hours to come. If you ask me, it feels kinda like war. Bombs go off everywhere. Some times I wonder if I turned up the stereo that loud the windows would explode. Heck, everything made of glass would explode!

When I converse, hearing my own voice or those from others, my T get so loud I can hardly hear anymore (left ear), and I have a very hard time to even hear with my right ear 'cause T get so loud it feels like it's on both ears. This is near insanity.
Now people with 'normal' T tell me I will get used to it. If they can do it, so can I they say. I know they mean it in a good way. They want to encourage me. But honestly, if my T -- the reactivity and loudness -- is not changing soon there is next to no sense in carry on and call this life.

I am rather be off than dwell in purgatory. I am still young.. so this would be long hard road of agony.

 

Thanks, but I don't want to give the wrong impression. They don't live perfectly normal lives with their T. As I've said about the one who had brain cancer, he said it still gets to him. What I said was that they don't let their afflictions rule their life. This does not mean that they don't have bad days. For example, the one who is deaf in the ear with tinnitus has a hard time in social events where there is a lot of people who try to talk to him at once or from different angles. He also has a hard time with noise in general, because as he says, it's too much noise in one ear.

So no, it's not perfectly normal, but he is doing well overall considering the circumstances. I mean, he graduated med school, is working full time, he since got married and had a kid. And he still goes 4-wheeling on the weekends. But certainly things could be better. Of course he'd rather have his hearing back with no T, but that's simply not an option.

And I only bring this up because you said that perhaps only someone who is deaf and has tinnitus may have it worse than you do, and I am bringing him up in hopes that his story will help encourage you, not discourage you. When I was at the height of my worries, what helped me a lot was knowing other people had it, but yet, lived life to the fullest still.

This is true, my T is not reactive. I've definitely never said that mine couldn't be worse, it sure could be. I used to think mine was reactive to white noise, but what I think actually was happening is that my T is very high pitched. And white noise sounds couldn't mask it and it made it stand out more, but I think that was due to frequency, not reactivity.

You're also correct in that I had a bad spike, and yes, I was miserable. But, I never gave up. I knew I had to habituate (which thankfully it got better and the spike was due to allergies). Assuming that my spike wasn't a spike, but a new normal, I would keep an open mind about habituation protocols, like TRT (assuming of course I didn't habituate naturally). Because as of today, there is no universal cure, so habituation is really the only game in town for most of us. One day, when that cure comes, I'll gladly shut my mouth about habituation, but until then, people need to know that there is hope. There is hope for you too. After all, you've made it this far. Something's kept you going, and I know it's not a cure, because there isn't one.

 

The point you are wanting to make is in my view, unfair. You have no knowledge of what people have had to endure in terms of hardships in their lives.

I have read the stories of many "sufferers" on this site and many have/had lives that are NOT perfect (e.g. loss of a child, battling cancer, losing a spouse, losing a parent).

I lost a nephew, his beautiful wife and baby girl to a drunk driver, my dear mother died unexpectedly, as well as losing another nephew to a brain aneurism ....all prior to acquiring the "Tinnitus Beast". These experiences did not give me any measure of defense to deal with the onset of Tinnitus and I suffered greatly. I am doing better as the T
has lowered, I have received CBT, taken medications, and received good support from this site.

 

Teri, this sort of thing happens when one is more concerned with making those points than with getting better. Suffering from tinnitus is too much a part of who he his, hence his chosen nick. He wears his suffering like some sort of badge. It is why I stated in my response #125 that this is a battle I will not fight, and it is why I have since put him on Ignore. Show me a person with the nick "GonnaBeatTinnitus" - and that is a person I can help. It is a person we all can help.

The answer for each of us lies within, but you have to be willing to look to find it.

 

the problem with TRT is that the ones who say it is effective, have tinnitus and will never hear silence again. Therefore they have forgotten the joy and peace that true silence can bring you. They cant compare what TRT does, to what true silence would do if it existed. Therefore their exaggerated praise for TRT is likely just sour grapes.

 

That is just not true.
My friend did TRT and has found his life back again. Of course he would prefer to not have T but at least he has been able to take some action and get control back in his life. Therefore he has gone back to work and has a full life again. Is it perfect? I doubt it but at least he isnt suicidal as he was before nor is he laying in bed all day unable to continue with his life. He tells me that his T has gone from a 10 to a 2 or 3 and he no longer needs maskers at night to sleep. Do you consider this to be a bad thing? Or do you think that this result is a good thing? He has only been using the WNG's and doing TRT for some months. Further I find his success gives me hope for the future. One thing I do know is that one has to rid the stress as this makes it much much worse.............@Dr. Nagler please can you explain why (bad) stress is bad for the T - why does this happen - why does (bad) stress feed the T and make it worse or louder? How does this happen and why is it that stress was handled well before T and post T not handled well at all...........Thanks ever so for your expertise.....always appreciated.

 

@Dr. Nagler please can you see my post above which included a little question to you. The reason I have posted this below it is because the @ sign with your name after it doesn't seem to have worked so therefore I have reposted your name so that you would see the alert. Sorry and tying not to be a fusspot but would really love a reply to my question as I try to understand this thing. Thank you so much.

 

I do not understand. I wrote: "The answer for each of us lies within, but you have to be willing to look to find it." What isn't true about that statement?

Trying to rid your life of stress can itself be a very stressful challenge. Indeed, stress is part of life. Yes, when you are very stressed, your tinnitus often gets louder. But ridding your life of all stress is not the answer. Habituating your tinnitus is the answer so that if it does get louder during stressful moments, you won't care. (Of course, the real answer is the cure, but for today habituation is the answer - because we will not have a cure until tomorrow, whenever that comes.)

I do not know, sorry. It may have to do with stress lowering your threshold of awareness of your tinnitus rather than actually making your tinnitus louder. But that's just a hunch. And I have no idea what the biochemical mechanism might be.

Because intrusive tinnitus is very stressful as it is. So your stress that you handled well before tinnitus is now added stress on top of the stress from your intrusive tinnitus.

 

Sorry Dr. Nagler but there has been some confusion. The first part of my post was directed to @tinnitussufferer post

so I wrote :

After that was my post to you with the questions as they occurred to me and you have answered above.
Sorry for the confusion and thank you for the answer.