Rollercoaster Ride

[kevin b]

so true what all the vets so about this journe being full of setbacks. I went and got HAs with maskers built in yesterday, alittle weird at first but within an hour I am back at work and did not focus on it most of the day and into the night. I even joked with my daughter and let her try them on. One mistake I probably made is I didn't take my usual Klonopin- tried to tough it out and had a shitty sleep. Wake up today, exercise, had my shake and look forward to the day. All day my anxiety just keeps ramping up until I give up at 4pm. take the HA out and take a Klonopin! I actually almost stupidly posted last night what great progress I made and felt I turned the corner. Hopefully two steps forward and only one step back, I will for sure take my Klonopin for sleep tonite, I underestimated the beast!

 

[cullenbohannon]

One thing I noticed helps me is when I'm having negative thoughts or a bad day I don't post about it because I dwell on it more and when I do its almost like it becomes to real. I try and have a short term memory with that stuff. It's easier to forget when I don't post it. Of course this is a support forum so I encourage you to post when your feeling down and need support. Just a technique that helped me. Better days to come also having those moments where your full of confidence is a good step forward. Good luckk!

so true what all the vets so about this journe being full of setbacks. I went and got HAs with maskers built in yesterday, alittle weird at first but within an hour I am back at work and did not focus on it most of the day and into the night. I even joked with my daughter and let her try them on. One mistake I probably made is I didn't take my usual Klonopin- tried to tough it out and had a shitty sleep. Wake up today, exercise, had my shake and look forward to the day. All day my anxiety just keeps ramping up until I give up at 4pm. take the HA out and take a Klonopin! I actually almost stupidly posted last night what great progress I made and felt I turned the corner. Hopefully two steps forward and only one step back, I will for sure take my Klonopin for sleep tonite, I underestimated the beast!

 

[Dr. Nagler]

One thing I noticed helps me is when I'm having negative thoughts or a bad day I don't post about it because I dwell on it more and when I do its almost like it becomes to real. I try and have a short term memory with that stuff. It's easier to forget when I don't post it. Of course this is a support forum so I encourage you to post when your feeling down and need support. Just a technique that helped me. Better days to come also having those moments where your full of confidence is a good step forward. Good luckk!

It's sort of a two-edged sword, though.

Why? Because newbies come along often merely looking for information. And when they read about all the negative thoughts, they are quite apt to think that it's par for the course for the average person with tinnitus. But it's not - it's only par for the course for the folks who are so severely impacted by their tinnitus that they feel the need to seek out a support site and pour out their souls!

Some authorities refer to this phenomenon as "negative counseling."

Stephen Nagler

 

[cullenbohannon]

It definitely set me back a few times when I would see the very depressed posts and for a while I did think I'm gonna end up that way and never get better. But then I came
to that realization thatthey were extreme cases as well, with the guidance of many on this site.

It's sort of a two-edged sword, though.

Why? Because newbies come along often merely looking for information. And when they read about all the negative thoughts, they are quite apt to think that it's par for the course for the average person with tinnitus. But it's not - it's only par for the course for the folks who are so severely impacted by their tinnitus that they feel the need to seek out a support site and pour out their souls!

Some authorities refer to this phenomenon as "negative counseling."

Stephen Nagler

 

[Mpt]

Dr. Nagler.... Do you really only hear your tinnitus a few times per day, and how do you sleep... I'm assuming with noise, but how well are you able to sleep, and this far into habituation do you require melatonin or medications to sleep?

 

[Isabella 123]

Actually it often helps me to read posts about bad days because usually they are followed by posts from others who say yeah that happened to me but a few days later it got better, or other such encouraging news. That helps me realize yet again that it goes up but comes down, or it gets worse but then better. Or I learn about what not to do or think. So I find posts that might seem negative to sometimes be helpful. Also if we can't come here to tell our stories and be comforted, what's the point of having a support forum. If you're doing well, you don't need support.

So, Kevin b, thanks for sharing and remember not to try to take too many big steps forward at once. I have done that too, I had a really quiet day and decided not to take my klonopin that night, and I paid dearly the next day.

Keep us updated on how the masking HAs are going, I'm thinking of getting some but for me it would be a very big expense so I'd like to know how they work out for you and others. Hang in there...

Btw had eye surgery today so this post may be full of typos, I can barely see.

 

[Dr. Nagler]

Actually it often helps me to read posts about bad days because usually they are followed by posts from others who say yeah that happened to me but a few days later it got better, or other such encouraging news. That helps me realize yet again that it goes up but comes down, or it gets worse but then better. Or I learn about what not to do or think. So I find posts that might seem negative to sometimes be helpful. Also if we can't come here to tell our stories and be comforted, what's the point of having a support forum. If you're doing well, you don't need support.

I'm sure that's true, @Isabella 123.

I only point out that it's a two edged sword. I cannot tell you how many patients I have seen over the years who were doing just fine until they read this, that, or the other thing on a support board ... where the only reason they showed up on that site in the first place was for information.

Stephen Nagler

 

[Dr. Nagler]

Dr. Nagler.... Do you really only hear your tinnitus a few times per day, and how do you sleep... I'm assuming with noise, but how well are you able to sleep, and this far into habituation do you require melatonin or medications to sleep?

My tinnitus is incredibly loud. As I have stated before, it sounds like a cross between a screaming teakettle and a roaring jet turbine. I can readily hear it while riding in the Maid of the Mist boat at the foot of Niagara Falls.

That said, my brain classifies my tinnitus as a neutral stimulus. It didn't use to - not by a long shot. But it does now.

And since my brain classifies my tinnitus as a neutral stimulus, I am only rarely aware of it ... unless I purposely check. So, no. I sleep just fine. No melatonin, no medication, no noise in the room. I just get into bed, kiss my wife goodnight (our 30th anniversary was this past Monday!), put my head on the pillow, and fall asleep. Just like before tinnitus.

Stephen Nagler

 

[kevin b]

Thanks I sabella, I agree, I like to come on to,post, it makes me feel better and I look forward to getting feedback that can help me move forward. I have been told you have to be patient with thE HA to give your brain time to adjust to them. my audio said in one week we should know if we are going in the right direction. I guess I was hoping for a miracle yesterday and I had such a good day I thought it would spillover to today, oh well I need to be happy with the good days and stop focusing on the negatives. Hope you eyes feel better

 

[cullenbohannon]

Kevin I hope it didn't sound like I was trying to dissuade you from posting. Just giving a suggestion. If it makes you feel better then it's prob a good idea. Good luck!

Thanks I sabella, I agree, I like to come on to,post, it makes me feel better and I look forward to getting feedback that can help me move forward. I have been told you have to be patient with thE HA to give your brain time to adjust to them. my audio said in one week we should know if we are going in the right direction. I guess I was hoping for a miracle yesterday and I had such a good day I thought it would spillover to today, oh well I need to be happy with the good days and stop focusing on the negatives. Hope you eyes feel better

 

[kevin b]

Not at all, what makes this forum work is what works for you and everyone is different. I am sure a lot of people come on here and don't post at all, good or bad, whatever works. I have been one to keep things to myself but now I feel I need to vent and get support from people who know what I am going thru. I do hope some day to not post bad but only good stories and I pray I will be in a position to help others struggling, that would mean I came full circle

 

[Dr. Nagler]

I am not suggesting that people cease unloading on this board. It's a support board. That's one of the things folks do on support boards - when things are bad for them, they seek support!!!!

All I am saying is that it's a two-edged sword.

Stephen Nagler

 

[here2help]

kevin b, I sympathize with your frustration over the ups and downs of tinnitus, and I understand why you feel you "underestimated the beast." At the same time, I hope you won't underestimate yourself. Try not to let a setback or a bad day, or a number of bad days, cause you to sell yourself short or to dismiss the very real progress you are making.

Joking with your daughter, choosing not to take klonopin, toughing it out when it was feasible to do so, exercising, and looking forward to your day, were as real and meaningful and true as anything you feel when tinnitus gets to you. It wouldn't have been "stupid" to post about your progress, and I'm glad you alluded to it in your post because it is just as valid as your disappointment in having a setback.


Mpt, when people habituate tinnitus it isn't unusual for them to be largely unaware of their tinnitus, with exceptions here and there. I was briefly aware of mine this morning. I noticed how loud it was. That awareness lasted for about as long as it took me to write the previous sentence. I am sure it was still just as loud, but I was no longer aware of it and didn't give it another thought.

Some people who have a very difficult time with tinnitus claim that they do so because it is loud. I believe them. They are being honest when they say if their tinnitus was less loud, it wouldn't affect them so badly. But I also believe loudness only partially explains why some of us have a very hard time. I am not unusual in my response to my own tinnitus, and as I wrote above, I noticed how loud mine was this morning. In a moment, however, my attention landed on something else and I haven't been aware of tinnitus since then regardless of what it has been doing.

here2help

 

[Magpie]

Kevin b wrote:
so true what all the vets so about this journe being full of setbacks. I went and got HAs with maskers built in yesterday, alittle weird at first but within an hour I am back at work and did not focus on it most of the day and into the night. I even joked with my daughter and let her try them on. One mistake I probably made is I didn't take my usual Klonopin- tried to tough it out and had a shitty sleep. Wake up today, exercise, had my shake and look forward to the day. All day my anxiety just keeps ramping up until I give up at 4pm. take the HA out and take a Klonopin! I actually almost stupidly posted last night what great progress I made and felt I turned the corner. Hopefully two steps forward and only one step back, I will for sure take my Klonopin for sleep tonite, I underestimated the beast!

AFAIC it's a journey and you might be fortunate and get off the merry go round at some point and be totally unaware of your tinnitus unless you purposefully listen for it. This is a concept that has always puzzled me if I'm perfectly honest. My experience is that I hear it now as I did in the beginning. I have occasional periods where I am unaware of it and this is purely because my mind is focussed on something that is very interesting or stimulating and tinnitus takes a back seat. The only thing that has changed aside from my hyperacusis largely resolving itself is that I don't react, there is no stress, anger, anxiety, bad feelings about my tinnitus. Sure it bugs occasionally and I wish I never had it but it's not going away so I had to accept it. I'm in awe of those who say they reached the top of the habituation mountain and don't hear their tinnitus unless they listen for it. This is something that some TRT practitioners claim will happen when a tinnitus person is habituated. Like I say it's something that completely escapes me. If I said I don't care about my tinnitus I don't believe that I wouldn't be aware of it unless I listened for it. And I sleep fine and when I listen to music it has nothing to do with tinnitus. Anyway Kevin like I say it's a journey and you are making good progress so don't be hard on yourself.

 

[Dr. Nagler]

I'm in awe of those who say they reached the top of the habituation mountain and don't hear their tinnitus unless they listen for it. This is something that some TRT practitioners claim will happen when a tinnitus person is habituated.

I have never in my life encountered a person with severe intrusive tinnitus who habituated to the extent that he or she was never aware of his or her tinnitus unless purposely seeking it.

Some TRT clinicians might describe that state as the ultimate in habituation by way of illustration, but I know of only one who suggests that it is actually achievable - and as far as I'm concerned he is pretty clueless in that regard.

Stephen Nagler

 

[Martin69]

My tinnitus is incredibly loud. As I have stated before, it sounds like a cross between a screaming teakettle and a roaring jet turbine. I can readily hear it while riding in the Maid of the Mist boat at the foot of Niagara Falls.

That said, my brain classifies my tinnitus as a neutral stimulus. It didn't use to - not by a long shot. But it does now.

And since my brain classifies my tinnitus as a neutral stimulus, I am only rarely aware of it ... unless I purposely check. So, no. I sleep just fine. No melatonin, no medication, no noise in the room. I just get into bed, kiss my wife goodnight (our 30th anniversary was this past Monday!), put my head on the pillow, and fall asleep. Just like before tinnitus.

I have never in my life encountered a person with severe intrusive tinnitus who habituated to the extent that he or she was never aware of his or her tinnitus unless purposely seeking it.
Stephen Nagler

Aren't these contrary statements? But could be because of my English which is not so good.
Or does it mean that you (who obviously has severe intrusive tinnitus) are only RARELY aware of it. But there is no one who reach the point being NEVER aware of it? I wouldn't care if only rarely or never. Mine is ultra high pitched and I can only not hear it in the shower. Although if I would really concentrate on it, I would also hear it there, too.

I really cannot believe getting used to it. But read so many success stories that I have the opinion it can be possible. I am working hard towards it.

 

[Dr. Nagler]

I see no contradiction in my statement. I can hear my tinnitus any time I purposely listen for it, and on occasion (maybe two or three times a day) I am briefly aware of it when I do not purposely listen for it.

I know of nobody who has had severe intrusive tinnitus who has habituated to the extent that he or she is never aware of it unless purposely seeking it.

@Martin69, I am interested in something else you said in your post. You said that you are "working hard" at succeeding. What is it exactly that you are doing in that regard?

Stephen Nagler

 

[Martin69]

@Martin69, I am interested in something else you said in your post. You said that you are "working hard" at succeeding. What is it exactly that you are doing in that regard?

Stephen Nagler

Sure. What I do is:

- Reading and working every day with Henry/Wilson book
- Also reading presentations and books by German authors
- Telling me every day, it is just a sound my brain generates. I will get used to it.
- Reading success stories every day.
- Reducing stress as much as possible
- And most important: Do everything I would also do without T.
For example just came from circus (project of my son's school). It was crazy loud, but I went there and also didn't protect my ears. I forgot my T for two hours and it is even quieter than before.
(my T is not noise-induced, but caused by burnout/stress.
- What I haven't done yet (as you suggested in another post) is voluntary work. On the other side I am looking after 27 young kids in our soccer club and give them training. I don't get money for this. So maybe this counts, too.

If there is more I could do, please let me know.
Unfortunately I cannot fly to Atlanta doing TRT in your clinic.

Bet regards, Martin

 

[Dr. Nagler]

@Martin69 -

My only thought about reading your exhaustive list is that perhaps you are working too hard at it. That's why I asked what you meant by "working hard."

It seems to me that you are largely consumed with this project.

My suggestion would be for you to identify and slowly over time address the barriers to your habituation so that it can happen naturally rather than trying to make it happen.

And, if I may, allow me to turn to the last sentence in your post, since to the best of my knowledge it's the first time that subject has come up on this board. I am 65 years old and consider myself to be retired. I spend most of my time involved with music (after all, I am a stringplayer!), engaged in various photography projects, traveling with my wife, reading, drinking fine wines (and some not-so-fine wines!), riding my bike, and posting on a couple of tinnitus boards where I can hopefully help others who now suffer as I once suffered. Please let's focus on that. Thank you.

Best regards -

Stephen Nagler

 

[Martin69]

Hi Stephen.
I expected this answer.
You could be right that I am obsessed of my T.
I really don't know. But I could imagine it was the same for you in your first months.
For me it is a distraction staying here in the forums.
And I allow myself only one or two hours a day being occupied with my T.
Maybe still too much.
I am open for any more suggestions.
Best regards from Germany.

 

[Dr. Nagler]

Hi Stephen.
I expected this answer.
You could be right that I am obsessed of my T.
I really don't know. But I could imagine it was the same for you in your first months.

I did not say you are obsessed with your tinnitus. What I said was that it seems you are trying too hard to habituate it. It's like trying to fall asleep or trying to maintain an erection. Sometimes trying can be self-defeating.

And sure it was like that for me at the beginning. But then again, at the beginning there was nobody offering me the kinds of crazy analogies I am offering you (analogies that you are not likely to forget so soon!) and telling me that my strategy of trying so hard can be counterproductive.

Stephen Nagler

 

[jazz]

@Martin69

Dr. Nagler is right. Trying too hard may be self-defeating. Perhaps, you could practice refocusing your thoughts on things other than your tinnitus. That's what I do. Whenever my tinnitus interrupts my day, I acknowledge it then I refocus on other activities. Letting go and refocusing is difficult and takes time. You have to practice and be patient. But success will come. It took me nearly five months before I gained competency at refocusing. And I still struggle if I'm having a bad day. But I no longer dwell on my tinnitus or my progress towards habituation. I just live my life, which nowadays is typically quiet.

 

[kevin b]

its so hard, last night I actually had a great night. watched TY, ate pizza, even fell asleep without Klonopin. But today was depressed anxious all day and by 4pm had to take a Klonopin to calm my nerves. Is this normal in the beginning?

 

[cullenbohannon]

I had and still have days like that. One minute i feel like im past it and cant understand why it bothered me, the next i need to take a xanax. Its a process and its good news that your having good days. I think you're taking steps in the right direction.

its so hard, last night I actually had a great night. watched TY, ate pizza, even fell asleep without Klonopin. But today was depressed anxious all day and by 4pm had to take a Klonopin to calm my nerves. Is this normal in the beginning?

 

[kevin b]

thanks man I appreciate, when I feel so "normal" like last night it feels great and today I feel like shit, I guess it is a process of patience and trying to build on the good times

 

[Carlos1]

thanks man I appreciate, when I feel so "normal" like last night it feels great and today I feel like shit, I guess it is a process of patience and trying to build on the good times

Kevin your already having good days which is a great sign keep doing what your doing man it's a slow process just know that good days will follow the bad ones ....stay strong