My Tinnitus Has Changed ...

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#31
Muscle tension from hunching over your PC in forum discussions and debating? A DMD I went to yesterday Rx'd me Baclofen (muscle relaxer) which I'll start after reading it over. Also I picked up a bottle of Hearing Rescue the other day that has Vinpocetine in it. I keep reading some have obtained relief. Hope you get relief soon!
 
#32
Dr nagler ! You're a hero here. A hero can be a simple human with extraordinary courage. You are it. I wish you a speedy recovery.I'm sure everything will be better for you. All my prayers are with you.Give yourself time and believe in you!
 
#33
@Dr. Nagler hope everything will be fine soon.
Its dumb question but ... have you attempted or done any diagnostics on the cause of your T ? [any time recently ]
 
#34
I am sorry to hear this Dr nagler I am currently going through the same thing,I'm sure given time it will settle back down,been doing so well I guess we can't be strong all the time,you have my best wishes and prayers.
All the best
 
#35
I will make sure to have you in my prayers @Dr. Nagler . You have given many people on this board amazing amounts of strength (especially me!). It is our turn to help you through this hopefully temporary rough patch!

Wishing you all the best my friend. I look forward to hearing how this application of TRT will help you this time around.
 
#36
Jay M said:
Muscle tension from hunching over your PC in forum discussions and debating? A DMD I went to yesterday Rx'd me Baclofen (muscle relaxer) which I'll start after reading it over. Also I picked up a bottle of Hearing Rescue the other day that has Vinpocetine in it. I keep reading some have obtained relief. Hope you get relief soon!
Click to expand...

I recently saw a TMJ clinician and we talked about how posture and neck strain can cause exasperation in a persons T. Mine is like that, and is usually a lot louder in the morning after a long sleep. Usually after some yoga and stretching, it simmers back down.
 
#37
Hi Dr Nagler,
You may remember that I asked you about my T increasing in apparent volume after ear vacuuming. I would say that exacerbation took several (4-5?) weeks to settle back to normal levels (normal levels means hearing it easily over most everyday noise) Sometimes occasionally now I can't even hear it even if I listen for it...

20 years ago you went from silence to loud tinnitus and went through the "mill" then to emerge all OK - this time you know you have the experience, strength, knowledge and resilience to do whatever is needed to reach an accord with this new T - and habituate to it again - if it doesn't settle back. Good luck - but I am thinking you won't need it.
 
#38
Dr. Nagler said:
Well, that's all changed. For the past ten days my tinnitus has made a quantum leap in loudness. It is louder - markedly louder - than it has ever been in my life. I cannot identify any reason for the change, but for me this is a whole new world of noise. I have kept thinking that it will settle back down to its normal turbine/teakettle level, but that has not happened.stephen nagler
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Well that sucks doc. Hoping and praying for a quick resolution to your spike.
 
#39
Wishing you a fast habituation @Dr Nagler
And thanking you for all the support and energy you put on this forum..

You did it once you will do it again !!!!

Take care !
 
#40
Dr. Nagler said:
Hi All -

As many of you know I have had tinnitus for more than twenty years now. To spare you the details, I'll simply attach my story to the bottom of this post.

Anyway, I did TRT in 1994-1995 and since completing TRT I have been doing really well. My tinnitus has remained as loud as ever - like a cross between a thunderous jet turbine and a screaming teakettkle - but I no longer react to it. And thus - while it can occasionally and unpredictably distract me - it causes me little, if any, distress.

I have often referred to the fact that the only thing that makes my tinnitus significantly louder is the spices in Thai food. But since I love Thai food, I eat it every once in a while and for the next day or so "pay the price" in terms of an increase in loudness. Again, since I do not react to it, the fact that it is louder for the next day does not really affect me.

Well, that's all changed. For the past ten days my tinnitus has made a quantum leap in loudness. It is louder - markedly louder - than it has ever been in my life. I cannot identify any reason for the change, but for me this is a whole new world of noise. I have kept thinking that it will settle back down to its normal turbine/teakettle level, but that has not happened.

We TRT clinicians tell our patients that if they get an exacerbation of their tinnitus at some point after finishing TRT - as can happen in maybe 10% of cases - that they should take their devices out of their dresser (or wherever they have stored them) and start using them again exactly as originally instructed. We say that TRT is like "relearning how to ride a bike" - far easier and quicker the second time around - and within a couple of weeks they should be fine again.

Well, I am about to find out if that's true or not first hand. An hour or so ago I inserted a pair of GHI Tranquil Simplicity I OTE devices (my old Viennatones are sort of relics from the stone age). I haven't used sound therapy since finishing TRT in 1995, but I'm sure using it now. We'll see how it goes.

I'll let you know.

stephen nagler
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Give trobalt a go. It's certainly lowered mine to an acceptable level, can't hear it while going out and while the tv is on. so it's a 1-2 now, before it was an 8-10! So massive reduction right there.
 
#42
You have spent countless of voluntary hours helping the poor victims of T, Dr. Nagler, while carrying a severe version of T yourself - always keeping the morale amongst the troops high.

You don't deserve this. I hate destiny and God. There is no justice in the world.

Best of luck from Denmark.
 
#43
Mal said:
You have spent countless of voluntary hours helping the poor victims of T, Dr. Nagler, while carrying a severe version of T yourself - always keeping the morale amongst the troops high.
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I sincerely appreciate everybody's kind words and suggestions.

I used to think my tinnitus couldn't possibly get any louder - but this is a whole new animal. It has really knocked the wind out of me. I feel that I am doing reasonably well under the circumstances and hope to be back fully participating here within a few days.

stephen nagler
 
#44
Dr. Nagler said:
I sincerely appreciate everybody's kind words and suggestions.

I used to think my tinnitus couldn't possibly get any louder - but this is a whole new animal. It has really knocked the wind out of me. I feel that I am doing reasonably well under the circumstances and hope to be back fully participating here within a few days.

stephen nagler
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Its probably just your perception of it louder.
But if by some off chance its really louder, you can rest assured that tinnitus loudness has little relevance on habituation.
It is all in your reaction my friend.
 
#45
stelar said:
Its probably just your perception of it louder. But if by some off chance its really louder ...
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In tinnitus the perception is the reality. And it's really got my attention.

you can rest assured that tinnitus loudness has little relevance on habituation.
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I actually think it does. In general, louder tinnitus is likely more difficult to habituate than softer tinnitus. That's not true in TRT, but in my opinion it's true in general.

It is all in your reaction my friend.
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I fully agree with you. But when you're right smack in the middle of it, that concept is a little hard to swallow.

stephen nagler
 
#46
Dr. Nagler said:
In tinnitus the perception is the reality. And it's really got my attention.


I actually think it does. In general, louder tinnitus is likely more difficult to habituate than softer tinnitus. That's not true in TRT, but in my opinion it's true in general.


I fully agree with you. But when you're right smack in the middle of it, that concept is a little hard to swallow.

stephen nagler
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Unfortunately, Dr. Nagler, I think he was being sarcastic or mocking you. A little harsh to kick someone while he's down, @stelar.
 
#47
I wish you all the best. I have had tinnitus for 3 months, and this forum has given some great advice and support, and your time is appreciated. Best wishes.
 
#49
Dr. Nagler said:
In tinnitus the perception is the reality. And it's really got my attention.


I actually think it does. In general, louder tinnitus is likely more difficult to habituate than softer tinnitus. That's not true in TRT, but in my opinion it's true in general.


I fully agree with you. But when you're right smack in the middle of it, that concept is a little hard to swallow.

stephen nagler
Click to expand...
Hope you recover soon .
Where you exposed to loud noise ? Movies , loud bar etc ?
 
#50
Dr. Nagler said:
In tinnitus the perception is the reality. And it's really got my attention.

I actually think it does. In general, louder tinnitus is likely more difficult to habituate than softer tinnitus. That's not true in TRT, but in my opinion it's true in general.

I fully agree with you. But when you're right smack in the middle of it, that concept is a little hard to swallow.

stephen nagler
Click to expand...
Hopefully, things settle down again. No one deserves this.
We had some discussions in the past and it was not always fun - in particular when I suffer with multiple > 15 kHz sounds oscillating in my head. On mild days, I would take that T forever. On loud bad days it is just surviving.
I really hope that things will improve for you. And for the rest of us that someone will find a cure (for example that one pharma company jumps onto the Retigabin train), the noise will lower or we will habituate.
 
#52
Dr. Nagler said:
But when you're right smack in the middle of it, that concept is a little hard to swallow.
Click to expand...
Dr. Nagler, I feel so sorry that this has happened to you and saddened too. I mean if this has happened to you then what hope is out there for the rest of us? This sorrow for your new condition is a genuine heart felt comment to you! I would not wish this on my worst enemy!
Maybe your T was mild before? Maybe you thought it was loud as you didnt know the difference until now?

However I am confused because for months now I have read your posts saying that the loudness makes no difference.....that it is only in the reaction. Therefore now saying that reaction is a difficult concept to stomach when smack in the middle of loud intrusive T only serves to confirm what the other posters were trying to say to you, that when it is loud it is practically impossible to habituate to or to live with. Something which you strenuously denied on many occasions. Now I am left confused as I did trust what you said and believed that it would get better in time......and now I feel like the rug has been pulled out from under my feet! I wonder how many others feel like this too? I mean if you are finding it difficult to cope then what chance do I have?

You also told me and others that to improve the T then to go and find someone worse off than you in the community (I dont think there is anybody worse off than me in the community here LOL), for example delivering meals on wheels, and not only to deliver the meals but to go inside and spend time with each recipient of the meal. This was a way to relieve the T or the awareness of the T. Would you suggest this for yourself now or do you find the loudness of your T causes you to want to hibernate indoors? As you can see for yourself loudness matters so much.
You are fortunate in that you have the white noise generators to hand to be able to start to use immediately plus your experience with TRT .....is this possible Dr. Nagler, to self administer TRT or do you need another therapist to administer the TRT to you or would CBT be better for you?

As for me, I have a minimum wait of three months before I even get near an appointment with a specialist TRT clinic and heaven knows if they will be as good as the private but too expensive therapists that you suggest. For example, the couple in Spain to whom you suggested go see Jacqui Sheldrake in London and take in the sights and enjoy family meets. Although they greatly appreciated your advice to them, they simply cant follow it as they dont have the funds to do this. The cost involved in seeing Ms Sheldrake let alone travel to UK and accommodation and food and transport etc...this is a lot of money neigh impossible for average Jo Blogs but for pensioners on a fixed income that is not a super rich pension it becomes impossible. I trust you can understand this. So they struggle on in Spain but at least they have each other, a loving married couple.
So please Dr. Nagler would you have any suggestions for those without the funds to go to these private clinics other than delivering meals on wheels?

Dr. Nagler would you consider taking Retigabene now to see if it helps and are you willing to risk the dangers of this drug now. or even LLLT?

I so wish you well Dr. Nagler and I am filled with empathy and compassion for you and hope that you can resolve this quickly and efficiently. In fact I am looking forward to your posts telling us how you conquered this new intrusive level of T with suggestions for us cos we here on this forum need all the help and advice we can get.
In the meantime bless you and your family, be well.........
 
#53
inadmin said:
Yes. seems like stelar was offended showhow by the doctor's opinion on tinnitus loudness as he expressed it here more than once.
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You must have me confused with somebody else. I have always said that loudness matters.

Specifically I have said that loudness matters, but the primary determinant of tinnitus severity is reaction. I still feel that way. My tinnitus has been much louder these past several days than it has ever been before, and that has me both distracted and concerned. But it does not in any way have me incapacitated, which was the case back in 1994-5. So my tinnitus is louder today than in 1994-5, but it is nowhere near as severe as it was in 1994-5.

amandine said:
Dr. Nagler, I feel so sorry that this has happened to you and saddened too. I mean if this has happened to you then what hope is out there for the rest of us?
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I have had twenty great years with very loud tinnitus, having largely habituated thanks to TRT. My tinnitus has for some reason now become significantly louder, which is something I thought impossible considering how loud it was already. So I am resuming the use of broadband sound generators - something I have not done since 1995 - and I hope to habituate to this quantum change in relatively short order.

Let me say one other thing, if I may. I have for many years viewed sites like this one mostly as sources of information. And I have been critical because much of that information is in my opinion incorrect and counterproductive. While that may be true, I have over the past days come to see this board as a source of support, something I guess I was blind to before before I never really needed it. And from first-hand experience I can tell you that support makes a difference, a huge difference. So I humbly and sincerely thank you all.

stephen nagler
 
#56
Dr. Nagler said:
I have had twenty great years with very loud tinnitus, having largely habituated thanks to TRT. My tinnitus has for some reason now become significantly louder, which is something I thought impossible considering how loud it was already. So I am resuming the use of broadband sound generators - something I have not done since 1995 - and I hope to habituate to this quantum change in relatively short order.
Click to expand...

I believe you will habituate. I'm sure at the time, back when your tinnitus began in the first place, there was a point where you thought it would be impossible to habituate to it. But you did.

Do you remember I asked you a question regarding this? I asked you what would you do if your tinnitus got louder, you said you'd do TRT again. And you're true to your word (here it is: https://www.tinnitustalk.com/threads/tinnitus-the-symptom-and-habituation.4264/). I'm glad you've found support here in your time of need.

One thing I have been really thinking about lately is that the day begins and it ends. And I'm still here. Somehow, I've made it through each day, tinnitus or not. So what good does it do to dwell on it?
 
#57
Dr. Nagler, how did your tinnitus originate? Do you have severe hearing loss or is the orgin idiopathic? Also, I know it is hard at the moment, but be thankful you don't have Ménière's. How loud would you say you perceive your tinnitus to be?
 
#60
Along with everyone else, I wish you all the very best, Dr Nagler.

In my short time here I have found your rational, level-headed approach to this affliction to be a source of (relative) comfort to me and I certainly hope that it will serve you well in your current circumstance.

All the very best to you.
 
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