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Aegyo

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 #1 
Hello dr. Nagler,

I'm Suzy, a 35 year old mom from the Netherlands. This will be a long one, sorry ;)

Your name quickly came up through Google when I first got tinnitus and now I found your Corner. I've been meaning to post a message here for a while, but felt embarrassed, because of how my tinnitus started on October 4th, 2018.

There was a very negative news item about tinnitus (about that young Dutch mother who chose euthanasia because of tinnitus) and then there was also a newspaper article...yet again very negative. I was already struggling emotionally at the time (I've been through A LOT in a short amount of time), so I was susceptible to God knows what.

I was having quite frequent fleeting tinnitus at the time, which made me absolutely terrified of those news articles. Then, on October 4th, my 2 year old son was crying (screaming) on my lap at night. I thought of those news articles and immediately felt panic.

After my son went to sleep, I went on my pc for a bit and for some reason the pc fan was bothering my hearing. Flashback, yet again, to those news articles. Panic attack set in, I hyperfocused on my hearing, put my fingers in my ears and heard tinnitus in my right ear. Panic, panic, panic.

Went to an ENT, had a hearing test and tympanometry, both came back normal. ENT was the usual horrible kind. Of course I went online after that and saw lots of horror stories. I quickly learned to avoid message boards like the plague. But I did see your name mentioned, Googled you and found out about TRT and read the book.

But here I am, 3 months later. Struggling so, so, so badly. I do start TRT with in ear generators on January 14th though.

The tinnitus started with only a whistle-y sound in my right ear, but now I also have a static ringing in my head ("the storm, as I call it), a buzz and a very high frequency sound (not a beep). It fluctuates immensely, both in sound and volume and is very reactive. And that causes me to feel total despair. I don't know how to habituate to something that fluctuates so severely?

My TRT specialist said it's a good sign that it fluctuates so much. Is this your experience as well?

The tinnitus reacts strongly to the TV, cooker hood, pc/laptop fan, car engine, hair dryer, etc. Quite a few sounds. That also makes sound enrichment at night difficult. I still have not been able to find a sound that goes well with the tinnitus. Any advice on that? Any apps you recommend? Am I doing something wrong? I know how important nighttime sound enrichment is in TRT, so this frustrates me. Every sound I try seems to give the tinnitus a sharp edge.

In your experience, does reactivity like this eventually come down over time?

That also instills worry in me regarding the TRT. Because white noise and pink noise from table top devices are not comfortable for my tinnitus. Is the sound in the in ear generators different? Can an audiologist tweak the sound to make it work well? I read it's more like a "shhhh" sound than actual white or pink noise?

The reason I decided to post on your Corner today is because this morning I got the diagnosis depression. That has been going on for a long time, way before the tinnitus. Losing a little one a few years ago was too much for me to handle, yet I never received mental help with that. Until now.

But as for the tinnitus, I'm starting EMDR later this month. To hopefully break or diminish that vicious cycle of fear. Do you have any experience with this? EMDR for tinnitus seems fairly new, started here in the Netherlands last year, with surprising results.

As for the depression, I don't know what to do. I'm open to antidepressants, but scared of tinnitus being a side effect. My family doctor is, so far, refusing to prescribe it to me because of that. And if I do go on medication, I don't know which one would be the best option, with tinnitus in mind? All I have at the moment is Oxazepam for the extra tough moments.

I have attached my audiogram. Just in case you notice anything specific about it that I should mention to my TRT specialist regarding the in ear generators, etc.

Apologies for the long story, dr. Nagler. I'm trying to work on my reaction and get on the right path to habituation.

The thing is, recently I feel like things are changing. I can't quite explain it though. Does that sound familiar to you? I'm still (clearly) depressed, but I don't avoid things quite so much anymore? Even now, I'm actually using my laptop to type all this to you. A month or two ago, I wouldn't have dared. But at the same time, I don't know if that is a good sign.

Thank you in advance and yet again, sorry for all my rambling 😉

Dr. Nagler

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 #2 
Quote:
Originally Posted by Aegyo
Hello dr. Nagler,

I'm Suzy, a 35 year old mom from the Netherlands. This will be a long one, sorry ;)

Hello Suzy. Welcome! And no need to apologize for the length of your post. If you don't mind, though, I'll take it in pieces.

Quote:
I've been meaning to post a message here for a while, but felt embarrassed, because of how my tinnitus started on October 4th, 2018.

There was a very negative news item about tinnitus (about that young Dutch mother who chose euthanasia because of tinnitus) and then there was also a newspaper article...yet again very negative. I was already struggling emotionally at the time (I've been through A LOT in a short amount of time), so I was susceptible to God knows what.

I was having quite frequent fleeting tinnitus at the time, which made me absolutely terrified of those news articles. Then, on October 4th, my 2 year old son was crying (screaming) on my lap at night. I thought of those news articles and immediately felt panic.

After my son went to sleep, I went on my pc for a bit and for some reason the pc fan was bothering my hearing. Flashback, yet again, to those news articles. Panic attack set in, I hyperfocused on my hearing, put my fingers in my ears and heard tinnitus in my right ear. Panic, panic, panic.

Went to an ENT, had a hearing test and tympanometry, both came back normal. ENT was the usual horrible kind. Of course I went online after that and saw lots of horror stories.

Your story is quite common. No need to feel embarrassed about it at all.

Quote:
I quickly learned to avoid message boards like the plague. But I did see your name mentioned, Googled you and found out about TRT and read the book.

My name is often associated with TRT. And I am definitely a fan of TRT when it is done correctly and for the proper indications. But I am more a fan of the concept that anybody can overcome his or her tinnitus. TRT is but one way to get from where you are to where you want to be!

Quote:
The tinnitus reacts strongly to the TV, cooker hood, pc/laptop fan, car engine, hair dryer, etc. Quite a few sounds. That also makes sound enrichment at night difficult. I still have not been able to find a sound that goes well with the tinnitus. Any advice on that? Any apps you recommend? Am I doing something wrong? I know how important nighttime sound enrichment is in TRT, so this frustrates me. Every sound I try seems to give the tinnitus a sharp edge.

What you describe is not all that unusual. As to whether or not you are doing something "wrong," that is hard to say since I am not exactly clear regarding what it is that you are doing. TRT is not a cookbook. Often the sound therapy component must be tailored a bit. Same for the counseling.

Quote:
In your experience, does reactivity like this eventually come down over time?

In my experience whether or not your tinnitus ever becomes less "reactive," you can habituate it all the same.

Quote:
That also instills worry in me regarding the TRT. Because white noise and pink noise from table top devices are not comfortable for my tinnitus. Is the sound in the in ear generators different? Can an audiologist tweak the sound to make it work well? I read it's more like a "shhhh" sound than actual white or pink noise?

You start your TRT in a few days. This is really the sort of thing you should discuss with your TRT clinician, but in general it is not the particular sound that is tweaked but rather how the sound is introduced along with the counseling. A knowledgeable and experienced TRT clinician should be able to walk you through it all without difficulty.

Quote:
The reason I decided to post on your Corner today is because this morning I got the diagnosis depression. That has been going on for a long time, way before the tinnitus. Losing a little one a few years ago was too much for me to handle, yet I never received mental help with that. Until now.

I am very sorry to hear about your depression. And I cannot begin to imagine what it must be like to lose a child. My heart goes out to you.

Quote:
But as for the tinnitus, I'm starting EMDR later this month. To hopefully break or diminish that vicious cycle of fear. Do you have any experience with this? EMDR for tinnitus seems fairly new, started here in the Netherlands last year, with surprising results.

In all honesty, I am not at all impressed with EMDR for tinnitus. I would gladly be wrong, but to me the science makes little sense to me, and the studies do not meet the threshold of reliability and verifiability. Sure, you can find anecdotal success stories - but (again, to me) making decisions based solely on anecdote is a function of desperation rather than rational thinking.

That said, when I myself was truly suffering, I made lots of decisions based on emotion rather than on logic.

Quote:
As for the depression, I don't know what to do. I'm open to antidepressants, but scared of tinnitus being a side effect. My family doctor is, so far, refusing to prescribe it to me because of that. And if I do go on medication, I don't know which one would be the best option, with tinnitus in mind? All I have at the moment is Oxazepam for the extra tough moments.

There are a gazillion drugs that can potentially aggravate tinnitus, but those changes (rare though they may be) are almost always reversible upon cessation of the drug. For some guidelines that might help in that regard, CLICK HERE.

Quote:
I have attached my audiogram. Just in case you notice anything specific about it that I should mention to my TRT specialist regarding the in ear generators, etc.

Sorry, I do not see any attachments to your post.

Quote:
Apologies for the long story, dr. Nagler. I'm trying to work on my reaction and get on the right path to habituation.

Well, in my experience it really helps to have a strategy. You are about to embark on one - TRT. Assuming that your TRT clinician is knowledgeable and experienced, I suspect that it will go well for you.

Quote:
The thing is, recently I feel like things are changing. I can't quite explain it though. Does that sound familiar to you? I'm still (clearly) depressed, but I don't avoid things quite so much anymore? Even now, I'm actually using my laptop to type all this to you. A month or two ago, I wouldn't have dared. But at the same time, I don't know if that is a good sign.

I honestly do not think of tinnitus prognosis in terms of good signs or bad signs. I generally hate clichés - but in tinnitus it is indeed a marathon, not a sprint.

Quote:
Thank you in advance and yet again, sorry for all my rambling.

Looking back on this response, I'm not sure that my comments helped a whole lot - but I will definitely keep a good thought for you.

All the best -

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
Aegyo

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 #3 
Thank you for replying, dr Nagler :)

Between writing my initial post and your reply, some things have happened that...well, I don’t know how I feel.

I burned my skin (didn’t realise the tap was still on boiling hot...ouch) and I was unaware of my tinnitus whilst I was cooling my burn. When the pain subsided, the tinnitus returned. So that gave me a taste of how the brain prioritises.

When I was doing arts & crafts with my son, the tinnitus was far in the background.

Today when we went for a tour of his new kindergarten, the tinnitus was nowhere to be found. Not very reactive the rest of the afternoon either. There were so many moments today where it left my awareness. Then it came back full force around dinnertime.

Am in bed now and it is ringing away. Sound enrichment just changes the tinnitus sound instead of soothing it.

The thing is, I took 5mg of Oxazepam this morning. So I’m now emotionally torn between “was this a sign of habituation” or was it just the Oxazepam?

I really struggle with how reactive it is to sound and how the sounds fluctuate. So even when it reacts to sound, it is merely my perception that the volume goes up?

Wish I could be blissfully unaware again.
Aegyo

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 #4 
I’m using a pillow speaker with the app Sleep Pillow.
Dr. Nagler

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 #5 
Quote:
I really struggle with how reactive it is to sound and how the sounds fluctuate. So even when it reacts to sound, it is merely my perception that the volume goes up?

In tinnitus the perception is the reality. Whether it actually gets louder or you perceive that it is louder is really irrelevant.

If I may, it seems to me that you are working very hard at trying to figure out your tinnitus. But as I have come to see it, the first step to overcoming your tinnitus is when you have finally figured out that you can't figure it out at all!

You start your TRT in just a few days. I wish you well with it.

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
Aegyo

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 #6 
Yeah, because some of the sounds scare me. When it goes high pitched and reactive, I want to bring it back down.

And I’m falling apart inside because of how it is impacting my family life. My toddler and I have moved in with my parents because I’m such an anxious mess.

When I notice progress I want to believe in it and at the same time I’m terrified of doing so.

I want to let go and starve the tinnitus, but I don’t know how.
Dr. Nagler

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 #7 
You are planning to start TRT on 14 January under the supervision of a "TRT specialist," whom I presume is both knowledgeable and experienced in these matters. As you know, TRT has two components - sound therapy and TRT counseling. The TRT counseling is supposed to address precisely the types of issues that are of concern to you. Seems to me that you are asking the right questions and have gone about things purposefully and admirably. Why don't you see how your first session goes before jumping to conclusions!

All the best with it -

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
Aegyo

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Posts: 13
 #8 
Rationally, I know you're right. Emotionally, I'm stuck in fear.

Yesterday went well, then I got anxious and the tinnitus became worse. I was scared of the sound becoming sharp...and it did. My fear started it and keeps feeding it.

How do you personally break this cycle with your patients? I know my TRT specialist will advise me in this too, but I'm curious what YOU do in cases like mine.

It's very intrusive at the moment and I perceive a loud, sharp ringing. Very different from the barely there buzz I had yesterday. I barely slept.

Regarding the Oxazepam: I read that you were on Xanax? Did you take this long? Does taking medication inhibit the habituation process?

Thank you so much, dr Nagler. I know I'm a nervous wreck at the moment.
Dr. Nagler

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 #9 
Suzy, let me take your questions out of order ...

Quote:
Regarding the Oxazepam: I read that you were on Xanax?

Yes. I was on Xanax.

Quote:
Did you take this long?

I took it daily for around a year-and-a-half under my doctor's close supervision. I do not remember the exact dose, but as I recall it was enough to kill a small elephant! :-)

Quote:
Does taking medication inhibit the habituation process?

Does taking Xanax inhibit the habituation process? There is some soft theoretical evidence to suggest it might, but there are no hard data. And even if it does inhibit habituation, for sure it doesn't prevent it. I can tell you in my own case all that theory was quite irrelevant since I was in such bad shape that I am quite sure I could never have gotten through TRT in the first place without medication.

Quote:
Rationally, I know you're right. Emotionally, I'm stuck in fear.

When you are "stuck in fear," rational thinking often goes out the window. There is a very sophisticated medical term for that phenomenon. It's called NORMAL.

Quote:
Yesterday went well, then I got anxious and the tinnitus became worse. I was scared of the sound becoming sharp...and it did. My fear started it and keeps feeding it.

Right. That is rather typical.

Quote:
How do you personally break this cycle with your patients?

I have given this particular question a great deal of thought over time, especially over the past couple of years. And for me it's quite easy. I cheat! Really, I cheat.

Here's how I do it ...

First of all, I realize that while I do know a great deal about tinnitus, for sure I don't know everything. Importantly, if I do not know the answer to a question and that answer exists, I definitely know how to find it. So that helps a lot. If a patient of mine asks me a question and I do not know the answer (which happens every once in a while), I can call that patient back within 48 hours with the correct response. That process takes the pressure off me and is very reassuring to the patient. So not having to pretend I know all the answers is Cheat #1.

Second, I realize that if there is a mistake to be made in all this, then given how long I have been at it, I have likely already made that mistake. And that helps even more. So having already made every mistake in the book and not being afraid to admit it is Cheat #2.

And third, my patients actually do exactly what I tell them to do because (1) it makes perfect sense to them after I explain it in detail and answer all of their questions in a practical unambiguous fashion, (2) it is tailored to their specific needs and concerns (as opposed to the more general remarks I am restricted to on an open board such as this), and (3) they are paying me - and to be perfectly frank people tend to take advice they are paying for a lot more seriously than free advice. So whereas a tinnitus sufferer might think something I suggest on a public board is off-base or doesn't apply to them, that sort of thing simply does not happen with my patients in the clinic setting or during a telephone or Skype consultation. Then, once my patients start doing what I ask them to do, over time as I walk them through the process and tweak things as needed, they realize they are beginning to get better. Which is what helps most of all. And that is Cheat #3!

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
Aegyo

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 #10 
Thank you, dr Nagler.

I'm about to ramble. Please bare with me.

On Monday I went to the Tinnitus Clinic. First, I got the counselling part of the session. As I have read the book, it wasn't anything particularly new to me. Although from the questionaire I filled out before the consultation, the TRT specialist said that she feels my tinnitus is ongoing because of fear and stress.

And the reactivity is to sounds of similar nature, like car engine and cooker hood. So her reasoning was that I may have (sub)conciously attached a negative conditioned reflex to these type of sounds, which kicks off the reactivity.

What are your thoughts on this?

I was then fitted with my in ear generators. I'm so torn about this. I find the sound comfortable, but the tinnitus reacts to it. She said this is normal for the first month? Is this true? Because honestly, it freaks me out. On the lowest setting, I barely hear the shhhhhhhh. But it still reacts. If I set it higher, it reacts even more.

And then sh.. hit the fan when we came home.

My toddler became very, very ill. By 8PM, I was in the ER with a limp, unresponsive little boy on me. The tinnitus was raging, of course.

We are still here in the hospital, he's improving, but I'm going from panic attack to panic attack.

Then today, I had to leave my son to rush my mom to the hospital too.

I've been so stressed that I'm now worried I've made my tinnitus permanently worse, as my nonstop panic has made intrusive and angry today. Front and center of my perception.

I don't know how to break this vicious cycle.

I've taken Oxazepam...again, but of course I wonder if that will make it worse too. It's difficult to think clearly for me at the moment. I know...I'm a normal human, as you would say hehe.

I feel lost, hopeless and I thought the in ear generators would bring some relief. Instead, they bring me worry.

My GP has prescribed me Sertraline, but I haven't started taking it yet. Tinnitus being a possible side effect is one thing, but the starting up side effects are something I can't cope with at the moment.

I genuinely feel like a lost cause.
Aegyo

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 #11 
This is my audiogram, by the way.

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Dr. Nagler

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 #12 
Quote:
On Monday I went to the Tinnitus Clinic. First, I got the counselling part of the session. As I have read the book, it wasn't anything particularly new to me. Although from the questionaire I filled out before the consultation, the TRT specialist said that she feels my tinnitus is ongoing because of fear and stress.

There are a number of reasons that tinnitus can be ongoing. Fear and stress can certainly play a role.

Quote:
And the reactivity is to sounds of similar nature, like car engine and cooker hood. So her reasoning was that I may have (sub)conciously attached a negative conditioned reflex to these type of sounds, which kicks off the reactivity.

What are your thoughts on this?

Again, a reasonable explanation. 

Quote:
I was then fitted with my in ear generators. I'm so torn about this. I find the sound comfortable, but the tinnitus reacts to it. She said this is normal for the first month? Is this true? Because honestly, it freaks me out. On the lowest setting, I barely hear the shhhhhhhh. But it still reacts. If I set it higher, it reacts even more.

You should set the devices the way your TRT clinician tells you to set them, but do not set them so low that they are only barely audible. Perhaps start out wearing them just for one or two hours and eventually work your way up. Again, check with your TRT clinician on that. She knows you and your tinnitus way better than I.

Quote:
And then sh.. hit the fan when we came home.

My toddler became very, very ill. By 8PM, I was in the ER with a limp, unresponsive little boy on me. The tinnitus was raging, of course.

We are still here in the hospital, he's improving, but I'm going from panic attack to panic attack.

Then today, I had to leave my son to rush my mom to the hospital too.

I've been so stressed that I'm now worried I've made my tinnitus permanently worse, as my nonstop panic has made intrusive and angry today. Front and center of my perception.

I am very sorry to hear that you are going through a rough patch with family illness. But as far as your tinnitus goes, while stress can certainly aggravate it, stress cannot make it permanently worse.

Quote:
I don't know how to break this vicious cycle.

I've taken Oxazepam...again, but of course I wonder if that will make it worse too. It's difficult to think clearly for me at the moment. I know...I'm a normal human, as you would say hehe.

I feel lost, hopeless and I thought the in ear generators would bring some relief. Instead, they bring me worry.

My GP has prescribed me Sertraline, but I haven't started taking it yet. Tinnitus being a possible side effect is one thing, but the starting up side effects are something I can't cope with at the moment.

I genuinely feel like a lost cause.

You might feel like a lost cause, but you are not a lost cause at all. What is happening is that you are reasoning emotionally instead of reasoning rationally. As to what to do - judging by what you have been saying, I believe that you need more help than you can get from a site like this or from an article or from a book. But with the proper help there is no question in my mind that you can get better. When is your next session with your TRT clinician?

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
Aegyo

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Posts: 13
 #13 
Dr. Nagler, may I ask you something? How did you notice your brain was starting to habituate?

I was on Skype with my best friend and my tinnitus was fading into the background as we were talking. Straight afterwards, my husband and son and I sat on our bed playing and I noticed I couldn’t hear my tinnitus. But as soon as I was on my own, there it was again.

It frustrates me that I can’t hold on to these kind of moments for long. Makes me feel weak and like a failure that I can’t keep the tinnitus in the background.

The tinnitus sounds also change on a daily basis or whatever sound it reacts to. It’s bloody difficult habituating to something that changes all the freaking time.

In my case, I genuinely wonder if it’s purely psychosomatic because of all the severe stress. I feared it, therefore I hear it. Same with the reactivity, I do think it reacts because I (sub)conciously react.

How do I make that switch in my head to not give a rat’s arse so my brain can tune it out? Because I’m clearly capable of doing that short term.

I’m getting more help, by the way. My family doctor has arranged for extra care at home and I’m on Oxazepam and I started Mirtazipine two days ago. I didn’t feel comfortable with Zoloft because of the possible ototoxicity, so I emailed dr Hubbard and he suggested Mirtazipine and my family doctor agreed.

Aegyo

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 #14 
Oh and I wear the WNG’s all day, regardless of what the tinnitus does :) They feel like a crutch now after a week...I actually fear taking them out at night.
Dr. Nagler

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 #15 
Quote:
Dr. Nagler, may I ask you something? How did you notice your brain was starting to habituate?

I don't think I noticed that I was starting to habituate. What I noticed was that I was feeling better.

Quote:
How do I make that switch in my head to not give a rat’s arse so my brain can tune it out?

You don't make it happen at all. It happens on its own. In fact, the harder you try to make it happen, the more elusive it becomes!

All the best -

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
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Dr. Nagler's Tinnitus Corner is provided for education and information only. It is not intended for the purpose of providing medical care and should in no way substitute for appropriate in-person consultations with qualified healthcare professionals. By using this site, participants agree to hold Dr. Nagler and Atlanta Tinnitus Consultants, LLC harmless with respect to any loss, injury, claim, liability, or damage arising from following the postings herein.