Dr. Nagler's Tinnitus Corner
Register Latest Topics
 
 
 


Reply
  Author   Comment  
leafedges

Member
Registered:
Posts: 9
 #1 
Hello Dr. Nagler,

I'm sorry to post here again. I'm lost, TRT recommendations I have followed have not helped me and I don't know how much longer I can go on. You might remember me from this thread - I understand if you don't, as you have a lot of people posting here. Things have escalated. My tinnitus seemed to stabilise a few weeks after I posted this - it was uncomfortable and annoying, but the sound sensitivity has decreased markedly and I was mostly able to return to my normal life, after some adjustments. I lost the headphones with the blaring music, started using hearing protection in places that were loud enough that I'd have to yell if someone was talking to me but otherwise not overprotecting. 

Then it all came crashing down. I don't know how or why - maybe it's the antibiotic I had after my eye surgery, maybe it was just a freak accident, but the hyperacusis has returned with a vengeance and so has the tinnitus. I have gained multiple new tones since then - I've stopped counting as they fluctuate a lot and I can't even tell them apart anymore, it's like a constant multi-voice cacophony in my head, loud enough that it covers up environmental noise sometimes. The hyperacusis - so many sounds hurt now. I've lost my ability to go out as public transport hurts too much and spikes my tinnitus so hard that my head is screaming by the end of a day. I manage to make it to work and back but being there and doing my job takes everything out of me. By the end of the day I'm stumbling from the exhaustion of the constant pain and pretending that I'm okay while I'm desperately trying to get my job done and make it through. When I get home, I'm too tired to do anything, I just collapse and wait for the day to end so I can take my meds (a cocktail of 0.5 clonazepam, 10 mg of melatonin and 3.75/7.5g of mirtazapine usually knocks me out so I can sleep despite the tinnitus and the godawful, painful head pressure that comes with it).

This has destroyed my life. I can no longer go out, I cannot play music, I cannot watch a movie, I can't play video games, I can't listen to music because it all hurts and exhausts my tolerance for noise, spiking both my hyperacusis and tinnitus. It starts so much lower at the beginning of a day and then gets progressively worse as I'm exposed to completely safe levels of noise. Then a new noise shows up and after a few days of coming and going, becomes a permanent guest. I give up, I just really give up. I have tried getting help - psych professionals are no help because I'm not depressed - I'm grieving and no matter how hard I try, I just cannot, absolutely *cannot* accept this as life quality. Jason DiEmilio's suicide note comes to mind:

I want to live and be happy. I did not want to die. But hyperacusis has completely destroyed my life. It is the sole reason as to my decision. I cannot continue to live with this. What happened to me doesn't happen to people. The irony and the cruel joke of it all is completely unbelievable. I have spent the last six years in complete disbelief. All the things that made me happy now kill me. I suffer all the time. I'm tired. I'm tired of pain, and medication, and side effects and head pain and ear pain. I am tired of being trapped and imprisoned in my body.

I do not want to die. I had plans - GamesCom, Europe's biggest gaming convention starts next week in Cologne and I was in the process of finding a nice little AirBnb to stay at when this started. Now my friends go without me. I had to deactivate Facebook because I couldn't bear watching everyone go on vacation while I'm locked up in my house where I can't even do anything without pain. 

I don't know how to go on. My country's doctors who supposedly do TRT have failed me hard - I bought the book and had to find out the hard way that they do not uphold the TRT protocols. I am seeing Jacqui Sheldrake soon (will travel to the UK for a week, probably next month). I don't see how she can help me as even the sound generators I got spike my tinnitus even at a barely audible level but I have no other choice. As you like to say - I have tinnitus and my tinnitus has totally, completely, permanently, and irrevocably destroyed my life. It is completely unacceptable to think that after struggling through various life-threatening mental illnesses through my teenage and young adult years, I'm stuck with this screaming, painful prison inside my own auditory system. I cannot forgive my parents for forcing me into this joyless mockery of an existence, and I'm considering making them come with me when I finally snap and go. 

I hate everything. Every day is pain, in a very literal way. I have seen multiple psychologists and psychiatrists - they can't do anything. All they can do is give me sedatives as I can't stop crying long enough to be able to have a conversation so I don't go anymore. All they do is make me feel guilty - some people have SM! Some people have brain tumors! ALS! Some people die young! - and I'm not sure how that's supposed to console me.

Nothing helps. Everything I've loved now hurts me and I'm locked indoors unless I want pain and screaming tinnitus that feels like electricity running through my head. I can't believe this is my last year on Earth, I was only 32 and then this happened
Dr. Nagler

Owner
Registered:
Posts: 1,125
 #2 
Hello leafedges -

I remember you well from THIS THREAD back in April. And I am very sorry to see that you are still struggling.

Your current post makes me sad for two reasons. First, I hate the fact that you are suffering so. But back to that in a moment. The second reason it makes me sad is that your post is precisely the type of thing that appears all the time on Tinnitus Talk, yet does not go properly challenged. Rather, that repository of misinformation and enabling would let your post slide and infect the rest of the tinnitus community. Well, I am not going to let it slide. Since you have chosen to post it here, I am going to take it on. Why? Because you are so incredibly wrong about so many things. It will take me a while to get through it all, but that's what I am going to try to do. And hopefully when I am finished, you will realize that your life is not "destroyed" and that the only power your tinnitus has over you is the power you yourself give it. It's not your fault, of course. But it's true nonetheless. Sure, your hyperacusis complicates matters - but as best I can tell you have done nothing to effectively treat it. And there is a third reason your post makes me sad: This site is a Q & A board. I have taken great pains to stress that point. Yet your post contains not a single question, and I consider it to therefore be inconsistent with the format and purpose of this site. Still and all, I will give it my very best shot - because I know that you are hurting. But I absolutely refuse to "sugar coat" my response.

And so ...

Quote:
Originally Posted by leafedges
I'm sorry to post here again.

You are ill. You are suffering. And you have concerns. This board exists for people who are ill, who are suffering, and who have concerns. In other words, this board exists for you. You have nothing to apologize for. If you rob a bank, apologize for that. But do not ever apologize for being sick. Not to me. Not to anybody. Not ever.

Quote:
I'm lost, TRT recommendations I have followed have not helped me

As best I can tell from reading farther down in your post, you have yet to be evaluated and treated by anybody who knows anything about TRT. Your doctors do not understand it. Apparently you bought a book about TRT, but that means nothing. You can buy a book about art, but that does not make you an artist. So, too, you can buy a book about TRT, but that does not make you a TRT clinician.

Quote:
and I don't know how much longer I can go on. You might remember me from this thread - I understand if you don't, as you have a lot of people posting here. Things have escalated. My tinnitus seemed to stabilise a few weeks after I posted this - it was uncomfortable and annoying, but the sound sensitivity has decreased markedly and I was mostly able to return to my normal life, after some adjustments. I lost the headphones with the blaring music, started using hearing protection in places that were loud enough that I'd have to yell if someone was talking to me but otherwise not overprotecting.

Then it all came crashing down. I don't know how or why - maybe it's the antibiotic I had after my eye surgery, maybe it was just a freak accident, but the hyperacusis has returned with a vengeance and so has the tinnitus. I have gained multiple new tones since then - I've stopped counting as they fluctuate a lot and I can't even tell them apart anymore, it's like a constant multi-voice cacophony in my head, loud enough that it covers up environmental noise sometimes. The hyperacusis - so many sounds hurt now. I've lost my ability to go out as public transport hurts too much and spikes my tinnitus so hard that my head is screaming by the end of a day. I manage to make it to work and back but being there and doing my job takes everything out of me. By the end of the day I'm stumbling from the exhaustion of the constant pain and pretending that I'm okay while I'm desperately trying to get my job done and make it through. When I get home, I'm too tired to do anything, I just collapse and wait for the day to end so I can take my meds (a cocktail of 0.5 clonazepam, 10 mg of melatonin and 3.75/7.5g of mirtazapine usually knocks me out so I can sleep despite the tinnitus and the godawful, painful head pressure that comes with it).

Yea ... yea ... yea. You sound like my typical patient. And my typical patients eventually do just fine. Not all of them, of course. But the overwhelming majority certainly do.

Quote:
This has destroyed my life.

Absolute nonsense. Your life is exactly what you make of it under any given set of circumstances. And for sure your current circumstances present some considerable challenges. So your life has changed. But your life is not destroyed. Moreover, your life can get much better. Indeed, in time your life can become better than it ever was before tinnitus and hyperacusis. So you feel like your life has been destroyed - but that is thinking based on emotion rather than on reality.  

Quote:
I can no longer go out,

That is not true. Again, your emotions are speaking. Earlier you posted that you "manage to make it to work and back" each day. That would not be the case if you can no longer go out. But if you keep thinking in emotional terms, that is going to serve to make your reality even more challenging. Why do that to yourself!! 

Quote:
I cannot play music,

Sure you can.

Quote:
I cannot watch a movie,

Sure you can.

Quote:
I can't play video games,

Sure you can.

You will of course need to make some compromises in exactly how you do those things until you get better. But you can still do them. 

Quote:
I can't listen to music because it all hurts and exhausts my tolerance for noise, spiking both my hyperacusis and tinnitus. It starts so much lower at the beginning of a day and then gets progressively worse as I'm exposed to completely safe levels of noise. Then a new noise shows up and after a few days of coming and going, becomes a permanent guest.

You need a proper tinnitus and hyperacusis evaluation. And you need a strategy. Below you write that you will shortly be traveling to the UK to see Jacqui Sheldrake, who in my opinion is one of the three top TRT clinicians in the entire world. In her clinic you will have that evaluation, and you will embark upon that strategy. I am very excited for you. But stop telling us what you cannot do. Because it is simply not true.

Quote:
I give up, I just really give up. I have tried getting help - psych professionals are no help because I'm not depressed -

Of course you are depressed. (1) You have lost your silence. (2) Sound is your enemy. And (3) you have lost your control. You would have to be totally insane not to be depressed considering your circumstances. 

Quote:
I'm grieving and no matter how hard I try, I just cannot, absolutely *cannot* accept this as life quality.

So don't accept it. Who is asking you to accept it?????

Quote:
Jason DiEmilio's suicide note comes to mind:

I want to live and be happy. I did not want to die. But hyperacusis has completely destroyed my life. It is the sole reason as to my decision. I cannot continue to live with this. What happened to me doesn't happen to people. The irony and the cruel joke of it all is completely unbelievable. I have spent the last six years in complete disbelief. All the things that made me happy now kill me. I suffer all the time. I'm tired. I'm tired of pain, and medication, and side effects and head pain and ear pain. I am tired of being trapped and imprisoned in my body.

Oh please. You don't know anything about that guy except what he claims to be his problem. You have some nerve bringing that sort of crap to a publicly read Internet board where others can read it. Sure, feel bad for the fellow. I certainly do. But do not "being to mind" the words of somebody about whom you know next to nothing save for the fact that you both happen to have tinnitus and hyperacusis. And YOU are going to do something about it, which puts you way way way ahead of the game.

Quote:
I do not want to die.

Good to hear.

Quote:
I had plans - GamesCom, Europe's biggest gaming convention starts next week in Cologne and I was in the process of finding a nice little AirBnb to stay at when this started. Now my friends go without me.

OK, so you may have to postpone and plan instead for next year. It happens all the time when people are sick or injured. 

Quote:
I had to deactivate Facebook because I couldn't bear watching everyone go on vacation while I'm locked up in my house where I can't even do anything without pain.

Why don't you reactivate your FB account and share in your friends' joy this year as you look forward to joining them next year!

Quote:
I don't know how to go on.

But you do! You have very wisely made an appointment to see Jacqui Sheldrake. Jacqui will do a very thorough tinnitus and hyperacusis evaluation - and based upon the results of that evaluation she will tailor a TRT program to your needs. Plus, she has access to a psychologist (Laurence McKenna) who is truly an expert in the psychological ramifications of tinnitus and hyperacusis. I am very excited for you and for your prospects of recovery.

Quote:
My country's doctors who supposedly do TRT have failed me hard - I bought the book and had to find out the hard way that they do not uphold the TRT protocols.

OK. You were unable to get help in your country - so you are going to the UK. Bravo! 

Quote:
I am seeing Jacqui Sheldrake soon (will travel to the UK for a week, probably next month). I don't see how she can help me as even the sound generators I got spike my tinnitus even at a barely audible level but I have no other choice.

Let Jacqui Sheldrake worry about that. You will be in knowledgeable, experienced, and caring hands.

Quote:
As you like to say - I have tinnitus and my tinnitus has totally, completely, permanently, and irrevocably destroyed my life.

I do not "like" to say that at all. How dare you? What I do is try to figure out which of the hundreds of people seeking to make appointments in my clinic would be of particular interest to me given the fact that my time is limited. And if they tell me, "I have tinnitus and my tinnitus has totally, completely, permanently, and irrevocably destroyed my life," those are the folks who get appointments ... and after TRT the overwhelming majority resume healthy, happy, productive lives. That is what I like. And that is what I want for you.

Quote:
It is completely unacceptable to think that after struggling through various life-threatening mental illnesses through my teenage and young adult years, I'm stuck with this screaming, painful prison inside my own auditory system. I cannot forgive my parents for forcing me into this joyless mockery of an existence, and I'm considering making them come with me when I finally snap and go.

Stuff like you just posted belongs in a psychiatrist's office, not a tinnitus Q & A board.

Quote:
I hate everything.

More psychiatry. I know that you are hurting big time - but "I hate everything" is way way way above my pay grade.

Quote:
Every day is pain, in a very literal way.

Leafedges, I have been very tough on you in this thread. I have challenged your assertions left and right. But that is because I want you to know deep deep down in your heart and in your gut that in spite of the fact that "every day is a pain," you have taken some very meaningful steps towards getting better. And that makes you a hero!

Quote:
I have seen multiple psychologists and psychiatrists - they can't do anything.

That's because only part of your problem falls in their domain. Most of your problem is neurophysiological, not psychological or psychiatric. And you have made an appointment with somebody who is in an perfect position to address your neurophysiological issues. Good for you!

Quote:
All they can do is give me sedatives as I can't stop crying long enough to be able to have a conversation so I don't go anymore.

If you cannot stop crying long enough to be able to have a conversation, that sure sounds like depression to me. I'm not trying to argue with you here - only pointing out that you might possibly have been mistaken when you said earlier that you were not depressed.

Quote:
All they do is make me feel guilty - some people have SM! Some people have brain tumors! ALS! Some people die young! - and I'm not sure how that's supposed to console me.

First of all, you have absolutely nothing to feel guilty about. You wouldn't feel guilty about having a cardiac condition that significantly affects your life. Why feel guilty about having having an auditory condition that significantly affects your life? And as far as comparing your situation to syringomyelia, brain tumors, or ALS, maybe they ought to try walking in your shoes for a few hours. That'll bring 'em to their knees pretty quickly, don't you think? Seems to me that - no fault of your own - you have not yet found the right doctors and other health care providers. But thanks to your persistence and determination, with Jacqui Sheldrake that is all about to change!

Quote:
Nothing helps. Everything I've loved now hurts me and I'm locked indoors unless I want pain and screaming tinnitus that feels like electricity running through my head. I can't believe this is my last year on Earth, I was only 32 and then this happened

This is not your last year on Earth. No, this is the year you turn it all around for yourself! This is the year you SOAR!!!

All the best with it -

Stephen M. Nagler, M.D.
Atlanta Tinnitus Consultants, LLC

__________________

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

Member
Registered:
Posts: 9
 #3 
Hello Dr. Nagler,

Thank you for your thoughtful reply. You're right, my post didn't explicitly have a question - I meant to actually ask something, I'm sure, but I'm a complete mess and I ended up with this... word salad of a post. I didn't mean to abuse the Q&A format. 

It's hard to feel like my life isn't destroyed when the only way I can go out without pain is with my parents driving me - where I live, driving has never been an important part of independent adult life (big city with super useful public transport) so I never learned and I don't have a car. Being transported to work and back by car when I'm 32 after years of being completely independent... chafes. A lot. I'm trying to be grateful that at least I can still work but my adult life is destroyed. Public transport hurts and makes my head scream and putting up with coworkers who are so unbelievably loud and don't even realise... I would not call this a life. Existence, sure. But not life. 

Quote:
Why don't you reactivate your FB account and share in your friends' joy this year as you look forward to joining them next year!


I can't. I tried, but I just can't. I've removed my friends from my life except for one as I'm too jealous of them. I wish I could be happy for them, I really do, but when I see an e-mail from them asking for a sign that I'm still alive and all I can think about as an answer is "I hate you, I hope you and everyone you love dies horribly", it's probably best that I keep to myself. It's not fair to them- I've tried to be happy for them but when they're out there, enjoying their music and festivals with healthy eyes and ears and I'm sitting here with my deteriorating vision (had surgery in one eye, the other's up in the next few months and all I can do is hope that they stop the keratoconus process so I won't need a transplant) and the highlight of the day is when I can finally fall asleep... I just can't, I can't be that person anymore. And they deserve better than the person I am right now.

Quote:
You will of course need to make some compromises in exactly how you do those things until you get better. But you can still do them. 


I'm not sure what you mean. Sound hurts, how am I supposed to enjoy activities that hurt? 

Quote:
If you cannot stop crying long enough to be able to have a conversation, that sure sounds like depression to me. I'm not trying to argue with you here - only pointing out that you might possibly have been mistaken when you said earlier that you were not depressed.


We must have different definitions of depression, then. I was "depressed" for pretty much my adult life. I hated myself, thought I'm the worst person and that I should kill myself. None of that applies anymore. For literally the first time in my life, I have realised that I'm a valuable person, that I have absolutely no reason to hate myself and I deserve to be happy. If I didn't have hyperacusis and tinnitus, I would not be here right now, I would be enjoying summer with my new-finally!-found confidence. Instead it's... this. Trying to talk to a psychiatrist feels like sitting there with a horribly broken leg... they ask me about my relationship with my parents and I'm just crying because my leg hurts and I can't go to places without pain and that makes me really sad and why are you asking me about my parents, what does that have to do with ANY OF MY PROBLEMS?! I've seen... five psych doctors and all they could do is listen to me cry or give me medication. (Ah, medication... a supposed tinnitus-neurologist prescribed me some Escitalopram. I'm usually against psych meds as I've been to an addiction treatment centre for my eating disorder and I've seen what they do to people, but I decided to take it anyway... then I found out that it massively made me spike and gave me a new tinnitus noise. I didn't realise what was happening until I looked it up and saw this listed as a possible side effect - took myself off the med immediately and fortunately the spike subsided. That's the end of me and antidepressants, I think...) I've seen so many and all of them are absolutely clueless about hyperacusis/tinnitus and what it does to a person. Especially the ones with extremely quiet offices where all I hear is the tinnitus. I'm not sure how they could help. Getting these diseases after finally realising that happiness is possible for me and that there's nothing to hate about myself - how am I not to interpret that as a huge sign from life that I'm really just not supposed to be alive?

I'm sorry if I sound like a broken record. I'm trying to believe you about things getting better, I am. This half a year with hyperacusis and tinnitus has twisted me into a person I don't recognise. I was always sad, but never hateful like this. I wish I could share your positive attitude. I want to, I desperately want to. But if Jacqui can't help me... I really don't think I'll make it through Christmas like this. I am tired and while I know that I should just stop feeling sorry for myself, I can't deal with the fact that both my ears and eyes decided that it's time to stop working properly after I finally made the decision to love myself and be happy. If my boss and working environment weren't so gracious, I would have lost my job since headphones hurt, even at a low volume. I still might, if my vision gets bad enough. Suicide actually is a rational solution to my problems now and that's scary. Earlier, it was always about me hating myself - now I just hate my life and it seems like such an obvious thing to deal with the problem. I've attempted it when my tinnitus started and I could not sleep for days because I didn't understand what was happening to me and the screaming wouldn't stop. But now I've had a good look at what my existence will be like if I don't get better and... well. It really is rational and I don't think any of my friends would blame me if I did it.

...there I go again. I swore to myself that I will make this a short thank you note. I guess that didn't happen. Thank you for your reply and not sugarcoating things. I'm trying to be hopeful but making it through work every day pretending that I don't want to throw things at coworkers (and this is a dream job with people that I adore!) when they let doors slam or dare to laugh loud takes up most of my emotional energy.
Dr. Nagler

Owner
Registered:
Posts: 1,125
 #4 
Well, that's quite a post there.

I am going to address only a few points that you raise in the hopes that it will be helpful to you and to others as well.

First of all, the obvious. On the one hand you start out by apologizing for having abused the Q&A format in your last post ... and then you go right ahead and do it again! There are loads of sites where people talk about how miserable they are. This is not one of them. This site is where people bring questions and get answers.

Significantly, in my opinion anyway, you posted [in part]:

Quote:
I've removed my friends from my life except for one as I'm too jealous of them.

Since you mentioned that you appreciated my not sugarcoating things, I am not going to start now. And what you have written above is just plain weird. It seems to me that you have some major issues going on unrelated to your tinnitus and hyperacusis. Tinnitus and hyperacusis are not psychological problems, but that doesn't mean that people with psychological problems cannot also develop auditory challenges. And having read through all of your posts to date, it is abundantly clear to me that you have some enormous psychological problems that have nothing whatsoever to do with your tinnitus and hyperacusis. Your life is broken - but not destroyed. If you wish to put things back together again - if you wish to become whole - then you will need to attend to both the psychological and the audiological.

Quote:
Sound hurts, how am I supposed to enjoy activities that hurt?

You do it ever-so-slowly - bit by bit. And you do not fully enjoy it at first. What you do is very gradually establish a résumé of success for yourself. Jacqui Sheldrake will be of some assistance in that regard, I am sure. 

The rest of your post falls umbrella of the psychological, and I am simply unwilling to go there.

Stephen M. Nagler, M.D.

__________________

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

Member
Registered:
Posts: 9
 #5 
You are right - I know I still have some things left to work out in therapy, even though they're nowhere near as bad as they used to be (can you imagine?). I honestly don't even know how to approach this nasty tailspin when all my activities that used to help me cope are off-limits and I'm terrified every night about whether the tinnitus will let me sleep or not. Even after months of trying with different doctors, I haven't managed to get past the point of "but sound hurts and my head is screaming, why is this happening to me now, this is not fair" during sessions. 

For what it's worth, I've asked the lady who's helping me out with Jacqui's appointments if she can set me up with a psychologist/psychiatrist. I'm hoping they will be a little more familiar with this stuff, maybe give me some pointers about what kind of therapist I should be seeing back home because they all seem to be clueless... Maybe I've just been seeing the wrong people?

Anyway, thank you for your invaluable input. I'll keep rereading your reply over and over again until the end of September comes and I go to London. It's given me something to hold on to, for now.

All the best wishes to you.
Dr. Nagler

Owner
Registered:
Posts: 1,125
 #6 
Instead of reading my reply over and over until the end of September, why don't you read a few good books!

It's not a question; just a thought. There is absolutely nothing to be gained by reading my posts more than once or twice. In fact, if I were you, I'd stay away from tinnitus and hyperacusis boards altogether. Including this one.

Anyway, I wish you well - but please, no more postings unless you have a specific question.

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.



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.