One Year with Tinnitus

Hi Guys,
Many of you probably dont remember me from before but I used to be a regular on this tinnitus site. One day, out of the blue, for absolutely no reason, I got unilateral tinnitus in my left ear. It drove me to the brink of suicide where one night I was so afraid I went to emergency and then basically g0t laughed at for wanting to die just because i had a "ringing" in my ear, so I went home, defeated. I had no idea where to do from here. My audiologist wasn't giving me any answers. I read every single journal article I could find on the topic and, by the way, i am no more knowledgeable now than I was before I started. I had crazy powders and vitamins imported from all over the world hoping that one of them would have an effect. Nothing.
Over time I started to listening to music during all my waking hours and downloaded a cool air sounds app which i play through my sound system in my bedroom at night. Slowly, the anxiety around tinnitus faded as I listened to these maskers 24 hours a day every day. I have come to a point now where I dont even realise I'm listening to music anymore its become that natural, and the rain sounds app is so good that my partner who doesnt have tinnitus uses it also. Silence is deadly. I dont know why so many of you aspire to live a life of silence. In some countries pure silence is used as a form of torture. So stop wishing for something you can never get and for something that if you COULD get you would absolutely hate anyway.
What am I doing in the meantime? Researching. I'll work it out for all you guys, you just have to be patient

 

Hi Neenie,

I am new to this forum, but not new to T. I can relate to your response from doctors, and I was on the brink of suicide last week as my T has suddenly got worse and trying to get help has been a struggle. Audiologist same deal, hearing aid made it worse. I have read from a US Vet website thru a CBT workshop they do for soldiers to sound your house, much like you seem to have. I am just trying to manage by the hour right now, just can't get a handle on it.

Blair

 

Yes, sound therapy can be a real life saver, N. The panic you experienced, and may be tempted to again at times, is common initially. You began to add to your life mitigating sounds and refused to relieve yourself of the chorus in your head at any cost. That's good. There is no immediate fix at this time, so we have to be patient. I've been 42 years with T, and even as I sit here typing I can hear it, and I still resort to the basics: sound therapy and relaxation. What we think can make all the difference in the world.

Next year will be even better for you, N.
David

 

Hi Neenie. Thank you very much for coming back to share your 'success story' with us. It is wonderful to hear your positive change. I still remember some of your posts were filled with despair and the 'I want to die' rants. It is amazing to hear your turn-around. Perhaps some day you consider writing your success story so it can be archived for all to read. It will give the newer sufferers so much hope to witness your turning around.

 

Silence to me was never deadly, it was something I treasured, It was one of my pleasures in life hearing nothing but the sound of silence!

Rich

 

@Neenie - I'm so glad you've come back here to update us. I was thinking of sending you a private message just yesterday to see how you were going. I'm glad you have found something that works for you. I'm a huge fan of those sound apps and use mine whenever I'm in a quiet situation

 

Writing that kind of stuff on this forum is like telling the most hard core religious community that "I don't know why so many of you aspire to live a life of religious activities". If you are unsure of the effect, then try having a t-shirt printed with "I don't know why so many of you aspire to live a life of Allah" the next time you travel to a Muslim country in the Middle East. Good luck with that.

Have you tried selling sand in the Sahara desert? Or ice on the North Pole? Your argument is a tough sell on this forum, I fear.

 

Silence is deadly?
Wow I would give everything to get back that deadly beast.
I know we all try to find an excuse to habituate but calling the silence deadly does not work for me.

 

silence isn't deadly... that's a lie, neenie--- whether you believe it or not tinnitus isn't music of the brain or something most people hear in silence or anything else that nagler and the polish engineer think it is... it is abnormal--- get that- you are in audiology school if i'm not mistaken- it would be great as a tinnitus sufferer if you would challenge the instituionalized understanding of tinnitus rather than buy into it

 

I believe that @Neenie is referring specifically to environmental silence. I am unaware of any clinician or tinnitus researcher in the world who encourages tinnitus sufferers to hang around in quiet rooms.

Dr. Stephen Nagler

 

Doubt it. But, complete sensory deprivation is used as a method of torture - yes.

Actually, tinnitus like "music" is used as a form of torture, not silence.

 

Did I just read what I thought I read ?

 

Silence is normal-- tinnitus is not-- tinnitus gets shut off-- then silence is normal again. Silence with tinnitus is tortue but true silence is not abnormal-- our brains are abnormal creating silence impossible. T gets shut off.. NORMAL . ( not that were not all normal, but just tinnitus is a symptom not a neccescity are body naturally produces) It can be shut off, and it will.

 

You'll work it out for all us guys?....We just have to be patient?....Really?

What exactly is it that you're going to work out for us?

 

That there pegged my WTF Meter too!...

 

At least she's trying to work on something.

 

Nice to hear that you are somewhat back on track. Your posts was among the first i read when T hit me 6 months ago, and i remember the anxiety you had back then. Don´t mind the bitterness among lots of people in here.

 

Umm, @Neenie was a regular here for some time, guys. She has just come back to update us. Thanks, Neenie. I am glad you are doing so much better and progressing with your studies. I remember your early days being very hard.

As @Dr. Nagler said: I think what Neenie is trying to say is super quiet environments are hard for many tinnitus folks, and that environmental sound therapies have helped her tremendously. Appears she's at the point that having this sound in her daily routine has become second nature. Same for me.

As for the rest of her post, I think perhaps it could have been better stated and may be somewhat misinterpreted by some here, although all are entitled to their opinions. The pitfall of electronic conversations.

 

At least she found a way to cope with her T.
If it is listening to sounds the whole day or whatever else, it doesn't count.
What counts, is what helps.

 

@Neenie also read a lot of your post back then. Kind of miss you. Happy to hear that you so much better. Agree 100% with Nick, do not let the bitter once turn you down. I am amazed that it is allowed. Thought we all know better.....

 

I don't aspire for silence, I just get tired of all the sound machines and constant noise. I stopped using the sound machine at night because I was more tired of hearing that thing than my tinnitus.

 

Neenie, I am really happy that you've been able to come to a point where your tinnitus no longer rules your life. I truly am. However, do you think during the time you were suffering that you'd like to see a post like this? Essentially it seems like you've adopted the same attitude that many of us are all too familiar with. And that is the attitude of, "Oh, it's not that bad, get over it." You know exactly what a tinnitus sufferer wants out of silence. Remember, you were there only a little over a year ago. And you LOVED it, you didn't hate it, which is why when it was gone, you felt suicidal.

Don't get me wrong, I am very happy for you. But take the suffering you had and use that as an experience to understand what sufferers are going through. Don't push that experience of suffering aside. Otherwise, you'll just be another audiologist who doesn't understand, regardless of whether you had/have it or not.

 

i would love to hear silence again!!! it would be so peaceful, normal and relaxing.....so sad we have no cure yet!!!

 

I was referring to "environmental" silence too, and yes environmental silence or very quiet surroundings are normal environments in which humans spend decent amounts of time-- both in the natural world, and especially in the world man has existed in since building habitable structures several thousand years ago( and probably in caves for thousands of years before that).

I agree silence is awful for people with intrusive tinnitus, but Neenie is saying that silence is bad for everyone: ie her comments about silence being used as torture, etc. My point is the ability for humans to be unbothered in very quiet surroundings is the "normal" human experience-- tinnitus isn't. While I'm glad Neenie doesn't seem to be suffering like she once was, I find it sad that she, like many tinnitus sufferers, need to buy into the tinnitus version of the flat-earth society: "silence is bad, everyone hears tinnitus in silent places, music of the brain, etc, etc). Adjusting to a condition shouldn't require the acceptance of asinine theories. I think we all tell ourselves stories and narratives to make sense of our lives and the world we live in. So I guess there are worse things than believing in a fiction if it helps a person cope- I'm just sad that at this point that seems to be the best out there that is offered to tinnitus sufferers.

Depite the fact that I think the Jastebroff model is complete fiction and that at times you can be abrupt (I should be the last person on earth to judge another for that)... I am glad that you are back on the forum Dr Nagler. Until a widely available cure is found- there is nothing wrong with people thinking whatever they need to think in order to deal with their tinnitus. Fairy tells and narratives, even though not true can be very useful on a personal level to help people cope and live better; they become problems when accepted as true by larger groups where they affect actions, group allocation of resources, paths for further intellectual or scientific inquiry, etc. I believe you are back here and are mainly concerned with the "personal": helping people and on that basis, I think your prescence is great.

-Matt

 

@Mpt wrote [in part]:

"Fairy tells and narratives, even though not true can be very useful on a personal level to help people cope and live better ..."

Just so we're straight here, I do not post fairy tales.

Dr. Stephen Nagler

 

Thank you for proving my point- fairy tales and fictitous theories don't appear that way in the eyes of the true believer. When you explain "the model" to your patients, that is a fairy tale (but of course to you it isn't)-- not a literal "fairy tale" but like a fairy tale in that it is a fiction, the heller bergman experiment has been discredited, TRT's continued use of that (in fact it was the backbone of the theory) is a classic case of confirmation bias. This is what I mean when I say that its sad that sufferers currently have to check their reasoning at the door.

 

@Mpt, please tell the folks here in one sentence: What is the fundamental principle of the Jastreboff Model? I mean, earlier in this thread you disparagingly referred to Dr. Jastreboff, who just this year in Berlin received an international award for clinical excellence in recognition of his contributions to the field over the past twenty-five years, as a "polish engineer" - so I wonder if you can quote the fundamental principle of his model. I'm not asking you to agree with it. I'm just wondering if you know what it is!

(Hint: It has nothing to do with the Heller & Bergman experiment.)

Dr. Stephen Nagler

 

I’ve read the book and papers by Jastebroff and Hazlett, but I’ve never hired a tinnitus professional like yourself to explain it to me, so I’m looking forward to this bit of free therapy.
The crux as I understand it is that through counseling aimed at informing a sufferer that the tinnitus signal isn’t harmful or representative of damage and through sound therapy (where appropriate) tinnitus can be reclassified (by both the conscious and subconscious mind) as a neutral stimulus and thus over time tinnitus distress decreases. I know the work relies heavily on subconscious neuronal networks and the brains ability through plasticity to adapt and habituate to non-threatening auditory stimuli. Let me know where I am wrong and how the Heller and Bergman experiment informed the engineer’s work.
I know Hazlett has claimed in a paper than eventually the hyperactive neuronal connections cease…he and Jastebroff have authored quite a few papers together--- so perhaps the TRT cure has been found already….

 

I'm not offering you free therapy. I am merely pointing out that if you are unable to state the fundamental principle of the model, I don't see how you can possibly make an informed decision about its validity.

And that's no fairy tale.

Dr. Stephen Nagler

 

What is the "fundamental principle" in my impression of TRT is incorrect?