Help, Not Getting Better

[object16]

Hi, I am going on 58 years old, and have tinnitus for 25 years. A year and half ago, I briefly played my stereo too loud. three days later i had this immense tinnitus spike, and since then i have had several more spikes just from minor loud noise that should not do anything, such as clanging of dinner plates, any clanging sort of noise, car door closing, etc. -

All the time, hope is like a cruel joke, when time goes by nothing seems to improve. I did do TRT in the past, but at the present moment, my ears have suffered from more noise related permanent nerve damage, and my life is living torture.

 

[Dr. Nagler]

Hi, I am going on 58 years old, and have tinnitus for 25 years. A year and half ago, I briefly played my stereo too loud. three days later i had this immense tinnitus spike, and since then i have had several more spikes just from minor loud noise that should not do anything, such as clanging of dinner plates, any clanging sort of noise, car door closing, etc. -

All the time, hope is like a cruel joke, when time goes by nothing seems to improve. I did do TRT in the past, but at the present moment, my ears have suffered from more noise related permanent nerve damage, and my life is living torture.

CBT?
MBSR?

Perhaps contact Dr. Bruce Hubbard in NYC? He's an expert in both specifically as applied to tinnitus.

sp

 

[Markku]

Sorry to hear that object16.

You were doing so much better only a short time ago: https://www.tinnitustalk.com/threads/music-therapy.3301/

Has the music therapy stopped working, or is it just a new spike again and you need to re-adjust?

I hope it starts to get better soon again.

Markku

 

[cullenbohannon]

From reading your posts I see you are struggling. I don't have a lot of experience with t but you have to see some one. For the depression your going through and your t. Obviously the t probably drives your depression but perhaps treating the two separately you will start to see you mood doesn't have to be tide to your t. It seems you have full blown depression and should be treated for the two things. @Dr. Nagler seems to have some ideas look intothem and don't give up.

 

[object16]

Hi, I have been doing full blown "music therapy", maybe it is just working too slowly, maybe i need more patience, but I read another thread where they said that if you have the kind of tinnitus that easily gets "rekindled", then you may do poorly with TRT. I have been attempting to very carefully do TRT and sleep with music, etc., but sometimes the tinnitus is so severe, and the hyperaccusis, that my ears "jangle" and I can't tolerate just moderately loud normal human speech: some people talk with a loud voice, and i have to put my Bose 15 on to cut down the sound level - this disease is so scary.

 

[cullenbohannon]

@object16. Yes it's scary and its hard to get through obviously harder for some. But don't give up one thing I've been doing is called positive psychology. Look up Shawn achor he has videos on youtube as well. Obviously this won't fix your problems but it can help change your outlook. One thing he said was if you can't change what happening around you change the lens or how you perceive what's around you. You have been depressed so long your in a pit you can't get out of. Look into him. If what your currently doing isn't working make some changes but don't give up. I know it's easier said then done but look at the positive things in your life and talk to someone experienced with t and for the depression someone you can talk to. Again I don't know what you have tried but I'm truing to be helpful.

 

[Magpie]

Object16 wrote:
Hi, I have been doing full blown "music therapy", maybe it is just working too slowly, maybe i need more patience, but I read another thread where they said that if you have the kind of tinnitus that easily gets "rekindled", then you may do poorly with TRT. I have been attempting to very carefully do TRT and sleep with music, etc., but sometimes the tinnitus is so severe, and the hyperaccusis, that my ears "jangle" and I can't tolerate just moderately loud normal human speech: some people talk with a loud voice, and i have to put my Bose 15 on to cut down the sound level - this disease is so scary.


Maybe you need to have a rethink about repeating TRT. White noise aggravated mine so I stopped doing it. Music was better and had no effect on my T. As yours is easily rekindled I would probably avoid anything that sets it off. It takes time especially when you have hyperacusis but eventually you become desensitised. Anxiety can be hard to deal with so just take it easy and let your ears reset themselves.

 

[I who love music]

I'm sorry to hear about this.
You said, "Spikes," so it IS going up and down I assume.
Hang in there and protect yourself with cotton, that's what I did when I had one big two year spike. I think this is a healing time for you.
Maybe you've read some of my posts. I've been helped a LOT by the suggestion of someone here, to measure my response to T, not the T itself.
If this sounds interesting... here's how it works...
by the way, I'm 55 and have had loud T since 1974 from loud music -
Sitting here now, I remember talking to my dad in his mancave today working on a furnace part. It was quiet down there and my RESPONSE to my T at that time was, "I hear it. I hate it. So what."
Also in the early afternoon I was driving to the store with the radio off. I was mildly annoyed by my T at that time so I turned the radio on and to my surprise, Prarie Home Companion was on and I believe I instantly forgot about my T.
Tonight watching TV my T was blaring as it always does when the TV's on, and my response was somthing like, "I hear ya." And overall today's responses were few, and short.
- and this approach has made ALL the difference.
I can't run from my T. Benzos and Prednisone don't really help. And I've had my share of panic attacks and feeling down.
This technique of listening to myself gauge my response and not gauge the T volume has made a big positive difference in my life.
I don't know why it works but I'm glad it does.

 

[dan]

@object16 I have been suffering from nerve damage for 3 years now.
It started loud I thought, I could already hear it on a quiet street but traffic noise masked it. I had to go on Klonopin to sleep. Upon quitting my tinnitus increased. Then after a year my dish rack fell and shattered all my dishes. Tinnitus increased.
Then it just felt like increasing a little bit more to the point that it was heard now in any place over any thing.
There is a rare sufferer poster over on DS forum which describes my tinnitus well - like flying in a MIG with no roof.
Last summer I was like hell I don't think this can get any much louder. Actually I was walking down near construction wondering if I should rush by, but I didn't care. Then this worker blew an pressure air horn 20 feet from me as a dump truck was backing up. I felt the sound reverberate thru my whole body...I thought this is it when I get home, tonight my tinnitus will be more unbearable than it already is and I will kill myself. Well it didn't and next day I was like hmmm.
Then after a few weeks I was fixing my friend's bike tire and it blew up in my face and I thought hmmm, now I'm dead, but no the tinnitus did not change much, just a temporary tone cut in and out for a few days.
What I'm trying to say is that there comes a point that tinnitus cannot get any more louder and the only consolation you have is that fact over the fact that you are trying to survive hour to hour...because if it does get any louder then I'm done for. Your tinnitus isn't louder than mine trust me, I've had brain scans-its bad, you could probably power up a Christmas tree from my brain.
Nevertheless I am hopeful for an effective drug treatment in the next 5 years. Meanwhile next week I will be purchasing the Bose noise cancelling headphones so I put them on while zombie walking down the busy streets of Toronto.

p.s.hey this sounds like a good chapter for a book to write, i'll call it "Tortured by Sound Reloaded" - Carol Brooks already published the first book.

 

[yonkapin]

I remember you wrote a few times that you use a number of different medications to get to sleep - maybe they are interrupting with your recovery?

 

[attheedgeofscience]

Hi, I have been doing full blown "music therapy", maybe it is just working too slowly, maybe i need more patience, but I read another thread where they said that if you have the kind of tinnitus that easily gets "rekindled", then you may do poorly with TRT. I have been attempting to very carefully do TRT and sleep with music, etc., but sometimes the tinnitus is so severe, and the hyperaccusis, that my ears "jangle" and I can't tolerate just moderately loud normal human speech: some people talk with a loud voice, and i have to put my Bose 15 on to cut down the sound level - this disease is so scary.

To understand the human ear, you have to look at it from an evolutionary perspective and keeping in mind what it was originally designed to do. Our ears were not designed for constant noise - loud or soft - and certainly not for noise played directly into the ear canal for hours and hours. The problem with "sound therapies" is that they tend to be head set based. This kind of noise is (potentially) dangerous. Especially for ears that are already damaged. The instructions from manufacturers of sound therapy devices would typically be to set the masking noise just below the tinnitus level. Most people will intuitively feel that playing masking noise at such a level is safe. But is it? Before my cold laser and stem cell therapies, I had an average hearing loss of 15 db in the 0-8 kHz range. On an audiogram, that looks fairly "innocent". But is it? Being one of the relatively few people in the world to have had my hearing loss eliminated, I know first hand what difference a hearing loss of 15db in the speech frequency range makes. This time last year, I would have my headset setting when using Windows 7 at 5% of total volume (when viewing news on CNN and/or youtube videos). Back then that felt "normal" - no more, no less (I have always been careful with my hearing). Today I have the volume down to 1%...! To understand why 15db makes such a difference, you have to remember that the energy carried by a sound wave doubles for every 3db. 15db is therefore a 5-fold increase/decrease. Just pause for a moment and think about what that means! In other words, my previous very moderate listenting was perhaps not so moderate at all - even though I had normal hearing according to an audiologist. But then again, there many things audiologists don't know. Especially about tinnitus.

Using sound therapy devices constantly is like putting salt in the wound.

 

[cullenbohannon]

You were able to reverse your hearing loss through stem cells and laser therapy? How does that work?

To understand the human ear, you have to look at it from an evolutionary perspective and keeping in mind what it was originally designed to do. Our ears were not designed for constant noise - loud or soft - and certainly not for noise played directly into the ear canal for hours and hours. The problem with "sound therapies" is that they tend to be head set based. This kind of noise is (potentially) dangerous. Especially for ears that are already damaged. The instructions from manufacturers of sound therapy devices would typically be to set the masking noise just below the tinnitus level. Most people will intuitively feel that playing masking noise at such a level is safe. But is it? Before my cold laser and stem cell therapies, I had an average hearing loss of 15 db in the 0-8 kHz range. On an audiogram, that looks fairly "innocent". But is it? Being one of the relatively few people in the world to have had my hearing loss eliminated, I know first hand what difference a hearing loss of 15db in the speech frequency range makes. This time last year, I would have my headset setting when using Windows 7 at 5% of total volume (when viewing news on CNN and/or youtube videos). Back then that felt "normal" - no more, no less (I have always been careful with my hearing). Today I have the volume down to 1%...! To understand why 15db makes such a difference, you have to remember that the energy carried by a sound wave doubles for every 3db. 15db is therefore a 5-fold increase/decrease. Just pause for a moment and think about what that means! In other words, my previous very moderate listenting was perhaps not so moderate at all - even though I had normal hearing according to an audiologist. But then again, there many things audiologists don't know. Especially about tinnitus.

Using sound therapy devices constantly is like putting salt in the wound.

Jakob S. Hansen
Stem Cell Pioneer

 

[here2help]

attheedgeofscience, I strongly disagree with your views on sound therapy. Different treatments for tinnitus and decreased sound tolerance use sound enrichment for the purpose of habituation and/or desensitization. Treatments that use environmental sound, as well as ear level sound generators (or combination instruments for patients with hearing loss), can be very effective. The proper selection and programming of instruments tailored to a patient's needs is crucially important. Playing the sound emitted by these instruments "directly into the ear canal for hours and hours" is not dangerous. It is an essential part of therapy.

You strongly believe that doing so "for ears that are already damaged" is counterproductive and potentially harmful, "like putting salt in the wound." I respectfully disagree. Many tinnitus sufferers and patients with decreased sound tolerance successfully use sound therapy as part of a strategy to habituate tinnitus and improve (and sometimes cure) problems with decreased sound tolerance.

You also question whether "playing masking noise at such a level is safe." It is. To take one example, the generators used in TRT are set at an 11 dB SL sound level, on average, according to data compiled in several clinics where TRT was administered.


Dan, with much respect, I feel you have drawn the wrong lesson from your exposure to the air pressure horn and to the sound made by the bike tire when it exploded.

The lesson you might have drawn was that your instincts about the impact of the air pressure horn and exploding tire were wrong. Your tinnitus did not become more unbearable after someone blew a loud horn 20 feet from where you were standing. The impact of your friend's tire when it exploded was only temporary. Your instincts told you your tinnitus would become unbearably louder, but that didn't happen. Your worst fears were not realized.

The lesson isn't that tinnitus can't get any louder after a certain point. You drew that lesson to support your view of yourself as the worst of the worst. Your views will keep you down much more than tinnitus ever will.

here2help