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ecshen

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Reply with quote  #1 
I developed tinnitus at age 30, in 1988 after a beginning swimming lesson.  I guess the trigger was  blowing nose in the water too long and too hard  during the first two lessons.  After that I thought the radio at home was broken because I heard the high pitch sound like radio frequency has statics.  I have seen ENT doctors since then and learned to cope with it since there is no treatment.

I have hearing test every few years to make sure my hearing is okay.  Overall I could tolerate tinnitus.  But the life-changing incident happened in July 2016, when I received a brain MRI.  I learned the word "hyperacusis".  Previously, I had three MRIs on neck and lower back as I had back and neck pain but never experienced worse tinnitus from the three spine MRIs.  I started to search internet and joined this blog/listserv to educate myself about  T and H.  I saw two ENT dr. after the incident but not getting any help.  From the suggestions on this blog I went to Dr J to get TRT treatment in MD this March.

I am like what Kathy posted in this blog that TRT did not helped me but make my T and H worse.  I tried this hearing device, L ear amplification and R ear white noise to stimulate brain and after three weeks, I experienced L ear pain, really loud T sound, H and the overall quality life was miserable. On the fourth week of trying this hearing aids, I returned it.  I just could not tolerate it.  This hearing aids gives too much stress for me.

In April, I developed TMJ on my L ear.  I interviewed two orthodontists/TMJ specialists I will post question on TMJ in a separate message as my posting here is to ask about NEUROMONICS.  Does anyone have T and H went through Neuronomics treatment and how that helps you?

Thank you for your reply.  God bless you.

Emily





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Rick

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Reply with quote  #2 

Hi Emily, 

I have tinnitus and hyperacusis. And TMJ, too. I haven't tried Neuromonics yet. So why am I writing?! Because I noticed that you live in Sacramento. So do I. I was thinking it might be helpful to compare notes sometime. So if you ever want to talk, you can email me directly at rickrowan@ymail.com and I'll give you my phone number.

I've been dealing with T and H for about 40 years now. I've tried TRT, diet, acupuncture, meditation, TMJ splints, and more things than I can remember at the moment. Some have helped. Some have made it worse. 

Take care, 
Rick 


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Aplomado

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Reply with quote  #3 
Hello,

I am just doing ordinary TRT with the sound generators and pink noise.  It works for me.  My audiologist said neuromonics isn't idea for hyperacusis... HOWEVER I corresponded with a man with severe tinnitus and hyperacusis who did neuromonics, and it cured his hyperacusis (and his tinnitus greatly reduced also).  So, who knows?  If you want, I will contact him for you and see if he is willing to correspond with you himself.

edit- looking back at his e-mails, he actually did a bunch of other therapies along with neuromonics, like CBT... 

aplomado
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ecshen

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Reply with quote  #4 
Hi Aplomado,

Thank you for your reply.  Could you ask your friend if he is willing to correspond with me of how and what methods that helped him to alleviate H?  Thank you very much.

Emily

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Aplomado

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Reply with quote  #5 
I sent him an e-mail asking him to respond to this thread if he could.
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Cayenne88

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Reply with quote  #6 
Hi, I'm Jeff, Aplomado's friend.  

I'm happy to share my experiences, but first I want to say to Emily, I'm sorry that you're dealing with all this.  T and H became one of the most difficult health issues I've ever had to deal with.  It was quite an undertaking to get it under control.

I did indeed use the Neuromonics Oasis device.  I think there are other devices Neuromonics makes now that are much cheaper.  Mine cost $5,000 about 5 years ago.  It was worth it.  I think they have ones that are only a few hundred dollars, which makes sense because it's basically an mp3 player with a customized acoustic profile for my hearing.  But for how effective it was, and how much it saved my life, I would have paid $10,000.

I do want to say that my tinnitus and hyperacusis were closely linked to my lifelong low-grade anxiety.  The T&H were part of a cyclical feedback loop of panic that developed after the initial acoustic upset that triggered everything.  So I had to treat the anxiety as well.

To treat the anxiety I used a combination of CBT talk therapy and benzos.  Later I added neurofeedback to things so I could ramp down the energy my brain was giving to the anxiety center of the brain, and I was able to get off the xanax in a few months.  I learned how to identify the emotions and thoughts that fed into my anxiety, and from there I was able to short-circuit that loop.  I also used sound saturation therapy (staying away from silence).  And later on, towards the very end, I used a type of brain hack for me to unconsciously realize the tinnitus was not anything to be alarmed about and to just automatically ignore it. 

However, the Neuromonics device was crucial in giving me a sense of control over the tinnitus.  I remember the first time I used it in my audiologists office I cried from the huge relief that just not hearing my 4000 Hz tone for a few minutes gave me.  It was like magic.  I could escape that tone whenever I wanted and just listen to the calm classical and new age music that the device played.

I followed the regimen for use of the device religiously.  It was my lifeline to sanity and away from the continual panic attacks that T&H caused.

Over time, a few weeks, I could tell the tinnitus was ramping down.  And when it ramped down my panicky reaction to loud sound also decreased.

Within a few months the tinnitus was basically just a low background sound that I could ignore.  And the hyperacusis just stopped, which made sense as mine was linked entirely to the tinnitus.  And my agoraphobia also went away.

After that, I could go to loud bars and restaurants again.  Went to some raves and concerts (but wore hearing protection).  Could go into a loud action movie in a theater and not have a panic attack.  I could go to sleep easily again and not wake up 10 times in a panic.  My overall anxiety also stopped.  I went skydiving.  Learned how to live life again.  

So I didn't really do just one thing.  I did do several things as my problems were all related to each other.

I have to give a ton of credit to the audiology department at the University of North Carolina in Greensboro as they gave me so much real support and understanding through all this.  The other audiologists I went to were jerks and gave me absolutely zero hope of getting better. UNCG-Audiology were the ones that I got the Neuromonics Oasis device through, and I had all these followup sessions where they helped me understand what was going on and how it could get better.  They were AWESOME.  BTW, I still have the device and still listen to it every now and then if I'm feeling stressed due to anything going on in my life.

I hardly ever hear my tinnitus now.  I have to listen for it, even in a quiet room, and if I do, it causes no stress or anxiety.  If I have a bad head cold it comes back real loud, but I'm not alarmed by it, so my anxiety doesn't peak, and my hyperacusis doesn't come back.  Sometimes if I'm at a loud concert or band, I'll get a smidgen of the hyperacusis for a day or two, but again, I just know it's no big deal, ignore it and my brain filters it out and I'm good again.  So, I'm not "cured", it's more like a remission, but in no way do I consider it a problem in my life.  It's just a minor inconvenience, like having nearsightedness or flat feet.  A complete reversal of how I started with it 5 years ago where I was suicidal over it.

I hope this gives you some information that's helpful.  Neuromonics is something to consider, in my opinion.  I hope you get better, Emily.
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