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Discussion:
Neuromonics or TRT??????
Watch this 
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Hey, there is a web blog out there of a man who tried Neuromonics out of desperation and he feels way worse:

http://www.neuromonics-danger.com/s...

Having an audiologist who barely knows what he or she is doing could actually hurt us -

This is part of our battle -

Look at his symptoms and how he got worse -

I am hoping no one repeats this guy's history - we are suffering enough -

Let me know what you think

Are you doing Neuromonics and getting better?

A person I will be seeing for TRT is gagaga over Neuromonics - they think it is the cure -

Man, I am scared - I may have to leave the state to get good TRT

This is a biased post so please - any information is power - and opens our eyes

Mandie
Posted on 05/22/09, 10:23 am
42 Replies | Most Recent Add Your Reply
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Comment:
Email me when others reply to this topic help
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Reply #1 - 05/22/09  10:59am
" Mandie,

I don't know if I'm right or not but when I read your posts regarding TRT I get the feeling that you are pinning all your hopes on this one treatment working. Maybe because of the amount of money it will cost you and that in itself is a big worry because it's so expensive.
I hate to think that because you are so desparate for this to work, that it might have the opposite effect. I think you need to make an informed choice on which treatment would be better for you and go with that.
Just because a treatment hasn't worked for someone else doesn't mean it won't help you. I think also that your state of mind has to play a very big part in how you deal with your treatment. I would imagine that you have to have a positive mental and emotional attitude or this is not going to work. TRT I believe is the best way forward for T sufferers. I do believe it's an emotional response that makes T worse. If you go into this with a negative view you may be not allowing yourself to be as open as possible to the very therapy thats there to help you.

I am in no way an expert on this at all. I just felt that you were stressing about the whole thing before it had even started.

Best wishes mandie. You will be ok I'm sure of it. "
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Reply #2 - 05/22/09  11:30am
" Mandie,

I tried neuromonics last year and my T was made worse by it whenever I used it, and I returned the device. I believe it is due to my reactive tinnitus. I didn't want to take the risk. The device was also unable to blend with my tinnitus at all during phase 1. It appears TRT has a longer track record than neuromonics, but it takes longer. The problem is that a 30 day trial for either approach isn't enough time for one to notice the benefits. I can tolerate my behind the ear sound generators better than the sond from the IPOD like TRT device. The sound tracks do get old after a period of time.

I talked to Dr Jack Vernon, a noted authority on tinnitus about neuromonics, and he said he will not endorse the device, since all the clinical tests have some one involved who works for neuromonics. Until they get a totally unbiased clinical test, he won't endorse it. I don't think he's a big fan of TRT either.

The noise generators do provide a sense of relief for me, since you get used to the noise they make and you wear them all day exposing your brain to the stimulus longer.

I guess the folks who get benefit from the device don't post on tinnitus forums. An audiologist in Nashville said she had a hearing aid patient that uses it during the evenings after he takes his hearing aids out. "
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Reply #3 - 05/22/09  11:39am
" I have to agree 100% with Macken on this. It's all about the reaction and your emotional preparedness.

Jesse "
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Reply #4 - 05/22/09  2:36pm
" I appreciate the feedback. My tinnitus in the last month went way higher in pitch. I have tried many herbs and pharmaceuticals - it sounds like a tea kettle.

The lady I am going to see - right now she is really excited about Neuromonics and she has advertised in our local paper about it curing tinnitus.

I am hoping that I can be like Jesse and others - to stick with the TRT and not get talked into Neuromonics.

I think what makes Neuromonics attractive - it is a shorter duration in treatment and all you have to do is sit with an ipod hooked to your pants two or three hours a day and then put it in a drawer and go on your way.

I tried so hard to find positive reviews for Neuromonics - but I could find no independent testimonies on it - the testimonies were always connected to a particular audiologist or Neuromonics representative so called publishing the raves from happy customers -

but I could not find any independent observation on its success - but it has only been out for less than three years

So I started this thread to see if tinnitus sufferers surfing the web would catch on and post how they did with Neuromonics - because that would be independent of the Neuromonics people.

I am trying and also praying to find out all I can before I get in front of that woman and right now - I could get talked to anything -

So I wanted to have my facts straight so I would ask the right questions - like why would an audiologist want a person to do Neuromonics instead of TRT?

Why would Neuromonics work better? Is it a time investment? Is that what it all comes down to? Six months to a year - two hours a day versus 12 waking hours a day seven days a week - 18 to 24 months?

I can understand why people would jump on the Neuromonics train because they might think they will spend less time in tinnitus prison.

JESSE: How are you doing on TRT? I would love to hear about your experiences - I go to a TRT/Neuromonics audiologist in two weeks - I almost want to cut and run now -

If it wasn't a tea kettle -I would probably not do this. Thanks Mandy for talking to me - everyone is right about the emotional state of mind - I habituated to my first tinnitus - but this last round put me on my butt - I finally broke down and now will try to do TRT -

I just wanted to habituate on my own - that higher pitch that replaced the lower one - it feels like my head is vibrating - man, oh man, oh man.... "
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Reply #5 - 05/22/09  4:55pm
" Hey Mandie,
Right now, you have a signal lock on your T. You're like a seeker missle and you have lock. You're consumed by it.
So, as much as you say you've read about TRT, and the 200 or so articles/books, you ought to be prepared for the counseling session(s) that are ahead of you. You're going to have to take all that head knowledge you say you have and apply it. It ultimately comes down to BELIEVING it. Until you do, TRT won't do a lick of good for you. The WNGs will supply a measure of relief, but if you want to habituate, you have to believe that T is not going to hurt you. That's the essence of TRT counseling.

BTW, I'm doing alright. My ear is acting up today, but it's not a tinnitus thing per se. More of a blocked/full feeling that's bugging me.

Jesse "
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Reply #6 - 05/22/09  11:27pm
" MandieGrace,
I'll try to make this brief...
I saw a well respected audiologist back in early March. She both offered TRT and Neuronomics and has had success with both when mixed with counseling. Her name is Dr. Gail Brenner. She also advised to stay away from constantly visiting support sites...misery loves miserable company. Misery also loves helpful sympathic support for self-pity's sake. I'm not accusing you of this but beware. I think there's a several reasons live support groups meet only once a month or once every three months.

The fact is that you probably know more and have done more research on tinnitus than most if not all audiologists. By contributing to and visiting these sites you have real valid experiences from many real tinnitus sufferers. Guys don't usually say this to girls (assuming that I'm a guy and you're a girl) but go with your gut. TRT is more proven than Neuronomics and this is what your gut tells you.?... My gut is telling me that the tuna with the roasted peppers was not the wisest choice for lunch today. Plain brocolli and plain carrot sticks might have been a better choice but so would have not playing guitar in a rock band in my youth.

I have a mild spinal cord injury since 2001. I'm far from diasabled. I thought that my symptoms were terrible and I couldn't go on... A neurologist who was a friend of a friend said something like this to me years ago, "Did you see the people in my waiting room(severly disabled)? I know I'm not supposed to minimize a patients suffering but because you're a friend I'm going to say...what is it to that young woman with parkinsons that you can't swing a golf club as well as you used to and your leg burns when you wear jeans?"

What is it really that my ears ring. I can hear that high pitch "eeEeEEee" while standing with my feet in the ocean, waves crashing, and sea gulls singing. I hardly notice the sirens of the cops coming to get me because I'm in the full "monte" and didn't know I was not on that kind of beach.

Really, for too long I thought my tinnitus was worse than it actually was and now I might think it's better than it is, but I'll choose thinking better. It ain't easy and tinnitus is a huge daily hurdle for me and I have a limp. I wear an ear masker (like TRT) and if I have to wear this for the rest of my life, okay. TRT probably will not work so well for me because I've had tinnitus for about 30 years. I wear the maskers because I find white noise more pleasant to listen to. Maskers or combo maskers with a hearing aid maybe of real benefit to you. Maybe rTMS or a future pharamcutical may be of benefit to you. I think you're really half okay and maybe you don't know it but you're on par with the rest us humans (only that you hear a different soundtract to your life than most, so do all of us)...

I hope something here helps you. "
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Reply #7 - 05/23/09  11:26am
" Thanks for taking the time to speak to me. When I decided to do TRT - I realized that it would be at least $6000.00. When I realized that Neuromonics is competing with TRT and that audiologists are pushing both - I realized that before I sat down with this woman, I had to figure some things out because I can't try out Neuromonics - let them take $5000.00 from me and then come back and try TRT and give them $6000.00. The money is just not laying around - I once daydreamed that if I was rich, I would do both at the same time -

But I will have to go into debt to do this - I guess i am worried about compromising financial health chasing a dream....

So I started researching the heck out of this - because I figured that once I agreed to this therapy - I would have at least one year - 12 months - of doing everything I am told even when it is driving me crazy.

I don't think the tinnitus sound hurts me physically - but by the end of the day, I feel so exhausted and have a headache every night - I notice my brain loves the sound of a running faucet, the generator in the fridge and a box fan - if I give it one of these things - during the time I have the sound going, I will not hear tinnitus -

But if I sit in a quiet room with my family to watch a movie - it is louder than the TV - it is louder than music I listen to - etc., etc.

I have tried to understand what my brain wants - you know - because it really goes for some things - while only be annoyed by other things.

I have a significant hearing loss in both ears - of high frequencies - I cannot hear them anymore - so I keep wondering -

Is my brain desperately trying to compensate for its losses - is it annoyed with me because I have not done anything to help it?

So, anyway, I am trying to prepare myself for TRT - I understand from some people - that walking around with those WNG's all day - the brain wants out of the procedure - some say when they survive to week 12 of the whole thing, they suddenly started to see why this could work -

I look forward to the counseling because NO ONE I have seen so far has wanted to talk about it - they said it's because you're going deaf - now wear your hearing aids and get on with life - I was in and out of every doctor's office I ever saw including the best ENT's here - they wanted me out fast once they pinpointed my hearing loss - even my audiologist said, "most people adjust - so will you..." He even said, "I know how this can happen that is why I wear ear protection on everything..." I have left all these offices $100.00 poorer and even more depressed

My family won't left me talk about it anymore - the subject is changed the minute I get on it - I have stopped talking to anyone about it -

I quit going to church, quit going out and things are just getting worse for me emotionally - so I am hoping I get good counseling about this -

I come here a lot - you guys are the only ones who will let me even talk. "
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Reply #8 - 05/23/09  1:39pm
" Mandie,

If you have hearing loss in both ears, a good TRT clinician will provide you with combo devices that will provide you with a hearing aid and WNG.

Jesse "
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Reply #9 - 05/23/09  5:03pm
" Absolutely Jesse, that is why I held off on TRT - my local audiologist told me that did not make digital hearing aids with the white noise - they only made the old fashioned ones - I knew I had to have a good hearing aid because without them - I see your lips moving and I miss half of what you say - can you imagine me trying to function in the world always saying, "what?" "what?" and then try to watch a movie with the volume on 30 while everyone else thinks 17 is comfortable - you are at odds with the hearing world when your hearing goes - everything is constructed for good hearing - so I researched getting a digital aid with the white noise - and found a person in Houston who then contacted her dispenser and they have a TRT person here in South Carolina -

So the whole thing before committing to the counseling - driving two hours each way - investing in the instruments - I have to hear properly - you forget how much good hearing serves you - you go to teacher meetings, you answer your door, you answer your phone, you go to the movies - you go to church - you have dinner with your friend - and with my loss - human speech becomes unintelligible - so what you do when you don't have your aids - is you are always looking for ways to wing it - and fake it - but people pick up on it - "you're deaf!" So yeah, I have to invest in the right instruments right off the bat or this will be even harder -

Can you imagine just hearing the white noise - you're already deaf - and now you can't understand anyone? That would put someone close to throwing in the towel for sure -

So Jesse's right - I have got to get the combo - even driving is dangerous when you don't hear properly -

But I have been trying to educate myself as much as possible - because I want to figure out what is my personal best - what is best for me to do - and I can't just throw money at this and then not follow through or cut and run and try something else - I think also, if I do this right - I will probably succeed -

A couple of articles I have read have emphasized you have to follow the protocol carefully - you can't do something like this halfway -

I would like to thank everyone who has written me - you know- and shared with me - because I wanted to mentally prepare for this - I understand all the appointments - the WNG's in your ears - the psychological refocusing - the whole nine yards take an investment -

I try to think of this whole thing as sort of like other treatments - sometimes you get worse at first to get better later - that is why I have looked into it so thoroughly -

God bless you guys, Mandie "
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Reply #10 - 06/04/09  11:45pm
" I have been using Oasis device for 3 months. The first thing I noticed was that the ringing became equal in right and left ears. It has always been louder in the left. Somehow this felt better. Kind of like a balanced stereo. My T is very high 12K which is about the upper limit for using this device. It certainly helps when I am wearing it. The music got a bit tiresome but then I just stopped noticing it. So at this point I am pretty positive on it. "

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