Neuromonics

Discussion in 'Treatments' started by Markku, Mar 29, 2013.

    1. Grace
      No Mood

      Grace Member

      Tinnitus Since:
      11/14/2013
      It doesnt cure tinnitus, it trains your brain to habituate to the noise ( get use to it) to where its no longer an issue in your life. Its not gonna do anything along the lines of getting rid or toning down the noise.. Maybe some says it does but thats cause you will get use to the T that even though its there you can ignore it. ---- you should consider TRT which is based on the same concept except its like a counseling session and with a doctor that will help you through it.. Maybe give you some meds along the process and other stuff to train your brain to ignore it. I would never spend my money on a device thats like a mp3 player that i could make myself.
       
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    2. SickoMicko
      Arsewit

      SickoMicko Member

      Tinnitus Since:
      06/02/2014
      Cause of Tinnitus:
      Ear infection or the medication to cure it.
      Just to divert the subject matter a bit, I have a question that has probably been asked many times already. I am a novice at the condition called tinnitus. Unfortunately, though I've only had it for 6 months ( which seems like a lifetime), I have been told I have severe reactive tinnitus. So I got talked into purchasing the "only device known to mankind that can actually help minimize tinnitus and it's horrible side effects". Well I've been using the device for 5 months and it seems like my T has gotten a lot more creative. I went from 2 sounds to 6 or 7, and the volumn on all of them has amped up. My question is....Neuromonics scam or real science? This puppy cost a lot of money, that doesn't appear refundable if it doesn't work.

      I have this sickening feeling that you are probably right. Desperate people do desperate things. That's one of the things that pisses me off about the whole deal. There are vultures out there (professional and film flam), that prey on tinnitus sufferers because they feel so hopeless. Why can't some big brain figure out a cure for this plague?
       
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    3. beemovie

      beemovie Member

      Location:
      USA
      Tinnitus Since:
      Nov 2013
      Since there is no cure there is really nothing else but to try things that may or may not work. There is a reason that insurance wont pay for it as you may know.

      They charge whatever the market will bear.
       
    4. SickoMicko
      Arsewit

      SickoMicko Member

      Tinnitus Since:
      06/02/2014
      Cause of Tinnitus:
      Ear infection or the medication to cure it.
      This is not a reply to anyone, this is a question. Being consumed with the fact that (as I'm sure all of you who visit this site are), I have a very severe type of tinnitus. I've just need to know if anyone that has been talked into purchasing the Neuromonics Device, has gotten any (even the slightest) relief from using this iPod as prescribed? Have I wasted my time and money thinking this thing is going to really give me some relief? Please let me know, I'm a big boy I can take it (well maybe not). Mick
       
    5. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      Scam.
       
    6. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Hey @SickoMicko
      This is something I posted on a previous thread a month or two ago. Pretty much outlines my experience. My last appointment is in two weeks.
      In a nutshell: While I am somewhat improved, still wonder if it really was worth the very large sum.




      Hi @@amandine: Sorry, I am just picking up my alerts now. I don't come to the board quite as often as I used to.

      So Neuromonics (and I am happy to answer any questions, no problem). The below basically is my opinion and my experience; others may have had different results and different opinions. Quick background: I have tinnitus in both ears, started in June 2013 following barotrauma (due to an untreated sinus infection) experienced during a long distance airplane flight. My tinnitus triggered extreme anxiety and panic attacks, although I had no prior panic disorder history.

      I started the Neuromonics program at a university clinic near me in late November, 2013. It was expensive: about $5,000 USD. My insurance did not cover it. The program runs for a year, so I will be finished in early December. I think my audiologist and the staff has been top notch. I have the Oasis device, the top-line one.

      Here are my thoughts regarding your questions, and some others you might ask:

      Did it help?
      Yes, I think so. They do repeat tests as you go through the program (I will post the numbers when I am finished in December). Mine show my disturbance level, pitch and loudness perception all have dropped. My anxiety levels have dropped to the point that I no longer take day time medication (only rarely, as needed, and my night time dose is very low). I am less conscious of my tinnitus during the day, it just doesn't bother me as much. And on days when I find it annoying, I listen to my device and it calms it down.

      So is this all due to Neuromonics? Or simply the passage of time and natural habituation? I'll never know. Part of me believes that with some do it yourself sound therapy, this would have happened on its own. I think one thing Neuromonics gave me was some sense of control, the feeling that I was helping myself. That's pretty important in T's early stages, when you can't grasp how this awful thing has happened to you. But there probably are other, less expensive ways to achieve that feeling.

      Did I have the counseling with Neuromonics? Yes, I did. And it was helpful. But I will say that the counseling component of Neuromonics is not what I hoped -- and I went to a good provider. Your sessions get pretty far apart as you progress in the program and most of the counseling deals with coping tips and tinnitus education; it's not true talk therapy. I know other people who got their devices through their ENTs that said they were just given a short first lesson, handed a book and told good luck. I coupled my Neuromonics treatments with doing cognitive behavioral therapy (CBT) with a psychotherapist on my own (and at my own expense). I think that was critical for my success.

      Have I been in the program for long? I committed myself to a full year when I started and recommend others do the same. Two, three months is not enough time to figure out if the program is doing you any good; I was at almost three months before I noticed any difference, and my audiologist told me I progressed more rapidly than some. And you already have paid for the program in advance. I suggest sticking with it.

      Do I feel like I have habituated with Neuromonics? I feel like I still am working on it but getting close. One thing to remember: Neuromonics WILL NOT make your tinnitus go away. My audiologist was very clear from the beginning that was the case. You still will have days were its annoying and you wish it would go the hell away. I will say that Neuromonics has helped me manage my tinnitus much better. I am able to do pretty much everything I did pre-tinnitus. But if a cure or even something that gave me decent noise reduction came along, I would take it.

      Should YOU try Neuromonics? Can't answer that. I think it all depends on how much it bothers you, the type of tinnitus you have, if you have the money, if you feel capable of first trying your own program with some DIY sound therapy and CBT. There are no large, independent clinical studies that show Neuromonics works. On the other hand, there aren't any such studies showing success with anything else. I think its a matter of deciding where you want to put your treatment money -- or if you would rather save and hang on for something more promising. Sound therapy, in my opinion, can take you only so far.

      Sorry this is so long! Hope it helps. Feel free to PM me if you have any more questions. Good luck. You still are very new to tinnitus and I am confident you will find something that will help you.
       
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    7. Paul Fisher

      Paul Fisher Member

      Tinnitus Since:
      2010
      Dear Folks -- I'd like to reply to all postings -- PLEASE don't waste your money on Neuromonics. I did the whole trip -- $5000++ and 24 months of "treatment" for absolutely zero benefit. The only published research on it is from studies by the product inventor. The Cleveland Clinic study affirms it no better than any other sound therapy.
      4 years of TRT with sound generators/hearing aids have delivered 2-3 noise free days per week now. Progress is non-linear and may not ever be completely free of the malady, much much more manageable with TRT.
      IMHO, Neuromonics is a complete scam in pricing, product, treatment claims, etc. if anyone wants to buy mine it's in pristine condition in my closet. But good luck trying to get anyone to "program" it especially for your frequency, etc.
       
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    8. I began using the Neuromonics Oasis in December. 2014 as a treatment for severe pulsitile tinnitus in my right ear. I initially experienced some relief, but the volumes were set profoundly different in each ear, the left being over driven if the master volume was set high enough to be audible in the symptomatic ear. The volumes were adjusted twice by the prescribing audiologist. I used the device daily according to instructions (2-4 hours per day), but began experiencing tinnitus at a much higher pitch and volume, now in both ears. I brought this to the attention of my audiologist and was told to continue using the device as instructed. My tinnitus continued to intensify, with the addition of increasing hyperacusis. In January 2015 I received a positive diagnosis of displacement of my right cochlear nerves by a vascular loop coursing through my auditory canal. Neurosurgery was recommended. In February 2015, I sought a second opinion from the a staff audiologist at Neuromonics, Inc. She advised me to continue using the device. I contacted the Neuromonics' staff audiologist two more times, and was told the same advice. I concluded independently to cease using the device. As of this writing, my tinnitus is now established in both ears at the pitch of a high pulsing screech, and I find everyday sounds such as crumpling paper or children's voices extremely painful. On February 25th, I contacted the CEO of Neuromonics, Inc. (Eula Adams). He pointedly refused to answer any questions about the device or his company's sense of responsibility, but did state that he, himself, would have recommended that I continue using it, even after I explained the adverse effects I was experiencing. The retailing audiologistics does not provide any contract of services or purchase agreement for the device. The CEO stated that refusal to issue a contract or purchase agreement was of no concern to him, before he hung up on me. He was shouting at me throughout the conversation, and frequently interrupted me to restate his refusal to answer my questions. I have concluded that this device has done me serious harm, and is potentially harmful to a select group of other clients who have not been singled out by a differential diagnosis. It is marketed as a one-size-fits all model incapable of doing harm under any circumstances of it's use. It is a class 2 medical device that is FDA cleared, even though the Neuromonics press releases often say FDA approved. For the price tag of $5000, it is apparent that the audiologist and the company are only concerned about a profit, and are not concerned about helping people with this terrible affliction. Dealing with Neuromonics, Inc. rates up there with one of the worst experiences of my life. I am scheduled for neurosurgery to correct the artery pressing on my auditory nerve, and I only hope that Neuromonics has not done lasting damage. I advise caution if dealing with Neuromonics or any audiologists recommending it.
       
    9. DebInAustralia
      Fine

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      I am sorry for your experience, but could you clarify something for me please?

      how exactly has neuromonics CAUSED or WORSENED the underlying structural defect in your ear?

      thanks
      deb
       
    10. sanjay doodani
      Amused

      sanjay doodani Member Benefactor

      Location:
      New Delhi India
      Tinnitus Since:
      July 2014
      Cause of Tinnitus:
      Suspect vit d deffeiciency stress high bp ,prediabetic, high stress
      As I know neuronomics is not effective in pulsuative tinnitus
      But this condition is treatable
       
    11. My pulsitile tinnitus is not the typical kind. It is actually a high-pitched ringing that is caused by an artery pressing on my auditory nerve and displacing my vestibular nerve. It is not a "whoosher" It is a screamer. It has been made worse by raising not only the pitch of the noise, but also the loudness, after using Neuromonics for two months. It has not yet returned to pre-Neuromonics levels. I believe because Neuromonics is programmed to an audiogram, it is programmed to where I have hearing loss in the 8000hz range, where I had no tinnitus. My original tinnitus was measured at 4000hz, where I had no hearing loss. I am now getting high-pitched screeches in both ears, where I had none before. My audiologist and the audiologist at Neuromonics say this is normal. If this kind of misery is normal, nobody would do Neuromonics. After being treated abusively by the CEO of Neuromonics, Eula Adams, and getting the real picture of their business model. I would not recommend Neuromonics to anyone. Knowing that I was scheduled for brain surgery in three weeks, he told me that he had no empathy for me. He also said that if they refunded money they would go bankrupt. He then refused to answer any of my questions. I said then you have several dissatisfied customers? He shouted me down and when I said, I just have one more question for you, and he hung up on me.
       
    12. I might add that I went for over a year with every practitioner I saw telling me, well you're just going to have to learn to live with this. One simply does not live with a car alarm going off in one's head. Nor does sleeping with a fan begin to put a dent in the trauma. If not for persistence and a neuro radiologist who wanted to take a closer look, I would still not know the cause of my tinnitus. It demonstrates the vulnerability and desperation by which one gets drawn into various scams. This desperation led me to Neuromonics, which only made my condition worse. If one checks out the FDAs Maude Alerts, there are others who have experienced adverse effects from Neuromonics. The Neuromonics company employees, and my own audiologist, kept telling me it was completely safe. However, any medical device with FDA clearance at class 2 does have some risk.
       
    13. If you are thinking of trying Neuromonics make sure you get a purchase agreement from your provider that says . . . "I realize that I am paying a lot of money for this device, there will be no refund, and I accept that this may be a scam." That way if things go south on you, you won't lie awake at night being angry, which will only make your tinnitus worse. :)
       
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    14. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      I think you nailed it about differential diagnoses. These devices and theories behind them are not always going to be appropriate for every case as tinnitus is a symptom of underlying disease, but the question is always which underlying disease? You at least know where your primary tinnitus originates from. I wonder if the device was inappropriate to your needs and thus brought on another tinnitus originating in a new location?
       
    15. PaulBe That is exactly what I have been thinking! I think Neuromonics was inappropriate for me and brought on a new tinnitus in a different location. And when my diagnosis came through, all of the Neuromonics people kept saying keep using it, without a second thought of re-evaluating my situation. My desire to stop and re-evaluate created significant irritation and hostility from the people at Neuromonics and my audiologist. All the while they were saying it was perfectly safe to continue use. This is more suggestive of a market-norm than a patient-centered relationship.
       
    16. SickoMicko
      Arsewit

      SickoMicko Member

      Tinnitus Since:
      06/02/2014
      Cause of Tinnitus:
      Ear infection or the medication to cure it.
      svintegrity, and LadyDi, you have both hit the mail on the head. I, too, started with a single low whistling sound at moderate level. My Audiologist suggested hearing aids which helped somewhat, but didn't completely eliminate the whistling (cost $2600.00). Starting to panic, I asked if that was all she could do for me and my condition. She said that there was this new device called Neuromonics (the only thing that could help me) ,and they have been having great success with it (cost $5000.00). I was ready to pay any amount of money to get rid of this torment. What should have tipped me off was the return policy which returned all your money less 10% if it's returned within 30 days. The tip off was that I couldn't expect anything positive until at least 2 months of use. I was properly hooked for the $5K. Since using the Neuromonics iPod, my single moderate whistle has turned into 6 different sounds (at 8-10 V) and I developed severe hyperacusis. This all happened within 9 months of using the thing on the prescribed schedule. I don't believe it's made things much worse for me, I know it has. And the Audiologists are just as guilty as that CEO you posted about in this sham. I would love to speak to this dick myself, and start a class action law suit that would bankrupt his ass. Then he wouldn't be able to steal anyone else's money. And I'm sure the Audiologists get their percentage. I haven't even had the follow up testing like you're suppose to get to see your progress (which in my case is very unlikely). My iPod even has a glitch where it frequently starts out loud and full of static. When this happens they tell you to turn it off and start again. The whole thing sucks, I would have done better taking the $5K out on the highway, roll down the window, and tossing it out the window (all tens). So for anyone considering getting one of these uber expensive iPods please contact Mick or svintegrity, I'm sure either one of us will make you a great deal on one. Mick
       
    17. Mick, as you know, I too, have developed severe hyperacusis and new tinnitus frequencies from using Neuromonics. Here is one thing you can do: Google: medwatch voluntary report, on the very top of the list should be medwatch voluntary report-food and drug administration, when you click on that it will take you to the medwatch voluntary reporting form. On the right hand side of the screen, click on consumer/patient, and that's where you begin to file a complaint with the FDA about Neuromonics and its adverse effects. I have done this, and that is what gets it on the record where it needs to be. This web address might work: https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=consumer.reporting1

      The Neuromonics CFO, Duane Knight, told me that Neuromonics charges $2540 for the device, and whatever is charged above that goes to the audiologist. I doubt he was supposed to divulge this information, but hey, it's out there now.

      When it came to cracking and popping sounds from my device, my audiologist told me the same thing--turn it off and on again. For $5000? Maybe we should have thrown the money out the car window all in one dollar bills, but then we might have been fined for littering, which might not have been good for our tinnitus.
       
    18. Rog

      Rog Member

      Location:
      NY and Brazil
      Tinnitus Since:
      02/2014
      HI @svintegrity. I too have the same car alarm sound T. I have done lots of treatments and exams ex: MRI, MRA and Angiogram and so on... Everything cameout fine. How did you get to know about the artery??
      Thank you
       
    19. @Rog I have done many, many treatments, and have had several tests. The test that identified the artery was ordered by a neuro-radiologist, because the neuro-otologists and ENTs said there was nothing there. How can " nothing" cause the sound of a pulsing car alarm going off in one's head? I don't care what people say about habituation, one simply cannot habituate to this. It is too loud, and has not gotten better over time, but has gotten worse. Does yours pulse with your heart rate? Mine does. The test was an MRI Axial T2 FIESTA through the skull base and IAC without contrast with multiplanar reformatted images. These results show the importance of a differential diagnosis, so that people don't feel like a failure when their T does not fit the classic T mold (which is due to hearing loss), and when habituation is next to impossible.
       
    20. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      You did something a very smart person should have done. You asked questions. I think there answers speak for themselves.
       
    21. @labrat10687 Thank you for your kind response. I am posting about Neuromonics to help save others from experiencing what I (and others on this thread) have experienced. It can be harmful to some, and not many audiologists are aware of this fact. It has also done no good for people with a different form of T. A differential diagnosis is crucial, which is rarely done with T, by either audiologists or ENTs. Lumping tinnitus into one category is like lumping cancer into all one category.
       
    22. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      There really should be an initial audio test to see if the patient reacts to the sound and equipment in a positive way.

      Many people just aren't suited to audio therapy, given that Neuromonics is only one particular technique the odds reduce again. An initial assessment surely is able to determine this.
       
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    23. @Steve Agreed, but I don't think many audiologists are aware of this. I know my audiologist who CLAIMS to be THE expert in T & H (possibly in the entire nation, I live in the US) doesn't even agree that I was having adverse effects from Neuromonics. She says that nobody has ever experienced this reaction before in all her years of experience. I told her that it only takes one case to prove a possibility. I am still struggling and hurting quite badly from the treatment, and I haven't returned to pre-Neuromonics levels. Far from it. And I am changing audiologists.

      I see you are from York. My daughter spent five tears studying at the University of York. She is a musician and loved it there.
       
    24. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      I know 2 people that went the Neuromonics route and both it did not work. I did consider it many years ago but everything I read about it the results were very fuzzy. I would have done it if it would have had some positive reviews.

      I stuck with a $25 Mp3 player and the Moses/Lang masking CD. Less than $50 invested. When my tinnitus did settle down(it became much quieter and by the way loudness does matter in my case)I what they called "habituated" with ease. When my tinnitus first started never heard of the word.

      Fact is tinnitus is not the same for everyone and as you say lumping tinnitus into one category is well just wrong. So whatever people decide what to do about their tinnitus is an individual choice. Might be the right one but who knows. I just decided I was not going to try the next $5,000 therapy that came along unless it had some decent results.
       
    25. @labrat10687 Good choice on your part. Desperation and vulnerability drove me to try Neuromonics. I am still struggling and suffering from the treatment. I am glad you "habituated" with ease. My best to you.
       
    26. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Yeah it is a great little city, lots of history which makes it interesting. It's really small but very full of things, you can walk one end of the town centre to the other in under 20 minutes.

      I would definitely change the audiologist. There is every reason to say that sound therapy can't hurt you, it seems logical to somebody who wouldn't know any better, just not to an audiologist though. Things is that plenty of people have reactive tinnitus and others end up becoming reactive depending on sound situations (such as constant exposure to a repetitive sound), it's just not an accurate thing to say.

      I had a really bad response to the ANM trial, wouldn't think it possible but I did. It's only sound so why should I have got worse tinnitus and experienced horrendous hyperacusis all over again. Doesn't seem to make sense but it happened.

      Think I have said it on this thread but there are 3 trials for the device I believe, all conducted directly by Neuromonics with poor controls.
       
    27. labrat10687

      labrat10687 Member

      Tinnitus Since:
      2000
      I did habituate for almost 4 years then August of 2009 it came back. I just woke up and there it was. I thought here we go again. And it's been quite the circus ride since then.
       
    28. @labrat10687 Sorry about the circus ride. I understand. Do you have any ideas why it came back? What are you doing for treatments at this point?
       
    29. @Steve I did notice your posts about the Neuromonics trials, by the company itself, with poor controls, which is why I joined this forum in the first place. I only wish I would have seen your post before I paid $5000 to be put through pure torture with their little device. You can't even find out what they are pumping into your ears, because it is "proprietary information." But as I have said previously, Desperation and vulnerability drove me to it. If standing on my head for a solid month would help, I'd do it. I just didn't expect it to do so much harm. I have reactive tinnitus, and it becomes worse when exposed to a repetitive sound situation.
       
    30. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      That's exactly the thing for me. Anything repetitive is bad for my ears. Maybe it's linked to an irritation with a sound or simple phrase that plays over and over without any structure or beauty to it, I don't know.
       

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