2 1/2 Years and a Ruined Life

Discussion in 'Support' started by FlyFish, May 1, 2015.

tinnitus forum
    1. FlyFish

      FlyFish Member

      Location:
      Western US
      Tinnitus Since:
      10/2012
      October 30th 2012, 1032 AM while driving to work the switch flipped on. An electrical buzz in the right ear piercing into the brain. Intermittent but every other day. Competitive...try and drown it out and it gets louder. Intractable insomnia. SSRIs and SNRIs with horrific side effects and now in severe benzodiazepine tolerance withdrawal and a dysregulated CNS so bad that a neurofeedback specialist is surprised I can even walk. Brains blown out by psych meds. Now having to consider disability. My body and life falling apart. A hard-charging overachiever with a fantastic career now unable to concentrate or sleep without drugs. Mayo Clinic can't help. I would sever a limb to end this.

      I really need to treat this. Local audiologist says Neromonics Oasis at $5K is the best solution. I'm about to just pay and get started. What can I do to manage this suffering? Sorry for the outcry but I need help. Losing the battle.
       
      • Hug Hug x 3
    2. NiNyu

      NiNyu Member

      Tinnitus Since:
      29/12/2014
      Cause of Tinnitus:
      barotrauma? stress?
      @FlyFish , T is the worst ailment in existence. We need a real treatment.

      Don't waste 5k on a placebo. It's nothing but masking.. which you can do for free. There are plenty of youtube ambient sound videos.
       
      • Agree Agree x 4
      • Helpful Helpful x 1
    3. Vincent R
      Inspired

      Vincent R Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma
      Paying 5000 dollars for a Neromonics Oasis surely is the best solution, but only for the company you will be paying the money to. I'm completly with @NiNyu on this one. Considering what you can do otherwise, I'd say keep existing. Some people seem to adopt to this T-tourment with time, and you'll just have to find out if you're one of them.
       
      • Agree Agree x 2
    4. FlyFish

      FlyFish Member

      Location:
      Western US
      Tinnitus Since:
      10/2012
      What about Audio Notch? Zen device or other options?
       
    5. Vincent R
      Inspired

      Vincent R Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma
      Audio Notch is pretty much the same thing, to my understanding, and I've never heard about any "Zen device" before, but it sure as hell sounds like another case of snake skin oil. You won't appreciate this advice, but what you can try is to help your body to keep going by living as healthy as possible. Either things work out in the end, or they don't. But all you can do about it is to wait and see, so it's kind of not your responsebility anymore. You can lean back and and just observe, as it's nothing more than a movie. I also strongly suggest that you take time to read the thread I've already recomended you:

      https://www.tinnitustalk.com/threads/meditation-practice-to-deal-with-tinnitus-suffering.8165/

      I understand it might not be your cup of tea, but I created it specifically for people in your situation, and together with time and temporary use of medical drugs, I think it would be your best bet.
       
      • Like Like x 3
    6. @FlyFish I agree with @NiNyu and @Vincent R . I was talked into buying a Neuromonics Oasis by an audiologist who said it was the best technology out there today for tinnitus. I was desperate, so I paid cash up front to order the device -- just under $5000, not counting the audiological exam.

      The Oasis not only made my tinnitus worse, but it gave me high-pitched screeching sounds in both ears (my T was unilateral) and severe hyperacusis. When I explained this problem to the audiologist, she told me to keep on using the Oasis. She said this could not possibly be happening, because she had so much experience with this device and had never seen it before. Wanting a second opinion, I called the audiologist at Neuromonics, who also told me to keep using the device. I later learned that the audiologist's title at Neuromonics is "National Director of Sales and Marketing."

      Thinking that Neuromonics was a company that wanted to help people with tinnitus, I called the CEO of the company to see if they would refund my money because of the adverse effects. (The audiologist who sold me the Oasis had already denied my request for a refund). The CEO of Neuromonics told me that he didn't care that I was worse (his words "he didn't give a damn"), and if he refunded any money they would go bankrupt. He then continued shouting at me throughout our phone call, and refused to answer any of my questions.

      Before being shouted at by the CEO of Neuromonics, I spoke with the CFO, who told me that Neuromonics charges the audiologists $2540. (It looks just like an iPod). The music and setting are "proprietary information," which means you don't know what they are pumping into your ears, and neither does the audiologist. The audiologist pockets the rest of what he or she charges for the device. I don't think the CFO was supposed to divulge this information, but it really painted a picture for me that everyone involved in Neuromonics is only in it for the profit margin. It is a predatory operation. They prey on desperation.

      Not everyone has adverse effects from using the Oasis (there are only three Maude alert reports on the FDA's website), but not everyone may take the time to contact the FDA. The Neuromonics Oasis is FDA-cleared (not FDA-approved) as a class II medical device, which means there is some risk. On the other hand, many people do not get any benefits at all from the Oasis. The ones who seem to may have simply gotten better on their own.

      There is a great thread about Neuromonics on this forum. I recommend that you read the thread before making your decision. I wish I would have known about it in advance. Steve H has done a great analysis of the research that was done on Neuromonics. The research was done by the company, itself, with small sample sizes. https://www.tinnitustalk.com/threads/neuromonics.1378
      Oh, and by the way, I am still dealing with the hyperacusis that I did not have before using Neuromonics.
       
      • Informative Informative x 4
    7. Gr8fulDude
      Balanced

      Gr8fulDude Member Benefactor

      Location:
      Canada
      Tinnitus Since:
      07/2012
      Have you considered seeing an experienced TRT clinician? Seems to me that you might want to spend your money on that and the devices that go with it.
       
    8. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      • Agree Agree x 1
    9. RichL
      Inspired

      RichL Member Benefactor

      Location:
      Palmerston North NZ
      Tinnitus Since:
      1990
      Cause of Tinnitus:
      Acoustic trauma
      @svintegrity , My God that's shocking, I would find it real hard not to fly into a fit of rage over such a blatant misuse of trust by an audiologist!
      IMO, If these treatments cost allot of money, their should be a mandatory money back guarantee if the user suffers any adverse effects or if the treatment just doesn't work!

      At least with other ailments or surgery they tell you before hand what the chances of success are, and or what complications might arise!

      It's a pity that it all isn't under the same kind of legislation.
       
      • Agree Agree x 4
    10. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      Perhaps instead of "dealing with it" you should consider getting it evaluated and treated?

      I'm just sayin' ...
       
    11. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Maybe try Retigabine!
       
      • Agree Agree x 1
    12. stelar

      stelar Member

      Location:
      Wyoming, USA
      Tinnitus Since:
      10/1985
      Let me guess, by one of the 3 audiologist/TRT clinicians in the USA you will refer him to...
      Tinnitus is so hard to treat, only a couple know how. Its so hard to adjust white noise generators to just below the tinnitus sound and say Tinnitus is a benign entity.
       
      • Agree Agree x 2
      • Funny Funny x 1
    13. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      Excuse me? I was not talking about tinnitus, which can indeed be quite difficult to treat. I was talking about hyperacusis, which in general is relatively easy to treat. But what does it matter - any opportunity to get in a zinger, I guess.
       
    14. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      And let me guess as well, that, one of those might be hmmm... let me see... Dr. Gail Brenner?

      upload_2015-5-1_13-35-59.png

      I did a non-member specific search on the name "Gail Brenner" (i.e. not posted by anyone specifically), and the above list is what was returned: 15 times has the name been mentioned and only in one instance was the name mentioned by another member other than @Dr. Nagler ...

      Feel free to do a search or two for "Jacqui Sheldrake" or "Paula Schwartz"... :)
       
      • Informative Informative x 3
    15. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      @FlyFish I really believe that I almost lost my life to psych meds and benzos, and tinnitus is a big part of my story. I've been off all that crap for two years now, I still have the tinnitus but mostly I feel okay about it, and I have my life back.

      You're in really rough waters now and I really feel for you, but you can get through this.
       
      • Like Like x 1
    16. @Dr. Nagler I have had my hyperacusis evaluated. "Dealing with," in my case, means I am looking into methods of treatment. One being exposing myself more and more to everyday sounds. Dealing with an affliction can mean looking into the best treatment options, and getting information from others about how they treated their hyperacusis. It doesn't always mean just sitting and taking it, while doing nothing.
       
      • Agree Agree x 1
    17. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      Excellent.

      Excellent again. If I may ask, how long have you been looking into methods of treatment, and how is your hyperacusis now compared to how it was when you first began to look into methods of treatment?

      I could not agree with you more, my friend.

      Have a great weekend.
       
    18. @Dr. Nagler I have been researching and inquiring for a couple of months. Hyperacusis is a little better, but now seems more related to tinnitus loudness. Not avoiding every day sounds, while still protecting from loud ones, has helped.
       
      • Agree Agree x 1
    19. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      SV, if your strategy for addressing your hyperacusis is yielding positive meaningful lasting results, then whatever you want to call that strategy, I am absolutely all for it! And I am very happy for you.
       
    20. Easy to treat? What is your success rate Dr. Nagler?

      Just askin...
       
    21. See I have done that but my T is now worse and so is my H ( louder T means worse H for me)

      It's been almost 2 years for me.

      I am glad your H is better.
       
      • Hug Hug x 1
    22. awbw8
      Balanced

      awbw8 Member Benefactor

      Tinnitus Since:
      04/2013
      I'm neither a special fan nor detractor of Dr. Nagler's, but I fail to see what is so remarkable about a doctor recommending his preferred set of other doctors - it's fairly common practice. Further, 15 times is not exactly a grand amount between June 2014 and April 2015. His recommendations are his opinion - that's the nature of a referral, I'm sure everyone here can gather that.

      On the other hand, you have mentioned Dr. Nagler 126 times out of the total 323 times he has been mentioned by anyone on the forum (as it appears in the same sort of search you performed.) I suppose we all have our preferred doctors we like to mention at any given opportunity.



      @FlyFish I never tried neuromonics, but I did have an audiologist present it to me early on. I didn't end up needing it, but I would have tried it if that felt like the end of the line. It depends on what your financial situation is, if 5k doesn't feel unbearably painful, then give it a try, otherwise I don't know that it would be worth it to go into debt if that were the situation. You never know what's going to make you feel better, though. I know a Stanford educated engineer (very logical, fact-oriented guy) with T who swears by Arches Tinnitus Formula, so who knows? Sometimes just doing something can get us on the road to feeling a little better.

      Are you exercising and eating well? I know it sounds silly given the magnitude of your suffering, but it made a massive, massive difference for me after a time with sleep and depression. Maybe just give it a month of diligently eating whole, organic foods, lower the sugar, and exercise (break a sweat daily - even if it's just 15 min). See if it makes any difference at all - even if something make a tiny difference, that might be enough to give you the courage to make it to the next day and feel that another moment of change can come. Getting out in nature, volunteering and such helped me, too, once I got into a slightly better place. It's distracting and engaging - when I wasn't in a good place, I did those brain game things - like lumosity or what-have-you, even having 45 seconds of something that I needed to focus on that wasn't T was helpful at first.

      I know these aren't probably that large-scale treatments/advice you were hoping for, but they were little steps that helped me when I was at my worst and couldn't see the future.

      In the meantime, we're all here for advice and support. Please don't give up.
       
      • Agree Agree x 2
      • Friendly Friendly x 1
    23. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      Hi Lynn -

      Just so we're on the same page here ...

      When I say "easy to treat," we are talking about hyperacusis, and not tinnitus. Moreover, we are talking about properly diagnosed hyperacusis, and not some other form of DST that somebody is incorrectly calling hyperacusis.

      So with that in mind, if the hyperacusis is a secondary finding in a person whose chief complaint is severe intrusive tinnitus, the success rate is in the neighborhood of 95+% within four months. (It's likely considerably quicker than four months - but that's when I typically first see patients in follow-up.) If the person's chief complaint is decreased sound tolerance rather than tinnitus, then the success rate is probably closer to 90% within three months - but I'd really need to double check to be sure ... because as you may recall, the patients I am primarily interested in seeing are those whose presenting complaint is severe intrusive tinnitus (i.e., the 9s and 10s) and not decreased sound tolerance.

      I hope that clarifies more than confuses.
       
    24. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Which proves what exactly?

      I similarly did a search on the number of times my name has been mentioned by @Dr. Nagler and it came to:
      1. 71 times using @attheedgeofscience
      2. 14 times using ATEOS
      3. 5 times using my real first name...
      So that's 90 times in total (and I am no doctor...!).

      Furthermore, if you allow for a scaling of the total number of posts (@Dr. Nagler vs. myself) you will find the difference evens out...

      2020/1645 = 1,23 * 90 = 110...

      (The justification for the above is that someone who writes more posts - i.e. Dr. Nagler - would also be expected to be quoted more often, all other things equal...).

      Perhaps. But I also fail to see what someone who has written their own so-called success story...

      www.tinnitustalk.com/threads/the-light.5969

      ...is still doing on TinnitusTalk checking in pretty much daily a good ½-year later on. I would have thought such a person would have "moved on" by now.

      But perhaps you are just busy helping Team Awareness, Team Tech, Team Research, or Team Trobalt with important matters - now that you are finally over your own tinnitus ordeal?

      attheedgeofscience
      02/APR/2015.
       
    25. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      So bloody what ! let the man try to help people with his knowledge and contacts ... you do it your way ... but posts like this, and I have seen other alike before makes this forum look like kindergarten ... bullying is bad ATEOS ... very bad!
       
      • Agree Agree x 6
    26. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      There is a difference between someone having a conflict of interest in a specific treatment, and... someone who does not. I make no money from my presence here. Nor do I advocate a treatment which according to the Cochrane review received the following verdict:

      www.tinnitustalk.com/threads/why-trt-fails-people.6389/page-3#post-69632

      I also wonder why you would be willing to spend CHF +30,000 on the HIFU treatment if you are such a strong believer in Dr. Nagler's suggestions. Wouldn't it be easier (= cheaper) to go visit him, instead?

      Indeed in the Summer of 2013, you wrote in relation to HIFU that...
      ...it seems to me your six months are up (three times over): it's now Spring 2015...
       
      • Informative Informative x 1
    27. mermaid
      Irritated

      mermaid Member

      Location:
      Poland
      Tinnitus Since:
      10/2012
      Cause of Tinnitus:
      loud noise/acoustic shock/barotrauma/tmj/unknown
      @FlyFish - why aren't you going to try Acoustic CR or rTMS Neuromodulation? I've heard that there are really super effects thanks to this method. The doctor I've talked with said, that thanks to this treatment 70% ppl get totally rid of their tinnitus and 30% still have it, but it's diminished to minimal level, almost impossible to be heard. I'm going to try it soon. Has someone on this forum tried CR or rTMS Neuromodulation?
       
    28. NiNyu

      NiNyu Member

      Tinnitus Since:
      29/12/2014
      Cause of Tinnitus:
      barotrauma? stress?
    29. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Let's make every thread into the sane argument about TRT between the same two people, that will be helpful.
       
      • Agree Agree x 2
      • Like Like x 1
      • Funny Funny x 1
    30. awbw8
      Balanced

      awbw8 Member Benefactor

      Tinnitus Since:
      04/2013

      That's rather the point, none of it proves anything of any value that has not already been said. This is a place for support, but lately, so many threads have turned..
      We all know how you feel and we can see clearly his biases and opinions without repeated assistance. If anyone is not aware, you have both had similar arguments many times in varying threads, so it is unlikely to remain unknown for very long. You do many good things here that give, but this takes away. Please consider giving this particular campaign a rest.

      I find it unfortunate that you feel the need to call a success story or my coming here to try to help and support others into question. If you are (or anyone is) genuinely interested/concerned about my presence here or why I am not on a defined team, do feel free to send me a private message.
       
      • Hug Hug x 1

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