I've Had Chronic Tinnitus Since November 2017, and After 6+ Months of Research, I Have a Couple Tips

Discussion in 'Support' started by Jon Rhynard, May 2, 2018.

    1. NcName

      NcName Member

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      If it's truly coming from the brain in attempts to accommodate to sounds we no longer hear then this device would theoretically cure tinnitus.

      But no one has ever mentioned this or any product like it which leads me to my conviction that it is NOT coming from our brain.

      If any further evidence is supported take cases where the sound is audibly emitting from some peoples ears. How could the sound travel from the brain to the outer extremities of the ears? The answer is it could not.

      My best guess after research...testimonials and my own condition..is that tinnitus has much to do with our vascular system. Blood flow or lack thereof to certain areas that could include literally any part of the body (let alone our ears) is my best guess and I'm very convinced.
       
    2. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      Well, out of all of the anti-depression meds I've tried, the Klonopin for me, has no side effects. I've been on it for a couple months. I started at .5mg, but that was ineffective in the first week, so I upped it to 1mg at night, and I've been on that ever since. On the other side of the fence, Amitryptelene gave me suicidal thoughts. Diazepam got me to sleep, but I feel the effects of it all the next day, which is a problem in my job. I sit at my desk and drool.
      -Magnesium - I'm using a roll-on magnesium that absorbs through the skin. I roll it around my neck and all over my ears. It smells good, but other than that, hasn't seemed to make much of a difference for me. Maybe it's making a difference and I just don't notice it?
      -Melatonin - I should add that to my Klonopin. I have taken it in the past, but I wonder if it would help keep me asleep?
      I'm glad you found a cocktail that works.
       
    3. janet353

      janet353 Member

      Location:
      sacramento, ca
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      unknown (most likely severe trauma and stress)
      Hi do you have an update on LEVO?
      I'm new to this forum. I've have T for 7 yrs now. I had bad fatigue first, then Tinnitus started 2 months after that. I've had both now for yrs. Mine is also coming from the brain. :-( And I agree about sleep. If I sleep a lot I can (barely) manage this working a full time job. If I get less than 8 hrs sleep I have to call in sick.

      And yes alcohol helps and it's sometimes hard to know when to stop. 1-2 glasses of wine is enough. It's a nice break from the constant noise.
       
    4. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      I am now 3 months in and have yet to start. My update sucks, but here it is.

      I started on Levo, and the device stopped working an hour or two in, every night. I thought it was something I was doing wrong. Every night I would put the unit on, hear the frequency, and try to sleep. When I woke up in the morning, the tone was off, and the Levo was at the software's start screen. Anyway, long story short, it was because of an OS update, and I had to send the unit back. Although Otoharmonics has agreed to restart the timer, I still do not have the working unit yet. I did, however, discover some drawbacks that are angering me:

      1. Once you link your Levo to the therapist's tablet, you can only go to that location for the rest of your life. The parent programming machine cannot be changed. I currently need to do over two hours of driving during working hours just for a small frequency adjustment, even though my ENT has a location 10 minutes away from me. If I ever move away, I will apparently need to fly back to wherever the programming tablet is for future adjustments.

      2. I was told the earbuds were custom-molded and special. They are not. They gave me plain old iPod earbuds, which are uncomfortable, and fall out during sleep. Using this device requires me to sleep with uncomfortable earbuds while jamming an uncomfortable sound on top of the uncomfortable sound I already have. I've had to add diphenhydramine to the Klonopin in order to stay asleep. I may have to rig up a headband to keep the buds in, which will make me hot. Because of this, I have grown to dread this device when it's time to sleep.

      3. My frequency changes. The iPod LEVO software does not allow for frequency adjustments AT ALL. Even to move 1 kilohertz up or down, I have to take off a day of work and travel an hour to see my therapist's tablet. At that point, she puts her tablet in front of me and has ME adjust it, then I drive home and hope my frequency doesn't change. This is a HUGE flaw! I need to be able to make micro-adjustments. I get up to three distinctive tones!

      4. Even though this is classified as DME, my ENT refuses to help me with my insurance at all. When I called my Insurance, they asked why my ENT won't get involved? The unit cost me $4000 dollars out of pocket. I paid FOUR THOUSAND dollars for an ordinary iPod, with ordinary earbuds, loaded with one piece of custom software that isn't working properly and won't let me adjust it. I'm getting the run-around from three sides. Needless to say, right now, I am feeling cheated and disappointed.

      I wish I had better news. I'm still hopeful that this will work, and I will post a LOT of positive feedback if it does, but so far, I feel that I am an alpha-tester who's working out all the bugs for Otoharmonics. In time, I really hope they deal with these issues, and I hope they read this. -Jon
       
      • Hug Hug x 2
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    5. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      Ditto to all you’ve said. I’m actually really pissed off I spent so much money on it because of the above. It’s nigh on impossible to use for the above reasons. I actually sent mine back and when feeling very desperate and vulnerable received a call making me feel very pressured in to trying again with it. I was practically assured if I stuck with it, it would make my T only audible if I really searched for it in a quite room but like you the frequency doesn’t even match my T properly and I can only bear it for a few hours a night because the ear buds are painful hard plastic crap. It’s total hogwash. I wish I had just told them to **** off but out of desperation and feeling at the end of my rope, I buckled. I might as well of burnt 4k for all it’s worth. Out of the tens of thousands I’ve spent it’s the most galling and so far has made my T worse. One things for sure if T does take my life I’m going out realising that this a really awful world if you’re suffering, vulnerable and have howhere to turn..... You’re just shark bait.
       
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    6. emmalee
      No Mood

      emmalee Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      hearing loss
      I am so sorry that you are suffering like this, Bam. It is good that you can come here and let your feelings out.:huganimation:
       
      • Agree Agree x 1
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    7. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      My opinion: Otoharmonics needs to hire people with Tinnitus for R&D. This unit has potential, but it needs work. I sent Oto a copy of my post, and they responded with a canned message. That was disappointing.
       
    8. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      I f***ing bet they did! I really hate that I’ve become this weak preyed upon mess of a person because of this nasty illness.
       
    9. MichaelF6161
      Balanced

      MichaelF6161 Member

      Location:
      VA Beach
      Tinnitus Since:
      08/2018
      Cause of Tinnitus:
      Exposure to Gun Fire
      Jon,

      Do you have any additional updates on the Levo? Sounds like they really were not ready for prime time, and have some serious obstacles to overcome. Patients should not be inconvenienced like this especially for this kind of money they charge. You should have control over the frequency if need be since we all know that T tone can change.
       
    10. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      My Update:
      I haven't started using LEVO successfully yet. The first unit was broken, it kept shutting down a short while into the therapy, and the earbuds fell out in my sleep. The 2nd unit works (it took months to get another), but again, the earbuds fall out when I sleep. They are generic rubber nodules, and my ears sweat a little, and that combined with wax, and they fall right out. They finally took custom molds of my ears (they were supposed to do that in the beginning, but then didn't, and instead gave me generic rubber plugs that fall out, telling me they were just as good). They told me it would be two weeks to get the new earbuds. It's been one month, and I still don't have them.

      Another issue I'm looking into - I have high triglycerides and cholesterol (877-Tryg, and unmeasurable LDL) . Statins make me sick, I've tried them all. 3 weeks ago, I put myself back on Crestor (rosuvastatin), figuring it just doesn't matter anymore. Over the last couple of weeks, my noise still goes nuclear, but not as much. My blood tests from last week show that my total cholesterol and Trygs have been cut in half. My drinking is now about 1/2 of what it was 3 weeks ago. I still need diphenhydramine and Klonopin to sleep. This is completely inconclusive data at this point, however, I wanted to share. Could there be a connection between cholesterol and brain-related tinnitus?
       
    11. JohnAdams
      Starving

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Yep, alcohol. Its addictive so be careful.
       
      • Funny Funny x 1
    12. Smartone202

      Smartone202 Member

      Tinnitus Since:
      2004/Went haywire in 2018
      Cause of Tinnitus:
      Loud noise in 04/Wedding dance floor and flying? in 18
      Just curious does your job know and understand your condition? I am contemplating applying for FMLA sick leave as my T has been affecting me sleep often. I simply cannot function on 4-5 hours sleep.
       
    13. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      Told ya it was crap.
       
    14. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      My job understands my condition. I try not to eat a lot for dinner, and I take the Diphen and Klonopin before I eat, so I can get the best chance at sleep. I still call out every couple weeks, there are nights when the siren will not leave me alone.

      As for the LEVO being crap.....I don't know if it's crap, I haven't started the therapy yet!!
       
      • Optimistic Optimistic x 1
    15. AVas

      AVas Member

      Location:
      United Kingdom
      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Loud sound exposure
      Late to the party but LEVO definitely sounds like a scam, another rehashed audio "treatment". You can generate the sound of your frequency for free in a couple of minutes from home and you can make molded earphones for $100-$200. They're not doing anything you couldn't do yourself and there's no 3rd party convincing proof this is an effective treatment.

      Sounds like they're forcing you to accept that it helps or will help you if you stick with it. There's a word for that - professional bullying. They think they can get away with it because they have a piece of plastic with "doctor" on it. After they'll kick you out you can bet there's going to be a success story posted with your name on it on their website.

      Btw, any news with your ordeal?
       
    16. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      Levo isn't working for me. It actually seems to make things worse, even wearing it for 5 minutes a day. I paid 4000 dollars for an iPod. I'm now seeing a Psychiatrist for meds that get me to sleep, and I am only drinking a shot or two of 100% blue agave tequila (it has health benefits if not abused). I am on the Cannabis program for NJ. It's expensive, but when the ringing isn't too loud, it allows my focus to shift off the noise. Some strains work better than others. Food seems to set the ringing off, especially bad food. As a result, I don't get hungry anymore and I've lost 47 lbs, and when I eat right, I no longer require insulin to control my diabetes. The next step is to try and get a Magnetoencephalography. I'm still working, but having great difficulty.
       
      • Hug Hug x 2
    17. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      Jon, this way you can live to see a better treatment or cure? I'm going through a bad spike. Prayers to all!
       
    18. Chinmoku

      Chinmoku Member

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      @Jon Rhynard, thank you for your story and updates. May I ask you:

      1. How do you establish tinnitus is from the brain and not the ears?

      2. I have seen a few ents but no endocrinologist. Should I see one? What would he check?

      In my case I think tinnitus started with a cold but has been amplified a lot by medication.
       
    19. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      An ENT surgeon in Philadelphia ran a whole battery of tests. If you can hear a whooshing in your ears, it's possible that it's blood flow and may be treatable because the problem is in your ears. In my case, after all the tests, my hearing and blood flow is perfect except for the frequency where the noise sits (11KHz). I went to a neurologist, same result. Holistic medicine, chiropractor, acupuncture, psychologist - all the same result. An Endocrinologist can't help you - I do them for cholesterol and diabetes management.

      Medicines can definitely cause tinnitus. If it's a cold that caused this, see an ENT, the problem could be blood flow, and treatable. If not, find a good Psychiatrist, they can give you the meds to help you sleep. For me, a Restoril and a Klonopin get me to sleep. Tranxene seems to have no effect. The cannabis helps me sleep, and since I'm not smoking it, the cannabis won't damage my lungs. A shot or two of tequila gives me about 2 hours of peace a day.
       
    20. Chinmoku

      Chinmoku Member

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Thanks. I saw three different Ents. We ran tests like MRI, electrocochleography, pressure, hearing tests, blood tests. No clear diagnosis. We tried oral steroids, antiviral medication, vasodilators. Nothing. I am tapering a medication called pregabalin and as I go down tinnitus seems to get worse, otherwise I would tend to habituate. I am not sure what to do next, I may need AD medication as my mood is a disaster but I am terrified it could make tinnitus worse. I'm stretched to the limit already.
       
    21. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      I'm sorry, it sounds like you are stressed beyond belief. You HAVE to bring your anxiety level down before you try to beat the ringing. I'm using 112.5mg of Effexor in the morning. That keeps me from crying and wishing for death (not kidding). It does not make me muddy. My wife has noticed the difference. Klonopin is nice, because it makes me sleepy, but it doesn't make me groggy in the morning. I do 1 mg at night, and if I wake up in the middle of the night, I chew another one up so it works faster, and I listen to stories or mythology podcasts. Even if it's the same story over and over, it gives your mind something to concentrate on in order to fall back asleep. The 30mg Restoril keeps me asleep, mostly. These 3 meds do not make my tinnitus worse. Neither does the 1-2 shots of 100% agave Tequila. I don't care for the taste, but the 2 hours of not caring about my ringing is necessary. The cannabis is a work in process. Wappa in a vaporizer pipe seems to really relax me for 2 hours, and it works fast. There are Cannabis lozenges that take longer to activate, but last much longer. These things keep me going while I search for a cure, and I can still function well at work. I'm pretty useless once I get home, unless I get a (rare) attenuation of the siren.
       
    22. Chinmoku

      Chinmoku Member

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Thank you for the tips. Do you listen to podcasts using headphones? That seems to be not recommended in this forum although my audiologist said it is ok as long as you keep volume lower than tinnitus.
       
    23. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      No, I have an Invoke. It's the MS version of Alexa with a really good speaker. As for headphones....at first you won't like them, and then you might, and just don't go nuts on the volume. The 4000 dollar ipod uses custom earbuds, so it can't be that bad at moderate volume. Did I mention I paid 4000 dollars for a useless ipod?
       
    24. Chinmoku

      Chinmoku Member

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      That would be LEVO I guess. Sorry you wasted your money but I understand, it is offered by a number of tinnitus clinics and one is desperate to get better from this @#$%
       
    25. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      1
      Tinnitus Since:
      1900
      Cause of Tinnitus:
      karma
      I get name-brand Roche Klonopin for $0 because I have amazing insurance unlike most americans.

      I am also a software engineer, for me the "muddiness" wore off after a couple weeks but my short term memory takes a hit, so I take a lot of notes.
       
    26. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      I keep a daily journal at work so I don't forget anything important. Cortana reminders help also.
       

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