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. Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      I've been to many ENTs, Chiropractors, Holistic doctors, Acupuncturists, MD's, GP's, and Endocrinologists. My form of tinnitus is in the brain. My hearing is perfect. The volume ranges from 3 (annoying but ignorable) to a 10 (I don't want to live anymore). The primary frequency sits at 8.3 KHz. At times, there can be up to 3 tones in my head at the same time, and it/they move from ear to ear. For those of you with incurable brain-generated tinnitus, I have a couple tips to maybe help get you to the other side.

      It WILL get better. I mean it. If you are new at this, you need to realize, from someone who's had this and had thoughts of suicide (me), that your brain is an amazing organ that is capable of change. Even though you wake up at 12:56 PM with a siren in your head that makes you pray for death (literally), your brain will slowly (very slowly, over months) adapt to some degree. This will help you cope, while you figure out how to deal with this life changing event that seems to be actively trying to kill you.

      THE BAD
      1. For me, eating makes it worse. I'm going to see a GI specialist about this. Example: if I eat raw vegetables, the volume doesn’t get worse. If I eat a cheesesteak, the volume goes up significantly. Eating at night makes me sleep less. I've lost a lot of weight. Weight loss (30lbs so far) does not seem to make a difference at all, however it allows me to look forward to something, which is a critical piece of not ending yourself. You NEED to work for some kind of goal, ANY goal, and no matter how small.
      2. Marijuana didn't work for me. I tried small amounts of two varieties, but instead of taking the edge off, it just made the focus…different. It's hard to explain, but it didn't help.
      3. I kept a log for months with moods, reactions, times, medications, foods, and volume levels. I could not pin down a pattern or any way to change the condition. Eventually, I learned that keeping a detailed log of the thing in your life that is trying to kill you, is not a good idea. The best idea, is to NOT log it, and keep it out of your mind as much as possible. While I write this letter, I am not following my own advice, and see? All I can focus on is my condition.
      4. Sleeping for long periods of time makes the volume much lower and better when you wake up. Unfortunately for us, sleep is near impossible. White noise, brown noise, and audio books help me to change focus, which helps me sleep. You are going to be up a LOT. I go to sleep at 11 PM, and I'm up for the night at 12:56P and its LOUD (odd, but the wake always seems to be the same time). That is one of the hardest things to get used to in the beginning, because before this condition, you probably slept through the night. You will need to occupy your time. Try reading Anthony Weir novels, watching TV, Movies, and Computer games. I tried a treadmill, but exercise made me physically tired, and mentally alert, and then my wife got mad because I was tread-milling at 2 AM, which makes her prone to also staying up in the middle of the night and throwing things at me. You need to accept that this non-sleeping change will be around while you figure this out. You will be missing time from work due to the lack of sleep. Be as honest as you can with work, family, and those around you - this will take some of the mental stress out of the equation.
      5. Drugs - I have unsuccessfully tried Diazepam(Valium), Ambien(max dosage), Diphenhydramine, Amitriptyline, Trazodone, Gabapentin, Medical Marijuana, Street Marijuana, Flexeril, Lipo-Flavanoids, over -the-counter Tinnitus formulas and all sorts of weird herbal remedies from India. None of them helped, and they cost me a small fortune.

      THE GOOD
      1. Any Goal: As stated earlier, you need something to live for, something to look forward to. For me, it's losing weight. I'm going to lose so much weight, that by the time I'm done, my body will fit into a medium-sized sock and I will use it as an inexpensive sleeping bag.
      2. Drinking alcohol helps. It does not make the tinnitus better, but a SMALL amount (a few ounces of whiskey-just enough to dull the edge) after work allows your brain to "not care" - which offers a break of about 2 hours. When you have 24 hours of torture, a 2 hour break per day is amazing. Having too much alcohol and getting drunk will make the volume worse the next day.
      3. KLONEPIN is the only drug I found that helps this condition - A LOT. I take 1mg at 7:30 PM, and it gets me to sleep. Although it doesn't actually fix the tinnitus, it allows me to more effectively focus my brain around the noise, and unlike the other medical solutions I've tried, this one allows me to stay sharp.
      4. THE POSSIBLE FIX: There is a new, FDA approved device called the LEVO. It has had success in Europe for the last 2 years, and Canada for the last year. It's an iPod with special software and custom earbuds that pumps the bad frequency back into your brain at night while you sleep. This process is called habituation. As an example, think of your nose. Everyone on the planet should be able to see their nose all the time. We don't, because our brains have blocked it out. If you focus, you can see your nose, but other than that, we just bypass it and look at Reddit instead. Hearing can work the same way. Although tinnitus cannot yet be cured, the brain may be able to ignore the bad frequencies. LEVO isn't cheap, the device, and a years' worth of ENT visits is $4000, but my insurance is telling me it's covered as DME under an E1399 Class 2 Medical Device (ICD-10 Tinnitus H93.13). I can't confirm as I have not yet been reimbursed. After months of research, this is the best solution I could come up with, for me. I wish you all the best.
       
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    2. Nanny chocolate

      Nanny chocolate Member Benefactor

      Location:
      Devon
      Tinnitus Since:
      1995
      Cause of Tinnitus:
      Unbelievable caused by audiologist!
      Jon you made me laugh in spite of rubbish T. I haven’t heard of LEVO and I’m trying to habituate.
      You tried so many things, that’s exhausting too.
      Warm wishes
      Eve
      @Nanny chocolate
       
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    3. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      Thank you for your replies, it really helps. I didn't include the link to the device in the message, it is

      https://otoharmonics.com
       
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    4. dayma
      Inactive

      dayma Member Benefactor

      Tinnitus Since:
      1/6/2018
      Cause of Tinnitus:
      UNKNOWN
      Nice write up!
       
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    5. Daniel95
      Tired

      Daniel95 Member Benefactor

      Tinnitus Since:
      Approximately 01/10/2018
      Cause of Tinnitus:
      stress/sinus Infection/headphones/maybe antibiotics
      Thanks for the writeup. How is your T these days? Has it decreased in volume or are you just able to ignore it better?
       
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    6. Sam Bridge

      Sam Bridge Member Benefactor

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Loud music/gigs probably
      I sleep pretty good but thanks for the advice...
       
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    7. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      Thank you, everyone, for your support. The levels are not better, however, my brain is allowing me to adapt. Sleep is critical. How to handle nights when there is no sleep is even more critical. Last night I got about 4 hours. The Klonopin helps greatly. My best hope is the Otoharmonics Levo device, but it's not easy for my brain to adapt to the unit yet. I'm only on day 3, so this will be a work in progress.
       
    8. Daniel95
      Tired

      Daniel95 Member Benefactor

      Tinnitus Since:
      Approximately 01/10/2018
      Cause of Tinnitus:
      stress/sinus Infection/headphones/maybe antibiotics
      Glad to hear you are able to handle it better. Keep us posted on your progress and take care of yourself.
       
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    9. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      I have never heard of that device. I hope it works. I see you use a iPod touch and wear it while sleeping. Interesting.

      David's Tinnitus Experience
       
      Last edited: May 5, 2018
    10. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      Honestly, so far, it's torture, but this is a work in progress. IF anyone goes on this device, please be aware of the following:
      1. You have to give up all white and brown noise that helps you get to sleep now. The iPod is noise canceling.
      2. Tinnitus sufferers like me, do not like headphones and earphones. It seals in our frequency and seems to amplify it a bit. It's like a sensory-deprivation chamber, sealed in with an 8.3KHz siren.
      3. For the last week, I have slept very little. The noise is sealed in, and I'm pumping in more tone from the iPod.
      4. When I wake, the noise is louder than when I wasn't using the device, and it stays loud all day. It's as if my brain is resisting this new change.

      This is hard, but I am sticking with it. I must adapt. Everything I've researched about this therapy says it should work. Again, thank you all for your support.
       
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    11. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      LEVO sucks.
       
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    12. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      May I ask why you feel that way?
       
    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
      Because it's a WAY overpriced machine that does nothing but emulate tinnitus sounds. It doesn't even reduce tinnitus volume or anything helpful, even though it tried to, and to some degree that's how it markets itself. It's the definition of a failed medical product that made it to market. And expensive to boot.
       
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    14. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      I initially felt the same way as you. After research, and mulling, and opinions from others, I've come to the conclusion that I'm not paying for the iPod, as much as the LEVO software R&D, FDA support, and a full year of basically unlimited ENT visits and unlimited communication with doctors. It is much money, that I don't have, but the tech has had success in other countries. Please read the case studies:
      https://aja.pubs.asha.org/article.aspx?articleid=2661617
       
    15. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      I had SoundCure which turned out to be a dud. I think they went belly up according to an audiologist I had seen. LEVO I had never heard about, so I will reserve judgment to whomever tries it. Keep us updated @Jon Rhynard.

      I've just ordered hearing aids with masker from this place. They program to your audiogram. I think you have a 45 day trial.

      https://www.audicus.com/pages/hearing-aids

      I use Serax also as that is the only benzo I currently have. Klonopin may be better.
       
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    16. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      With conditions such as ours, I think we need to explore every option on the planet. If Serax works, then terrific. If you have a prescription plan, the generic for Klonopin is clonazepam, and only costs me 5 dollars for a 90 day supply. I found the benzo's I tried to leave me muddy the next day (affecting my ability to work as a network engineer). thank you for adding to the conversation. I don't qualify for sleeping aids, because the sound is generated in my brain.
       
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    17. Rajin

      Rajin Member Benefactor

      Location:
      PA
      Tinnitus Since:
      9/7/17
      Cause of Tinnitus:
      Hearing loss ,noise
      600 million ppl in the word with Tinnitus, 100 got help from devices etc... is nothing. We need real help .Company just milking T suffer like a fat cow.
       
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    18. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      An ENT prescribed Serax. I would prefer clonazepam. My new GP doesn't like to prescribe any benzos. He would prefer a psychiatrist do that. I have some TMJ disorder also that may or may not be affecting my noise in left ear. I have a splint for that and will also try to get a steroid injection into left jaw.

      Clonazepam and diazepam can be abused, but this link talks about them for tinnitus:

      https://docs.google.com/viewer?a=v&...VzdGlubml0dXNzaXRlfGd4OjQ5OGU3M2M0NDY1NjM0YTU
       
      Last edited: May 5, 2018
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    19. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      fat.jpg
       
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    20. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      I was on Ambien - that's a controlled substance that's addictive and can be abused. I stopped taking it cold in order to switch to other meds, I had no issues. I don't believe I would have an issue stopping clonazepam. I read your article, but I don't have the same experience. Klon does not quiet anything, it only allows me to deal with the ringing better, and sleep. Valium worked for me initially, then after a few days stopped helping me sleep. Sometimes it seems like my brain adapts and overcomes the medicine. For you, it would be really great if that steroid injection worked - I've heard positive things. I wish I qualified.
       
    21. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      @Rajin > Tinnitus isn't new, but the type generated in the brain is ridiculously hard to investigate. We don't have the ability to rip into the frontal lobe hearing section and try things that would pin it down. We can't use animals, because we have no way to detect the frequency. Even with LEVO, I am the one who has to set the frequency using the doctor's software, she has no way to know what I'm 'hearing'. In time, technology will beat this, but unfortunately, you and I are in the beginning and must deal. It could be even worse....100 years ago, doctor's would sometimes remove the cochlear nerve in the hopes to defeat the Tinnitus. The patient would be deaf, but to the patient, that was preferable. Unfortunately, they performed the operation (irreversibly), and the patient was deaf, and the Tinnitus REMAINED!!! Now THAT friggin sucks.
       
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    22. Rajin

      Rajin Member Benefactor

      Location:
      PA
      Tinnitus Since:
      9/7/17
      Cause of Tinnitus:
      Hearing loss ,noise
      If that would had worked, wold be the best cure until now deftness. Silence. I guess cochlear Implants wold be the best fix.But then again they should have figured it out it’s in the brain long time ago.
       
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    23. Rajin

      Rajin Member Benefactor

      Location:
      PA
      Tinnitus Since:
      9/7/17
      Cause of Tinnitus:
      Hearing loss ,noise
      But I do feel they are close to getting a treatment. So many soldiers have it and younger ppl they takeing it more serious. Habituation is great to push it in the background, but a treatment should be, what everyone push for. To live life to the fullest.
       
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    24. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      I partially agree. If it's an ear problem, they are getting there, especially with injections. If it's a brain-generated tone, they are at a wall. The best teaching hospitals on the East Coast are completely stumped. My doctors are so sympathetic, they are giving me any drug I ask for, but there is nothing else we can test.

      LEVO just received clearance for the VA hospitals.
       
    25. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      The good news is if it's this easy for LEVO to get through, an actual treatment wouldn't have a hard time either. I should study LEVO more.
       
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    26. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
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    27. AUTHOR
      AUTHOR
      Jon Rhynard
      Aggressive

      Jon Rhynard Member

      Location:
      Clayton, NJ
      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      I will keep the posts up. If this thing works, I will be all over these boards. So far, it's having a paradoxical effect. the only positives I have right now are: do not eat carbs and proteins, drink small amounts of alcohol once a day as a break, and Klonepin. I'm talking to someone right now who is wondering if migraine meds wouldn't help us, such as Sumatriptan.
       
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    28. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
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    29. Tex

      Tex Member

      Tinnitus Since:
      08/2008
      Cause of Tinnitus:
      Noise Exposure
      Jon,

      The hardest thing to do is not let Tinnitus/Hyperacusis totally consume you. I know we all probably think our T is louder than everyone elses'. I do. I know mine is louder than yours. :LOL: Humor helps too!!

      Ten years ago my ENT waited a few weeks to prescribe anything just because he knew that I was still in the initial shock. But then he prescribed 2mg Diazepam three times a day. It didn't work. I started saving them to just take maybe 2-4 mg. at bedtime for sleep. He told me sleep was crucial and to keep that routine up. I know you said that left you groggy. I'm glad you said that because that confirms what I'm working on next, dumping the Diazepam. I think it may be the cause of my slow start the next day.

      What has been giving me amazing sleep after all these years is this "cocktail":-- depending on how wound up I am -- 2-4mg Diazepam, a 250 or 500 mg. Magnesium tablet, and a Melatonin tablet about an hour before bedtime. Then about a half hour before bedtime one dosage cup of Diphenhydramine. I may wake up a few times in the night to pee because I drink a lake full of water all day. :). But I go back to sleep. Actually after ten years I only sort of perfected this mixture in the past few months. However I'm considering kicking the Diazepam.

      I also have a big box fan by my head on low and blowing the opposite direction. The reason for the opposite direction is because when I mentioned all of this to my eye doc he told me to point it the opposite direction because we may have barely slit eyes during deep sleep and he was concerned about dry eyes.

      Also, that cocktail doesn't work well on a full stomach. I time my evening meal to be light and early. I NEVER eat anything heavy like a burger or other fatty meat late in the evening. That sleep cocktail needs to be on a nearly empty stomach. I don't mean growling stomach hungry because that hampers going to sleep as well, but just not a big load of food to drop the sleep cocktail into.

      There are lots of scary drugs mentioned on this forum. I just looked up KLONEPIN and that one looks real scary! I know Diazepam isn't candy, but the KLONEPIN sure had lots of concerning warnings.
       
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    30. purple haze

      purple haze Member

      Location:
      rapid city sd
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      unknown. Possible salicylate sensitivity
      I started a low salicylate diet that is helping. There is so much discrepancy in the information that I became frustrated but I did manage to find a good article that explains why the information is so different. It has to do with where the food is grown, stored, canned, fresh, etc. You won't like it but I hope that over time I can reintroduce foods I like again. Here is the link:www.eatrightstore.org/~/media/eatrightstore%20documents/books%20and%20publications/faisalicylatesensitivity.ashx.
      If this fails, go to Academy of Nutrition and Dietetics
       

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