From 10/10 “Suicide Tinnitus” to Periods of Almost Silence — Possible, But Not Without Some Effort

Discussion in 'Success Stories' started by SoundB0und, Apr 22, 2020.

    1. all to gain
      No Mood

      all to gain Member Podcast Patron Benefactor

      Tinnitus Since:
      -
      Cause of Tinnitus:
      -
      It's probably because it's Magnesium glycinate and it's chelated. When most brands/types of magnesium say take 500mg or whatever a day only a small percentage of that is being absorbed (so maybe only 50mg gets absorbed for example from 500), but with this pretty much all the 200mg is being absorbed.
       
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    2. Steph1710
      Old hag

      Steph1710 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Location:
      England
      Tinnitus Since:
      08/04/2020
      Cause of Tinnitus:
      Antibiotics - I think
      @SoundB0und may I ask you what heart problems you encountered from taking NAC? I've been taking it for a few days and it has given me chest pain and back pain since. I even went to hospital because I felt like my chest was being crushed.
       
    3. AUTHOR
      AUTHOR
      SoundB0und
      Balanced

      SoundB0und Member Benefactor

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Ototoxicity
      I'm sorry you've had problems with your heart and NAC @Steph1710. The best I can describe it is it was fluttering, not too painful. Took only 1 dose. I didn't go to the hospital and have had an ECG that was unrelated to the NAC after it, it came our fine. I hope you recover.
       
    4. AnxiouslyWaiting
      No Mood

      AnxiouslyWaiting Member

      Tinnitus Since:
      03/2020
      Cause of Tinnitus:
      Anxiety maybe?
      Thanks! I think maybe it was just too much for me. I’ll try taking less and see how I react to it.
       
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    5. josh77

      josh77 Member

      Tinnitus Since:
      7/4/2015
      more junk for sale. thank you
       
    6. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      It might be the filler strangely in these supplements. Some people have touchy Mast Cells that can react to certain things. Something to consider for people who are sensitive to supplements in general and not just certain ones.
       
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    7. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      I can't find it in your thread, how much curcumin do you take please?
       
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    8. AUTHOR
      AUTHOR
      SoundB0und
      Balanced

      SoundB0und Member Benefactor

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Ototoxicity
      You're asking about Curcumin and quoting NAC, so I presume you mean NAC? Just in case and so it's in this thread, I'm going to answer both.

      I went back and checked my order invoice of Curcumin from 6 years ago, I took 500 mg and had to quit it in a month or two. About 2 years ago when I wanted to try it for tinnitus I tried Turmeric, as I thought it might make a difference. I took 500 mg of Turmeric. The same thing happened, I got psoriasis worsening. I still have the NAC and Turmeric bottles because I don't throw supplements I no longer take away unless they're expired. The NAC I took 600 mg for 1 day.
       
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    9. BILZER

      BILZER Member

      Tinnitus Since:
      2020
      Cause of Tinnitus:
      Doxycycline
      SoundBound, thanks for your great information you posted. I developed BAD tinnitus from Doxycycline in June. It is horrible and driving me crazy.

      I am looking at your laser information and wanted to see where you got your laser from? I have found it here:

      http://www.konftec.com/html/Products-EN/EM-520.htm

      Is this where you bought yours?

      My tinnitus is around
      Right ear = 7,000 Hz
      Left ear = 8,000 Hz
      According to the hearing test on their site.

      The 520C states it is effective at 4 Hz-10,000 Hz so I am thinking that may be the one to use?

      Is there any other sources for this laser and would anybody want to chime in on any laser experience that they may have had?

      I made note of your supplements as well!
       
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    10. AUTHOR
      AUTHOR
      SoundB0und
      Balanced

      SoundB0und Member Benefactor

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Ototoxicity
      Yes.
      When I first bought my laser I asked Konftec what the graph on their site is based on, what science etc. They just ignored my email. Now it might have been because the person didn't know, was too lazy or didn't want to bother the higher ups with her question, I'll never know, but I take that graph with a grain of salt. Also I don't agree with their instructions on the duration of using the laser.

      I have high frequency tinnitus, somewhere between 8 kHz and 9 kHz, and I use the emLas 520 BCB (last B stands for black only, the color, it looks more professional). Both of the wavelenghts are useful for me, I have tried each one separately and it didn't yield as good results and my ears started craving the other wavelength the last time I tried.

      I suggest you read as much about the lasers as you can, going back to Tinnitus Talk threads might be very useful. Be prepared for a spike in your tinnitus when you start using it, almost everybody gets one with the lasers. Consistency is key, I have done it nonstop for years now, every day not skipping days.

      Good luck!
      SoundB0und
       
    11. GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      How do you actually know if you are hitting the cochlea? I feel like this thing needs a sight to help aim. I just stick it deep in my ear and hope for the best.
       
    12. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      Comprehensive post. Thank you.

      May I ask for more info around notched sound therapy?

      Eg., did you wear headphones/ear buds? Would it work with speakers as I'm too scared to use headphones?

      How long did you use it for? How much of a difference did it make for you?
       
    13. AUTHOR
      AUTHOR
      SoundB0und
      Balanced

      SoundB0und Member Benefactor

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Ototoxicity
      I have been putting the probes in now for almost 2 and a half years and know from the feel even if it's the right angle, but I check from the mirror before I press the start button. I also have some self adhesive fabric tape put on the probes, on the parts they touch the earlobe, so the angles are pretty easy to get right for me. You should also know from the spike to the tinnitus you get from the laser.

      I've heard people having success with cutting the Konftec devices base of the rubber tips 5mm, I wasn't able to do it because it made the probes not stay in the ear as well, but it's fine for most people, you could try it. Doing this makes the beam much wider and thus it's very hard to miss the cochlea. But even without doing this it shouldn't be super hard to hit it, my angle was just quite bad with the stretched out left ear canal opening.
       
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    14. AUTHOR
      AUTHOR
      SoundB0und
      Balanced

      SoundB0und Member Benefactor

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Ototoxicity
      I definitely wasn't going to use headphones or earbuds, especially back then, but I was willing to try it with my phone speakers. It's very difficult to say how much it helped but maybe a tiny bit. I started the laser like a month after I started notched sound I believe and I was improving some without the notched sound too, in the initial stages.

      I haven't gone back to the notched sound therapy in the chronic phase, don't really feel the need for it because for me the results were marginal. Then again, I didn't give it a very good try. It was good though to be able to listen to some music for longer(the notched tracks spiked my tinnitus much less, they still did but I could at least finish a song and then take a break).

      Now I've improved so much that music from speakers isn't much of a problem anymore, on medium volume. I was using AudioNotch. If it was easy to do and free, like with TinnitusPlay that should have been out some time ago (I only have an Android device), then I'd give it another go for sure.
       
    15. Bambam0
      Cool

      Bambam0 Member Podcast Patron Benefactor

      Tinnitus Since:
      2/2018
      Cause of Tinnitus:
      Drums/Guns/Motorcycles
      @SoundB0und how's the left ear coming along?
       
    16. AUTHOR
      AUTHOR
      SoundB0und
      Balanced

      SoundB0und Member Benefactor

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Ototoxicity
      Thanks for asking. I made the thread 6 months ago, since then there's definitely been improvements, but at a snail's pace. The hyperacusis is the one which is most improved, dishes are pretty much not painful anymore. But so has the reactivity and the tinnitus itself.

      Hard to quantify because the improvements have been so gradual. If I'd have to guess I'd say the tinnitus has improved an additional 30 percent or so in the left these past 6 months and it's same intensity as it was before in the right. I've been careful and have had no serious injuries plus it's much harder to have one now.

      So my regimen right now is: LLLT, intermittent fasting 16:8, grounding in nature, Magnesium, D3, Selenium, Zinc Citrate plus some other things but I don't think they can help tinnitus. I do/take these things every day.

      One more thing I could add to my list, I tried Resveratrol about 3 months ago. My luck with supplements is incredibly bad like I've stated many times here and I got incredible GERD worsening at only a fraction of a capsule that I took, felt almost like choking. So there's that. Not sure I'm ever going to try any substances or supplements that aren't vitamins or minerals for tinnitus anymore.
       
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    17. Bambam0
      Cool

      Bambam0 Member Podcast Patron Benefactor

      Tinnitus Since:
      2/2018
      Cause of Tinnitus:
      Drums/Guns/Motorcycles
      Glad to hear! Sucks about the supplements but at least the laser has been effective. Thanks for the great recap.
       
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    18. GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Can I ask, did you ever have reactivity/distortion?
       
    19. AUTHOR
      AUTHOR
      SoundB0und
      Balanced

      SoundB0und Member Benefactor

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Ototoxicity
      I've had both. Reactivity was actually the main issue for me, maybe still is. My tinnitus is much more reactive to synthetic sounds meaning sounds from earphones and speakers. I used to not be able to listen to a song more than 2-3 seconds with the volume so low I did not hear the words, it would spike the already insane tinnitus to incredible levels.

      Right now I can handle music at lowish/medium volume without a problem, especially when my tinnitus is in the right, in the left it's still reactive. Distortion I only had while I was on the drug that was ototoxic for me and shortly after, music sounded flat and unenjoyable, though not too different. That has luckily gone back to baseline. I hope this answers your question.
       
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    20. twa
      Busy

      twa Member Benefactor Hall of Fame

      Location:
      US
      Tinnitus Since:
      2017- mild /Sept. 2020-moderate
      Cause of Tinnitus:
      meds/acoustic trauma
      I thought I was the only one who is very sensitive to medicines or supplements. I had a steroid injection in my back and had a horrible reaction for months. I could not sleep, at all. The doctor recommended Benadryl around the clock, even then I would only sleep and hour or two. She then moved on to Gabapentin, I slept, but the taper was horrible.

      Everyone I know is astonished at how sensitive I am to medication, food, caffeine or supplements. It really doesn't surprise me though. My mom was the same way and I remember she had to be hospitalized because of an anticholinergic toxicity. Maybe someone in your family is the same.

      I pray for you continued health and healing.
       
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    21. Ela Stefan

      Ela Stefan Member

      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Ear Infection
      Where did you buy your laser please? Thank you!
       
    22. AUTHOR
      AUTHOR
      SoundB0und
      Balanced

      SoundB0und Member Benefactor

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Ototoxicity
      It's a Konftec laser. The exact model I have is emLas520BCB.

      I'll give an update since it's been months. I'm still lasering, though I'm not sure it's doing much if anything anymore. I don't want to quit either in case it actually is. I heard somewhere that the maximum duration of using the laser that will do anything is 3 years, I'm exactly 2 and a half years in now. I've been very consistent, skipping a day only if I forget, has happened maybe 2 or 3 times in the past 2 years or so.

      Left ear is still much worse than the right (because of my mistake), but both are at a level where it never bothers me anymore. It's very hard to measure my improvements now, tinnitus seems to be marginally improved, but I think the reactivity has improved considerably, even in the past few months, so has the hyperacusis.

      Probably little due to the laser and more due to the fact that I cranked up my white noise at night (which doesn't mask my tinnitus at all, it spikes it) and because I protect even less now. I can now listen to music all day (not from headphones of course) no matter which ear the tinnitus is in, sometimes when I'm exercising pretty loud even, though not insane levels of course.

      Just to give an idea how loud the tinnitus is, in the right when I compare it to my fridge (that's 6 months old) noise and I'm 1 meter away, the fridge is actually about 2x as loud, in the left things are much worse still and the tinnitus is like 2x as loud as the fridge, still a very far cry from the "suicide levels" I mentioned in the original post.

      I started B-vitamins, only thing I've changed supplement wise since my last posts here, haven't noticed a huge effect. I'm exercising way more and my diet's been significantly better. That's all I can think of right now.
       
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    23. Philip83
      Jaded

      Philip83 Member Podcast Patron Benefactor

      Location:
      Sweden
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Moped (2001) Noise blast (2014) Club (2017) Snowboard (2018)
      I'm thinking of buying this and trying it for my recently worsened hyperacusis/noxacusis. I've tried LLLT before, both at a clinic and I bought another machine, but had no luck with any of them. As I understand from your threads it could have actually had to do with the angle as well as the duration of my treatments though.

      Anyways, just to make sure I'm using exactly what you are using I'd be willing to spend the 820 bucks. Could I ask you though, what is your treatment regiment? What nm, strength and duration are you using? And how long did it take before you saw noticeable improvement the first time? Thanks!
       
    24. AUTHOR
      AUTHOR
      SoundB0und
      Balanced

      SoundB0und Member Benefactor

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Ototoxicity
      If you already have a machine, one that's more expensive, then it's probably higher quality than the Konftec emLas. I don't think there's anything special about it other than it's more reasonably priced than Dr. Wilden's and some other devices. We might just be different responders.

      I do think some people might be getting the angle wrong, but I also know that there's no way I could have gotten the angle in my left ear wrong if I had not pushed the earplug into my ear canal too deep and stretched out the opening of the canal way before I even got the laser, which didn't happen to my right ear.

      There's probably nothing different in terms of light quality from Konftec and Dr. Wilden's device or more expensive well known ear lasers that have been talked about on this forum, if anything's different, the Konftec is probably worse. Maybe the only plus for Konftec is it has multiple wavelengths and afaik Wilden's has one. Perhaps you could just try the device you have once more? But if you're fine spending 820 for a small chance of success, then who am I to judge.
      It's not static or a structured regimen. I used to do 25 minutes 660nm one day and the next day I'd do 808nm 15 minutes(because it's almost twice as powerful), for a while, I didn't skip days. Recently I've been doing a bit less, 23 and 13 minutes or so.

      The best advice I got, from a friend, about the lasers is not to have a static regimen, you might need different durations of the laser at different times, I find I need less of the lasers as time passes. What's right for me might not be right for you. People need different doses of medicine for the same condition and sometimes even a totally different medication. I'd say laser might not work for everybody and the optimal "dose" is likely different from person to person as well.

      So what's the answer? You need to experiment and see for yourself. Medications are a bit of a crapshoot for doctors and they just try until something sticks. You could take my durations as the baseline and expand on them. Another great advice I got was to develop somatic awareness, it's a bit tricky at first but I feel now how much laser I need, it's an actual feeling.

      If I overdo it it's sort of a numb overstimulated feeling in the ears, if I undershoot it's kind of a craving for more. It can be very subtle for me, depending on how much I over or undershoot. Again, it might be different for different people, but that's how it is for me. It will probably take time to develop this awareness.

      Consistency is what's made me have success in all likelihood. I've been incredibly consistent. Noticeable improvement came I'd say already 3 months in(hard to remember now), but I'm probably a very good responder. In the very beginning it got worse.

      I already felt something happening after the first 5 minutes I did, not that the tinnitus got better, it got slightly worse probably, but I felt a kind of a craving for the laser, like something in my body or subconscious realized it was doing something good.

      Good luck whatever you decide to do!
       
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    25. Philip83
      Jaded

      Philip83 Member Podcast Patron Benefactor

      Location:
      Sweden
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Moped (2001) Noise blast (2014) Club (2017) Snowboard (2018)
      Cool, thanks for your answer. I have the LK Combi Laser - similar to this one:

      https://emilyluckylaser.en.ec21.com/LK_COMBI_Tinnitus_Laser_ENT--5266943_5274688.html

      The thing is that those probes are a pain to get aimed and staying where you put them in the ears. I've been padding up pillows to put them on but it's a major hassle.

      Since the one you're using has ear buds, they should be way easier to angle correctly, or? I read something about you not getting the angle right on one of your ears? Are there even different ways you could angle an ear bud like those?
       
    26. AUTHOR
      AUTHOR
      SoundB0und
      Balanced

      SoundB0und Member Benefactor

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Ototoxicity
      That makes sense that they're a pain. I'm sorry I don't have good advice on how to aim the ones you have and keep them consistent. It'd have to be some sort of a contraption with some sort of a helmet or something? Not sure. I believe the emLas is probably easier to angle correctly just based on the picture you provided, yes.

      For me it's very easy now with my Konftec emLas. I have self adhesive fabric on both wavelength probes on the part that the probes touch the earlobe, the one I put in the left has more tape to lift it at the right angle, though the right one has some tape as well just to be sure. I've been doing this ever since I found out I had messed up the left ear.

      Normally it doesn't matter which ear you put which probe, but I always have to make sure the left ear gets the one with more tape. The only way to really miss the cochlea, I believe, is when the probe is too low and at a too sharp of an angle with your head(the angle that I mean being sharp is obviously below the probe not above).

      That's exactly what happened to me, the probe was hanging too much down and the beam ended projecting too much upwards and missed the cochlea or at least it got a lot less of the laser, I don't believe it missed it completely. You can't really miss it from putting the probe in at an angle too much to the left or right, unless you really try for some reason and even then it's pretty much impossible, I don't think the probe would stay in the ear well if you'd do that.

      Another thing I want to add is, people have cut the base of the rubber tip of the Konftec emLas probes, that alone makes it much harder to miss the cochlea because the beam becomes much wider. I could not do that because the probes didn't really stay in the ear after I did it for some reason, but for most who did that it was fine. Konftec will send you many rubber tips.

      Like I mentioned before in this thread, the Wilden's device has those hooks that attach behind the ear, I'm almost certain that I'd not have messed up the left ear with the Wilden's laser because of that. Though there was no way of knowing this at the time and had I known about this whole problem could have just used the tape and Konftec device. Hindsight is always 20/20. I hope you get some relief some way or another.
       
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    27. Philip83
      Jaded

      Philip83 Member Podcast Patron Benefactor

      Location:
      Sweden
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Moped (2001) Noise blast (2014) Club (2017) Snowboard (2018)
      @SoundB0und, I just checked the specs of my Combi-Laser and the mW is quite a bit higher than on the Konftec laser.

      Mine has:
      650nm - 120mW
      808nm - 450mW

      This is the same specs as a clinic offering this in Sweden and Norway that I know of.

      Maybe I need less time than you then per session?

      I was told to use it for 8-10 minutes on each nm/mW.
       
    28. AUTHOR
      AUTHOR
      SoundB0und
      Balanced

      SoundB0und Member Benefactor

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Ototoxicity
      Yes that would obviously make sense. 450 mW for 808nm is 5 times as powerful as Konftec with the same wavelength.

      Like I explained in my first reply, I experiment and I don't have a set static regimen and what is good for me might not be optimal for you imo.
       
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    29. Avery

      Avery Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      TMJ/Neck Disorder (2016) Noise Trauma? (2021)
      Thank you for sharing your story. It brings me joy knowing that you've managed to overcome your affliction with your own efforts, and sparks confidence that I and others can do the same.

      I had one question in particular for you regarding supplementation only (because my case is not as severe as yours was), when you say certain supplements helped, are you referring to addressing your tinnitus directly, or just your perception of it relative to other health benefits they offered? Nicotinamide Riboside, NAC, and Lion's Mane specifically I thought might help my case but I'm becoming conscious of just throwing money away on too many cheap fixes.

      I also have a bottle of Turmeric/Curcumin next to me and was wondering how long I'd need to take it before I see an improvement or decline.
       
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    30. Brian Newman

      Brian Newman Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Shooting/loud noise
      Where did you go for your laser treatments, and how did you get your tinnitus?
       
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