Today Might Be the Hardest Time to Be a Tinnitus Sufferer

Discussion in 'Support' started by mrbrightside614, Jan 19, 2020.

    1. mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      Prior to 2017, sufferers potentially had Retigabine (Trobalt) as an option. Prior to that, although there were several clinical options that flopped, it didn’t seem like there was all that much hope for an available cure. NOW that we have FX-322 and Dr. Susan Shore’s device to look out for, I am mostly praying away this condition and holding out hope for a cure, which I understand are two obstacles to overcome in the “habituation process.”

      I miss sleeping without pills. I miss hearing myself think and allowing my imagination to wander. I’m not my funny, imaginative, magnanimous self with this disease. I can’t make strides towards my profession as a strength coach because it’s setting is of obvious acoustic menace. My username—mrbrightside— is one from a past life, when I was free of such mental tyranny. I hate being negative like this, but my personality and identity are absolutely shredded.

      It’s been officially 6 months. While my tinnitus is lowest in the morning, it still picks up predictably throughout the day which necessitates the sleeping pills. Although I sleep for like 10 hours, the sleep quality—as I’m sure many sufferers and sleep architecture alterations of tinnitus sufferers would attest to, is poor and not “restorative”.

      God help us.
       
      • Hug Hug x 13
      • Agree Agree x 2
    2. IAmCalifornia
      Wishful

      IAmCalifornia Member Benefactor Hall of Fame

      Location:
      Pennsylvania
      Tinnitus Since:
      this year
      Cause of Tinnitus:
      i wish i knew
      926D6DD9-8350-4E18-8BC7-4F60013D355D.jpeg

      But it’s not a disease.

      iT’s A sYmPtOM.
       
      • Funny Funny x 5
      • Agree Agree x 2
    3. oceanofsound26
      Sleepy

      oceanofsound26 Member

      Location:
      Washington State, USA
      Tinnitus Since:
      07/2019
      Cause of Tinnitus:
      Still not sure. TMJ & Neck Problems most likely.
      • Informative Informative x 1
      • Useful Useful x 1
    4. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
    5. oceanofsound26
      Sleepy

      oceanofsound26 Member

      Location:
      Washington State, USA
      Tinnitus Since:
      07/2019
      Cause of Tinnitus:
      Still not sure. TMJ & Neck Problems most likely.
      Dreem 2 is the gold standard - https://dreem.com/en - but is 5x the cost of mine. Will purchase the Dreem 2 after I start my new job in the spring. These devices helped me become more aware of sleep which led to understanding and less stress. Also, keep a sleep journal as well. Helps to pinpoint things that may be affecting your sleep which may be less accessible at this point in time which you can validate with the help of something like this.
       
      • Like Like x 1
    6. MrCrybaby

      MrCrybaby Member

      Tinnitus Since:
      2014, 10/2019
      Cause of Tinnitus:
      School Band, Acoustic Trauma
      I’m finding that as I go deeper and I get a greater sense of what is healing and what is not it’s getting harder. My left ear still feels irregular 3 months in, and all I can do is hope that it’s an inner ear thing and not a middle ear thing. Ironically the most complex system seems the closest to being fixed.
       
      • Creative Creative x 1
    7. Gman
      No Mood

      Gman Member Benefactor

      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Ototoxic earwax drops, worsened by MDs (Muppet Doctors)
      Trobalt had some serious safety concerns. It even turned some people blue. Don't think I would be considering that a loss.

      You had better hope it is a middle ear issue due to sensitivities (TTTS) which is what it really seems it could be. You don't want to be hoping it is inner ear at all. By the way, 3 months is nothing.
       
      • Agree Agree x 3
    8. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      Seemed to be fairly well-tolerated by members here. Looked like the biggest insult it was capable of was of cognitive origin, which appeared to be temporary.
       
    9. FGG
      Spaced

      FGG Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      It gave a few users here horrible visual snow, some permanently.
       
      • Agree Agree x 3
      • Informative Informative x 2
    10. Selah1281

      Selah1281 Member Benefactor

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      It caused several people on this board permanent visual snow.
       
      • Agree Agree x 3
      • Informative Informative x 2
    11. Harley

      Harley Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      unknown
      There is never a good time to get tinnitus, but I think at least now it seems like people are slowly starting to wake up and realize, that they deserve so much better than the:
      "Just pretend tinnitus is your friend or a kitchen appliance", type of intelligence insulting crap.
       
      • Agree Agree x 3
    12. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      I thought that was only reported by Danny, who was on a huge dose and combined it with Keppra.
       
    13. FGG
      Spaced

      FGG Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      No. Go through the thread. PatrickG and a few others got visual symptoms, too.
       
    14. Selah1281

      Selah1281 Member Benefactor

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      Here is a quote toward the end of the thread discussing Trobalt:
       
    15. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      Yeah I’d rather not considering it’s not an available option anymore so I’ll take you at your word.
       
    16. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      I’m just going to mask 24/7 and hope that my brain forgets the signal or it/the ear “heals” over time. I’m done white-knuckling my way through this shit 6 months in.
       
      • Hug Hug x 3
    17. FGG
      Spaced

      FGG Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Have you tried TinnitusPlay? If you have an iPhone, I have heard good things.
       
    18. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      I haven’t, maybe I’ll give it a look. The app I’ve been using is free, called “ReSound Relief.”

      Violet noise at a low volume masks my high-pitched tinnitus, which previously had been unmaskable, so I guess that’s a win. The most annoying part is that it’s not the volume of the tinnitus that is so problematic, it’s just the pitch. I have a similarly volumed lower pitch tinnitus that doesn’t react to anything—with its comparison I can draw the differences between “mild/habituation-enabled” tinnitus, and moderate-to-severe tinnitus.
       
    19. Christopher805

      Christopher805 Member

      Tinnitus Since:
      May 2019
      Cause of Tinnitus:
      Neomycin
      @mrbrightside614
      I believe you are as your call name implies. Ive had tinnitus and hyperacusis for 8 months. I also don’t like to talk negatively but this life change will make one spew negativity. My tinnitus is lowest in the morning and picks up as well. It is so disruptive. I cannot just sit and ruminate on pleasant things in life anymore. My life and that of my wife and kids has been turned upside down. I feel broken. I am frozen in my home and only go out to walk or doctors appointments. I worked 34 years; retired and bam tinnitus and hyperacusis. Up to this point never spent a day in the hospital. Was very fit for 59. In terms of personality I was a comedian in my earlier life, so that should be a hint to my personality, at one time. Never been depressed or suffered from anxiety. Now, I feel like a shell of myself. I cannot tell you what to do in terms of meds everyone has to make their own call. But I can tell you this I took a med and now I am on the forum. I was warned and I knew better. I took a chance and got seriously burnt. In terms of sleep, sometimes I do not sleep for 3 days. When I do it’s from sheer exhaustion. You are right sleep on meds it not restorative. I pray you and I and all of us get relief from this insidious thing called tinnitus. For you personally I truly pray you get your brightside back sooner than later. Right now I’d take any former side I once had. God Bless. Peace.
       
      • Friendly Friendly x 1
    20. Master mind

      Master mind Member

      Tinnitus Since:
      2020
      Cause of Tinnitus:
      Antidepressant
      I live in Europe, will we ever get FX-322 or other treatments? It seems this part of the world doesn’t get any help. Minnesota device, Susan Shore device, Lenire (Ireland and UK is an island of itself with no borders to Europe), all these are an ocean flight away from me. It’s 2020 already, @kelpiemsp got his thalamus treatment in late 2018, how can it still take that long to release the device, this is extremely brutal. No cancer, autoimmune diseases or other life threatening infections are as ridiculous as this disease. The Minnesota device even reduced visual snow, which I’m also suffering from. I’d pay $10k for getting rid of both tinnitus and visual snow. What the actual fuck.

      If that revolutionary Minnesota device already helped a bunch of people, what are they still waiting for? The brutality of the medical world is absolutely unbelievable.
       
      • Agree Agree x 1
    21. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      What a load of crap that comment is
      and devised to denigrate this shit !!!

      If it causes DIS-EASE

      it’s a DIS-FUCKING-EASE !!!!!
       
      • Agree Agree x 2
      • Like Like x 1
    22. WestCoastGirl85
      Buzzed

      WestCoastGirl85 Member

      Location:
      Orange County, CA. U.S.A
      Tinnitus Since:
      September 2011
      Cause of Tinnitus:
      Ototoxic ear drops getting into inner ear canal
      I agree with you Jazzer.

      mrbrightside: I know it’s really difficult and a struggle. I completely understand when you said before tinnitus you had a different life. I became a shell of a person, and I still am. I don’t think I will be the person I used to be. It’s not easy but we can. I also feel like (I know how terrible this sounds) that this happens to us so that we don’t have to be alone in going through this torturous noise, that someone will be there.
       
      • Hug Hug x 1
    23. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      Such sweet words. I pray for you, and all of us. Thank you.
       
      • Like Like x 1
    24. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      They were just mocking normies/the medical community.
       
      • Agree Agree x 1
    25. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      Completely with you dude. I can’t believe we can continued to be tortured day-in/day-out, and have no idea what is on the horizon.

      I haven’t heard anything about the Minnesota device. Are they in clinical trials?
       
    26. Master mind

      Master mind Member

      Tinnitus Since:
      2020
      Cause of Tinnitus:
      Antidepressant
      It is rumored that Minnesota device will be Lenire 2 (what was the fucking point of releasing Lenire 1 then? Lenire 1 seems to be working 50/50 of cases, couldn’t help @Allan1967 so he commited suicide, BRUTAL).

      Lenire 2 will be released around the end of 2020s. Till then, I feel like I’ll be dead.
       
    27. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      Shore and FX-322 are definitely two upcoming resources of serious consideration for relief. I can hardly wait til the end of the year to see their data.

      Is Minnesota not even in pre-clinicals? Why do you think they’ll be superior if there’s no data released?
       
    28. Master mind

      Master mind Member

      Tinnitus Since:
      2020
      Cause of Tinnitus:
      Antidepressant
      If I’m correct, Minnesota device is in phase 2, which could take years to finish. Minnesota device is the best treatment for both visual snow and tinnitus since it targets the thalamus. Shore device only targets somatic tinnitus and probably doesn’t work for visual snow. FX-322 works for hearing loss and I’m not sure it can help regulate the misfiring neurons. I believe FX-322 should reverse hair cell death and that should make the brain stop the misfiring that creates tinnitus, but what if it doesn’t? This to me seems the least likely of a cure for people with tinnitus and of course it doesn’t target visual snow.
       
    29. AUTHOR
      AUTHOR
      mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      Phase 2 for a medical device should be the last phase—they’re not subjected to as rigorous an approval process as pharmaceuticals. Have hope, friend!
       
    30. Master mind

      Master mind Member

      Tinnitus Since:
      2020
      Cause of Tinnitus:
      Antidepressant
      Still, it will be sold under Lenire 2, which will be released years from now and that is just sad.
       

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