Hi Everyone, Tinnitus Since 2003, Nobody Else to Talk to

Discussion in 'Introduce Yourself' started by Simon101, May 14, 2019.

    1. Simon101

      Simon101 Member

      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Noise Trauma
      Hello Everyone,

      Just wanted to share my story and hopefully connect with a few of you on here as no one else I know really understands.

      I am currently 33 and have had tinnitus I was 17.

      When I was a teenager I used to play in a band and go to a lot of concerts. My tinnitus started in 2003 at the age of 17 and I spiraled into a deep dark depression, I quit my band, started wearing earplugs everywhere, cried a lot and thought I was doomed for all eternity. I went to an ENT and they told me my hearing was fine but there was nothing I could do about the tinnitus. I'll never forget those first couple of years, friends would laugh at me when I wore ear plugs out, they would laugh when I asked them to turn the music down in the car, they never understood why I would always refuse to go to clubs/bars/concerts etc... My only saving grace was I was young, lived with my parents and had no responsibility.

      Anyway, fast forward a couple of years and somehow I managed to habituate to the sound. I began going out again, I travelled overseas, went to College and basically just started living again, the tinnitus was there but it didn't bother me at all. I still wore foam earplugs to any loud events and it was a small price to pay for having my life back.

      Fast forward to 2019 and over the last two weeks my tinnitus has come roaring back, I cannot tell if it is worse or if my brain has just decided to pick up on it again.

      The issue now is, I have a mortgage, a job, a partner and much more responsibility. All the feelings I had when I was younger have surfaced but with much stronger anxiety. I cannot sleep, I can't focus on work, and worst of all the joy I have had in life from habituating to this over the last 10+ years has suddenly been stripped away.

      I work as a Teacher for students with Autism and they scream a lot (not their fault) and the last couple of weeks has been a real struggle. I have been getting up at 3-4am feeling like the loneliest person in the world, my girlfriend is asking what's wrong with me and thinks I'm going crazy. Guess I am going to have to have the dreaded talk with her, I am extremely worried as we are heading overseas at the end of the year and have paid for the trip.

      Anyway, that's the rundown, it's currently 5:17am in the morning and I am taking only my third day off work in the last 4 years. Man I am praying I can overcome this for the second time, I have so much more to lose now than when I was a teenager.

      Thank you from the bottom of my heart to anyone who read all that. I look forward to talking with you all.

      Simon
       
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    2. Digital Doc

      Digital Doc Member

      Tinnitus Since:
      2018
      Cause of Tinnitus:
      noise induced
    3. Rinz

      Rinz Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      loud music
      Hi Simon,

      This sounds very much like my own story. I also used to play in bands and got tinnitus from that (including going to loud concerts/bars/etc). After a while I also habituated to that and life went on. Also later (in 2013) my T. came back stronger and I had a rough time for quite a while, but.... I also habituated to that.

      The only thing I can tell you is, it is likely that you will have other bouts of increasing T. problems during your life (God knows I have). But, as others can attest too, with time and patience, these will become manageable and you can habituate to them. Please trust me on this. I watch(ed) my ears like a hawk.. is that a new sound?!.. is that a new buzz?!.. OMG OMG OMG. etc.. spiraling down.. and yes it was.. it was a new sound.. and you know what.. that bad time passed again and life started shining again. I fell down from a swing last year (July) my T. spiked like crazy.. now one year later, I'm habituated.

      Your girlfriend knows that you have T., right? I think if you are in a caring relationship you can/should talk to her about how you feel. About canceling a trip, if I am honest, as you said its at the end of this year, right?, I would wait perhaps a month or a little bit more (if possible) before making any decisions. You may habituate and/or feel different about it then. And money is just money, health is much more important.

      What I have learnt (and am still learning) is that the moment something happens (increased spike/buzzes whatever) the panic mode goes on, and I need to put this mode off. I know I have it, so I'll try to deal with it in a calm way (which does not always work). The most important thing for me is to get my sleep back. So, I occasionally use some medicine (clotiazepam) to calm down, but I try to take as few drugs as possible. Once my sleep is back, then usually things resolve on their own. Also, I stopped drinking alcohol, refrain from too much coffee, bike to work whenever possible.

      If your job involves screaming youngsters I also recommend wearing ear plugs. I have Elacin ER-25 which I love. I rather loose 1000 dollars then losing my plugs. The brand doesn't have to be Elacin, but I do recommend custom mold plugs with some filter, which are super easy to put in (only couple of seconds) and have good protection.

      In any case.. I am telling you that you will feel better, not right now perhaps, but please be patient and give it some time. Oh yeah, check your ears for earwax with an ENT and perhaps if there is anything else wrong. Just to be sure.

      Wish the best for you.

      Rinz
       
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    4. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      Welcome to this forum, all the good users are people with autism or other mental problems.

      We are always ranting about curative based tinnitus research being ignored and palliative care holds back research from advancing. Everyone else is in the "learn to live with it crowd and doesn't pay attention to the politics of the tinnitus world.
       
    5. AUTHOR
      AUTHOR
      Simon101

      Simon101 Member

      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Noise Trauma
      Hi Rinz,

      Thanks for your reply I really appreciate it. It's comforting to know that you have recovered from various spikes. I can relate 100% to watching my ears like a Hawk. Seriously, I remember when I was first diagnosed I was scared of all sound. I would monitor everything, TV, Radio, Traffic sounds etc... I became obsessed and carried ear plugs with me everywhere. Everyone thought I was crazy, but I guess not many 17/18 year old kids need to do that. Man, can't believe I have survived all this time and now I'm at the point of impending doom again

      I had a couple spikes early on, but I am struggling to remember how I habituated to all of this. I must have gone years without it bothering me. But now, every emotion from 2003 has come flooding back, it just feels worse because I have so much responsibility now. However, I am trying to keep a positive attitude and hope that it subsides in the coming weeks.

      My Girlfriend knows yes, I told her today how bad it is affecting me. I'll still go away at the end of the year. I travelled multiple times around the world over the past decade so I don't see why it should stop me now.

      Thanks for the ear plug recommendation, I'll check those ones out. In the meantime I have a tub of Hearos Foam plugs I can use. I think I am going to look for a career change soon, wouldn't mind working in a quiet environment but no idea where to start. I'll focus on that when I get over this spike.

      And yes I have an appointment booked with an ENT in about 3 weeks (quickest I could get in.)
      I also cut out sugar, caffeine, alcohol as well. I'm thinking of getting sleeping tablets if I don't get much sleep tonight.

      Is there anything else you recommend that has helped you over the years? Guess I'm just looking for all the resources and support I can get.

      Thanks so much
      Simon
       
      • Like Like x 1
    6. Lane

      Lane Member

      Tinnitus Since:
      February, 2018
      Cause of Tinnitus:
      Ototoxic Drug
      Hi @Simon101 -- So sorry to hear how difficult things have gotten for you. In case you're interested, I've posted fairly extensively on how a home mHBOT I purchased (for $7,000) has been a godsend for me. Immediately upon using it, my sleep improved signficantly, and I was able to get my brain and nervous system to relax in a way I had come to believe I'd never be able to again.

      If you're interested in checking out more of my experiences, just enter mHBOT in the search feature, and then enter my username "Lane" (Sesarch Results HERE). You'll get lots of hits. Just to mention, in some areas, these mHBOT chambers can be leased out for about $600/month. which would give you a chance to see what it might do for you before investing in one of your own. -- All the Best...
       
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    7. Rinz

      Rinz Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      loud music
      Hi Simon,

      Yeah, I know exactly what you mean.. I also had some long periods (years) after the initial T. that it didn't bother me so much and forgot how I coped with it. After 2013 it got a bit worse, so I started to avoid noisy places, like restaurants with many people, clubs/bars, theme parks, movies, etc. but basically that's no problem for me now, I can do other stuff with my life.

      I know you feel that impending doom will strike you, but.. it won't.. you will feel shit for a while (sorry to say it this way) but it is extremely likely that you will habituate to whatever you are experiencing right now again. This has been my experience over-and-over again. That doesn't mean that I don't freak out sometimes still if something happens. Like recently, I think I have become more sensitive to sounds and that freaked me out, but I could find my calm more quickly than in the past, due to the experience that I will habituate and become relaxed again.

      My strategy is:

      (1a) check ears with an ENT, just to make sure there is nothing physically wrong.
      (1b) check sites like tinnitus talk for others' experiences and possible things I could do.
      (2) make sure that I sleep enough. if I do not sleep, (a) the T will become worse, (b) my mood will become worse, (c) everything will basically become worse, so this is a top priority for me.
      (3) use a masking machine. I bought a couple mostly from "adaptive sound technologies" company who makes stuff like the lectrofan (which I have) but basically other sound machines will also do. If you don't want to buy it, then you can use an app like "sound pillow" on your phone.
      (4) I try to "calm the hell down" and BELIEVE it will pass although it hasn't yet. I'm telling you, it is very very veeeeeeeeryy likely you will habituate or it will disappear altogether. You can't heal a broken leg in one day, you need to be patient too. I found it the same to be the case with my ears. I think many others on this forum will tell you the same.
      (5) use my ear plugs in noisy situations (like long car drive, etc)

      I think its okay to get sleeping tablets, just make sure to not get dependent on them, and that they are not damaging your ears somehow. I typically use zolpidem (for sleeping, when it gets really bad) and clotiazepam (to calm down) in stressfull/initial situations. But, I recommend to consult a doctor before taking anything in any case.

      I am sure you will feel better soon, but you seem to be in the "mourning phase" now which will at some point be followed by an acceptance that your T spiked to some extent.. once you calm down and habituate your situation will definitively improve!

      Take care,

      Rinz
       
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    8. AUTHOR
      AUTHOR
      Simon101

      Simon101 Member

      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Noise Trauma
      Hi Lane,

      Thanks for this info, I will check it out. Getting a good night sleep is one of my main priorities.

      Simon
       
    9. AUTHOR
      AUTHOR
      Simon101

      Simon101 Member

      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Noise Trauma
      Rinz,

      Thanks so much for all the words of encouragement. If I managed to Habituate before for so long I'm sure I can do it again. All good with saying I feel like shit, that's how I feel haha. If I can't get a good night sleep I'll get some meds from the doc.

      I'm not sure what country you live in so don't know what your laws are but have you tried any CBD/THC for treatment? All good if you don't want to answer.

      Sorry to keep bothering you with questions and thanks for laying out your strategy.

      Simon
       
      • Like Like x 1
    10. Rinz

      Rinz Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      loud music
      no worries Simon.. many people helped me in this forum.. I am glad I could help a little bit back..
      I live in Japan.. CBD/THC = enjoying my T. from inside bars.. so no.. i didnt try those haha..
       
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