What's the worst part about having tinnitus?

Discussion in 'Support' started by Logan, Jan 16, 2014.

tinnitus forum
    1. Logan
      Stressed

      Logan Member

      Location:
      Missouri
      Tinnitus Since:
      03/2013
      Cause of Tinnitus:
      Ear infection
      I was wondering what you think the worst part about having tinnitus is, I think for me it is the constantly worrying that it will get worse.
       
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    2. Lynnette
      Blah

      Lynnette Member Benefactor

      Tinnitus Since:
      Aug 2013
      Me too...and wondering if I'll ever get through a day in my life when it isn't such a focus that I thinking about it every minute of the day. Also, how am I going to cope with this as I slowly age into an old woman.
       
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    3. mick1987
      No Mood

      mick1987 Member

      Location:
      UK (England)
      Tinnitus Since:
      08/2012
      Cause of Tinnitus:
      Acoustic Trauma
      Hopefully within 10 years there will be a cure, or the very least a treatment that lowers the volume.
       
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    4. Stina
      Psychedelic

      Stina Member Benefactor

      Location:
      Tartu
      Tinnitus Since:
      11/13
      Each day has enough trouble of its own.
       
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    5. I who love music
      Cheerful

      I who love music Member

      Location:
      Michigan
      Tinnitus Since:
      mid seventies
      I retired a couple years ago. I was going to spend time going to concerts, festivals, and playing (electric) music. Not now.
       
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    6. Jeff M.
      Cowabunga

      Jeff M. Member Benefactor

      Location:
      La Jolla, CA
      Tinnitus Since:
      Oct. 2012
      Cause of Tinnitus:
      Idiopathic
      Matt 6:34
       
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    7. Jeff M.
      Cowabunga

      Jeff M. Member Benefactor

      Location:
      La Jolla, CA
      Tinnitus Since:
      Oct. 2012
      Cause of Tinnitus:
      Idiopathic
      Hey Logan, great question! Because there are so many different manifestations and levels of tinnitus, and it affects people in so many different ways at various points along their journey with T.

      First, I have followed your posts lately, and my estimation is you are only going to get better!!(y) You've been (or are still in) to the dark place many of of experience early on with T. My first 4-5 months were pure hell!! But it does get better!!

      But to your question, for me the worst part of having T is lack of sleep and the effects of that. Loss of concentration during the day, edginess, memory loss, etc... Although all of that has gotten much better lately!!:)
       
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    8. Jeff M.
      Cowabunga

      Jeff M. Member Benefactor

      Location:
      La Jolla, CA
      Tinnitus Since:
      Oct. 2012
      Cause of Tinnitus:
      Idiopathic
      Lynnette, that day is coming!!! Hang in there!
       
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    9. Steelbanks
      Happy

      Steelbanks Member

      Location:
      New Zealand
      Tinnitus Since:
      1998
      Agree with Jeff. It's tough but hang in there and try and live a full life. My Ear specialists have all said keep doing what you do. My T got to a point where it got a lot louder whenever I played sport as the blood rush would make it louder. Doc told me to keep playing basketball, whatever - you should never stop doing things because of your T (bar perhaps loud concerts!). If you do it is starting to win and you're starting to close up and lose the battle.
      I often find when I'm busiest I habituate better. Then I find at the end of the day my T wasn't even part of my day. It's a nice feeling...
       
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    10. Riikka

      Riikka Member

      Location:
      Finland
      Tinnitus Since:
      09/2007
      For me the evenings before going to bed are the worst part of T, as I have a hard time relaxing and falling asleep. I would also like to sleep better. Fortunately my sleeping has already improved somewhat from what it was in the autumn. Sometimes I don't like to wake up in the morning and realize my T is just as loud as the previous day. Would be nice to have quiet T days also.
       
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    11. Relic Hunter
      Cynical

      Relic Hunter Member Benefactor

      Tinnitus Since:
      01/1990
      I have the same thoughts..I have days that my T is so bad I know I could not live with it for any length of time at that level..It always calms down but I know it has the potential to rise to unbearable levels.
       
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    12. Carlo
      Balanced

      Carlo Member Benefactor

      Location:
      Italy
      Tinnitus Since:
      07/2013
      Taking the necessary precautions; limiting my social life; worrying that T will get worse
       
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    13. Magpie
      Sporty

      Magpie Member

      Tinnitus Since:
      04/15/1999


      I never worry that it will get worse. In 99.9% of cases it won't get worse unless you do something deliberate and basically stupid. My hyperacusis resolved itself over a period of time and despite my initial fears I have encountered noise of over 80db's on many occasions including today when I rode past 2 workers using a concrete cutter. I turned my head as I passed it and even though it was loud my exposure was brief and not direct. I could be killed any day on the road but I won't give up something I love doing. You should'nt put your life on hold but you can use common sense. Simply you have a choice to either put barriers in front of you and fear your tinnitus or live your life as best you can. We know shit happens and it often happens despite our best efforts to be careful, respectful, considerate or just a decent human being, i.e. good people. There is no rhyme or reason or logic, it's the luck of the draw.
       
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    14. Glen Morse
      Cold turkey

      Glen Morse Member

      Location:
      Waterloo N.Y.
      Tinnitus Since:
      08/08/2010
      I agree with a lot of what others say. That is that the worst of it is behind me. I came down with it in 2010 and it was loud and constant for many months, but now I have just as many good days as bad. so it does keep geting better. I did make a lot of changes to my life stile, which you are learning to do also. We are forced to make changes because of this alarm going off in our head. To tell you the truth, I am a lot more healthey than I was in 2010, and the alarm in my head is a lot less. Keep going forward in listening to your body and make the changes to make the alarm go away! I believe that it will go away!
       
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    15. pef

      pef Member

      Location:
      Georgia, USA
      Tinnitus Since:
      3/16/2013
      Stop worrying about T getting worse. The only thing you can control is exposure - just pack a set of soft foam earplugs with you for "just in case" situations, or just close your ears with your fingers.

      Other than shielding yourself from excessive loud environments, you have no control over what will happen with your T. Don't worry about what you cannot control. You will waste a lot of energy doing so.
       
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    16. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      not being able to let go of thoughts and dive into inner silence
       
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    17. Denny

      Denny Member

      Tinnitus Since:
      Jan 2013
      Worst part is you have absolutely no control over it. You only have control
      Over your reaction. When sufferers accept this t will lose it's grip.
       
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    18. missZZ
      Wishful

      missZZ Member

      Location:
      CA
      For me the Worst part is the reflection on the past and wondering if there was something I could have done better to avoid it and from time to time wondering whether it will unexpectedly go worse/changes the tune. I guess the not knowing May be the worst lol :) but hey can't predict everything oh well
       
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    19. billie48
      Sunshine

      billie48 Member Benefactor Hall of Fame Ambassador Team Research

      Location:
      Vancouver, Canada
      Tinnitus Since:
      03/2009
      I will have to address this question in two stages. In the initial stage, it was all hell.

      I usually woke up in the morning with loud screaming ultra high pitch tinnitus shrill, something which used to drive my brain into relentless anxiety and panic attacks on auto mode before I was fully awake enough to reason myself out of these attacks. In the first few months, I had to immediately reach for meds, Ativan, Prozac & what have u whenever my loud T woke me up. No amount of will power could stop this process, so much so that I was worrying my doom would be a foregone conclusion. I mean how do you survive something which didn't give you any chance to fight it. The problem was that I had suffered decades of anxiety and panic disorders. My brain tended to react with anxiety/panic mode on life's challenges. So my brain facing these new and alien T sensation had no chance. It was so freaked out by my T (and hyperacusis soon after) that it just caved into panic on auto mode. Each day was a long dark day. Every night when I went to sleep, if I could sleep at all, not wishing to wake up to repeat the 'torture' cycle again. I mean besides dealing with T & H, I also had to deal with repeated episodes of anxiety and panic attacks.

      It is not just the ultra high pitch loud tinnitus shrill or the piercingly hurtful hyperacusis, there were also the dreaded symptoms of anxiety and panic attacks. These A & P attack were very alarming and hurtful sensations, with heart attack alike symptoms of chest pain, tightness of chest, shortness of breath, heart palpitations, sore muscles and pains, headaches of all kinds, sharp pain like migraine, tingling pain like being pinned all over the skull, and numb pain with the brain like being enveloped in a fog not able to think clearly. There were nightmares, profuse sweating, strong adrenaline rush, fears & phobia about things & about the future, feeling disoriented, dizzy, lost and helpless. These symptoms coming on auto mode made it very hard to live with my T & H. During the darkest period, day and night, T, H, A, and P all conspired to attack me with great sufferings, both mind and body, causing great despair and inevitable depression and sleeplessness. I had to depend on meds to survive during these dark, dark days. My situation was hopeless and often the big 'S' word was dangling in front of the tired and stressed out mind as it saw no way out, no light whatsoever at the end of that long dark tunnel. I never thought I would recover.

      Well, tell me about the worst part about my tinnitus back then. It was all of the above. Now, it is a different story. I have recovered from the nightmare and the horror show. T doesn't scare me anymore and it cannot even get my brain to zoom on it. The brain now hardens to the sound which is still same as loud and screaming high pitch but I don't give a dime. The T nightmare is over for me and I enjoy my life now regardless of what T does any given day. Freedom at last.
       
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    20. Alex Senkowski
      Tolerant

      Alex Senkowski Member

      Location:
      Canada
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      Otosclerosis
      One of my favorite horror films is Ingmar Bergman's 'Hour of the Wolf' in which Max Von Sydow plays an insomniac artist. I'm always amazed when film can capture something so banal and personal as insomnia without going over the top with it. The movie has long stretches where Max just sits with a meager candle in a dark bedroom and always seems to be mere inches away from sleep but it never comes to him. His wife is always with him, she's able to sleep but stays awake nonetheless so he won't feel alone. The two of them are trapped in this dark, sleepless world with demons that will never leave them in peace. The 'hour of the wolf' is the hour between 3 and 4AM, the hour in which people tend to die and babies tend to be born. That damned hour during which our demons are at their strongest and we have no defense against them because we're just so tired. In the movie, Max is kept awake by his guilt over what he's had to do for his art whereas we have out T. Given what happens to Max over the course of the film, I think I'd rather be kept awake by T than by guilt.
       
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    21. Jeff M.
      Cowabunga

      Jeff M. Member Benefactor

      Location:
      La Jolla, CA
      Tinnitus Since:
      Oct. 2012
      Cause of Tinnitus:
      Idiopathic
      Billie, I really appreciate your posts. You articulate so well what so many of us have gone through, both bad and good! I am so stoked to hear where you are, you've made it to the "other side"! I am right behind you. T still bugs me, but it's just really more of an annoyance. Only very occasionally do I even entertain panicking or freaking out. And now almost always stop any anxiety or panic before it sets in. Your post and experience are very encouraging. I hope others receive that as well. Best to you!!
       
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    22. Grace
      No Mood

      Grace Member

      Tinnitus Since:
      11/14/2013
      Constant fear and worry that it will
      Only get worse...that there will never
      Be a cure ( which i pray and hope for
      One everyday) and that people
      Who dont have this really dont understand.. Its like you have to play an audio file or video sound of T for them
      To then realize oh shit thats horrible!! Glad i dont have that! And everywhere you turn you see people blasting there ears with music and working in loud places without earplugs.. And if you go to tell them to protect there ears they say i dont care.. Yeah until you get this then you will care. Thisss nonsense needs to finally be cured.. And the worse part bout it is being so frusterated and angry at doctors for not being able to figure out how to get rid of it. Its always possible treatments, new hope, but seems to
      Never be something that is possitively figured out and can be erased!
       
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    23. EdnaLegume
      Cheeky

      EdnaLegume Member

      Location:
      Maryland
      Tinnitus Since:
      10/1999
      other than the actual noise in my ear? lol I worry it will get worse, and the other thing that annoys me is that I'm constantly thinking about it ever since it spiked back in December. I've been doing really good with staying positive and taking the "I could care less" approach, but frankly it's just always on my mind. Like a song I can't get out of my head.
       
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    24. Per

      Per Member

      Tinnitus Since:
      06/2013
      I totally follow you on this.
       
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    25. Neenie
      Depressed

      Neenie Member

      Tinnitus Since:
      09/2013
      Hi all,
      Just wanted to say, that I've been to a couple of Audiologists that told me that it will certainly not get worse (unless you have some loud noise exposure again in the future). And by "loud" they mean REALLY loud like a concert or working on a building site or things like that. Not everyday noises like the movies, or pubs, or coffee shops. They are all within acceptable loudness ratings. So trust that. It won't get worse. So the actual worst thing that can happen to you is that is stays this bad. Which actually is also unlikely. In fact, it'll get better, given time. That last sentence I struggle to believe coz mine hasn't gotten any better at all. But if I don't have faith in the thought that it may get better then I'm just sentencing myself to a life of misery.
       
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    26. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      I know people who have gotten permanent intrusive tinnitus from a single noise exposure in a pub due to the loud speakers. Your audiologists' advice is quite bad, to be honest. Sometimes the cinema can be insanely loud too, over 100 dB in some sections. At the very least I hope the audiologists you consulted advised wearing ear plugs?

      And loud noise isn't the only thing that can make tinnitus worse. Did your audiologists mention ototoxic medications at all? Or head/neck trauma; tumors; otosclerosis, all kinds of things can make tinnitus worse by a tenfold. Some of which we have no control over at all, so in a way (like health as a whole) what sometimes happens cannot necessarily be avoided.

      Of course loud noise is the #1 cause for tinnitus and its further increases. I understand audiologists don't want their patients to worry needlessly, but it's also really important that people are informed in great detail how to best avoid further worsening of their condition.

      Wanted to give my .2$...

      Markku

      PS. And this is what scares me sometimes a lot. Knowing that it *can* get a lot worse even when you are careful. But life cannot be lived in fear. It's just not healthy to worry about the tinnitus too much. Besides, life is fragile anyways, and we should appreciate every new day we get. Sometimes easier said than done...
       
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    27. Neenie
      Depressed

      Neenie Member

      Tinnitus Since:
      09/2013
      Heya! Yer, I've been skeptical of what they said about loud noises, like the movies, or pubs, being ok. I do have some really cheap earplugs which I have in my handbag but have no idea if they even help at all. I mentioned ototoxic medication to both my Audiologists and also psychiatrist and they just dismissed me as if I was speaking bullshit and being paranoid. As for neck injury, I do have an extremely tense neck. But again, was told this doesn't contribute. My ear nose and throat surgeon actually told me in these exact words "i have no fucking idea why you have tinnitus". And then I left feeling pretty shit about things.
       
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    28. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      I wish there was an icon next to "like" for "I want to punch your doctors".

      :(
       
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    29. Stelly

      Stelly Member

      Location:
      Montreal
      Tinnitus Since:
      06/2010
      Days of mental mistakes and confusion. Can someone answer why there are days where my t is hardly audible and the next day it's back with a vengeance. Is it because the nerve or neurons are fired out and are replenishing. Just something scientist should look for .
       
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    30. billie48
      Sunshine

      billie48 Member Benefactor Hall of Fame Ambassador Team Research

      Location:
      Vancouver, Canada
      Tinnitus Since:
      03/2009
      Thank you Jeff for the kind words. I am sure you will be there on the 'other side'. You have the right attitude and approach. The only thing will be time. It took me a few years to get used to T to the point my brain just hardens to it and don't care about it any more. You may take less time to be there. If my posts can be of any help to any one, it will be well worth my time. I am returning the kindness I received from some selfless & caring folks before. So I am doing my part to offer some hope to the newer sufferers. I wish you all the best too.
       
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