Folks With Tinnitus for Over Ten Years

Discussion in 'Support' started by Sean, Jul 7, 2014.

    1. Sean

      Sean Member

      Tinnitus Since:
      01-01-2011
      Hi every one ,
      I am just wondering if every one with Tinnitus for very long time can describe how life has been after getting T. do you guys feel you missed out on life a lot ?was it too much to go through ?is life some what normal besides occasional pain ?
      I ask these questions because I am 40 and I am worried how my life is going to be in next 20-30 years ..just too worried about what future holds for me .I am sure other folks have these questions .
      Thanks
       
    2. derpytia
      Pooptoast

      derpytia Member Benefactor

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014 (many increases since then)
      Cause of Tinnitus:
      Progressive hearing loss / noise / ETD
      I would also like to know the answer to these questions as I am only 20 (will be 21 soon) and I have so much more of my life left to live with this condition.
       
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    3. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      01/2014
      My dads had it for like 25 years or something, not exactly sure, but he has never let it hold him back from anything. Before i was born, he got married had two kids, worked, was always involved in soccer which is his obsession, I think the fact that he didnt have a computer and could not go online and read all the horror storeis many have helped him a great deal. Hes is the most laid back, calm, and collected person i have ever know. His T has never gotten worse either, after tons of loud wedding, 4th of julys, and anything else you can think off, don't know if he didn't care, most likely he just did not know any better. But you can still a great life Sean.

      My uncle has had it ten years or so, and hes doing great as well.
      @Sean
       
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    4. yonkapin

      yonkapin Member Benefactor

      Location:
      Melbourne, Australia
      Tinnitus Since:
      March 2012
      My dad was moderately/severely hearing impaired for many, many years. He was also extremely stubborn and in spite of working in the tools and machinery industry, he would never, ever use any form of hearing protection in any situation - it was pretty ridiculous!

      While I knew he was hard of hearing, I thought I'd ask him if he had it when I was first dealing with my tinnitus. Initially he was confused with my question but after I had explained it a bit more, he stopped for a moment to listen and he was like "Oh yeah, I have that", smiled and that was it. He had no idea what it was and never cared about it, and I have no doubt it would've been loud because his hearing was so bad. I think the fact that he had no idea what it was, coupled with always having to work and be busy, it just never became an issue for him.

      Another quick example I can give is myself actually, and I often forget about this but I grew up with humming in my right ear that I would mostly hear at night before going to sleep. I think I first experienced it when I was 7 or 8 then it would come and go for months at a time for the rest of my life. The fact that I grew up with that noise meant that it was never an issue for me, ever. I didn't even realize anything was wrong until I got what I consider my "real" or more serious tinnitus, which is now a bunch of different frequencies.

      You'll probably get a bunch of different responses, people who have had it for decades and are just fine and others who have had it for just as long but can't ever seem to get over it or habituate. The biggest thing to take away from it, in my opinion, is that a huge component of dealing with tinnitus comes down to mentality. You can either let it consume you or try overcome it and move on with your life. Having said that though, it's hard because everyone is different and it's a constant learning process, at least it has been in my experience.
       
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    5. Telis

      Telis Member Hall of Fame

      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Drugs barotrauma
      Great posts... I am also 40 and always get anxiety about this thought as well.
       
    6. LeQuack
      Gloomy

      LeQuack Member Benefactor

      Location:
      United States of Europe
      Tinnitus Since:
      2005
      Cause of Tinnitus:
      Bad luck and bad genes
      I've had it for 10 years and I definitely feel like I've been in prison for at least a couple of years. These last few days were the worst, another spike which seems like it's not going away and no way to mask it. :sick:
       
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    7. AUTHOR
      AUTHOR
      Sean

      Sean Member

      Tinnitus Since:
      01-01-2011
      My grandma had Tinnitus ..she used to complain all the time about ringing . She passed away 10 years ago ..I wish I had a chance to ask her how her journey was with T.
      I have had decent life ..used to party as much as I could in my 20s . I was over going to loud bars and clubs at the age of 28-29. I wouldn't even go to bars/clubs if even if I didn't have T..so not going to clubs /bars is not a big concerns . Some times old friends want to meet at a bar or we just end up going to a loud bar .i just don't know what to do at that point ..for me staying there not an option .it seems now every bar is loud !even some cafés are loud with live music. I am at my sisters house and they want to go to movies ..I can't go! I guess there is still a way we can enjoy life . We just have to make adjustments. I wish we didn't have to ,but it is what it is.
      I really feel for young people who still wants to go to clubs/bars /concerts .
      I now have two new best friends . tinnitus and ear plugs lol
       
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    8. lapidus

      lapidus Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Got T as a kid (11 years old). Habituated super fast, like in just a couple of weeks (I guess it's easier when you're a kid and don't have that kind of anxiety and catastrophic thinking adulthood brings you). Ironically, I had seen a segment on the news about tinnitus just some months earlier so I knew what it was and I also knew nothing could be done about it. Been living a completely normal and happy life until I got severe hyperacusis in november 2013 (for reasons unknown). My T has gotten worse as a result but it's still child's play compared to H.
       
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    9. ampumpkin
      Amused

      ampumpkin Member Benefactor

      Location:
      Montreal
      Tinnitus Since:
      Onset: 12/2007 Increase: 04/2014
      Cause of Tinnitus:
      2007: Meds(Antidepressant) 2014: Meds(Antibiotics)
      @lapidus

      that is what scares me the most about T... an increase for no reason... I fear that so bad :(
       
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    10. lapidus

      lapidus Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      There probably is a reason though. I just havent figured it out yet. But I got tons of theories. The top theory is that I got H just because I've been living a normal and happy life with T. Now I have to pay for it. 100% habituation can be dangerous that way.
       
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    11. ampumpkin
      Amused

      ampumpkin Member Benefactor

      Location:
      Montreal
      Tinnitus Since:
      Onset: 12/2007 Increase: 04/2014
      Cause of Tinnitus:
      2007: Meds(Antidepressant) 2014: Meds(Antibiotics)
      @lapidus I was living a normal and happy life with T also up to May 2014 when I took another set of ototoxic meds :(
       
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    12. ampumpkin
      Amused

      ampumpkin Member Benefactor

      Location:
      Montreal
      Tinnitus Since:
      Onset: 12/2007 Increase: 04/2014
      Cause of Tinnitus:
      2007: Meds(Antidepressant) 2014: Meds(Antibiotics)
      I'm glad that I don't have H along with it. I have 3 kids and they scream all the time!!
       
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    13. Carlos1

      Carlos1 Member Benefactor

      Location:
      Boston
      Tinnitus Since:
      08/2013
      Cause of Tinnitus:
      Root Canal
      That's my greatest fear too....Its tough on the mind thinking about the future of our own T.
      I just try to live day to day and be thankful for the days where T isn't so bothersome.
       
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    14. Hammerhead
      Musical

      Hammerhead Member

      Tinnitus Since:
      1981
      Cause of Tinnitus:
      loud rock bands and concerts
      I've had Tinnitus since 1981, and now growing older my body does not mask it as well. Many years of foolishness in loud rock bands started this (confirmed by advanced hearing tests- noise induced hearing loss), but now in my research I'm discovering a confusing maze of potential issues.

      Following the discovery that MANY medications can lead to tinnitus and hearing damage (sometimes permanent), I recently bought the book "Ototoxic Drugs Exposed", and have begun a frightening journey into the world of prescription side effects (sometimes not listed with the medication).
      Per what I've read, high blood pressure can cause tinnitus, and high blood pressure meds to treat this can be ototoxic, causing a further problem.
      Tinnitus is a classic symptom of low Magnesium levels, and high vitamin D doses can deplete Magnesium levels, leading to tinnitus.
      For me, since they work so well on inflammation, NSAID over-the-counter meds (such as ibuprofen) have been an easily accessible medication with a very negative influence on my T. Nowadays I avoid them.

      This is just a sharing of my journey, not advice. I'm learning that my own hearing loss and subsequent tinnitus may be being aggravated and increased in ways I did not realize.

      In response to this thread..... I'm doing all I can to minimize my own behaviors that are increasing my T.
      I currently live in the years I used to worry about, with T at a level that is constantly noticeable and interfering with conversations, attention, and listening to the beautiful sounds of God's creation.
      I do get frustrated and sad about it.
      But the best approach for me is to be proactive- do all I can to minimize the increase (avoid ototoxic meds, wear hearing protection, address health issues, get enough sleep,etc).

      I'm also trying to consciously "listen around the tinnitus"-- mine is at a specific frequency, and rather than concentrate on it, I try to tune in to the environment around me, focusing on the sounds I want to hear and pushing back the ones I don't. I don't have to let it own me.

      Hope this helps someone.....
       
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    15. Stina
      Psychedelic

      Stina Member Benefactor

      Location:
      Tartu
      Tinnitus Since:
      11/13
      I dont have a lot to say about tinnitus as I have had it for such a short while. However I have had arthritis since I was 9 (I am now 23) and around 3 years ago I developed rosacea. Due to arthritis I have to be on meds my whole life, my ability to do sports is very restricted. If I walk up and down the stairs too much it is bad for me. The weather influences it (cold, humidity), my fingers and toes hurt in the summer for some reason. I have had eye infection and constant relatively dry eyes (not Sjoegren's although I might develop that). I have to wear warm clothes, avoid wearing heals too much etc etc. Rosacea stops me from sunbathing and spending time in the cold, i can not go to the sauna, do certain cosmetic procedures, drink red wine or in fact too much alcohol or eat spicy foods. Are these things a nuisance? Yes. Have they stopped me from leading a normal life? No. And quite ironically I am more fit than a lot of people my age.
      The hardest condition I have ever had is generalized anxiety disorder. This should give you smth to think about.
       
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    16. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      I have T for 24 years. No one can predict a relapse so why worry about it. I've had the onset of T(newbee) . I had two relapses that habituated. currently I'm on my third. First relapse I habituated approx 12 months. Second relapse approx 6 months. My thinking is this relapse should be between 6-12 months. I don't believe age has anything to do with habituation? It would be nice if we knew each other's age. 65 1/2 years old
       
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    17. ampumpkin
      Amused

      ampumpkin Member Benefactor

      Location:
      Montreal
      Tinnitus Since:
      Onset: 12/2007 Increase: 04/2014
      Cause of Tinnitus:
      2007: Meds(Antidepressant) 2014: Meds(Antibiotics)
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    18. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      Thanks. You took a spike in May, so did I. How are you doing?
       
    19. alifalijohn

      alifalijohn Member

      Tinnitus Since:
      04/15/14
      This helps very much, thanks for the info.
       
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    20. ampumpkin
      Amused

      ampumpkin Member Benefactor

      Location:
      Montreal
      Tinnitus Since:
      Onset: 12/2007 Increase: 04/2014
      Cause of Tinnitus:
      2007: Meds(Antidepressant) 2014: Meds(Antibiotics)
      @Ken219

      things are going better.. I'm getting used to the new louder T. It still is not back to baseline and I'm under the impression that it will never be.

      So I have decided to just live with it.
       
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    21. I who love music
      Cheerful

      I who love music Member

      Location:
      Michigan
      Tinnitus Since:
      mid seventies
      1974 - I was a kid playing LOUD music. I noticed I had ringing in my ears. I thought when I grew out of my teenage rock band phase the ringing would go away. It never did. I'm 54 now and my life is great.
      Tinnitus has been a positive motivating force for me. I don't like hearing it so I get busy. I married young, have 2 great grownup kids, I'm an artist, a retired sign painter, an instrument maker, musician, retired nurse and I bitch about my tinnitus. I hate it. Instead of driving me crazy, it drives me to get up and do something. That's how I cope.
       
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    22. LeQuack
      Gloomy

      LeQuack Member Benefactor

      Location:
      United States of Europe
      Tinnitus Since:
      2005
      Cause of Tinnitus:
      Bad luck and bad genes
      I think this world is best enjoyed without tinnitus.
       
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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've had it for 14 years, I'm 31 now. It's always been a high-pitched hiss loud enough to hear everywhere if I listen for it. It took me about a year I think to habituate. After that it didn't really bother me ever. I've played in my band for ten years, touring, going to cinemas and clubs, listening to music. I think I've had a pretty good sense about when to use earplugs though, and I always have them with me. It never got worse for me and I only had smaller spikes that went away after a night's sleep. I define my spikes as when the sound changes. My baseline can go up and down in volume too, but I know that this is a matter of perception and not actual volume. Sometimes, when drunk for ex, the hiss can get ridiculously loud and I always marvel at how I just don't care emotionally about it. It's quite amazing how your brain can adapt and accept things. I always hated reading online about people telling me that habituation works when I first got T. But believe me, it does work, better than you can even imagen. It's like magic.

      This changed about 3 months ago though after an accident with my stereo suddenly blasting on full volume. This spike is still going on and I'm a bit worried it won't go away. It's been changing and seemingly getting a bit better though, so hopefully it'll subside totally. It's sounds like one of my old spikes, which is a bit comforting. If my brain could heal it so many times before, hopefully it can this time as well.

      But to answer your question; it's different for everyone ofc, but I had it loud enough to always hear it, and I'd say it affected my quality of life by about 5% (before this spike). In short, not a big deal!
       
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    24. Ray Seddon
      Amused

      Ray Seddon Member Benefactor

      Location:
      Western Australia
      Tinnitus Since:
      1985
      Cause of Tinnitus:
      Unprotected hearing damage
      Hi everyone. I've had tinnitus since 1984, I'm 68 this year, coming up 30 years with T. I self-inflicted by years of driving open tractors and headers, by using rifles without ear protection, and working a lawn-mowing round for many years also without ear protection. For many years I was only aware of T in quiet moments so I had habituated with no real problems. About 15 years ago I began to have sleeping problems; my T would wake me up, so I started using a pocket radio with earphones playing very softly and that helped improve my sleep. About 12mths ago the volume increased significantly and I started looking for some answers and found this forum. This has been a great help to me, as for the first ten years or so I didn't even know what T was called. It didn't bother me that much because I had naturally habituated to an extent. Now is a lot harder. If I am occupied I don't notice it and can ignore it, but I also have some hyperacusis which affects my hearing somewhat - I have some loss but not to hearing aid level yet. I found the masking sounds technique and also Pawel Jastreboff's book - 'Tinnitus Retraining Therapy' which is the handbook for TRT. After reading that several times I got a whole new understanding of T and how to approach it. Currently I am coping OK, I have two mp3 players I alternate recharging on which I have about 8 sounds (nature, white noise, violin classical etc) on repeat. These play all night - not loudly - under the threshold of T as to habituate you must always be able to hear the T - I use the mp3s also in quiet moments and I think it is having an effect; 12mths ago the volume was very loud, now at times expecially in the mornings, it is a lot quieter. I am absolutely determined to habituate again. I still have good and bad days but it's better. I can't recommend Jastreboff's book enough - it is available on the web ( amazon) and not cheap but this is a lifetime thing and we need to understand the beast we battle. I love the camaraderie of this forum, it is a great help to me. We are not alone. Thanks guys.
       

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    25. Ray Seddon
      Amused

      Ray Seddon Member Benefactor

      Location:
      Western Australia
      Tinnitus Since:
      1985
      Cause of Tinnitus:
      Unprotected hearing damage
      I should have given credit also to Clyde Wychcliffe (Hush Tinnitus) who recommended Jastreboff to me - I also got some white noise from his site, and other maskers from Stevearrison on this site - these guys are selfless and IMO heroes in the world of T.
       
    26. Johno
      Dreaming

      Johno Member

      Location:
      Slovakia
      Tinnitus Since:
      6/07/2012
      Cause of Tinnitus:
      acoustic trauma
      I hope AUT00063 will help us all. ;)
       
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    27. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      Everybody talks about a baseline. Do you write something on paper? or is your baseline a memory thing? I habituated 3 times and when it relapses I think it goes back to the original level(loud). It takes time 6-12 months but I habituate to my sweet post.
       
    28. MikeA
      Musical

      MikeA Member

      Location:
      USA
      Tinnitus Since:
      1992
      22 years for me. Though ever-present, T was at a very low level for 20+ years. Was afraid for a few months at onset, but it faded some and I moved along. Went to college and got a few degrees and a good career. Visited the occasional loud social event when I wished, always with earplugs. T spiked a few months back but has dropped down to a level I can easily tolerate. Missed out and too much to go through? Not in my case. I admire those with positive outlook under intrusive T.
       
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    29. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      @derpytia You are still in the early stage of habituation. When you fully habituate you will be able to live a full normal life. I don't recall how you first heard T but always take care around loud noises.
       
    30. ampumpkin
      Amused

      ampumpkin Member Benefactor

      Location:
      Montreal
      Tinnitus Since:
      Onset: 12/2007 Increase: 04/2014
      Cause of Tinnitus:
      2007: Meds(Antidepressant) 2014: Meds(Antibiotics)
      @Ken219 how are you doing? Are things getting better??

      I think I am habituating also... the only thing that bothers me is the possibility of the T increasing in the future. That idea, I think, is slowing down my habituation because it creates anxiety.

      My baseline is a very low shhhhhhhhhhhhhhhhhh in both ears, slightly louder in the left ear, barely audible even in a quiet room, not reactive and NOT annoying.

      My T now reacts to certain sounds like the wind, crowds, traffic, when I start the shower or the washing machine...it is louder, screams at me when I go to sleep, is higher-pitched, can be heard almost everywhere.. I also have a morse code that is new and bells! The good news is, it varies a lot. For example, today, it's 100% back to baseline, the shhhhhhhhhhhh is very low, in both ears and I'm having a great day!!
       
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