Long Term People, Anything You Wish You Had Been Told...

Discussion in 'Support' started by linearb, Apr 30, 2015.

tinnitus forum
    1. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      ..at the very beginning of the whole thing? Sometimes it seems like the only useful thing to say is "it really does get better even if the sounds don't", but no one ever believes that (I didn't!). If you could go back to the first night of panic about tinnitus once the realization of permanence had begun to sink in, what would you tell yourself?
       
    2. I who love music
      Cheerful

      I who love music Member

      Location:
      Michigan
      Tinnitus Since:
      mid seventies
      Turn the music down.
       
      • Agree Agree x 1
    3. Geo

      Geo Member Benefactor

      Location:
      California
      Tinnitus Since:
      11/2012
      I feel if i knew real knowledge at first i maybe wouldnt be in the position i am.. Instead believed my docs and ents which realizing now they didnt have a clue either but still prescribe u meds and tell u it is ok.. Mostly probably finding this site the first day i being knowledgeable it took me being in the condition i am now to find this site and knowing the things i know now
       
    4. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      I do not know what I would tell myself, but if The Hub truly evolves into the resource it has the potential to become, it would be comforting to know that I had a place to turn for information, clarity, and reassurance. And I guess we all have @Markku and @Steve H to thank for that.
       
      • Like Like x 7
    5. Mark Beehre
      Facebooking

      Mark Beehre Member Benefactor

      Location:
      Wellington, New Zealand
      Tinnitus Since:
      05/2008 // 11/2014
      I'd be hacked off to go back there again to be honest...you can tell yourself whatever you like...but you have no control over your limbic response or nervous system...it would suck! :)
       
      • Like Like x 1
    6. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      I would tell myself don't see a doctor, just relax and go to sleep. I never really had bad T until I went to the doctor and was put on meds. After the meds I lost half my hearing I look back at my original T and I would have gotten over it in a few weeks and been back to life.
       
    7. RichL
      Inspired

      RichL Member Benefactor

      Location:
      Palmerston North NZ
      Tinnitus Since:
      1990
      Cause of Tinnitus:
      Acoustic trauma
      Don't start using ear plugs full time, it won't make the noise stop!

      Too late now though!:(
       
    8. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      There isn't really anything I wish I would have been told, as such. But there is one "thing" I wish I would have known to start off with: that audiograms cannot be used to diagnose tinnitus (even if the onset of tinnitus is related to an auditory insult and/or noise exposure). Like most people with relatively good hearing, I therefore went on a wild-goose chase trying to locate the cause behind my tinnitus onset (as the ENT I had seen had ruled out hearing loss). I wasted something like $2000 with trips to the chiropractor and procaine injections to the back of the neck as well as follow-up visits with other ENTs, neurologists, ultra-sound scans of the blood vessels in the neck, an EEG scan, an MRI scan, as well as follow-up visits with my GP at the time.

      Had I been aware of the wisdom of Dr. Wilden in relation to hearing loss, high-frequency audiology testing, as well as basic concepts of the physiology of the inner ear, I would have been much more assured of where the problem lies in 9 out of 10 cases (regardless of the onset of tinnitus). While Dr. Wilden may not be able to treat patients with tinnitus (at least not in all cases), he at least has the knowledge and reassuring behaviour from several decades of dealing with tinnitus patients. Dr. Wilden would never send a patient for tons of unnecessary tests, because he knows exactly where the problem lies to begin with. You never get a wavering answer when you sit down for a consultation with the man.

      That is what I wish I had known.

      attheedgeofscience
      30/APR/2015.
       
      • Like Like x 1
    9. Asian

      Asian Member

      Tinnitus Since:
      4 weeks
      Don't let anything touch your head ! It has got pretty devastating consequences like permanent tinnitus. I didn't knew what a concussion was before i got hit and I am a doctor of concussions now after a year :banghead:
       
    10. marqualler
      Nerdy

      marqualler Member Benefactor

      Location:
      Minneapolis, MN
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Ear infection / Mild Noise Induced Hearing Loss
      On @Dr. Nagler's note I really wish I had had the "Don't Panic" guide immediately (which will be featured on the new Tinnitus Hub!)

      I was told numerous times that I should wear hearing protection at concerts and band practice and not listen to loud music on headphones throughout my life, but I didn't listen. So I wish I had heeded that advice!

      One of my best friends has always worn earplugs to concerts, and whenever we made fun of her for it, she repeated her mom's mantra, "There's nothing funny about hearing loss!"
       
      • Like Like x 2
    11. marqualler
      Nerdy

      marqualler Member Benefactor

      Location:
      Minneapolis, MN
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Ear infection / Mild Noise Induced Hearing Loss
      • Helpful Helpful x 1
      • Informative Informative x 1
    12. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      I guess mine would be "you may never learn to love your tinnitus, but over time you will discover many fascinating things about your own mind as a direct result of your tinnitus."
       
    13. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      I really like that one!

      Some people talk about "making tinnitus your friend" and stuff like that. For me, I could never possibly make my tinnitus my friend or learn to love it.
       
    14. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      I agree! But, "making friends" with something is (to me) very different than "approaching something with an attitude of openness and friendliness". I find that approaching things I am inherantely adverse to with this attidude is productive, and I really like this quote from Rajneesh:
       
      • Like Like x 2
    15. awbw8
      Balanced

      awbw8 Member Benefactor

      Tinnitus Since:
      04/2013
      I wish I could like this twice. Lovely, inspiring words by you and Rajneesh!
       
      • Like Like x 1
    16. awbw8
      Balanced

      awbw8 Member Benefactor

      Tinnitus Since:
      04/2013

      I am very happy for anyone visiting that site that it was redesigned and I think there are a ton of valuable bits of information on the patient roadmap page, but I just wanted to say that I think it highlights how special and unique TT (or the future Hub) is. Not that it's better or worse, but it's filling a gap. The panic guide is really personal feeling, as opposed to the ATA or other sites. That's fine, but the TT page feels like a friend talking to you, which is what this whole place is like. That is something I wish I had found first when I punched in "tinnitus" on the internet a couple years ago.

      When I think back on T, I have a very specific memory of Dr. Hubbard (someone referred me to him in the real world before he even joined TT), sitting me down (I was a sobbing mess, an adult in his office with my Mom) and telling me, "It will either go away or you will habituate, this happens for the majority of people." He told me about his own tinnitus story and gave me a little hope to get me to the next day. What he said was more meaningful to me in my suffering because he had been in my shoes and was now fine. For those of us who don't have Dr. Hubbards in town, TT is is doing the same thing for many. People who are positive and living good lives and also "in our boat" giving a little hope and advice to newcomers so we don't feel as alone with a condition that is isolating by nature.

      So, there's not much I wish I'd been told after I had just gotten tinnitus - maybe to try steroids or HBOT sooner, but not sure that would have done much either. I wish I hadn't read any other T forums on the internet - scary. :eek:

      The above is what I'm glad and grateful I had. Yay TT and Dr. Hubbard!:thankyousign:
       
      • Like Like x 3
    17. marqualler
      Nerdy

      marqualler Member Benefactor

      Location:
      Minneapolis, MN
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Ear infection / Mild Noise Induced Hearing Loss
      I honestly "like" AND "agree" with this. I really wish this had been my first stop when I was frantically googling "ears plugged and ringing" and getting things like the "WikiHow" guide about tinnitus which stated right in bold about how bothersome tinnitus is and how many people who get tinnitus commit suicide. NOT what I needed to hear right away.

      Not to dwell in the negative though because that doesn't diminish how much I love this site and community. What other tinnitus communities can you say have as strong of a following and as much positive energy driving them as this one does?
       
      • Agree Agree x 2
    18. Don't read the buzz feed article about that Jason character..

      I wish I hadn't gone online period.
       
      • Agree Agree x 1
    19. SleeplessSoul
      Insomnious

      SleeplessSoul Member

      Tinnitus Since:
      November 2014
      I wish I didn't read that benzos were dangerous and tried to taper off them and got screeching tinnitus as a result.
      maybe if I left well enough alone I might be ok.
       
    20. LillianLexicon97
      Spooky

      LillianLexicon97 Member

      Location:
      U.S.A.
      Tinnitus Since:
      12/2013
      Cause of Tinnitus:
      Loud noise: Headphones
      I think for lots of people it would be turn it down.
       
      • Agree Agree x 1

Share This Page

Loading...
If you have ringing ears then you've come to the right place. We are a friendly tinnitus support board, dedicated to helping you discuss and understand what tinnitus treatments may work for you.