I'm Hayley, Tinnitus for 21 Years and Counting

Discussion in 'Introduce Yourself' started by Hayls32, Apr 23, 2019.

    1. Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Hi everyone,

      I'm Hayley, I've had tinnitus for 21 years now. What started off as pulsatle tinnitus has turned in to a 24/7 roaring. I didn't take good care of my ears.
      When I was younger, I thought perhaps this would just solve itself and I was busy doing what my other friends did - being in loud places, listening to music loudly (really irresponsibly I might add). Needless to say, I feel incredibly guilty. Even though I've always had ear problems (ETD, ear drum scarring) I really could have helped myself not let it get this bad.

      Like most of you, if not all of you, I'm hoping for a cure, or a little bit of relief. Even just a little!
      I'm really glad I've found this community and it's great to see the conversations that are going on.

      Hopefully speak with some of you soon. Take care xx
       
      • Hug Hug x 8
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    2. Jack Straw
      Balanced

      Jack Straw Member Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Welcome!
       
      • Hug Hug x 1
    3. emmalee
      No Mood

      emmalee Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      hearing loss
      Hello, @Hayls32, it is very nice to meet you. Welcome!

      I found this community a little over a year ago and I am so happy that I did. You will find plenty of support, encouragement and empathy, here.:welcomesignanimation:
       
      • Hug Hug x 1
    4. AUTHOR
      AUTHOR
      Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Thank you Emmalee x
       
      • Hug Hug x 1
    5. grate_biff
      Alone

      grate_biff Member Benefactor

      Location:
      Oslo, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma, benzo/mirtazapine withdrawal, or combo!
      I as well really regret all the noise exposure I´ve put on myself over the years. Especially in my car and headphones while jogging. Never ever thought something bad as tinnitus and noxacusis could be the harsh reality:banghead:.
      WE NEED A CURE!!
       
      • Hug Hug x 1
    6. emmalee
      No Mood

      emmalee Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      hearing loss
      You are most welcome.:)

      You have dealt with tinnitus for a very long time, @Hayls32. I am thinking that you have much to offer this community.
       
      • Hug Hug x 1
    7. nmackintosh

      nmackintosh Member

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Loud noise
      Greetings @Hayls32 great to have someone here with as much experience as you. Wondering how you are coping recently?
       
      • Like Like x 1
    8. AUTHOR
      AUTHOR
      Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Hi

      Well at the moment, not so good, I'm a sufferer of migraine and I've been having a rough time of it lately, particularly because I get dizzy all of the time. It does feel like the tinnitus volume has heightened somewhat thanks to the anxiety and other health issues.

      However, over the years I only really noticed the tinnitus when I have been in quiet places. Most nights I sleep with a white noise machine to drown it out. It's only in the last 6 years or so that I've been looking at treatment and potential cures. No one wants to live with this forever.

      I've coped OK over the years. I've had it for so long that I think I've accepted it as part of who I am. Having that mentality helps me fight off the fear of it being there. But now that I'm getting the migraines and dizziness, I have been really looking in to getting some support and looking at the work people are doing to fight this. I never held out any hope before, but I do now. Even if its over the next ten years, and even if it's only to turn the tinnitus down I think I'd be happy with that.

      How are you coping?

      Hayley x
       
      • Like Like x 1
    9. AUTHOR
      AUTHOR
      Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Yes, we do. Hang in there x
       
      • Like Like x 1
    10. AUTHOR
      AUTHOR
      Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Thank you:)
       
      • Like Like x 1
    11. winstona
      Balanced

      winstona Member

      Location:
      Toronto, Canada
      Tinnitus Since:
      Oct 2017
      Cause of Tinnitus:
      Loud noise exposure and excessive ear irrigation
      Welcome Hayley! I have had tinnitus for a year and a half now. I think it is slowly improving and wish that one day silence will return. I wish you can find relief soon with your migraines and dizziness.

      I guess the best advice anyone in here would give is that we need to protect our ears from now on. Stay away from loud concerts and do not use headphones if possible when listening to music.
       
      • Hug Hug x 1
    12. AUTHOR
      AUTHOR
      Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Hey! Thank you :)

      Oh yes absolutely. Give your lugs a break from the noise is the best advice. If people do listen to music through headphones, then do so at safe levels and have a break from them also.
      Buy ear plugs for concerts etc. Xx
       
    13. GlennS

      GlennS Member

      Tinnitus Since:
      1992
      Cause of Tinnitus:
      Loud music
      Welcome to the 20+ year T veteran club.

      I think anyone who has successfully coped this long has a lot of grit. Only someone else who has battled T this long can understand.
       
      • Hug Hug x 1
    14. AUTHOR
      AUTHOR
      Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life

      Hi Glenn :)

      :thankyousign:

      I guess we don't really have a choice. We need to keep going or what else do we do :(

      Having had this for so long, we have been through the era of 'put up with it' to now seeing that there are people out there who genuinely want to help and find a cure. Never thought I'd see the day.
      So long as we are alive and kicking, there will always be hope. It doesn't mean the battle is any easier, I've had my share of rough days and despair with it.

      Hope you are ok! And thanks for the welcome xx
       
    15. emmalee
      No Mood

      emmalee Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      hearing loss
      I believe this with all of my heart. We must never lose the hope, wether it be for a cure or the strength to continue to live our best life, in spite of tinnitus.
       
      • Agree Agree x 1
    16. Daniel Lion
      Ape-like

      Daniel Lion Member Benefactor

      Location:
      se asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      Can the NHS provide someone to give you head massage? Is there a friend or family member who can help by rubbing your head and neck sometimes? I know it's a big ask, and I know it would cost a fortune in London, but that would really help. Hot baths, and anything cozy. I truly feel for you my dear, you deserve a break, some peace, and comfort. I really hope your tinnitus backs off and your migraines ease up. Sending you strength and love. Your story really moves me and humbles me. Catch you around.

      Daniel
       
      • Hug Hug x 1
    17. AUTHOR
      AUTHOR
      Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Thank you Daniel :) yes I could definitely do with a head massage, especially as I deal with migraine too! Thank you for your message x
       
    18. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      @Hayls32 Keeping on top of the research and getting involved in the debates helps me, I am habituated - that to me means I accept the noise level it is now but it also means I would pay for an effective treatment to diminish or reduce it because I still do not like it. Until then, I just put up with it.

      I think the next thing we can look forward to is Lenire and bimodal stimulation. If that turns out to be a flop, there’s also hope from companies such as Otonomy, Frequency, Decibel. There’s also Dr. Tzounopoulos's work who is looking at various brain channels.

      I don’t think we will have tinnitus for life, tinnitus is too common with a high prevalence and it’s a matter of time before it’s figured out. The reward will be great to the company that can even reduce it by half for a majority.

      Tricky little bastard it is though X
       
      • Agree Agree x 2
    19. DebInAustralia
      Fine

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      Can you try magnesium for your migraines?
       
      • Like Like x 1
    20. AUTHOR
      AUTHOR
      Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Hey, yeah I'm taking it daily as well as changing up my diet etc..xx
       
    21. AUTHOR
      AUTHOR
      Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Hey Paul,
      Oh yes it is a bastard even in the best of times. I'm certainly paying more attention these days to the research, it's now becoming such a big problem that the researchers and scientists out there can no longer ignore it. That said, I try not to get my hopes up too much, but I still pray (to anyone) that something good is coming.
      Keep in touch :)
      X
       
      • Like Like x 1
    22. AUTHOR
      AUTHOR
      Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      That said, at times I do have hope because I believe that whilst we are alive there is hope. Just sometimes I try not to pin everything on it. Hanging in there like the rest of us x
       
      • Like Like x 1
    23. erik
      Breezy

      erik Member Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012 or earlier?
      Cause of Tinnitus:
      Most likely hearing loss
      Welcome Hayley. Don't beat yourself up about not having done more to prevent it when younger. Many of us share this same guilt and didn't really know any better back then like we do now.

      I list mine tinnitus as starting in 2012 but think I actually had mine also for 20 years+ and didn't really know or understand what it was most of my life.

      I used to suffer from daily migraines. I took magnesium and 5HTP and after several weeks, my migraines were gone and haven't returned since. That was 7 years ago.
       
      • Like Like x 1
    24. AUTHOR
      AUTHOR
      Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Hey Erik,
      Thanks for the welcome :) thanks for the tips also. I'm taking magnesium and riboflavin but its been a persistent problem. Now I'm taking ammitryptaline too to help. Unfortunately, my eye had a stroke in December so dealing with visions problems too, which have no doubt upped the anti with my migraines. Just a bloody mess over here Haha!!

      Fingers crossed for this recent research to come through and help with something x
       
      • Hug Hug x 1
    25. Hyrum Peterson

      Hyrum Peterson Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Gradual onset with some hearing loss
      Can anyone recommend one hearing aid device over another? Or at least what not to buy? I am looking at a pair of 5,000.00 units that promise a potential reduction in the T but no help with the actual hearing loss
       
    26. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Hearing aids are meant to correct hearing loss. The benefits to Tinnitus is simply linked with the improvement in hearing they provide.

      You need to try them on to decide if you like them or not. There's a variation in sound quality/style.
       
      • Agree Agree x 2
    27. erik
      Breezy

      erik Member Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012 or earlier?
      Cause of Tinnitus:
      Most likely hearing loss
      Hearing aids are customized to your individual and specific hearing loss. There are several that have special tones built in to help you with tinnitus but again it is difficult to recommend one without knowing specifics about your individual hearing loss. My hearing loss is in the high frequency range and no current hearing aid on the market can help me with that because they're not capable of going that high.
       
    28. ringinghours

      ringinghours Member

      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      unknown
      Isn't it sad that 21 years later and still there is no cure. I don't think anyone is trying to cure this illness. It's pathetic.
       
      • Hug Hug x 1
    29. AUTHOR
      AUTHOR
      Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      There is a lot of work being done. Hang in there, I know it's tough x
       

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