Juliane

Juliane

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  • Juliane
    I have not been so close to giving up before. Relentless torture for 7 months now. Stupid doctors who haven't got a clue. I am done
    View previous comments…
    Lorca
    I know, I can relate but you have to carry on. It's the only way. Life is still beautiful. When I look back on my time with tinnitus, the suffering is a small part of my memory and the good things outnumber it.
    Juliane
    @Lorca Thanks for your encouragement. How is your tinnitus today? Has it improved at all?
    Lorca
    To be honest no, but I carry on and can only hear it at home most of the time. I know im lucky in that regard. Since getting tinnitus I also got visual snow and floaters which are just as bad if not more. Be very happy you don't have to deal with those nightmares.
    Juliane
    I cannot continue like this. I just can't.
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    Tryn2BHopeful
    Recovery is not linear, hopefully you will go back down in a day or so.
    Cmspgran
    Same here, crap Monday, sat and my ears ringing in overdrive. Keep going you're not giving in! None of us are, I want us all back here in five years all saying remember when…
    Juliane
    @Cmspgran I am so sorry. I don't think I can continue for long. This isn't a life anymore. I am sorry
    Juliane
    Wish I had a time machine. I would travel 5 years into the future to see how we're all doing. Or 5 years back and prevent this
    View previous comments…
    Juliane
    Tryn2BHopeful
    @Juliane I guess its the point that I really did nothing that I can think of to cause this other than take a drug that was prescribed to help me (which is seems I didnt need). It still rubs me the wrong way that the GP had no idea of the side effect, and I had to dig on the internet to find out after the fact.
    Juliane
    @Tryn2BHopeful I am really sorry to hear that. So unfair. What drug was it?
    Juliane
    Could tinnitus be a symptom of ME?
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    Lurius
    All I know is that there's a course called "the Lightning Process", for people with CFS (the american term for ME). When I got Tinnitus in 2018, I called the woman who is in charge of this in my country to ask her if she thinks it could also help with tinnitus. She couldn't promise anything, as it's primarily meant for ME - but she mentioned having treated many patients with ME who also had tinnitus.
    Juliane
    @Lurius Interesting. Thanks! So did it help you?
    Lurius
    I didnt try it. It was very expensive. But one of my best friends has a sister who suffered insanely from ME and she is back to normal now after doing that course.
    Juliane
    This week I've been extremely tired and I wonder if it's the body finally giving in to the exhaustion after months of anxiety and adrenaline
    Cmspgran
    Where are you up to? Had to succumb on Friday and take a .5 clonazepam for some relief. Saturday wasn't so bad - not sure if it's hangover from Fridays pill. Today (Sunday) has been awful, left ear ringing buzzing like the clappers, had to lay down and take a half a clonazepam to see if I can get relief. Feeling emotionally drained, hopeless and dreading the week of work ahead.
    Juliane
    @Cmspgran We all can reach a point where we just need relief. I understand and hope the Clonazepam gives you that much needed relief! I am dreading the work week too. I am too much in crisis mode still, I feel I should not be working. I will be thinking of you when Monday kicks in. Wishing you a peaceful night.
    Juliane
    Horrible tinnitus after three glasses of wine yesterday... Must live even more restricted
    Juliane
    @4Grace We gotta live too and that includes sometimes doing "stupid" things. Thanks for your kind words. Wish you peace of mind too!
    Juliane
    And I don't think it's that simple at all, but I do think thriving in life is key to good health. Now how to start thriving?? Life is tough
    4Grace
    Agree !!
    4Grace
    I would take peace of mind above everything else. God and faith can help provide peace of mind for obvious reasons. Without peace of mind you can have everything and nothing at the same time. My wife followed Charles Stanley. God rest his soul. Her deep faith in God saved her life. He has many good books. One book entitled "Emotions" is such a great read. He was one of the few good preachers on TV.
    4Grace
    I have most of everything one could wish for,,, before T and some other issues, I would always tell my wife that I feel like something was missing. Even though I was happy I would say what next? Now I know that it was faith and God that was missing in my life.
    Juliane
    And that increasing your quality of life by making life choices that are in harmony with your true being will heal you.. Controversial
    Juliane
    Years ago I saw an "alternative" therapist who was convinced that all diseases are caused by low quality of life
    Juliane
    Before the worsening of my T, I had been exhausted for years... I wonder if T is, also, some kind of "energy lack" issue..
    Juliane
    Tough day today. Super tired although sleep seemed OK. I can never adjust to the randomness of this madness. I long for logical patterns.
    Tryn2BHopeful
    Tell me about it... I have been a computer guy forever.. logical patterns is how I think... this just drives me crazy.
    Juliane
    Should I stop all activities in my life, go somewhere quiet and just focus on getting better for a year? Or would that be pointless?
    Mo8409
    You only know what works best for you.
    Juliane
    @Mo8409 You would think so :-) But finding it hard. I guess answers can only be found by doing, not thinking....
    Juliane
    Have an appointment with an ENT today. Any advice on what NOT to let them do?
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    MadeleineHope
    At least if you do the test, if there's any significant hearing loss, you might be able to get some relief from your T with a hearing aid. And it's good to know where you stand hearing-wise now too so that you'll have something to measure future audiogram against.
    MadeleineHope
    So there's something to be gained from the hearing test with minimal risk - or at least that's the way I look at it. M
    Juliane
    Juliane
    So I received my new Peltor ear muffs... OMG these things are huge!!!!
    Cmspgran
    How you getting on? Started new job today and thought I'd made a little bit of progress but my ear kicked off all day like an electrical current gone wrong. Feeling miserable and ten steps back!
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    Juliane
    @Cmspgran I think the mental aspect can play a huge role as starting a new job is always stressful. Hope things settle for you soon. Sending you a big hug!
    Cmspgran
    Am I right in remembering you have reactive tinnitus too? I was on Teams inductions all day yesterday and it was kicking it off big time, had to lower the volume to barely audible. I think I need to look into my audio setup. It's been an exhausting week and it's only Tuesday. Keep going, there has to be light at some point!
    Juliane
    @Cmspgran Yep my tinnitus is pretty reactive and I really hope it will stabilize at some point. That would make a difference. I also lower the volume at Teams meetings to barely audible as you do. Only Tuesday indeed! Still some days to go. Hope the coming days will be better for you.
    Juliane
    Have to say no to all social gatherings, birthdays, parties etc because of fucking tinnitus. My life has become so worthless.
    View previous comments…
    Juliane
    @hopefuldede Faith is what I need indeed. I am happy that you are able to live a normal joyful life. :-)
    4Grace
    Today came to cottage with friends. I put musician ear plugs and ear muffs. I think I made my T a little worse. Everyone seems to be different. My God is my T loud with the protection.
    4Grace
    I wish you the best with your new ear muffs. I'm getting a set too. People don't care about T. They think, big deal.
    Juliane
    I have just ordered Peltor earmuffs. Do any of you have these too and do you wear them on the street? How is it?
    View previous comments…
    kingsfan
    Just know that if you wear glasses or sunglasses with them, you may not get the full-rated protection. I only use them as double protection since I wear glasses.
    Juliane
    @ECP and @kingsfan Thanks so much for your great tips guys! Can't wait to receive my ear muffs! And I will take protection over fashion anytime too!! I wonder if there is a business idea there... "Fashionable" ear muffs for people with sound sensitivity. I would definitely be a customer!
    Juliane
    I don't have a car but use my bicycle a lot. I wonder if it would be unsafe to wear Peltor earmuffs while cycling? Because then I will not be able to properly hear the traffic. Any thoughts/experiences?
    Juliane
    I don't think I will ever be happy again. We are the patients no one cares about. I don't have any hope anymore
    View previous comments…
    Juliane
    I am happy to hear that you got better @MindOverMatter. How would you describe your tinnitus today in terms of loudness and intrusiveness?
    MindOverMatter
    @Juliane
    To be honest I don't like to describe my t too much. Describing and monitoring it is usually counterintuitive - thats my personal take on it. However, I do pretty much all the things I used to before it happened. Except for attend concerts and very loud venues. That's what matters really. But I was in a really dark place for a long time...
    Juliane
    @MindOverMatter Of course. I understand. Being able to live a joyful life is what matters! As for concerts, I have not been to any (except for one beautiful quiet concert with an Irish harpist) since the 00's and I don't miss having my ears assaulted for one minute. Life is better without.
    Juliane
    Is this real life or are we already living in a simulation? I cannot believe this is my life. Seems so unreal. I cannot continue for long.
    SarahMLFlemmer
    I understand. =( We're gonna get through this!
    S
    @Juliane Your "simulation" description is spot it. It's like you're in a dream and you're waiting to wake up. We're here with you, friend.
    Juliane
    Do you exercise and if yes, what kind do you find works well with T? I prefer swimming and walking.
    Tryn2BHopeful
    I need to find my way back to doing regular exercise... right now I just walk. Before the hell that I call 2023 I would go to the gym, walk, run and just do thing outdoors.
    W
    I was just walking for a while. Anything that got the heart rate up seemed to affect the T. Went bike riding a few times lately and it all was fine though.
    Juliane
    "Sometimes, carrying on, just carrying on, is the superhuman achievement." Albert Camus
    W
    Spot on. Stopped at a light this morning; looked at everyone on the corners. I know we all thought the same thing, "Are we really doing this again, today?"
    Juliane
    Juliane
    Sometimes I wonder: do I have long Covid? Many people with long haul covid have tinnitus as one of their symptoms
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