Juliane

Juliane

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  • 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?
    View previous comments…
    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!
    View previous comments…
    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
    Juliane
    Can't work. Can't sleep. Close to giving up.
    Juliane
    Waking up and being able to experience silence however shortlived proves to me that T is very physical and not related to state of mind.
    View previous comments…
    Juliane
    @Jupiterman Exactly and it delays the development of real treatments as I see it.
    S
    @Juliane Agreed - psychiatrist told me I was "fatalistic" when describing my fears of the future. Audiologist said my symptoms were mostly from anxiety after my ears were destroyed by a 100+ db mri. It's upsetting.
    Juliane
    @scared8 OMG! So sorry to hear that :-( No wonder so many of us feel horrible when this is the "help" we get! Pure gaslighting to cover up their own incompetence when it comes to this illness!
    Juliane
    Woke up at 5.30 with no tinnitus. I lied still for about 10-15 mins. No sound of it! Fell asleep and woke at 8.30 and it was back :-(
    View previous comments…
    Tryn2BHopeful
    @Joe Cuber I dont know that I would want to go back to bed! I have had moments as well where I was kinda asleep but not quite that I have thought Mr. T quieted down. It always comes back though as soon as I wake up.
    Juliane
    @Joe Cuber Thanks for clarifying. That is so advanced! Great to hear that you primarily have quiet and mild days. Wonder what "type" of tinnitus that is...
    Juliane
    @Joe Cuber Arh stress... how do we avoid it. I wish I knew.
    Juliane
    "An end does not have to be THE end. I must turn the page and start a new." (from "The Book of Healing" by Najwa Zebian)
    Juliane
    I could live with my high frequency crickets, I would not even complain about those. It is the low humming drone sound that destroys me.
    View previous comments…
    Tryn2BHopeful
    @Juliane I will say that when I am stressed more I have heard that sound, almost motor like... I didn't hear it one bit on vacation.
    MindOverMatter
    @Juliane Yes, it can be anxiety induced (typically the low, humming drone type of t).
    Juliane
    @MindOverMatter I have been terribly stressed for years and I guess the nervous system does not know how to tell stress from anxiety... So could definitely be it. I am working on calming my nervous system but finding it hard.
    Anthony2019
    Hearing aids have substantially reduced the ringing in my ears. If your hearing loss is severe, they may help. You will know within the first 10 minutes of trying them.
    Juliane
    Feeling so god damn sorry for myself. I am not a risk taker. On the contrary, I am super careful. This is pure black luck. Again. Cursed.
    View previous comments…
    Juliane
    @Tryn2BHopeful I am so sorry to hear that :-( Has your T improved at all?
    Juliane
    Tryn2BHopeful
    @Juliane I would like to think that it has... but tbh I don't know. I seem to have lost the breaking up static hiss and have maybe a slightly lower volume hiss that is constant. Reactivity seems better but not 100%. I am fortunate that I am still able to do most of the things I need to, albeit with ear plugs at times. I try to stay positive, but it doesn't always work.
    Juliane
    My tinnitus is getting worse. Not better. I have no more hope.
    Mo8409
    Keep having hope. It will get better. Sometimes you'll have bad spikes for no reason that can last weeks.
    Juliane
    Tryn2BHopeful
    Amazing, and to think 38 years later you get the same answer from an ENT that you did then. Hopefully this Shore Device is effective!
    Juliane
    I of course have no clue but seems she is not too bothered by her T. Perhaps it is mild.
    Tryn2BHopeful
    Well... if she had it since she was 9 she might of more easily habituated to it. I have known 43 years of normal hearing and suddenly I have this issue, my brain isn't having it!
    Juliane
    ...several flights in a short period of time, local anesthesia as I had a mole removed... My GOD have I put my body under stress.
    SarahMLFlemmer
    Me too.
    Juliane
    So frustrating to think about what might have caused this hell... when it is too late to change...
    Juliane
    Constantly going over the events that came before worsening of my T: STRESS, COVID, dental surgery, firecracker trauma, loud party...
    Tryn2BHopeful
    Unfortunately there is nothing you can do that will undo any of those things.... You can only move forward in some way.
    Juliane
    I know... but what I would give for a time machine right now
    Juliane
    I cant do this. There is no pattern or logic to this. My life is worthless. I have nothing to look forward to. I am done.
    MindOverMatter
    @Juliane Yes, you can do this. Although there often isn't any logic of pattern to t/h, there is great chance of you feeling better down the road. Acceptance comes with time when your brain is able to shift focus. When this happens, t will fade more into the background. Little by little. However, it will take time and patience. You are worthy, and there is still hope.
    Ngo13
    Better days will be ahead.
    Juliane
    WHY did my tinnitus develop from high frequent squeal in my right ear to adding a humming sound sounding like it is more in the head???
    T
    Because tinnitus is a vile creature that does whatever the hell it wants. Sorry l couldn't be more helpful.
    Mo8409
    Mine can change location and tune depending on the day. Typically it goes back after a day or 2. I hope yours does.
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