Juliane
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  • Could tinnitus be a symptom of ME?
    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.
    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.
    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!
    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.
    And that increasing your quality of life by making life choices that are in harmony with your true being will heal you.. Controversial
    Years ago I saw an "alternative" therapist who was convinced that all diseases are caused by low quality of life
    Before the worsening of my T, I had been exhausted for years... I wonder if T is, also, some kind of "energy lack" issue..
    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.
    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....
    Have an appointment with an ENT today. Any advice on what NOT to let them do?
    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
    So I received my new Peltor ear muffs... OMG these things are huge!!!!
    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!
    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.
    Have to say no to all social gatherings, birthdays, parties etc because of fucking tinnitus. My life has become so worthless.
    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.
    I have just ordered Peltor earmuffs. Do any of you have these too and do you wear them on the street? How is it?
    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?
    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
    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.
    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.
    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.
    "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
    Sometimes I wonder: do I have long Covid? Many people with long haul covid have tinnitus as one of their symptoms
    Can't work. Can't sleep. Close to giving up.
    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.
    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!
    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 :-(
    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.
    "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)
    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.
    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.
    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.
    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.
    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.
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