M

MiaVIL

Member From Underworld
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  • M
    I didn't ask: to be strong, to be forced, to pretend to be made of steel. To live after my own death. The grief and suffering is unreal.
    M
    I'm not as strong as you all are. I work from home and I don't leave my house. I am sorry I can never accept it and live "normally".
    M
    First thing I want to do when I get to heaven is blast my rock n roll in my headphones and go on long walks in warm weather like I used to
    M
    Can I get everyone's opinion: when we die, do you think we will still have T or do you think we will have no more pain and tears?
    streifzug
    No more pain and tears. No more of anything really.
    M
    What does this mean: if I really look for it, I can find it (meaning Tinnitus)? So like so low in volume now or what?
    M
    There was one time I had hope for a full recovery and I just don't have it anymore. Once you have T, you have it. It never goes away.
    View previous comments…
    Marshall
    does it sound like a high pitch electrical spark? @MiaVIL
    Marshall
    Brain zaps are a feeling not T, in to which I believe MiaVIL is referring to. Brain Zaps are due to the malfunction of neurotransmitters as they try equalizing into homeostasis after ceasing AD's. I've had them before for months after quitting Zoloft way before I developed Tinnitus. @Tryn2BHopeful
    M
    @Marshall it's more in my ears not the head. My ringing pure tone changed into this after a sinus infection. What is going on with me?? Will these ever go away? I hardly ever get a pure tone ring.
    M
    I prefer the fleeting T sound in my right ear than I do my normal T in that ear. If I had to have something- I'd rather the fleeting sound
    Juliane
    Fleeting T is oceans better than that torturous constant sound
    M
    @Juliane the sound of my fleeting T is a faint wheeze which for some odd reason, sounds and feels "pleasant" in my ear. I'd rather that constantly than the T I have.
    M
    So people whose T either resolved or reduced after 1.5 years are lying?
    View previous comments…
    RunningMan
    Yeah, it's rare but can happen. More likely, people just adapt to it to some degree to make life manageable, albeit not the same as it used to be.
    Marshall
    Mine got worse and worse over the course of 8 months and then finally started reducing over the next year and half, albeit in a non linear progression.
    Marshall
    I also stopped everything loud in my life, stopped headphones, made sure to be as quiet as possible and wore musician earplugs outside my house and at work for almost 2 years straight.
    M
    So the success stories of mymlan, Jason C, are those two habituated or did it really decrease in volume???
    gameover
    Decrease in volume, it's perfectly clear from their reports. They are not the only ones.
    M
    @gameover am I correct in saying the suffered for a long time before getting to a recovery.
    M
    So how did Peter Studenik & Carol Lee Brook recover then!? how are there success stories of people getting better if T is forever???
    View previous comments…
    M
    @BrOKeN_1 don't apologize. I am just so frustrated and I am typing as I speak- in hysterics. Not directed at you. I suggest you really look into Carol Lee Brook's story.
    Juliane
    Because T may not be forever. Many people recover even after years. There is just no way of knowing if we are the lucky ones....
    M
    @Juliane so not doomed if it's approaching 1 year?
    M
    So I gather from this site and success stories the ear infection T has 0 chance of recovery? unlike acoustic shock?
    RunningMan
    I had a family member who had tinnitus after an ear infection, and she was worried it wouldn't go away, but it did. Not sure how long - maybe just weeks or months. But, I think after a while, the odds aren't so good if it hasn't improved. Hang in there - things can get bettter.
    M
    Yeah I am 8.5 months now and it's still here. Chances are not looking good for me at all. But why can acoustic shock take 2 years but not ear infection T? why?
    RunningMan
    I think there's always a chance it can improve, but those odds dwindle if time passes with no improvement. There are a lucky few, regardless of the cause. After 2 years since my significant worsening, I'm 99% certain it won't just get better on its own.
    Teebird
    Sorry to hear your tinnitus is SO BAD! My intro to tinnitus came at age 14 after a 2 week ear infection! When it cleared up I was left with constant ringing in my left ear! Stayed same until age 53 where it grew LOUDER one day in my right ear!I feel for you being so young and the zapping sounds seem especially hard to bear. This community is a real support for us who struggle with tinnitus. May relief come your way!
    M
    I can't believe that I will die an old lady with these electric zaps in my head & ears. I'm 32 years old and my life is over.
    Sammy0225
    I also get the electric zaps ⚡️ sometimes when I wake up in the middle of the night I feel them especially. Also have an electric hiss. Very unsettling anyways hang in there hope all the best for you
    M
    I miss my life. Convinced it was Covid that did this to me- high hiss, electrical zaps. I have faith though that this ship can turn around.
    HearingHell
    Did tinnitus start during your COVID infection? Or did it start a few weeks/months after you recovered?
    cyberspace
    COVID is an absolute life destroyer
    kingsfan
    I've had the same off and on (on top of my original tinnitus) since having Covid 2 years ago.
    M
    I've ruined any chance for healing from ear infection T. Microsuction and my brother's wedding in month 2. Microsuction again month 4.
    M
    2023- thought i'd be pregnant. This all started with a miscarriage and now I grieve the pregnancies I could've had, had I not gotten T
    M
    32 today. Was serenaded with Satan's choir as I woke. I wish it was just the sweet words of my husband. Of course, life isn't that kind
    M
    I could easily tolerate my low head tones if the effing crackling hiss in my right ear just vanished or became softer.
    M
    Do I have any hope for a full recovery?
    RunningMan
    I had a family member who had tinnitus sounds with an ear infection. She was worried it wasn't going to go away, but it did. Not sure how quickly - it was years back. There's hope. And hope for treatments to come that will help, even if not a full recovery.
    gameover
    Me, not (noise induced and hearing loss). You should have.
    M
    Treble health which run the biggest scam of TRT are already trying to get into the market to offer The Susan Shore device to their clients. I don't believe they offer Lenire! So I am thinking they must think it's going to be much better
    M
    My tinnitus is thin… does anyone else have this?
    View previous comments…
    RunningMan
    My hi freq tinnitus cycles between a single tone and a hiss every 1 to 3 days. Many times the hiss will sort of thin out and seem more staticy or crickety sounding. That's usually the least intense of my cycles. This has been going on for about 23 months.
    M
    @RunningMan the high freq hiss in my right ear is the worst of my symptoms. It cuts through everything and I can feel it in my ear. @Mymlan's success story indicated that her remaining T is like a soft hiss/cricket. I would love for it to be soft as not as harsh sounding. Do you think it's
    possible either naturally or with the Susan Shore device?
    RunningMan
    Naturally for some people, but I think it's less likely the longer times goes on without improvement. I don't see that for me. But yes, the Shore device is promising based on the the first part of the study before the crossover, so it could potentially help about half of us achieve that lower level. I'm definitely looking forward to hearing how it works for people who get in on it early.
    M
    Not a lot of success stories of ear infection related tinnitus going away. I'm the only one with still fluid, conductive loss and tubes in.
    M
    Ready to die again. I want to be buried in my wedding dress. It was perfect for me, made for me and the best day of my life.
    View previous comments…
    RunningMan
    I have a mix of somatic and non-somanatic, but the worse it somatic. Longer drive for me from IL, but hopefully it would be available closer in IL without too long of a wait once it starts rolling out.
    Utdmad89
    Try living across the world from the treatment. You north Americans are very lucky
    RunningMan
    I know the feeling. That's what I thought when Lenire wasn't available here years ago and only recently became available here 3 years later. But it turns out it wasn't worth traveling for or waiting for based on user feedback over time. Hoping for much better results with the Shore device.
    M
    So what are we waiting 4 Shore or the trobalt 2.0 by Thanos? do I even know what will happen after fluid is gone and ear drums patched up?
    HearingHell
    Shore will probably come out first, either in second half of 2024 or 2025. XEN-1101 or BHV-7000 will come out before Thanos's RL-81.
    M
    Second CT scan done 1 week ago still showed fluid in both middle ear spaces and mastoid areas but reduced from last CT scan back in Oct.
    twa
    How was the CT scan? Was it loud? Did you have to get an MRI also?
    M
    No it wasn't loud. I did not get a MRI since I know I don't have an acoustic neuroma. I have fluid stuck in my ears. I have tubes in. This entire mess is causing tinnitus. 6.5 months now. I hear tsk tsk sounds that's about it and some head noise.
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