PennyCat
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  • I much prefer my static/hissing sound over the EEEEEE. EEEEE, plEEEEEEase go away :)
    BrOKeN_1
    All I've ever had is EEEEEEEEEEEE!!! Curious what static would be like.
    PennyCat
    @BrOKeN_1 The pitch of my static is so high that I can hear it over pretty much everything. It still bothers me sometimes, all of my many T sounds do, but now that I'm having the EEEEE I'm realizing the static/buzzing is much less of a nuisance. The EEEEE is just so harsh in comparison.
    I can't believe it got worse AGAIN. Every 3-4 months w/o fail. Will it follow this pattern forever? Will it eventually settle? Almost @ a yr
    HearingHell
    I had several worsenings in my first year. However, my second year has been much better, with only 1 worsening, and it's because I was at a noisy place that I shouldn't have been at. Hopefully your second year is better too.
    PennyCat
    @HearingHell Were your worsenings always permanent or did some subside?
    HearingHell
    All of them had some improvement, some more than others. I've had 5 significant worsenings overall. This is how they went:

    1st worsening improved 80%
    2nd worsening improved 90%
    3rd worsening improved 50%
    4th worsening improved 100%
    5th worsening improved 50%
    Anyone have solutions for fluid behind eardrum? Have had crackling like rice krispies in right ear for months but ENT claimed it's fine.
    TTTS has been back a bit. I'm sure it's due to the recent increase in anxiety about my T. Trying to remain calm… I need to get through this
    PennyCat
    @Strawberryblonde I do get occasional brief spasms without any sound trigger but my main TTTS symptom is a single thump after certain sharp sounds and sometimes after speaking
    S
    I get fluttering in both ears randomly. Feels like there is fluid bubbling away in my ears. Plus my T is louder.
    Utdmad89
    I think i might be getting this! I get like thunp from low sounds. I've had it since my T became constant. I now the last week have developed hyperacusis. So alot of things are loud.
    I really feel like I'm back at square one. My tinnitus is bothering me so much :(
    BrOKeN_1
    I'm sorry. This is a feeling that has recycled itself mNy times for me since 2020. I wish I could tell you it won't last. But we never know til we get there. I pray you can build tolerance quickly.
    I so badly want to be fully habituated but I'm worried it's not possible for me. I've had some good stretches of time, so maybe I can? IDK!!
    MindOverMatter
    Yes, its possible for you @PennyCat Habituation, or whatever you may call it, is non linear for most. There will be setbacks and bad spells along the road, and they will feel devestating at times, but its not back to square one. Navigating through this isn't easy, and its mentally challenging - but you will get there, with time and patience. I believe in you.
    PennyCat
    @MindOverMatter Thank you, I really appreciate it. The anxiety is the biggest hurdle for me I think. It always has been ever since I was very very little. I will try to keep what you said in mind when I notice myself obsessing or panicking :)
    The catastrophic thinking is back. Why do I keep having setbacks? Will I be anxious about tinnitus forever? What if it gets worse?
    MindOverMatter
    There are many "what ifs" in life @PennyCat I've been there so many times myself. Catastrophic thinking: Is this it? Am I back to square one? i can't handle this? Will it ever get better? Thoughts that come up, but doesn't serve any good. Think of setbacks as the part of this journey for better days. Thats what I implemented. A bump in the road.
    TheCapybara
    Stress and anxiety will always make it worse by itself, but I get it. It's only once we give it a unwanted place in our lives and accept that it's just there that we stop thinking about it as much and finally try to move on but it can take a while to get there.
    PennyCat
    @MindOverMatter @TheCapybara Thank you for the encouragement. I'm almost at the year mark already so it's discouraging that I keep having setbacks out of nowhere, just when I think I'm starting to be okay. I know there will likely always be bad days or even weeks sprinkled in on the journey to habituation, but it's hard for me to not go to all-or-nothing and catastrophic thinking.
    I've been a little more anxious/aware of my normal T lately for some reason. Probably stress. It's hard to believe this might be for life
    Joshua Macleod
    I'll have a week of heightened awareness of the T, then I'll settle. Such a strange beast we have to deal with. Hope you're keeping well otherwise.
    Tryn2BHopeful
    I still have days where I am in disbelief... one day I was fine, the next day screaming T. Life is just full of surprises :(
    Thursday I was awoken at 5am by a stomach bug from hell, I was getting sick for hours. Now I have the worst headache I've had since my stent
    Sammy0225
    Sounds similar to covid
    PennyCat
    Surgery recovery and then a horrible stomach bug and dehydration, I've been going through it!
    PennyCat
    @Sammy0225 I hope not !! I'm probably going to call my doctor though.
    Have tried to avoid coming around here as much. My normal T is pretty much still the same. This month marks 11 months since it all began.
    Going in on Dec 13 for a balloon occlusion test (still not sure what that means) and cerebral angiogram to rule out arterial causes
    Update: I have to go back. He wants to do more tests. He said I have enlarged jugular bulb which he could potentially fix. Fingers crossed
    I really don't think it worked. I can't believe this
    PennyCat
    @Joe Cuber Yes I'm still experiencing it when I lay down to sleep and bend over. My doctor said my body might need time to adjust but I'm having doubts that it worked for me. Most people's is gone instantly. :(
    PennyCat
    @Joe Cuber Maybe slight improvement but still bothering me when I lay down. I really hope he's right too
    I heard my PT last night while laying down. Trying not to get discouraged, dr said my body needs to adjust. Good vibes/prayers appreciated
    T
    Please don't get discouraged. Your doctor is right. Sending good vibes your way!
    PennyCat
    @tpj Thank you. I heard it again last night and had a hard time sleeping. It's so scary thinking maybe this didn't work for me and I'm out of options. I really really hope it continues to improve as I heal
    Survived my stenting surgery yesterday. I'm not gonna lie, recovery has been ROUGH. The night in the ICU was hell too. But I'm home now.
    TheCapybara
    Glad you got through it alright Penny. I hope the stent makes a noticeable improvement!
    PennyCat
    @TheCapybara I'd say at least 95% gone (knock on wood). Lots of swelling/inflammation plus brain needing to readjust blood flow so there's a chance it'll still improve even more. The stent ended up being 7mm x 80mm so quite large!
    T
    That's fantastic @PennyCat! So happy for you.
    My stent for my pulsatile tinnitus is on Friday!
    TindalosKeeper
    What does it do, if you could explain it briefly?
    Good luck, as well!
    PennyCat
    @TindalosKeeper A mesh stent is placed in the vein with stenosis to help open it back up, which hopefully fixes the turbulent blood flow causing the sound. It's not 100% guaranteed to fix it but it works for most people with venous sinus stenosis, which I have. I really hope it works for me!
    TindalosKeeper
    Oh, interesting... Wonder what causes mine... Specially when I hear clearly my heartbeat in my bad ear for some reason.
    My PT has really been interfering with my sleep lately and for some reason I'm becoming anxious that the stent won't help me. Thanks OCD
    Moments like this, when it's 1am and I'm having a BPD episode, my T takes the back burner. But I'd do anything to not have BPD. It's so hard
    TTTS has been back again the past few days but esp. today. Trying to remind myself that it's settled before many times, and it can again.
    If this is how my life is going to be, I don't think I can continue to live it
    PennyCat
    ErikaS
    I get in the same mindset, but in 2-3 years we will (hopefully) most likely have one if not two groundbreaking options to change our situations. Dr. Shore's device and hopefully one of the KV7 modulator medications. I have very high hopes for the KV7 modulating drugs.
    Juliane
    So many of us feel this way. Life has become surreal. I hope with all of my heart that we will ALL heal from this.
    I'm 100% sure I can't do this anymore. It's never going to get better
    4Grace
    Although I feel the exact same way i also tell myself that we cannot know what tomorrow holds. Best example - life before and after T. Who would have known. Next time it needs to be in the reverse.
    I really can't do this. There's no end in sight. So many sounds
    PennyCat
    @Viridiana Not great at the moment, I keep getting new tones on top of my existing ones every few months. Tomorrow (Dec 4th) will be a year since I got my T
    Viridiana
    What si the cause of your T? How do You cope with yours at the moment? It's the first time I've met someone my age with T
    PennyCat
    @Viridiana I have no idea what caused it, it randomly started out of nowhere. I don't cope very well, it's all still pretty new to me since I'm in my first year
    How often do you experience fleeting T?
    RunningMan
    No fleeting - it's always there but changes intensity and sounds over longer periods.
    Utdmad89
    It changes, some times it's multiple times a day in either ear. Sometimes it can go a week or so without one. I stupidly hoped it was a sign T was fading.
    PennyCat
    I'm similar to a lot of you - some days it's very frequent (almost a scary amount), others it doesn't really happen at all, or maybe once.
    Talked to the Dr that will do my stent and mentioned my concerns about Aspirin. He lowered dose from 325mg to 81mg which is much better
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