PennyCat

PennyCat

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  • PennyCat
    Hey everyone, hope you're all hanging in there. I'm trying my best. Nothing has changed for me symptom/sound wise, but I am coping better!
    HearingHell
    It's great to see you're coping with everything better! Just one question, has your TTTS calmed down at all?
    PennyCat
    @HearingHell Hey! I actually just left a comment about that on @BB23 page if you want to read that. But TL;DR, yes for the most part it has. I still get flare ups maybe once every month or two and it lasts for a few days to a week. But in comparison to how it was this time last year, that aspect is much better.
    BellaMia
    Hello Penny Cat, did you have the procedure for pulsatile tinnitus?
    PennyCat
    I did! I was stented because I had Venous Sinus Stenosis. Unfortunately it didn't work for me in regards to getting rid of the sound. I had more testing done which lead to a dead end, and now I have scans scheduled for March 3 - getting scans of my temporal bones to test for dehiscence. Are you struggling with PT as well?
    BellaMia
    Mine comes and goes. Seems caffeine can irritate it. I'm sorry it didn't work for you! I'm not a candidate for the stent. Hopefully they can find another way to get that fixed.
    PennyCat
    (2/2) Balloon occlusion test in the diverticulum didn't alleviate my PT so we are unsure if a coil would fix it :( I'm at a loss
    PennyCat
    (1/2) Cerebral angiogram today… SO painful. Diagnosed with jugular bulb diverticulum and a small aneurysm… :,)
    View previous comments…
    PennyCat
    @tpj I'm okay, my groin is just super sore where they went in. And I'm pretty devastated that the balloon occlusion didn't yield positive results, because if it did, that would indicate that a coil in the jugular bulb would fix my PT. But he is consulting a colleague to see whether I might have superior semicircular canal dehiscence, which can be caused by the turbulent blood flow of the stenosis and diverticulum.
    sakrt
    Any news from results from angiogram? (good I hope) @PennyCat I'm sorry you're going through this. Is this T different than what you had before the stent?
    PennyCat
    @sakrt The angiogram showed a small aneurysm but nothing to be concerned about. I had a balloon occlusion test done in my jugular because I have a diverticulum (outpouching). But sadly the test didn't indicate that fixing that diverticulum would solve my PT ;( so I'm having even more testing done on March 3rd. Thank you for asking! The T is still the same though sadly.
    PennyCat
    Happy Holidays! My TTTS is still here & is really bad today :( Scared it'll never go away again… but it has before, so odds are good, right?
    D
    TTTS as in spasms reacting to external noise? I have that too, but my plague is actually MEM which is spontaneous spasms' episodes lasting for hours at a time... Scared it'll never go away as well. Hope the new year help us!
    PennyCat
    @DimLeb Yes, the spasms in response to sound and my own voice. I had it for a good 4-5 months earlier this year, but as the year went on I had long stretches of time where it disappeared, then came back for a few days. But it's sticking around longer this time :(
    PennyCat
    I'm finally getting over this sickness, still have a few lingering symptoms. But my anxiety has just stayed high the whole time :(
    PennyCat
    Because I'm on aspirin & blood thinners, I can't take Nyquil/any other flu meds, not even ibuprofen. I literally just have to sweat it out
    PennyCat
    This flu is no joke. I can't remember a time I felt this bad, and my pain tolerance is high. Thankfully it's not covid but damn I'm in hell
    View previous comments…
    Juliane
    Hope you recover soon!
    PennyCat
    @kingsfan Somehow I have all of the symptoms except the respiratory ones. Vomiting, fever, violent uncontrollable cold sweats/shaking/chills, muscle aches, headache, eye pain (which is very random?), fatigue, and probably a few more symptoms I'm forgetting. But no cough, sore throat, or congestion which is weird.
    PennyCat
    PennyCat
    I think I have the flu or something, I honestly feel like death. I know I will likely be more aware of my T when I am not feeling well :,(
    PennyCat
    If you've had a tinnitus spike that eventually subsided, how long did it last?
    D
    My spikes usually last 1-3 days 1 or 2 times per month and come about randomly. In a sense that the regular tones of my mild tinnitus (an air exhaust sound in my left ear and a group of mid tones in both ears) get amped up and become more noticeable. They come back to normal after the night's sleep on that 2nd or 3rd day.
    D
    For reference, my T is idiopathic and doesn't spike to outside noise. And I also get periods where I get many many SBUTT's (with loud tones appearing for seconds).
    PennyCat
    @DimLeb I've been having a new tone for a week now so I'm not sure if it's a spike or not, but I hope it is
    PennyCat
    It might be time for me to end it
    L along the way
    Sorry to hear.. Just never be impulsive about that one (neither while under influence) is what I told myself... trying to keep hope that it may get better with time.. for all of us..
    PennyCat
    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.
    PennyCat
    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%
    PennyCat
    Anyone have solutions for fluid behind eardrum? Have had crackling like rice krispies in right ear for months but ENT claimed it's fine.
    PennyCat
    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
    View previous comments…
    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.
    PennyCat
    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.
    PennyCat
    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 :)
    PennyCat
    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.
    PennyCat
    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 :(
    PennyCat
    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.
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