PennyCat

PennyCat

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  • 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.
    PennyCat
    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.
    PennyCat
    Going in on Dec 13 for a balloon occlusion test (still not sure what that means) and cerebral angiogram to rule out arterial causes
    PennyCat
    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
    PennyCat
    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
    PennyCat
    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
    PennyCat
    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.
    PennyCat
    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.
    PennyCat
    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
    PennyCat
    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
    PennyCat
    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.
    PennyCat
    If this is how my life is going to be, I don't think I can continue to live it
    View previous comments…
    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.
    PennyCat
    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.
    PennyCat
    I really can't do this. There's no end in sight. So many sounds
    View previous comments…
    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
    PennyCat
    How often do you experience fleeting T?
    View previous comments…
    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.
    PennyCat
    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
    PennyCat
    I keep thinking I hear new sounds/new distortions and I can't tell what's real and what's just because of my anxiety and hyperfixation :(
    T
    Can anything distract you?
    S
    You have my sympathy @PennyCat anxiety mixing in with T is always a challenge.
    PennyCat
    @tpj I've been trying to distract myself a lot lately. Tiktok, youtube, TV shows, games on my phone or xbox, sitting outside. It helps somewhat but my brain still constantly goes to search for the T and monitor/check it to see if it's the same or different (thanks, OCD)
    PennyCat
    Well, my break was kind of short-lived. The past few days I have really been bothered by/hyperfixated on my T. I'm so tired of this cycle
    L along the way
    So relatable.. t is such a... pfft... condition.. I hope one day it may get better.. still today i hope it may be a good day..
    PennyCat
    I'm going to take a break now. My T still bothers me, but I know coming on here several times a day is just giving me anxiety. Much love <3
    PennyCat
    I had my procedure today. I will be getting a stent for my pulsatile tinnitus in October! I'll post results in the comments.
    View previous comments…
    PennyCat
    He also showed me the images from the procedure. The narrowed vein is close to the ear which is likely why I hear the turbulent blood flow.
    gameover
    @PennyCat Getting some plausible diagnosis should be a good news! Maybe there is something that can be done. I read some success stories from a member in France who got PT fixed. Don't recall the name. Good lcuk.
    PennyCat
    @gameover Thanks! It's likely that the stent will resolve my PT. Then I will only have normal T to deal with (hopefully).
    PennyCat
    I'll come on here to update after my procedure but then might take a break - reading some things here gives me major anxiety
    PennyCat
    I love you all and I hope things get better for all of us <3
    PennyCat
    Tomorrow is my cerebral angiogram with an interventional neuroradiologist to find out more info about my pulsatile T. I'm kind of scared
    Kain
    Hope you find an answer!
    sakrt
    A CTA or the gold standard invasive angiogram? @PennyCat Does your whole body vibrate along with the PT noise in your head?
    PennyCat
    @Kain Thank you!

    @sakrt I had a CTV and CTA done by this doctor and he saw narrowing of some of the veins, so now he is doing an angiogram. I'm nervous for it but glad I get to have it done. My whole body doesn't vibrate but my PT ear feels full when it starts to whoosh and it's very loud. Mine is mainly position-related though, not 24/7 thankfully.
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