PennyCat
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  • Does anyone have a tone that's not steady, but kinda fluctuates? My latest one is like beeeedooooobeeeedoooo and it's quite annoying :/
    SarahMLFlemmer
    Yeah, mine kinda does that. I can't tell if it's really going in and out out or if it's just my brain trying to take quick, short breaks.
    SilverFox
    I have this. It switches on and off every second. Sounds similarly.
    4Grace
    Yup. Mine does that when it's very intense which is after I eat or if I'm really stressed. Plus static hiss in the background.
    (2/2) PT. However, I'd have to be on blood thinners and Aspirin for quite some time, and I'm scared how that would affect my normal T :(
    (1/2) So I'm having a cerebral angiogram on Sept 5 for my pulsatile T. Depending what is found I may get a stent placed which would fix the
    Had a slightly better day but now I'm really anxious again :( I just want to get through this
    Mo8409
    Anxiety makes everything worse! I struggle with anxiety as well. You'll make it through. Anxiety just likes to doom and gloom ya.
    My brain likes to convince me that I will be unable to habituate, even though I know it's more likely than not that I can and will.
    PennyCat
    It just doesn't seem like I can, especially if it keeps getting worse. And I have so many obstacles in my way of habituation (such as my severe mental health struggles). I'm afraid now and afraid of what the future will bring
    SarahMLFlemmer
    I have anxiety, depression, OCD. I am getting better and better, even on my worst of days I am better than when this first started. ❤️ You will too.
    @PennyCat I woke up thinking of you today. How are you doing, I hope you're feeling a little better.
    PennyCat
    I really appreciate your kind words, it means a lot. I'm not doing much better. It seems worse every day but I'm not sure if that's true or if it just seems that way due to anxiety.
    4Grace
    @PennyCat Sorry for the late reply, just seeing this now. I am sorry that you are not doing better. Mine feels worse everyday too. Who would have ever known anxiety can get this bad. We need to literally take it one step and day at a time. I dream of writing a success story one day. You will too.
    Someone please tell me that it won't keep getting worse indefinitely and that it will stabilize… I can't keep going like this
    4Grace
    Hello - my heart truly breaks for you because I think I can relate. You are not alone in this storm. I feel your every word. Tonight I found some real hope in the beautiful people on this forum. I just wanted you to know that I will keep you in my prayers. Everyday I have been going to church to pray for everyone I come across on this forum. Please keep the hope that one day things will get better.
    I also really wish I knew if this was a spike or my new normal. How long do spikes usually last?
    I wish someone could tell me with certainty that I will be okay. But nobody knows. So I just cry and cry
    tpj
    Cry it out. That's what I do. There are no certainties in life for any of us @PennyCat. One day, this will be over. So we do the best we can while we're here. You will be okay!
    SarahMLFlemmer
    This is the worst. I had a good 3 days, but ONLY because I kept busy. Sucks dude. I can't rest at all or I'm in tears for days.
    SarahMLFlemmer
    Please hang in there. You are not alone!
    Can't sleep. There are so many sounds and distortions. It keeps getting worse. Who would've thought my life would be destroyed at 22?
    Really frequent episodes of fleeting T lately as well, I hope that's not an indicator of worsening to come :/
    Would greatly appreciate any words of encouragement. Anxiety back at extreme levels + suicidal ideation :(
    PennyCat
    @Juliane I'm sorry you're in a similar place :( I have had some good days, for most of July I was doing okay with my T and had stretches of time I didn't notice or pay attention to it. But for some reason it's back in my awareness and I have OCD so it quickly becomes a hyperfixation. I hope there are better days coming for all of us as well!
    tpj
    Ah @PennyCat, hate that you feel like this but @Joe Cuber is right. You did it once, you can do this again.
    PennyCat
    @tpj Thank you <3 I hope you're right
    I swear every time I get back on my feet and think I'll be okay it knocks me down again. It'll never be okay, maybe I need to learn that
    Mo8409
    Same! It changes up right when I think I can finally get used to it. Keep on hanging in there. We are right here with ya!
    kingsfan
    This has been my experience. After nearly 3 years I've learned to just keep rolling with it, but it is quite exhausting.
    My main sound seems to be a high pitched hissing sizzle in the middle of my head. Can't tell if this is a good or bad sign.
    PennyCat
    Logically I know I'll be okay. But my anxiety says otherwise
    SilverFox
    Some of my own T sounds sometimes become less loud and turn into a hiss. When it becomes loud again, it turns into a pure tone. I think that getting a hiss is a better sign than a pure tone.
    RunningMan
    Mine cycles between single tone squeal, hiss, and even a broken staticy hiss every day or two. it's been doing this for 18 months - can't say anything has changed over time with the tinnitus, just the more recent developments of hyperacusis and TTTS. The piercing squeal is the worst of the tinnitus sounds.
    Do you think it'll keep getting worse for me? Will it eventually stay steady? I'm a little over 8 months in. I just want to habituate
    Mo8409
    Absolutely! I think when you hit 18 months or so it will start to even itself out. I've seen severe habituate. As long as you protect your hearing or you're not taking anything that could stop your body from healing. It should even out for you. ❤️
    SarahMLFlemmer
    I'm almost 8 months in. Right there with you.
    RunningMan
    18 months after first distressing tinnitus is when I first I suddenly started experiencing hyperacusis - and TTTS not long before that. No improvement in the tinnitus, still cycling through the same sounds.
    Venogram scheduled for September 5th, 3 days after my 23rd birthday. That will be fun
    tpj
    Hopefully you'll get some answers @PennyCat.
    PennyCat
    @tpj Hopefully! I talked to someone in the PT group on FB who saw the same doctor as me. After the venogram he immediately moved to stent her the same day and she is cured of her PT. That's my ideal scenario. But trying not to get hopes up too high
    tpj
    How about cautiously optimistic?
    Another update: INR saw narrowing in one of my veins that could be causing PT symptoms. Wants to do catheter venogram. More in comments soon
    PennyCat
    My parents seem skeptical about all of this. I'm sure part of it is financial concerns. I hope insurance will cover a stent, should I be a candidate. I really hope I will be
    One of those days where I'm more aware of my T and it stresses me out. But I haven't slept well the past 2 nights so I'm sure that's why.
    Just got a CTV (and I think CTA) done of my head to evaluate my pulsatile T. Kinda hope they find something that they can fix …
    TTTS, why are you back… please go away again
    PennyCat
    @sakrt I haven't, but I might have to give that a shot if it doesn't settle back down soon. Thanks for the suggestion!
    sakrt
    @PennyCat I'm trying this strategy myself and it seems to help somewhat. (Ongoing experimenting).
    sakrt
    TTTS is very annoying and disturbing. I often describe the sound and sensation alike gears in my ear trying to calibrate, but are instead slipping -repeatedly- trying to reset itself.
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