PennyCat

PennyCat

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  • PennyCat
    Haven't had my TTTS flare up in a long time but it's back today. Frustrating, but scrolling thru my own posts helps reassure me that it always does eventually settle after a few days.
    henkess
    I have big trouble with it, i got muscles relaxer now and it gets away in 3-5 hours. So thats a relief atleast. Why do you think your starts?
    PennyCat
    Today is day 5 of taking lamictal/lamotrigine. Last night I noticed a new tone in my right ear that is still there today. Could just be a spike but if it persists tomorrow I'm probably going to stop the medicine.
    PennyCat
    It really sucks because I struggle so bad with my mental health. I can't and don't function. But so many mental health meds can aggravate existing tinnitus or even cause it. I'm damned if I do and damned if I don't.
    PennyCat
    Due to my mental health, I have to start taking the mood stabilizer lamictal/lamotrigine. I'm terrified that it's going to make my T worse. I have a friend who takes it and also has T and said it didn't make it worse, so that's good I guess.
    View previous comments…
    PennyCat
    @henkess I've also seen incidents where it has helped people's T, and others where it has no positive or negative impact on it. It really is just individual. Hoping it at least doesn't worsen mine. I don't have much of a choice as I need to take this med.
    PennyCat
    @TheCapybara Thanks, I hope you are too! My T is ever present and still bothers me sometimes. Most of the time it's just a nuisance that I try not to think about but I do have moments where it brings me anxiety. An ongoing battle as I'm sure you know!! Hope you're hanging in there.
    henkess
    I tried paraflex its a muscle relaxant no drug or anything. Quite harmless. And it lowers my Tinnitus a little.
    PennyCat
    Hey all. Hope everyone's hanging in there. Thought I'd pop in and say I'm having more anxiety with my T, which happens every few months but eventually settles. Thinking about you all.
    PennyCat
    Yesterday was 2 years with T. It's been making me anxious again lately. IDK if it's actually any worse or if I'm just more aware of it. But for the most part I handled my T much better this year than the last. Hoping each year is easier. Hang in there guys <3
    PennyCat
    2/2 I've never had spikes, mine have always been permanent increases. How do you know if it's a spike? How long do yours last?
    orenge01
    I don't know for others but for me a spike is like 3 days to a week. But they can last longer than that I'm sure. Or at least based on what I've read.
    PennyCat
    1/2 I think I'm having a tinnitus spike? A tone I haven't heard for a long time is back and pretty obnoxious. Sounds like a tornado siren.
    PennyCat
    My TTTS settled for a bit but it's been back again for my birthday which sucks. Hopefully it dies back down
    Zigs
    Hey! I remember reading a lot of your posts last year and you were in a really bad way. I'm happy to see that you are doing a little better. I feel like you last year, like someone has a voodoo doll of me and won't stop until I give up. I'm so scared of how bad things are and my anxiety. How did you manage to pull yourself through the very worst days?
    PennyCat
    Sorry to hear you're feeling similar to how I felt last year ;( I think what helped me on my worst days was doing things that could offer distraction from my T even if it was only for a few moments at a time. Video games (low volume), reading outside, watching vids from my fav youtubers (on speaker). I also was doing an outpatient anxiety program which helped me build some tolerance but ik that's not for everyone
    Zigs
    Thank you. And happy birthday!
    PennyCat
    @Zigs Of course, anytime! And thanks :)
    PennyCat
    I literally have evidence of TTTS going away because it's gone away many times for me. But my OCD is like "nope, it'll never go away again"
    View previous comments…
    TheCapybara
    It's alright Penny, if it's gone away many times before, it will again, you gotta believe in that.
    PennyCat
    @TheCapybara Thank you :) How are you doing? I hope you're doing alright.
    TheCapybara
    I'm alright, thanks for asking Penny :) I have distortions for two years now, I doubt it'll go away but it's become more normal/manageable over time.
    PennyCat
    Just used my gua sha on my cheek/jaw muscles for a solid 20 minutes. Didn't realize how tense my jaw is. So many tender spots. Def recommend
    PennyCat
    Day 4 or 5 of TTTS flare up. If I remember correctly, past flare ups were ~ 1 week. Hope it settles soon. My anxiety is def making it worse
    PennyCat
    Trying not to worry about my TTTS reappearing is harder than I thought. I just want to be okay, I don't wanna go through this again
    GG_Ear
    PennyCat
    @GG_Ear I do, I have TMJ issues and clench my jaw pretty bad at night. Recently started using a gua sha to massage my sore facial muscles and am going to incorporate some TMJ exercises as well to see if it helps anything. Not sure if my T or TTTS are related, but it seems reasonable.
    Yellowblue44
    Can you share a link for th tmj exercises. And are they helping?
    PennyCat
    My TTTS has made a reappearance. It's hardly happened at all this year. Trying not to stress… it's settled before, it can/will again
    SamRosemary
    For the last week I been waking up with TTTS going nuts. I don't understand why it's happening.
    PennyCat
    @SamRosemary Ugh I'm sorry, it's the worst :( I've noticed when I wake up lately, my jaw is so sore from how tight I've been clenching it in my sleep. So I'm wondering if there's a correlation for me
    SamRosemary
    @PennyCat Probably. That happens to me sometimes too. Seems it could for sure be related.
    PennyCat
    Also update re: my pulsatile T surgery a few months back. Throat complications have gone. Follow up with laryngology to reassess in 2 weeks
    View previous comments…
    PennyCat
    @eldudebro Unfortunately not gone entirely. But I think the 2nd surgery thankfully helped a decent amount, since the 1st surgery didn't do much at all. Over all, I think I hear the pulsatile T less frequently than I did before my 2nd surgery.
    PennyCat
    Given the hell I've gone thru w my PT - the years of trying to get the right doctor, the many scans & painful diagnostic procedures, the hell of the 2 surgeries & ICU stays, the first surgery not working, the nightmare month following the 2nd surgery where it was thought I had a stroke, brain bleed, etc due to my rare complications… I'd be pissed as fuck if it didn't work even a little!
    PennyCat
    Obviously, I was hoping for a full fix, but I've exhausted all options; had thorough scans of my arteries and veins, had them scoped with a camera and scanned some more, had a CT of my temporal bones. Nothing else has been found. But some relief is better than none.
    PennyCat
    Thinking of you all. It's 4am & my tinnitus is screaming a bit louder than usual. But I know it will settle soon & am not panicked. Progress
    PennyCat
    However if it were to worsen again I would be back at square 1. But for now I am adapting and habituating somewhat.
    PennyCat
    I'd say I currently go maybe 90% of my day without thinking about my T. It's still there, multi-tonal and unchanging, but I am… adapting?
    PennyCat
    If I think/focus too much on the orchestra of sounds in my ears, I get anxious. But I am doing better with it this year than the last.
    sakrt
    Do you have reactive T/H? What was your pulsatile T. like? Have you improved from last surgery at all? @PennyCat
    PennyCat
    @sakrt Not sure about reactive T but I do get distortions over certain sounds like fans. Sounds like sporadic, low pitched beeping. I still have my pulsatile T unfortunately, no change there. Not much improvement from my surgery :(
    PennyCat
    Saw a specialist and due to my surgery I have an almost fully paralyzed right vocal cord and partial paresis on part of my palate.
    PennyCat
    Symptoms: difficulty speaking and swallowing (which have improved maybe 85% since onset). Also nasal regurgitation - water goes up my nose when I drink and sometimes fully drips out my nostrils. This has not improved.
    TheCapybara
    I'm late to this but I'm so sorry Penny. Surgeries are supposed to improve things, not worsen them. I really hope you can get the right help and recover from this.
    PennyCat
    @TheCapybara Thank you. It's really scary and stressful :( I've been in a massive depression episode ever since my surgery, and even more now that I've learned there is something officially wrong with my throat.
    PennyCat
    My surgery for my PT was May 1st. I've since had a complication and it's not looking good. Too long to post update as a status lol
    PennyCat
    10 days until my surgery. Trying not to be pessimistic about it, but also don't want to get my hopes up either. Hard to balance it!!
    PennyCat
    Not super hopeful it'll work as prior testing indicated it might not, but it's my last option. After this, if it doesn't work, that's it :,(
    PennyCat
    Having another surgery for my PT on April 30th. Stent & coils being placed in my jugular bulb diverticulum. Another overnight ICU stay too
    PennyCat
    My boyfriend… or I guess ex-boyfriend helped me through some of the hardest times with my tinnitus. Now he's gone. I miss him so much
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