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.

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?

@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.

SAME!! ❤️

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!

@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 :(

Hope you recover soon!

@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.

@Joe Cuber @Juliane Thank you, I hope so too!! I’m miserable.

@gameover It’s certainly not fun, that’s for sure

Being sick with T is awful. Hope you feel better soon.

@tpj Thank you <3

My mentality has improved. Tinnitus, not so much. =(

@SarahMLFlemmer so sorry to hear that, I hope it gets better with time, wish you the best

@Viridiana same to you, thank you. ❤️

Ugh. I just hit my one year too.

@SarahMLFlemmer TT just gave me a 3 year trophy today. I definitely earned it I suppose. Glad to see you hanging in there. Stay strong girlie!

@BrOKeN_1 at least someone recognizes our fight! Lol. Congrats??!!

=|

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.

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).

@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

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..

One day, one moment at a time Pennycat. I am so sorry you're going through this. One foot in front of another.

I know the feeling but you will @PennyCat.

Just going day by day is only thing i can say... pffft.. wishing us all well..

All I've ever had is EEEEEEEEEEEE!!! Curious what static would be like.

@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 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.

@HearingHell Were your worsenings always permanent or did some subside?

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%

I get the crackling too sometimes. Today, actually.

@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

I get fluttering in both ears randomly. Feels like there is fluid bubbling away in my ears. Plus my T is louder.

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'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.

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.

@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 :)

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.

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.

@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'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.

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 :(

Sounds similar to covid

Surgery recovery and then a horrible stomach bug and dehydration, I’ve been going through it!

@Sammy0225 I hope not !! I’m probably going to call my doctor though.