PennyCat

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 :(

It could be nothing @PennyCat. Wait for the review.

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.

@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. :(

@Joe Cuber Maybe slight improvement but still bothering me when I lay down. I really hope he’s right too

Please don't get discouraged. Your doctor is right. Sending good vibes your way!

@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

Glad you got through it alright Penny. I hope the stent makes a noticeable improvement!

@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!

That's fantastic @PennyCat! So happy for you.

What does it do, if you could explain it briefly?
Good luck, as well!

@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!

Oh, interesting... Wonder what causes mine... Specially when I hear clearly my heartbeat in my bad ear for some reason.

OCD sucks as much as Tinnitus!

Oh, I thought you meant one year anniversary with tinnitus.

Nice! I'll have to look into that. Happy for you.

@SarahMLFlemmer Nope, that’s coming up in December :,(

@Mo8409 Thank you!

Are you feeling any better?

@PennyCat - I wish you peace of mind. Thinking of you. Not sure why some people have to suffer so much.

@tpj Better than I was, thankfully. But every day is a rollercoaster. T makes it harder. Thank you for asking <3

@4Grace Thank you, that means a lot. I really appreciate it

@Joe Cuber Thanks!

@4Grace @tpj @Joe Cuber @SarahMLFlemmer @ZFire Thank you everyone :,)

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.

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.

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.

@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

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

@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

No fleeting - it's always there but changes intensity and sounds over longer periods.

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.

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.

It will get better, hang in there and keep going!

Things can only get better, you just gotta think it no matter how hard it may seem. You've got this @PennyCat :)

@tpj @Cmspgran @Strawberryblonde Thank you :,)

Hold on!!

Can anything distract you?

You have my sympathy @PennyCat anxiety mixing in with T is always a challenge.

@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)