ASilverLight

Is it the case that you haven't experienced any improvement compared to how your T was back in February?

Many of us can relate, but there are a lot of thing you can do that your friends can do too!

@Bill Bauer my tinnitus fluctuates too much to tell. No minute is the same. But overall, no, not really. Maybe I have slightly more better moments.

@Gabriel5050 also keep in mind it's not a quiet day or a quiet few hours - it's a few minutes lol

Oh I thought it was longer periods of quiet. Sounds like the reverse phenomenon of fleeting t. Weird

@Gabriel5050 lol yeah I get fleeting T on top of it all too. I swear, I've never had any T, not even fleeting, until the start of this year but I got multiple fluctuating tones from the start. It's exhausting

Same. Mine used to be quiet in the mornings and loud in the evenings, but now it's completely reversed. So loud in mornings and the evenings are fine... T is fricken weird.

And by weird, I mean shit.

I can say with almost certainty that VSS will not make tinnitus more likely. Almost everyone in the family has VSS, but only my mother & I have T.

@Christiaan Yeah, other way around seems way more likely. To be honest I never even thought any of it until I read about it here - noticed it now and then. Now I'm more aware of it but it hasn't gotten worse thankfully. Maybe a bit in the dark, but still not bad. I do think vss is way more common than we think because I always thought of it all as normal - it's also super mild and stable for me.

Everyone has some amount of VS. There is a link between tinnitus and more severe cases of VS though.

Fluctuations have been less... which is taking the edge off so much.

Sure do hope it goes the right way for you. Tinnitus can get better even after 6 months

For real though, me too.

Although I still live my life how it was before T (though with ear protection), I still feel sick at the thought that this could be forever, or it could become worse; especially after my last major spike. I've decided to allow myself a 5 year plan. I'm going to try lenire for 2+ years, whilst I wait to see if any trials come to fruition. And if they don't, I'll try stem cells. This is the plan that keeps me going.

Ironically, I slept way better when I had mild T than it was before. It was only a low rumble that had something gentle. I just had to focus on it and within a few seconds I was in a deep slumber. But with the cacophony of multiple tones atm, boy does that change the game for realzies

@Christiaan I've always had insomnia so falling asleep was always hard. Big difference is quality of sleep, which was fine pre-t... now not so much.

Have you tried some meds to help with your sleep? mirtazapine is not a miracle pill for someone with ADHD, but it sure does something for me with falling asleep and staying asleep

''The Lord [Frequency Therapeutics] giveth [FX-322] and the Lord taketh [tinnitus] away; blessed be the name of the Lord''
Job 1:21

Agreed! Hope is all some of us have. I decided last night that I'm going to try Lenier whilst I wait possibly two years to see if one of the said treatments actually materialises. Then after those two years, if they haven't come of anything, then I'm trying stem cells which is stupidly expensive but, at least I will have tried.

Fluctuations make it incredibly hard to say whether I'm actually improving or not though....

Mine is the same. I can't tell if the T is coming or going. Right now I have a hiss in one ear and a mild ring in the other, but it will be different tomorrow. I'm sure it makes it harder to habituate :-/

@Steph1710 yeah, definitely makes it hard - it's almost like a sense of false hope. It's happening a little more frequent now, so... for me it's just not even daily, it will literally change within the hour lol. Just cannot relate those changes to sound since they happen in complete silence too.

@Emgee don't really have a favourite album by them - love them all for different reasons. One of the first bands I really got into when I was like.. 9

One of my favorite bands ever.

@Emgee same! also the reason I made it through my teens. Completely stopped listening to music due to T, but my mum told me about the Sao Paulo gig being on TV recently so I watched it... been listening to music again a little since.

I'm okay for now but you know the deal. Again my issue is mostly how loud mine gets, how much it fluctuates. I could deal with the T I usually wake up with but as soon as I lift my head it changes lol

This is torture. We need regen medicine now.

Regen meds, brain calming meds, and ptsd therapy after

TMJ disorder?

@Christiaan dunno, I've just been congested for MONTHS. Won't ease up, but I have no allergies (got tested twice this year) nor any infection showing up in my blood work so who knows

@Julien87 I do suspect that but it's hard to get an appointment still, so cant get it confirmed right now. Wonder if it would explain my T fluctuating so much too

Same here :(

Sorry to hear you're dealing with this now as well, @ASilverLight. I really hope things start to get better for you soon.

It's stopped. Dunno what that was about, came up randomly. Not triggered by sound etc

@TheDanishGirl I had super mild VSS for at least 10 years before getting tinnitus. It has gotten a bit worse since getting T though. Definitely must be a connection since combined suffering is so common

*Clap Clap Clap*

Everyone on this thread has perfectly summed up our "condition".

People just don't get it! I can't even enjoy meal times because plates, glass, cutlery is all TOO much!!!

The amount of ear protection I'm using right now just to use a drill is ridiculous. Every thing we now do, T has to be considered first.

I'm lucky that I have no hyperacusis (as far as I'm aware, there's always been noises I found uncomfortable even when i was 6 years old). But multiple tones and fluctuating tinnitus makes you really scared of anything making it worse.

I feel the most sad when I think back to the time when I was free of health problems but mostly, when I was free of T. I wish I could take this awful thing away from us all. <3 sending love.

@Steph1710 thanks, me too. I've never really been free of health problems but they were perfectly managable. T just took all of it.

I absolutely think that can be the case. I personally endured an acoustic trauma, head cold/ear infection, TMJ issues/jaw pain, and ETD all around the same time. Not soon after, tinnitus started. So, I definitely agree with you.

@Emgee whiplash, infections, stress and exhaustion, an earwax blockage, possible tmj and very mild noise trauma for me. Didn't start until after the earwax blockage and the resulting stress/anxiety as I'd never had any issues with my ears before. So I think it's just the combination for me.

Aren’t we so lucky?

Same. It's normally quite quiet in the mornings and gets much worse throughout the day. Don't really understand why.

Same! I can be in a completely silent room all day and it will still fluctuate so what gives?

Same! It’s those middle ear muscles. They’re controlled by the brain stem (involuntary reflex), so when the auditory input is damaged they fire erroneously.

My issues probably aren't due to auditory damage though, plus it really only happens when I swallow. Physically feel the eardrum move at times, but not all the time. I've also had cold symptoms/congestion for months now and am unable to clear my ears properly.

Happy Birthday!

Happy Birthday!! <3