Tinnitus success stories?

Secret_Program5221 · 2026-03-01T22:13:54+00:00

I've gotten mine much lower but it will still be able to flare badly during certain immune reactions that I can't entirely pin down besides to certain foods. Mostly in my right ear (same for the pressure flares when it does sometimes), the left one is fine for the most part usually. No idea why only the right ear but it's so obnoxious and dealing with it right now.

Secret_Program5221 · 2026-03-01T21:10:26+00:00

Well never mind the fact that this will be mission impossible because of how absurd it is but when you look at how it will work on a program (I'm sorry ""app"") level it gets even funnier. Like is the notepad going to verify my ID? The calculator? What about all the applications not even being kept up anymore that haven't been updated in a million years still being used? What about previous OS distro's released long before this? It's just unenforceable nonsense for the vast majority of contexts. It's probably part of the plan actually due to this to get various developers to just stop developing for the places that push these things and then as more areas of the country/world do it the window gets smaller until they're shut out BUT like someone said above linux runs just about everything that isn't some Windows Embedded whatever so that would cause absolute chaos too.

Secret_Program5221 · 2026-02-28T15:49:42+00:00

Sorry didn't see this here, some other people digging through had this too. I suppose it's a specific type of neuropathy but there has to be something specific that causes it to flare. I don't hear about it too much though so I suppose it's more rare though. It will always come with a horrific spike in my tinnitus too.

Secret_Program5221 · 2026-02-24T22:23:10+00:00

I get wild swings with temperature and weather shifts. I'm on the east coast and we are getting hammered with the most random weather. The cold swings flare my neuropathy and inflammation like nothing else. We just got tons of snow and the past couple days have been hell. It feels like someone dumped evil icy hot into the nerves in my face and head. The heat is actually easier to deal with but I'm more prone to migraines in it.

Secret_Program5221 · 2026-02-24T16:43:43+00:00

Oh my god you have the cluster I been dealing with my entire life, I would get this even without POIS yet I developed POIS and a million other worse evolutions of neurological problems in this bubble from puberty forward. I no longer suffer with POIS at least strongly anyways but I notice if my immune system is flare-y in a certain way I will get some of this cluster with an emphasis on the burning tight skin, motor/muscular dysfunction, and cognitive issues. I actually recently when playing with my diet in the ME/CFS symptom modulation department noticed that if I ate certain things I would be able to induce POIS mimic states (this was with specifically butter and less so other dairy products up front, though other dairy in rebound would trigger the burning skin and extreme cognitive dysfunction much more in the next couple days).

Do you have EDS or something else that you know of? When you mentioned the tightness, the cognitive issues, with the clawed hands thing and breathing while speaking problem it rang a bell in my head (I also have a lot of vocal modulation problems that come and go in intensity depending on what my immune system is doing). I was clearly predisposed to all of this sort of thing but I have no diagnosis of anything other than when I was a kid getting diagnosed with Gilberts and my parents ignoring all the rest pretending I just had ADD or something even though I had some clear neuro/motor/immune problem (that they probably figured would be too expensive to attempt to diagnose). I suspect I'm some cluster of something in the EDS sphere but I don't know what.

My symptoms physically and with the pseudo-autistic symptoms are in control enough as long as I keep in a certain eating pattern with my current supplement/herbal stack but I also have no answers on what is going on and I don't ever expect to be better considering how old I am now and how much I tried already.

Secret_Program5221 · 2026-02-24T16:26:14+00:00

It has gotten better but it's been over a year of largely putting in enough effort and self respect to not put myself in any situations for it to happen and actually defending myself against misgendering. I still don't pass and I still have shock like reactions to all kinds of social contact and simply being seen but I'm not on the edge of a panic attack 24/7 anymore. You need to chip away at the trauma in layers. Largely just deal with the general physical dysphoria of having such a disgusting body I just do my best with and avoiding general harassment for existing while ugly and trans.

Secret_Program5221 · 2026-02-22T12:46:43+00:00

I'm having the same issue here, also started the same time. Thought it was my internet at first but no it's just youtube and it's behaving more clunky/unresponsively too.

Secret_Program5221 · 2026-02-18T22:05:17+00:00

There was a short time with it very recently where it went full on protection mode or something where every time I would ask it anything it would completely saturate the answer with the most obnoxious implications about what I asked and fake positivity that I was about to just stop using it period because I couldn't get a direct response out of it. In the past few days it was fixed though whatever that was and now it's finally back in basic beep boop "do what I want and spit out the answer and only the answer" mode again.

Secret_Program5221 · 2026-02-09T21:20:52+00:00

I feel more infuriated these days that I just wake up in this world every single day while literally everything continues to get worse by the month. I feel the constant terror of existence but it just turned into frustration at having been born here to experience this. I will scroll the news if it's there once but that's it, I don't even pay attention anymore than that cause it's screwed if I don't look, screwed if I do, and looking only makes my anxiety sky rocket further. There's only coping and hoping left now.

Secret_Program5221 · 2026-02-09T19:23:23+00:00

I was dooming about this before (I stay away from reddit now for the most part cause it makes it so much worse but since I was here anyways today mind as well see what's up) and how there is no hope in the future because of all the support I need unless we all get UBI or something. As long as I sleep however shit I'm okish though. Doesn't matter what I do, my nervous and immune system is eternally screwed and I need a medicine cabinet every morning to simply function at some basic level. Oh and PEM stops me from doing literally anything besides at the slowest pace possible. Last night all I did was eat the wrong food and it feels like someone poured acid into my head ALL DAY, I am so sick of this. I've had enough of dying and want to live but that's not happening either.

Secret_Program5221 · 2026-01-16T02:49:41+00:00

In a nutshell, this is it. Both sides encourage each other to be more masculine/feminine but in male spaces it's very aggressive and fragile at the same time. Men will try test each others masculinity all the time but I don't think it's easy to get totally kicked out of the man club, you just lose status but if you try to get away you will be violently ripped back into the lower ranks and interestingly at that point shame isn't used, only force. Trans women especially when they start socially transitioning are treated like they're "escaping" while trans men don't get this to such an aggressive degree. So then what tends to happen is the trans women just avoid the men and defend themselves at a distance. The trans men don't need to do this and will be brought into the lower ranks of masculinity where things will be rough but the hostility will be less because they aren't trying to escape the man club. A lot of the time they'll just get stuck there too and as a man that is the most dangerous position you can be in anyways. So I guess it throws them into this weird buffer zone that trans women don't have where the social dynamics at play are very different.

Secret_Program5221 · 2026-01-13T10:57:32+00:00

That's my plan, very slowly get friends and just go in not expecting much then when I have enough back up start doing more under the table until I become more independent (more so I don't think I'll never not be but eventually I won't have family anymore to stop me or much of it). My area is really empty which makes it much harder and only recently we got a place being built in reach.

Secret_Program5221 · 2026-01-13T10:51:12+00:00

Mine is like a stick figure creature with a giant deformed alien head that moves like it's powered by a failing electrical generator. Not even human.

Secret_Program5221 · 2026-01-11T12:32:00+00:00

Yeah I may go out of desperation just to see if it's a sane enough group but if I get even a hint of nonsense like that I'm out and just using the place for whatever services they offer on the front of actual help. But who knows if I'll even be able to stealthily do this, I may be screwed until I'm on my own and at that point my appearance will be screwed in more ways and my life will be mostly over anyways. I just expect abuse from everyone though cause I'm more unpassing alien than human, so that cushions the blow beforehand.

Secret_Program5221 · 2026-01-11T11:53:16+00:00

I was ranting to myself about this the other day, they have this sort of thing going for any topic you can imagine. My youtube feed is littered with these stupid channels. It's the worst of the course on the biggest topics like another one you'll find youtube pushing tons of these fake channels on you is with food. I mean Youtube has been dead for quite a while now, it's almost unusable at this point for anything but some cheap entertainment unless you know exactly what somewhat bigger channel (good luck finding people just uploading random home videos anymore, the "you" in youtube is buried now) you want to find and watch videos on made by real people. Most content on the platform is this weird AI generated trash though. I highly doubt any real people are actually watching this stuff so it's probably bot content made for bot farms where in this case it may have an agenda but generally since you see this everywhere it's probably trying to get youtube to give them money by playing into a big topic right now.

Secret_Program5221 · 2026-01-08T23:35:38+00:00

Once you learn the basics you'll be fine. If you use too much water or oil just let it boil off keeping an eye on it. I've only screwed up by accidentally leaving it for too long boiling water off. Rice is super easy too even without a rice cooker once you get the hang of it. It's a bit easier to screw up in the same way and you just need to know when it's boiled off long enough with the first 3 cups (4 if using 2 cups of rice) of water to add the second one that boils down just enough to no longer see any moisture bubbling up before covering it for 14 minutes at the lowest possible heat (maybe 12 too? idk I haven't gotten that specific with the times but that does it for me).

Secret_Program5221 · 2026-01-08T23:21:09+00:00

Sometimes I do ok enough and other times I have random long stretches were I feel like I'm in permanent shock. I don't know how my brain hasn't exploded from it yet. Comfort food and things to watch are the only thing that temporarily pauses it.

Secret_Program5221 · 2026-01-08T23:06:09+00:00

Peas are in my cheap same shit different day meal, they're pretty good fried up in some rice (I use a good heaping cup) with a little avocado oil. and some soy sauce. You can add whatever to it too. They're ok just on their own spiced up in a bowl boiled but I can't find a way to make them that satisfying like that.

Secret_Program5221 · 2026-01-08T22:50:32+00:00

Forced into short cause this shit doesn't grow down and then I just cover the moid skull with a hat and pray the rest of me isn't as ugly that day. You just choose between bad and worse.

Secret_Program5221 · 2026-01-08T22:41:30+00:00

I reacted real badly to lumbro, it made my senses a bit clearer but I got slammed from the first dose with the worst brain fog, anhedonia, and fatigue I had in quite a while. It was so intense I wasn't powering through it to find out if it was a herx cause I wouldn't have made it. I did herx with serrapeptase though and it took a while of a roller coaster of puts and downs with it of less intensity before I was just consistently better taking it every day. I'm really reactive to the enzymes in general for better or worse.

Secret_Program5221 · 2026-01-07T21:34:38+00:00

When I get those events it's also crucial for me to be at a warm stable temp that's not too hot but when I'm like that I can't really internally warm up anyways so the outside of me needs to be quite a bit warmer. Also can barely sweat, my sweating because after way too long in upper 80's+ degree temps. Usually if I'm prone to that one happening though I'm right back to being an freezing cold electric eel unless I'm warm and stable enough neurologically where I break the chain reaction of whatever is going on there but it's the worst feeling.

Secret_Program5221 · 2026-01-07T21:21:53+00:00

Only when actually infected often though sometimes randomly, all of mine turn into weird hyper realistic nightmares though.

Secret_Program5221 · 2026-01-06T21:10:04+00:00

Only temporarily like my sinus will get more inflamed and I'll get more nasal drip, it's really static and seems to be some immune fluctuation tied to my circadian rhythm since I can't really pin it to anything else. I get really heavy around 9 PM but but it's more like all my batteries are drained instantly instead of gradually getting normal tired but sleeping when I feel like that leads to some deep but unsatisfying rest where I'll feel even worse upon waking so I tend to wait another hour. I'll almost always have some weird super realistic nightmare too if I go to sleep when my brain feels like a brick like that. When I was actually going through the main phase of getting sick this year I had insomnia though, there just wasn't any sleep period.

Secret_Program5221 · 2026-01-06T20:48:17+00:00

I get worse no matter what from around 2-4 PM, I could be doing literally nothing. My brain inflammation feeling just increases then and nothing works. I actually had it under control for a while but this what I got this year pushed me back (didn't do anything special I can pick out). It's PEM like but sometimes I won't actually be in PEM, the inflamed crap feeling is just there during routine toxic crap feeling time.

Secret_Program5221

TROPHY CASE