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kaymath
Going to use this to journal since I have literally zero people who understand what I'm going through. those super loud spikes this morning scared the shit out of me. Back to the hissing and the occasional EEEE and the dog whistles. Can hear the hiss over my son watching Lilo and stitch, on the couch with pneumonia. Have had nonstop headaches.
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kaymath
@elPuritan ugh. Yeah. It's pretty terrible. Mine fluctuates sounds and swaps ears so I it's really hard when I think it's getting better or I'm getting used to it and then bam! New sound!
Last night was one of the worst it just started going crazy with sounds for no reason!

I hope you get better too. Wouldnt wish this on annnnnyone.
elPuritan
I know what you mean. I may not know exactly but i understand. I have 3 high frequency tones in my left ear all competing for a level 10 volume and a single EEEEE in my right that changes frequency and usually hangs out at a level 6-7 volume. This all started in June of this year.
elPuritan
Crazy to think that modern medicine has not figured out a remedy for this. My doctors can't figure out why this is happening and although my ENT is amazing, he is still left with guessing. Sorry to be chatting your eyes off. Anyways, hope today is somewhat better for you.
Sodlin
Was on a board game day for 8 hours. Everything started of good but it was alot of yelling when things happened at the board game. Not super loud but more like "NOOOO THATS MY STREET!". Been exposed for like 30 min-1 hour combined maybe. I thought i could handle it without earplugs. Today im spiking loudly (already was in a spike tho). Any tips are appreciated
orenge01
Wow I was also at a family gathering for like 8 hours. And it wasn't super loud, I was able to get breaks. Funny how similar situations can be.
I wish you can recover as soon as possible from this setback, and remember to bring earplugs next time even if the event doesnt feel like it can be super loud. It's definitely good to take precaution still. Wish you the best. :)
Sodlin
Yes i will definitly do that next time!
Isabella 123
Hi @Arnaudswiss when will you be starting your Neurofeedback treatments? I hope so much for you to find success with this. I applaud anyone who courageously steps forward to try whatever seems hopeful to defeat this beast that torments us. Please keep us posted about your experience. You know all of us are pulling for you!!

Where are you getting your treatments? Isabella
Arnaudswiss
Hello @Isabella 123,
Thanks for your message. I will start in early January. Did it help you in any way?

Kindly,
Arnaud
Isabella 123
I haven't had the treatments yet, still hoping to find a place to access it. In Asheville North Carolina US, can't locate anyplace near me. Please keep us posted about your outcome, good luck!!!
SarahMLFlemmer
Who else is hopeful for the Susan Shore device?
Sodlin
I just wanna get some updates. Dont like this radiosilence. Hopefully there will be some kinda of treatment. It dosent need to go away but lowering it abit would have been nice :)
SarahMLFlemmer
Yeah, kinda crazy.
orenge01
Exposed to loud ambulance siren again (which was right next to me). I'm so done with this condition. I'm so done with these possible worsenings always happening to me, it's so exhausting/tiring I can't catch a break. :(
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orenge01
@Sodlin I did wear earplugs, although they were albeit loosely on (because they dont want to stay in my ears properly for some reason and usually pop out), thanks for asking. I don't think I'm spiking I'm probably fine now. But yeah there are a lot of loud sounds to be aware of avoiding. Yeah not fun. :/ nvm I do seem to be spiking at least currently, oh man this condition is a piece of work...
Sodlin
Glad to hear ur doing better! I know what u mean. Went to a "boardgame evening" with alot of laughter and occationally people yelling because somthing happend at the game. Was having alot of fun but got a superspike from it which ive been dealing with for soon 2 weeks now. very frustrating stuff :p
orenge01
@Sodlin yup it's good to have fun though, boardgame evening does sound fun. But yeah the spike is always there as a side effect unfortunately :/
SharonBell
@4Grace yeah I'm doing good. Dealing with the noise so much better. Maybe I habituated. I just try to go on every day. I miss you too and pray you will eventually get better. I just pray mine never gets worse later on down the road.
just1morething
I have bad static noise in my left ear once again that is really annoying. DMSO seemed to help short term but now I'm back to this torment.
delta784
Hey mate is your nox gone? can i improve i have mild nox i can listen digital audio but i have catastrophic ocd
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Joshua Macleod
Hope the nox has continued to improve, chief. I resonate with that though, I'd have happily sat in absolute silence if it was not for the T competing for my attention.

I didn't live with my partner at nox's worst, but I might as well have done - I spent most time outside of work with her, principally because she was so supportive. She suffers from minor T too, so could relate to an extent.
delta784
thank you bro if i can yell without too much pain is it mild nox?
Joshua Macleod
I really couldn't say for certain - I did notice an increased sensitivity to noises I didn't cause (dropped cutlery, other people shouting), but I didn't spend too much time yelling to test it!

It certainly sounds like you're improving somewhat - let's hope it continues, but don't worry if it fluctuates in severity - it does do that.
delta784
how is your tdcs treatment bro
W
Gonna write up a report in about a month. Its hard to say. Feels like it may have helped but its not world changing. I am going to stop treatment for awhile and see if I notice any difference. I couldn't recommend it yet.
HighleyTall
As I'm working with AI lately and it amazes me every day I'm building hope scientific research using AI might help solving tinnitus and hyperacusis sooner than expected. 🤞
HighleyTall
Seems i'm sentenced to take gabapentine on a daily basis. If I don't T is much more electrical/static and my ear channels burn. Resulting in a permanent headache. It sucks
4Grace
Hello old friend. Miss you. Hope you are doing okay. Same old here. Too many words to describe my situation. I feel good enough to rejoin life. Just home bound. Just noise, no pain, hard but you can do it. No question.
BrOKeN_1
Sorry to hear your still homebound my friend. But glad to hear you have gotten a break from the pain. Small improvements are better then none I suppose. Be well.
4Grace
Hey buddy. I miss you and love you. So happy to hear your sleep is better.
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L along the way
Can I add.. i still have hope in the healing journey.. that's basically what I live on I guess.. The thing is.. without dramatisation.. t just is such a discomfortable affliction, and it interfered with my daily life in the form of having a good night's rest.. and just to experience wellbeing. Man.. I pray for these things
4Grace
You speak of euthanasia and it makes a tear run down my face. Life does not accommodate this horrific condition. I want to tell you that I understand. You are not alone. Your feelings are valid. It's okay to feel what you feel. I isolate due to extreme pain but loved ones see this is as a sign of weakness. Isolation in itself can become impossible for some.
4Grace
I wish at the least my words would be understood with my family. At this point I struggle to see how human compassion is zero. I love you brother keep the hope.
KaiT81
Yes, the 1,000 $ treatment. Exactly 1,200 $...
...but when you consider that I have already spent over 4,000 euros on my German tinnitus counselor, it's almost "cheap" in comparison.
2049v
hello everyone. How is everyone doing? I'm still in the trenches of the hell. It's gonna be almost 8 months and it's still the same as the day it started. I won't ever change I know that. It feels like a fucking joke tbh. I still remember the day 1 as yesterday.
SharonBell
Noise all the time 24/7 buzzing, static, electricity. So much worse than last year. But yeah the noise is worse, but heating to deal with the sound a lot better. I still have days I don't think I will make it, but I keep busy, keep going and try not to think about my T. It's the worst thing that has ever happened to me and my family.
D
Just checking in…haven't been on here for months. It's been so long, I didn't know the layout changed! lol
Katarinacl
8mo update: Pretty much same as last mo. I have good news tho: someone at my work who got tinnitus a year ago has moments of silence. She used to have straight EEEEE, but now there are pauses in between. I'm going to take a break from posting monthly. I'll come back and post if anything changes for me.
MatthewR
Wow so it's been a year since my accident. I still regret that day but am so grateful to hear the way I do right now even though it's still not perfect.
2049v
Has your hearing loss improved? Is there any progress in the level of tinnitus?
orenge01
It's gotten worse now I feel... Screaming 24/7 tinnitus in my ears now especially left ear for a few days now. I really hope it calms down and goes back to it's initial baseline, it's hard to concentrate properly in this noise :(
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