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W
I saw you reached out to some of these doctors who are pursuing DBS. Would you send me their email addresses? I might be able to help them with some of their funding challenges.
H
Cheung, Steven <Steven.Cheung@ucsf.edu>
Larson, Paul Sloan - (pslarson) <pslarson@arizona.edu>
The first dr is the one who did the first trial in america for tinnitus, he pointed me to the second dr. Who said they might start next year if funding allows. Good luck.
PennyCat
Scrolling thru my own profile posts should provide me enough reassurance that my TTTS will subside again as it has done many times before. But my anxiety will not let me believe that. I can't stop freaking out and am terrified it won't go away this time. Please tell me I'll be okay. I'm so miserable
delta784
I think i have cochlear synaptopathy due to glutamate excitoxicity which methylprednisolone caused rare as f
PennyCat
I'm so afraid that everything keeps getting worse and staying worse. I'm not sure it'll ever get better. I know I've improved before, but this time idk. I feel like I have to just give up.
PennyCat
When I woke up my hearing in my left ear was muffled (not completely, just had an underwater sensation). It lasted maybe an hour and mostly seems okay now. Also had loud, frequent fleeting T in that ear. ENT said they can see me tomorrow - should I go even if it seems better? If it was SSHL I'd think it would be persisting longer than this. Could maybe just be from my TTTS?
D
This kind of episodes troubles me as well. Sudden pressure, loud (different than my usual) tinnitus and sometimes changes in hearing (temporary, lasting around 1 hour). The description fits hydrops, but everytime I saw a doctor they found no other signs of hydrops. So they told me it might be transient ear ischemia, ear migraine, spasm or SBUTT. I also got TTTS and MEM, so I don't know what to think anymore.
D
Just in case, I suggest you take some steroids/Prednisone, Betahistine, vasodilators or anything you have in hand.
delta784
how are you
Joshua Macleod
I'm okay at the minute. More importantly, how are you?
delta784
i have so much anxiety non stop except im sleeping and ear pain + tinnitus im planning to start gabapentin for anxiety. i had no choice its making me how can i say non functional
Joshua Macleod
I feel that, @delta784 - sorry to hear it's non-stop.

Keep us updated on how the gabapentin works out.
Sodlin
Still spike from below incident. Cant really understand why it spiked so huge. wore earplugs and everything so makes no sense....
View previous comments…
kingsfan
You have to take into account the attenuation of the earplug across frequencies. NRR and SNR ratings are an average of about ~9 frequencies (from 125-8,000 Hz). There will be variances among all of the frequencies attenuated. There's also really no testing above 8,000 Hz, so who knows how much protection is being provided against the ultra-high frequencies of a child's scream.

But even apart from that, certain frequencies seem just be spike things in general, regardless of the volume, probably due to the over-excitability of neurons that have been observed in tinnitus patients.
Sodlin
@kingsfan most (if any) people are unable to produce sounds over 8000Hz i can almost promise you that. If you take your lips and make really harsh "SHHH" sounds its typically around 4-6000 hertz. Also higher frequencies are often attenuenting more since it has less piercing effect thru objects. but i see what your getting. my earplugs make 20 DB at 63 Hz and 25 at 250 HZ and to 8000HZ.
Sodlin
i 100 % agree with ur last sentence. Seems like somethings just make it spikes even tho the sound itself isnt that loud (or sometimes not even bothersome). Spike is sadly still ongoing. sad to hear about urs also been from loud noise exposure
delta784
how long you used clonazepam which dose
streifzug
0.5mg, 3 years. It helped half a year then it started to worsen tinnitus even though I was still taking it every day. I tried to taper it carefully and very slowly (5% per month), but the attempt resulted in catastrophic tinnitus. I reinstated but that only made it worse. One year later I am on tinnitus death row. I worsen from every little bit of stress and even sounds below 65db. I regret taking this poison every day. There is noone who can help me now and I believe that I am dying from this shit.
delta784
i can feel you im the same im only taking once a week since 6 months 0.5 is it bad?

I think it worsened mine too both dcn and ear tinnitus im plannning to stop should i taper even i take once or twice a week how old are you

can you help me with taper like i told i take once 0.5 a week when i meet my gf sometimes twice tuesday and saturdays 0.5 never upped a dose but definitely doesnt work as it used to before
streifzug
You're ok I think. Clonazepam starts getting problematic if you take it longer than 1-2+ weeks every single day. Quitting once a week shouldn't need a taper. I'd ask your doc or chatgpt for more info.
delta784
I had tinnitus my whole life basically very low level only right ear never bothered by it exploded after intravenous methylprednsilone became bilateral, gave me visual snow dysacusis and ear pain. the funny part is i used that medication for mild sound exposure i was actually aware how shitty severe ear problems are how idiot i am health anxiety and ocd ruined my life and my future. im only 30 im %100 sure i damaged my inner ear structure and i am last person on earth to deserve that shit i never been in loud stuff im asocial
S
I feel this man i'm only 27 and dealing with this shit hearing loss and tinnitus is so annoying man and there is no cure sad world we live in bro.
delta784
hows sertraline i am same with you trust me i want to try something for my pain and mental health
Tom Okay
Sitting on a bench on a chilly early autumn evening enjoying my tinnitus masked a little by the wind in the trees.
alwaysmasking
I worked today. T started off bad. But it seemed to level off throughout the shift, and now it's much reduced... I don't need to mask at all.

I've noticed this is a common trend. Days where I don't work usually means terrible T all day. Days where I work... I'm OK once I get back.

This isn't a matter of, oh, I'm noticing it less - it's objectively quieter.

I wonder why this happens, and how to replicate it on days where I don't work?
S
Got a free ticket to theater to watch Romeo&Juliet. Decided to take the risk. Earplugs on of course. Tomorrow I will know how it went. Right now I feel OK.
S
Well. I managed it somehow, but it was still bit too much. Would I do it again? Maybe, but with better ear protection.
alwaysmasking
About four months into a nasty spike. It began with an increase in my right ear beep (one of the first sounds I heard back in 2020). The usual masking noise didn't work, so I started adding crickets on top. More bad days than good, and the bad days are bad. Started a new job; usually T is less bad after working a shift. A few good days but it seems even the good days aren't back to baseline. The major change: louder static in both ears. Trying hard to cope with the Back to Silence Method, which helps, but I usually just end up masking ...

But [knock on wood] the beep is slowly fading back down. The increased static is more resilient. Oh well. Here's to more good days!
S
This is such an awful process. I know I'm getting better, but it's just so dang slow. I started a new job in July, too, when it was still in its worse stages. Adapting to a new job while going through this is not fun at all.
Varda
I'm afraid that intravenous midazolam used for sedation during a gastroscopy will cause Benzodiazepine Induced Neurological Dysfunction (BIND) and worsen my T. Leaning towards just not getting the gastroscopy cuz F the medical establishment.
alwaysmasking
It sucks so much that we just never know what will make us worse or not. And then there's the whole issue of stressing out whenever we do try something new - 'cause then we listen obsessively and more often than not convince ourselves it's worse. I hope you continue to enjoy a quiet day here and there. Be well.
D
That condition is caused by prolonged use. In the short term, I've only ever heard of benzos and sedatives helping tinnitus. But ultimately it only matters what you're most comfortable with.
Varda
@dd314 I've heard that the condition is caused by not slowly tapering benzodiazepines. Midazolam is very short acting. During sedation your system is flooded with it via IV then suddenly it is completely stopped. The potential consequences of that sort of aggressive ON/OFF exposure to the drug frightens me.
Kain
damn i really need help in the mental fortitude department
alwaysmasking
Me too. Good luck with your classes; hopefully they offer a decent distraction :)
Sodlin
Somehow i did get a HUGE spike from that kids birthday even tho i wore earplugs thru the entire 3 hours... stil very tired and felling abit "off" in the neck so hope that is the reason. the spike is only in one ear. Suchs a boomer....
BrOKeN_1
I think my addiction to caffine is keeping me from having meaningful improvement. But how does one live without it? Cocaine isn't an option.
MindOverMatter
Caffeine is, as you know, a stimulant - especially in higher doses. I still drink coffee, but max two small cups before midday. After noon I drink only decaf.

I would consider cut down on the amount if you consume a lot.
kingsfan
If drinking coffee means louder tinnitus, then so be it. I already lost my cigarettes to asthma. I'm not losing my coffee too.
PennyCat
Now my TTTS is back. Since this eventually went away for me and only occasionally flared up, I'm sure it will subside again but I'm scared that it won't. It's one thing after another
alwaysmasking
The not knowing is the worst. Well, it got better before, so there's a good chance it'll get better again. Hope you are managing alright!!!
Sodlin
Everytime i feel more "normal" i go to a kids birthday and realize im still VERY senstitive to noise. Im sitting thru kids crying, screaming, laughing and 2 ballons pooped like 4-5 metres away. Its like sitting on the normandy beach during WW2 and parents just sit there and smiling at the kids and think they are sooooooo cute.... (had 20-25 DB earrplugs) still very loud to me tho
delta784
Hello Nes you still take clonazepam occasionally?
Nes
Hello! I think the last time I took clonazepam was when I was hospitalized in June and couldn't sleep because I had bad tachycardia. Otherwise no, I don't really need it lately. But I keep pills in my bedside table just in case
TheEarGuy
This world can be so beautiful, but just as twisted. I hope you all experience silence within your life time. No one deserves discomfort.
Ricardo1991
I log in usually every time there's a change or a spike. So that means, I am experiencing a spike right now unfortunately. Very quiet morning and then sudden loud ringing with some numbness. Hope it all comes back right but I guess I'll wait and see.
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