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If they were still looking for further study subjects I would make the 800km trip to participate. I am frustrated at the responses from health professionals about my tinnitus. They dont get it. It would be good to have an objective measurement.
I know. I asked my tinnitus researcher about it. She was aware of the article. She reckons it has all gone quiet. Nothing further has been published by the Bionic Institute about fNIRS.
Hi @trevl I saw your post about bionics institute. It was in a different thread though, so I reply here. The fnri does not measure the sound. The sound is not really relevant in research as much as it is to the patient. Presence and severity is measured.
Urk. I was outside walking with a coworker and they saw someone on the other side of the street so the one next to me litterally yelled STRAIGHT INTO my ear at the top of hes lugns for the other person to come join us. I reminded him to not do like that and he just brushed it off with "oh i forgot". Think i got a spike from it. Was wearing my 35 DB earplugs luckily enough. Anyone experience something similair?
MindOverMatter
I've noticed from your comments that you seem very alert. I don't blame you. Ive been there. But with the "guard up" all the time, it makes it quite difficult to navigate through this. An auditory system thats is on the alert constantly, will also tune in pretty much any sound and consider it a threat.
Sodlin
@MindOverMatter it seemed to "spike down" fast back to baseline. I 100% agree that im on the "alertness" more or less all the time. Its hard because everytime i havent been on "alert" ive done something stupid and ended up with a louder baseline of tinnitus :/
MindOverMatter
I get you @Sodlin I get you, as I know how it is, but there is a difference between hypervigilance and being "smart" around soundscapes that might upset you. Being hypervigilant around sound usually make our reaction to the sound worse.
I didn't get better at all in terms of tinnitus and ear related stuff but I'm kind of doing better in life compare to 10 months ago. At least I'm able to work. I'm hoping for the better.
Was putting out the trash. Had one glass bottle and placed it carefully on a plastic bag, when i dropped it feel thru the plasticbag like 50-70 cm and hit a glass bottle that was lying down in the trashcan. Could feel the loud "KLING" in my right ear....Must have been a 120 DB im just hope nothing will happen. Man this shit really takes a tool on you, glass sounds are the worst.....
I can't do this much longer. The sounds are horrific and the pain from nox. I really tried.
henkess
Maybe its only temporary?
in_the_shadows
Take it one day at a time. Things will improve. Your brain will eventually adapt. Also, make sure to get plenty of magnesium, it helps regulate glutamate.
vilebubbles
Thanks friend. But it feels impossible to adapt when I'm getting new faster more intense tones every few days. They never leave they just pile on.
I saw your exchange with Dr nagler from 2019 regarding going to a club. I totally get it now I have the same concerns. How are your ears doing? To prevent hearing loss like his high antioxidants along with NAC and ginkgo biloba and lots of magnesium powder. If I get exposed to loud noises with ear plugs I get paranoid and then I double down on everything I'm already taking. I also take Enzyme coq10 and Elavil
New tones daily. They get faster and stronger and make my body tremble. Can only sleep 3-4 hours with a benzo. Feels like my brain is breaking down. Starting to see green when I close my eyes instead of black. I'm scared.
still same after adverse reaction from methylprednisolone biggest mistake of my life. I regret everyday every single day. my life wasnt supposed to be like this now i have visual snow syndrome too
in_the_shadows
Try not to dwell on it, there's no reason to blame yourself. Prednisone is generally considered very safe, and there was no way you could've predicted such a reaction. I'm confident your nervous system will heal with time.
delta784
still same after 6 months its permanent its not even about nervous system it damaged my brain neuronal damage i have visual snow due to that poison as well ruined my life relationship everything.
Ear sensitivity... guessing Hyperacusis isn't improving like it did before.. maybe I am not giving it long enough.... Seems like I am in for another 2 year wait and see, after spending the last 2 years getting to a good point. Stupid... and could of been avoided... but.. it seemed safe... Not sure if I can do 2 more years.
I can hear it tonight; it's still there. It's a little comforting, or so I like to think of it that way. It's there, but it gets easier. Much love 🤍
Loud cars with extremely noisy engines are making me agoraphobic. Can't step a foot out of my house before someone drives their awful loud car down the road.
I worked in Baker st. today after 3 years.
Tryn2BHopeful
This is good?
2049v
I had to stop working due to a health issue. Then I had a surgery. Even before I was fully recovered from it, I had f... tinnitus. So I can say it's pretty good 😄 @Tryn2BHopeful
H
'I worked in Baker st. today after 3 years.'

🔍 221B? 😂👍
One and a half year after my T worsening I developed chronic stomach issues. Is this normal? Has anyone tried anything similar? I think my T caused my now debilitating stomach pain
L along the way
Hi @Juliane, sorry to read that. Strangely enough i've also had issues with my bowels... I'm taking psyllium fibers now, which helps. Also switching to a plant based diet has had very positive impact for me.
L along the way
What you write about the nervous system.. i also believe that spending time in nature and getting plenty of rest are very helpful.
L along the way
But i also wanted to mention kratom, i sometimes use it to unwind a bit. It's legality differs from place to place i've read.. and it can be addictive.. but just from personal experience, i found it to be of benefit from time to time. But just don't get addicted, and use responsably as they say.. anyhows i hope you may feel better soon. Love
I thinking of getting a dog or a cat, cant decide. To keep me occupied from my tinnits and TTTS :)
Sodlin
Cat everyday in the week. Cats can also be loud but more like 70-80 DB if they talk alot but dog barks are just RIP for my ears. imagine lying at sleep and WOOF WOOF right next to the ear its like asking for problems. My cat help me relax and calm me down when TT brings me down tho so i recommend it strongly :)
hi Fernando

please kindly respond
I know youre a busy guy but please take a few minutes to help a brother out
For first initial treatment , is it important to go first for the stemcells 21 treatment similar to yours ? or can I just go directly for iv infusion treatment only ?
please I need your expert advice urgently, please kindly help ,Really need your advice
thank you very much
hi Aetos

please kindly respond
I know youre a busy guy but please take a few minutes to help a brother out
For first initial treatment , is it important to go first for the stemcells 21 treatment similar to yours ? or can I just go directly for iv infusion treatment only ?
please I need your expert advice urgently, please kindly help ,Really need your advice
thank you very much
Been talking to chat gpt. Apparently rapid paced tones that don't change and are in your brain rather than ears is a symptom of severe auditory hyperactivity and likely permanent. I'm fucked. If some of these tones don't go away I'm out.
Had a drawer out and somehow managed to get my knee into it on full force. Was proper loud and i got a slight fullness in the ear from the sound. Took NAC and Magnesium instantly. Hope i wont spike.
orenge01
Same has happened to me many times, it's weird how I manage to bump myself into thing so much. Just know you're not alone :LOL:
Sodlin
@orenge01 Just hate when stuff like that happens -.- My tinnitus is superloud atm but i think that is because im sick. Got a very large "lump" on my neck thats hurts alot
orenge01
Yeah tinnitus can definitely fluctuate when sick :/ , hopefully you get well soon.
Haven't had my TTTS flare up in a long time but it's back today. Frustrating, but scrolling thru my own posts helps reassure me that it always does eventually settle after a few days.
henkess
I have big trouble with it, i got muscles relaxer now and it gets away in 3-5 hours. So thats a relief atleast. Why do you think your starts?
Hello Kam, how's going? Marcello here from Brazil. I've read your story in some posts and I've been facing some situations very similar, I went from mild tinnitus to the point of can't get asleep naturally at the moment. How is your sleep today? What medications do you use? I've trying some combination of them to get the best benefit to the sleep. It would be nice to be able to talk about it and exchange some tips.
Kam75
To be honest I was king of scared to take it, as I don't want my body to get used to another drug and then have to take a stronger one. It is really safe? I only took it once. I didn't see any difference, but maybe I'll consider take it more often
:)
Thanks for the advice!
Marcello
You can trust it completely, it is an extremely safe medication, especially in low doses up to 100mg. In this situation, do not worry about the medication, a good night's sleep is more important than anything. Try the combination of mirtazapine and quetiapine that I told you about, if your doctor has already prescribed it, even better, you can insist on the medication.
Marcello
I also know how horrible it is to lose sleep because of tinnitus. There are some more tips I can share with you if you don't mind, because believe me, I've tried everything too and I can already tell you some things that work and others that don't. If you decide to try the medication, came back here and share you experience.
hi Aetos
you mentioned chloe had all 600 milcells through iv infusion but here says some were through her auditory system ?
may i know how many mil cells were through her auditory system ?
pls advise tku

600 million cells were administered by three injections with 5 day intervals. The cells were injected into her veins and auditory system.
Hi Asta, how is your hearing now? Hoping things have improved for you as I too am suffering after recently having had microsuction in both ears.
7 year tinniversary

IMG_7708.jpeg
BrOKeN_1
Definitely "Raaaaaaaaaagh".
I never know how to congratulate someone on these big occasions. So lest just go with FUCK TINNITUS!

But seriously. Hope your coping reasonably well. Big Hugs!
Kain
@BrOKeN_1 Thanks, I've been doing okay I think! Thankful to still push forward! Hope you're doing well too brother man.
If I've had a new tone for a week, it's probably permanent right? Sounds like rapid fire piano keys banging.
vilebubbles
Thanks but I had tinnitus, hyperacusis, and nox before benzos. Nox is why I went on them :/. T just got much worse when I began tapering. But it was already getting bad.
S
How long had you been suffering when you went on the benzo's?

Unless you were years in already, given some extra time after the benzo's to settle, things might gradually improve after and you could get a good bit of your life back...

You said yourself you've noticed an improvement in the nox and that's while withdrawing.

My T/H/N all got a lot worse before they started getting better.
vilebubbles
I'd had T and nox about 4 months before benzos. I'm just scared bc the tones are getting louder and more
Aggressive and none are eeeee or hiss. They're like rapid tones all over
My head
My left ear hissing is intolerable today. I rode my motorcycle a bit as it is 76 degrees today.
LukeYoung
Does that spike it? I had a motorcycle, oddly it seems the wind noise spiked mine every time. I sold it unfortunately, I loved riding for the short time I did get to.
BrOKeN_1
T just can't let you have a Lil fun. I'm having new tires put on the motorcycle Tuesday and wr will see what a bad idea that is. Haha. The weather is nicer and I hate having the bike rot away in a corner of the garage.