For Tinnitus sufferers

[woxihuanni]

I've seen people here for whom tinnitus is a big reason for considering ctb, here is some news I stumbled on today:

Scientists May Be Able to Treat Tinnitus With Electronic Music And Tongue Buzzing

People who experience tinnitus might finally have some hope for alleviating their symptoms, after an experimental device that stimulates the tongue was found to ease the condition in a sample of 273 volunteers with a chronic case of it.

www.sciencealert.com

 

[Fedrea]

I've seen people here for whom tinnitus is a big reason for considering ctb, here is some news I stumbled on today:

Scientists May Be Able to Treat Tinnitus With Electronic Music And Tongue Buzzing

People who experience tinnitus might finally have some hope for alleviating their symptoms, after an experimental device that stimulates the tongue was found to ease the condition in a sample of 273 volunteers with a chronic case of it.

www.sciencealert.com

That is the Neuromod trial. Check out the forum Tinnitus Talk for real life outcomes and even a scientific analysis of the real life outcomes experienced by forum users. Some better, some worse though.

 

[woxihuanni]

That is the Neuromod trial. Check out the forum Tinnitus Talk for real life outcomes and even a scientific analysis of the real life outcomes experienced by forum users. Some better, some worse though.

Thank you, I had no idea (saw this in today's news). It is not really for me as such, but people might be directed to the resource you mention.

 

[schopenh]

Devices like this usually show some sort of positive outcome in the one trial that the manufacturer allowed to be published (selective publishing). Then for sociopolitcal and economic reasons they end up being installed in every single patient with tinnitus; they invariably barely help most people and the doctors get mad at the patients for wanting them removed. This genuinely happens with basically all neuromodulation devices.


If you go to the very paper this article discuses (10.1126/scitranslmed.abb2830 - you can use scihubtw.tw to access it) and scroll down to the very bottom you will see the following:
Funding: This work was sponsored by Neuromod Devices (Dublin, Ireland).
Competing interests: B.C., C.H., S.H., E.M., C.O.C., S.L.L., S.D., and HHL are or were employees, consultants, and/or shareholders of Neuromod Devices. B.L., S.V., and D.A.H. serve on the clinical advisory board of Neuromod Devices and receive monetary compensation for their contribution.

 

[Fedrea]

Devices like this usually show some sort of positive outcome in the one trial that the manufacturer allowed to be published (selective publishing). Then for sociopolitcal and economic reasons they end up being installed in every single patient with tinnitus; they invariably barely help most people and the doctors get mad at the patients for wanting them removed. This genuinely happens with basically all neuromodulation devices.


If you go to the very paper this article discuses (10.1126/scitranslmed.abb2830 - you can use scihubtw.tw to access it) and scroll down to the very bottom you will see the following:
Funding: This work was sponsored by Neuromod Devices (Dublin, Ireland).
Competing interests: B.C., C.H., S.H., E.M., C.O.C., S.L.L., S.D., and HHL are or were employees, consultants, and/or shareholders of Neuromod Devices. B.L., S.V., and D.A.H. serve on the clinical advisory board of Neuromod Devices and receive monetary compensation for their contribution.

Yeah and also they didn't have a control arm. They argued it wasn't possible to have a sham control treatment, but I think there's a similar trial going on in Minnesota and they're planning a control arm.

 

[woxihuanni]

Thank you everyone for the information, sorry it was not helpful news...

 

[Fedrea]

Thank you everyone for the information, sorry it was not helpful news...

Don't think that, as it has helped some. But research and trial results can be overblown and beset with conflicts of interest.

 

[schopenh]

Thank you everyone for the information, sorry it was not helpful news...

Thank you for sharing, sorry if it felt like I was putting you down, that wasn't my intention

 

[Chupacabra 44]

Please keep sharing, and thank you for taking the time to post. And, to others thanks for pointing out some study design issues.

I've had tinnitus for 20 years, and fortunately it's not as bad as Susan's, who we hear from on this forum. But, there are times when I think enough is enough and figuratively want to jam an ice pick down my ear canals.

 

[llerutem5]

Thank you everyone for the information, sorry it was not helpful news...

That was good intention very kind from you I know how hard tinnitus could make me push to the edge of wanting to stop existing it is often like a failure to deal with it. But I had most helpful humans who did much better than any doc or medical tool. I too read the publishing some years ago and it looked like a very smart technical solution but difficult to fit the particular needs of the very patient. Guess some might have found relief with the devices, if affordable.

 

[woxihuanni]

Thank you guys for your kind replies, too. I wish you all find relief from your suffering

 

[GoneGoneGone]

Thank you @woxihuanni

I posted this in one of Sudan's threads, maybe it is useful to someone here.

There are some earbuds from Flare Audio, called Calmer, which allegedly have had great results with tinnitus.

 

[roju]

It didn't work for me...

However, thank you @woxihuanni. You seem a kind soul.

 

[BridgeJumper]

I dont believe anything will fix it for me at this point
Also it involves seeing a doctor who would prescribe the treatment which I will not do because of my ptsd.
My friend tried this therapy and told me she had to take fucking mental illness score tests to determine whether her not being able to cope with tinnitus is because of mental illness, and she needed to lie on them in order to get approved.
And getting the electrostimulation device was so expensive she needed to dig into the fund her parents set up for education and stuff.
It did help a bit, but she still hears the ringing

Not to mention I was unable to even register on TinnitusTalk because they expected me to know....the names of all famous tinnitus researchers
So yeah.....

 

[GoneGoneGone]

Thank you @woxihuanni

I posted this in one of Sudan's threads, maybe it is useful to someone here.

There are some earbuds from Flare Audio, called Calmer, which allegedly have had great results with tinnitus.

Susan's threads. Can't even spell anymore...

 

[llerutem5]

And getting the electrostimulation device was so expensive she needed to dig into the fund her parents set up for education and stuff.
It did help a bit, but she still hears the ringing

Someone else found it helpful to self care with natural sounds.
A friend of mine took herself to a calm seaside with slow, peaceful tide and it was
overlaying the high pitched ringing through the crisply and tiny fresh sounds the waves would constantly make. Was probably the right frequency to serve her case I guess.
Anyhow, making it a digital sound to take at home did not work well, too complicated sadly.

 

[roju]

Unfortunately, the only cure for tinnitus is death.

That's why I'm here.

 

[everbuzzingone]

Tinnitus is the reason I'm here. It started aggressively and intrusively in March 2020 and hasn't gone away even for a moment since. I can hear it over absolutely everything and is the sole reason I consider CTB. I don't want to think this way, but the complete lack of peace and constant electrical buzz is wearing me down.

I think the only thing keeping me going is the hope that a hearing loss drug, FX-322, is in Phase 2 trials right now and there has been a lot of positive information on it helping tinnitus. Waiting 2, 3 or even more years for it to be approved by the FDA and released just seems impossible, though.

 

[BridgeJumper]

Month: 11
My stupid ear condition is STILL getting worse and it STILL wont fuck off.
I found a medication that could cause me to go deaf, it could also cause me to go into organ failure and bleed out, but I JUST WANT TO REMOVE SOUND

 

[everbuzzingone]

I found a medication that could cause me to go deaf

I'd recommend not taking any medication that could cause you to go deaf. Believe me, I get thinking that being deaf but having silence would be better than being able to hear but with a constant screaming in your head. Problem is, if you already have tinnitus and go deaf, then there's nothing but the tinnitus left.

I just want silence again. Otherwise, might have to wait at the bus stop.

 

[BridgeJumper]

I'd recommend not taking any medication that could cause you to go deaf. Believe me, I get thinking that being deaf but having silence would be better than being able to hear but with a constant screaming in your head. Problem is, if you already have tinnitus and go deaf, then there's nothing but the tinnitus left.

I just want silence again. Otherwise, might have to wait at the bus stop.

Yes, but I also have hyperacusis (sound sensitivity condition) and noise induced vertigo, so sounds are literally the bane of my existence. I go out and after 10 minutes I want to cry. And move into the wilderness

 

[everbuzzingone]

Yes, but I also have hyperacusis (sound sensitivity condition) and noise induced vertigo, so sounds are literally the bane of my existence

I'm so sorry you have H and vertigo... that definitely changes what you said earlier and can't image the added torture. T, H, and any hearing/ear related issues are probably some of the most difficult things to deal with yet nobody understands or seems to care because they can't imagine it or see it.

I hope that all of the research going on right now for hearing issues really helps people like us soon.

 

[BridgeJumper]

I'm so sorry you have H and vertigo... that definitely changes what you said earlier and can't image the added torture. T, H, and any hearing/ear related issues are probably some of the most difficult things to deal with yet nobody understands or seems to care because they can't imagine it or see it.

I hope that all of the research going on right now for hearing issues really helps people like us soon.

People be like 'Everyone gets dizzy, youre being dramatic'
Making fun of me cause they cant possibly imagine that TV sounds like a motorcycle engine and everything spins in circles.
Doctors dismiss me.
No way to stop this.
Either die or suffer
AAA
The only thing worse than this would be being blind.
I would even rather be a paralaplegic in a wheelchair than this, but if I told anyone theyd think Im insane.
They have no ideaaaa
Can I pm you or something? T.T


My ears are full of FUCK and God, I never expected it would hurt this bad

 

[everbuzzingone]

Yeah I completely understand with everything you said. Sometimes I even think being blind would be better because at least then you can still experience peace and quiet.

Sure you can.

 

[fox_wannabe]

I just understood I have tinnitus. I blame It on emf and cell towers that are everywhere in Poland.
It does not let me sleep at night and I feel constant high pitched sound inside my skull. Turning off wi fi does not work

 

[lifeisbutadream]

I just understood I have tinnitus. I blame It on emf and cell towers that are everywhere in Poland.
It does not let me sleep at night and I feel constant high pitched sound inside my skull. Turning off wi fi does not work

Get a doctor to give u a benzo like lorazepam. It saved my life when i had tinnitus over 20 years ago and was totally unable to sleep. It allowed me to relax and sleep, and then my brain adapted to the tinnitus and then i came to think of it as a good thing. I imagined i was in a spaceship or submarine and the hissing noise was ions or water passing. I beat tinnitus, but the benzo drug let me start. I want to help people with it because i know it drives people to utter despair - and it can be beaten! I did it. And now i see there's new research too.

If i beat it twenty years ago why am in a place like this now u may ask? No, it is for a totally different reason.

 

[Лавина]

having ear disease is very painful. noise, hyperaccussion, fullness ... it hurts a lot

 

[RN12]

Get a doctor to give u a benzo like lorazepam. It saved my life when i had tinnitus over 20 years ago and was totally unable to sleep. It allowed me to relax and sleep, and then my brain adapted to the tinnitus and then i came to think of it as a good thing. I imagined i was in a spaceship or submarine and the hissing noise was ions or water passing. I beat tinnitus, but the benzo drug let me start. I want to help people with it because i know it drives people to utter despair - and it can be beaten! I did it. And now i see there's new research too.

If i beat it twenty years ago why am in a place like this now u may ask? No, it is for a totally different reason.

benzo's are dangerous, and can even cause tinnitus from withdrawal. Not in everybody, but there are a lot of people horrible suffering from extreme protracted disabling withdrawal. that's the reason why im here.

I had an awesome life. these drugs destroyed me and i took it under a year

 

[fox_wannabe]

Get a doctor to give u a benzo like lorazepam. It saved my life when i had tinnitus over 20 years ago and was totally unable to sleep. It allowed me to relax and sleep, and then my brain adapted to the tinnitus and then i came to think of it as a good thing. I imagined i was in a spaceship or submarine and the hissing noise was ions or water passing. I beat tinnitus, but the benzo drug let me start. I want to help people with it because i know it drives people to utter despair - and it can be beaten! I did it. And now i see there's new research too.

If i beat it twenty years ago why am in a place like this now u may ask? No, it is for a totally different reason.

Thanks but I do not want to start with benzos, I am prone to addictions. I am starting with ketrel tomorrow- It puts me to sleep like a bullet inside mushy brain (I am really fucking suicidal rn holy shit)

 

[Dot]

EFT been helpful for some.