I’m at a Rave

[JohnAdams]

Are you sure? In any case, my policy is to never talk about the state of my ears here.

why?

 

[JohnAdams]

All of you making fun of Bill for protecting himself are ridiculous losers, like way bigger losers than even me. About 5 months into this monstrosity I went to a church, not a rave, a church, and got a spike that easily doubled my tinnitus level and increased my hyperacusis significantly. Before that happened, I could wake up to ZERO tinnitus sometimes, but after that it was always there. Now I've had near silence again but only after flying around the world and spending thousands of dollars and enduring a literal assload of pain getting PRP injected into my eardrums over and over and over and over and over.

 

[GSC]

All of you making fun of Bill for protecting himself are ridiculous losers, like way bigger losers than even me. About 5 months into this monstrosity I went to a church, not a rave, a church, and got a spike that easily doubled my tinnitus level and increased my hyperacusis significantly. Before that happened, I could wake up to ZERO tinnitus sometimes, but after that it was always there. Now I've had near silence again but only after flying around the world and spending thousands of dollars and enduring a literal assload of pain getting PRP injected into my eardrums over and over and over and over and over.

There's a thread bashing Bill Bauer on here and on reddit.

 

[PureNoise]

He knows jack shit.

So it can go away or fade and I can safely go to bars and nightclubs with ear plugs without it getting worse?

 

[JohnAdams]

So it can go away or fade and I can safely go to bars and nightclubs with ear plugs without it getting worse?

There is not straight answer to that. You could be on the very edge of causing more damage and that one night out could push you over. None of us can see exactly what damage is in our inner ears and how many nerve fibers are just barely hanging on. I went to a bar about 1.5 months ago with ear plugs in and it wasnt very loud and I was ok. Nightclubs? I wouldnt.

 

[JohnAdams]

There's a thread bashing Bill Bauer on here and on reddit.

I've been on this site for about 9 months and I've seen nothing from him that I would consider egregious. I don't 100 million trillion trillion trillion billion% agree with every post he's made but what's the deal with his posts? He advocates being careful, which is actually the best possible position anyone in our condition can take.

Even if fx-322 or the like comes out and restores some of our hearing and quiets our tinnitus, guess what? Our new connections WILL NOT be as strong as the ones we were born with and we will still have to be very careful, if not more careful.

 

[BreachOfEuphoria]

There's a thread bashing Bill Bauer on here and on reddit.

Bill Bauer is a good contribution to this site. He is constructive.

It's funny how there is always a small poisonous army of small rodents on here that like to spread their vile.

 

[Contrast]

There's a thread bashing Bill Bauer on here and on reddit.

yeah I have haters too. Some guy called me the guy who freaks out over a couple of dead synapses

 

[GSC]

yeah I have haters too. Some guy called me the guy who freaks out over a couple of dead synapses

Who wouldn't freak out over dead synapses when those dead synapses can be why you have Tinnitus and broken hearing.

 

[linearb]

But will we really see a cure? I spoke to an expert ENT who said once the tinnitus is activated in the brain, even if you reduce it or get to hear silence again — loud noise exposures WILL bring it back. Tinnitus is forever sadly.

I don't think these devices will cure anyone; they're a palliative aid.

 

[PureNoise]

I don't think these devices will cure anyone; they're a palliative aid.

Agreed. I'm hopeful my tinnitus can fade to silence. I personally know a doctor who had their tinnitus go away after 12-15 months.

 

[Digital Doc]

So it can go away or fade and I can safely go to bars and nightclubs with ear plugs without it getting worse?

In short, no. We don't even know how loud the bar is, or how protective the earplugs are.

 

[Bill Bauer]

why?

I don't want to go into any details, for fear of jinxing it. I am Not a superstitious person, but T is so horrible that I am not going to take any chances.

 

[Djstarkiss]

DJing @ two shows back to back weekends in August. If any of you want to go, let me know!!!

@Bill Bauer you down?

 

[Mathieulh]

No need to beg Billy, I did resume my life ears be damned. I go to the grocery store (your fav) without earmuffs, omg!! I even go to movies and bars too!! Such a risk taker I am, I tell ya. And you know what I'm doing great! You yourself said you dont like making compromises ie. Dealing with humans - and you project your thoughts on others by making them fearful of everyday noises. No a rave is not an everyday noise but the OP is aware of the risks and will be using hearing protection. He is good with that and you should be too.

There are less risks going to the grocery store without ear protections than going to a rave party with ear protections. Sometimes you have to understand you are part of a population that's more at risk and act accordingly, does that mean you have to give up a normal life? I certainly hope not.

That said not protecting your ears at an early onset of T (6 months or earlier) while being exposed to loud noises (anything louder than 60-65db at this stage) and taking unnecessary risks during that time period is the epitome of stupidity.

The ears (at least the parts that are only damaged and not dead) do heal, albeit very slowly, it can take up to 2 years, but if you don't give them the chance to and keep exposing them to loud noises, not only will the damaged cells never heal, but they (strongly) risk getting worse and die off (this causing further irreversible damage) and that's how you go from "manageable" mild or moderate tinnitus to a permanent, lifetime suffering of severe debilitating "please kill me!!" level of tinnitus.

I personally wouldn't take the risk. Would you?

Once you are past the acute trauma period, then you can stop being overprotective and start being careful, which you will have to be, unfortunately, for the rest of your days. That probably means no Rave for you either (or other T afflicted subjects), but you can most likely get to enjoy going at a pub without wearing ear protections.

Remember, you only have one pair of ears, you'll regret them once they are gone.

 

[Mathieulh]

But will we really see a cure? I spoke to an expert ENT who said once the tinnitus is activated in the brain, even if you reduce it or get to hear silence again — loud noise exposures WILL bring it back. Tinnitus is forever sadly.

ENTs know as much about Tinnitus today as 14th century healers knew about the Bubonic plague.

 

[Djstarkiss]

Here's the reality. I can either have fun now and suffer later or skip everything I love and suffer now and probably later also.

I'd rather continue DJing / raving / playing airsoft / riding my motorcycle / shooting guns / wearing headphones... Than sit in my house and feel sorry for myself because I got a little hum in my drum...

Maybe later I'll regret it but fuk it... one thing I won't regret is not missing out on shit I enjoy.

If that makes you jealous or salty I'm taking this approach to my tinnitus sorry but this my journey and I'm being kind enough to share it with you.

BBL got loud music to listen too...

 

[Mymlan]

@Djstarkiss You know what, you should do anything that you are comfortable doing. It's your life and we are all different. I mean it. I'm super anxious about my tinnitus and my hyperacusis, but not everybody have to be.

But infact. I agree with JohnAdams. Stop making fun of people in here. That's not ok. We are all here for some support!

Otherwise, live life! You only got one! Cheers.

 

[Autumnly]

If that makes you jealous or salty I'm taking this approach to my tinnitus sorry but this my journey and I'm being kind enough to share it with you.

I don't think people have so much of an issue with how you're living your life but that it seems like you're looking down on people who are not coping with tinnitus the way you can. For example you saying you don't want to stay at home and feel sorry for yourself but for many people with severe tinnitus and severe pain-hyperacusis there's no other option currently. There are also many people who can't even work anymore because of tinnitus or pain-hyperacusis, they're not just whiny and feeling sorry for themselves, they are debilitated by a severe, physical condition.

 

[Jack Straw]

Here's the reality. I can either have fun now and suffer later or skip everything I love and suffer now and probably later also.

I'd rather continue DJing / raving / playing airsoft / riding my motorcycle / shooting guns / wearing headphones... Than sit in my house and feel sorry for myself because I got a little hum in my drum...

Maybe later I'll regret it but fuk it... one thing I won't regret is not missing out on shit I enjoy.

If that makes you jealous or salty I'm taking this approach to my tinnitus sorry but this my journey and I'm being kind enough to share it with you.

BBL got loud music to listen too...

I'm not going to tell you what to do and not to do.

But we have had people with that attitude here before, and it didn't end well.....

If you are going to do these things. Please at least protect your ears.

 

[Mathieulh]

Here's the reality. I can either have fun now and suffer later or skip everything I love and suffer now and probably later also.

I'd rather continue DJing / raving / playing airsoft / riding my motorcycle / shooting guns / wearing headphones... Than sit in my house and feel sorry for myself because I got a little hum in my drum...

Maybe later I'll regret it but fuk it... one thing I won't regret is not missing out on shit I enjoy.

If that makes you jealous or salty I'm taking this approach to my tinnitus sorry but this my journey and I'm being kind enough to share it with you.

BBL got loud music to listen too...

It's not about jealousy, I am not jealous in any way shape or form, there are however better ways to enjoy, and keep enjoying life, than putting your ears further at risk, because, once you get a severe Tinnitus (which I hope you won't, because I wouldn't wish this on anybody), then you will be the one that's jealous, because others won't be living a life of hell.

If you call what you have "suffering", think again, once you have such a debilitating tinnitus that you can't even focus enough to read our posts, then you will know what suffering can truly be like, because, yes, that, unfortunately, can happen.

 

[Ken219]

Even if fx-322 or the like comes out and restores some of our hearing and quiets our tinnitus, guess what? Our new connections WILL NOT be as strong as the ones we were born with and we will still have to be very careful, if not more careful.

I can do that! A second chance.

 

[Digital Doc]

All I know is that I had quite loud T which woke me up from sleep every few minutes, and then H that felt like a knitting needle was going through my brain every time the microwave beeped.

Thankfully, that has all faded into the background, but you could not pay me enough to go to a rock concert even with my choice of hearing prevention.

Let's just say, been there, done that, and not going back.

Then again, life is full of choices, and everyone gets to make their choices, for themselves.

 

[RaZaH]

If it gets worse fuck it

OK... good luck with that.

 

[Fabrikat]

But will we really see a cure? I spoke to an expert ENT who said once the tinnitus is activated in the brain, even if you reduce it or get to hear silence again — loud noise exposures WILL bring it back. Tinnitus is forever sadly.

Tinnitus will indeed be forever, even after it's been successfully treated, because we will always have the propensity for it to reoccur.

The real future of tinnitus research is, as with all other medical conditions, prevention.

For some reason, unlike the majority of the rest of the population exposed to the same auditory insults, we develop tinnitus. Why is that?

If the answer lay within our genes, as is quite possible, then only a re-engineering of these genes will ensure that tinnitus and its potential is eliminated forever.

 

[Snake]

I don't think these devices will cure anyone; they're a palliative aid.

I think that Palliative is bad kind of word, if Lenire works then it's something that could hold us over to survive longer. And maybe if we're lucky then survive as long as we have to see new treatments, or cure or something.

Anything that will reduce the actual volume and disrupt the tinnitus behaviour will probably change our mood instantly and help us to be more optimistic about the future. We just desperately need this first thing. I don't know if it's Lenire and bi-modal stimulation as a whole but we're gonna see this summer. If it is then i hope that they will ramp up production of the devices and create a clinic in the central Europe to avoid flight (With my luck i would probably harm myself by flying somehow. Barotrauma, noise or something else)

If not, then i don't want to think what... I need something to help me now. It's 8 years and I'm losing it.

 

[Coffeebean]

I never thought I'd be back at a rave but here I am only two months after getting my tinnitus.

First month I wanted to die legit almost killed myself. Was crying myself to sleep hated my life... slowly I just started to ignore it... obviously when I go to bed I hear it a bunch but you just make sure you're so tired when it's bed time that you fall asleep no matter what... during the day I barely think about it especially if I'm busy. I keep ear plugs on me where ever I go though just in case I find myself in a loud situation.

Now that I got my custom ear plugs though I went to a rave again and it was fine. I plan on just living my life normally like before I ever got it... obviously it's affecting me slightly still but the future is looking bright again... you can get use to this... if I can you can... I'm a very sensitive anxiety-ridden person so I know if I can do it you can too...

Really you gotta just not focus on it. Get it out of your brain that it's a bad sound and just learn to hear it as part of your new world.

Good to hear that you are not letting this condition rule your life, and that you are living it to the fullest while at the same time being careful (but not fearful!) with your custom earplugs. I know that a lot of people reach this stage, but they usually do not stick around on these forums.

Thank you for sharing your positive story and showing that tinnitus does not have to limit your life.

 

[Backpacker]

@Drone Draper

Why is Tinnex only used in Switzerland, Austria and India?

Do you know where I can find it in Austria? I asked in tinnitus centre in Vienna, they said no, and a different doctor said that they give caroverin infusions in Germany. I don't know... I know it may not work but I wanted to try.

 

[Tom Cnyc]

I don't think people have so much of an issue with how you're living your life but that it seems like you're looking down on people who are not coping with tinnitus the way you can. For example you saying you don't want to stay at home and feel sorry for yourself but for many people with severe tinnitus and severe pain-hyperacusis there's no other option currently. There are also many people who can't even work anymore because of tinnitus or pain-hyperacusis, they're not just whiny and feeling sorry for themselves, they are debilitated by a severe, physical condition.

From my perspective, nobody is looking down on people that have severe issues to the point they're bedridden. Maybe a large percentage of people that that post here for years on end DO have severe issues.

BUT! Those people are actually the MINORITY. Many more people LURK here, or just read this site. The sites OWNERS have said the many many times in the three years I've posted here. Most of the unique users are heavy users for a short time, and then move on.

Statistically, this means that a message to push through the depression, and get your life back - is probably the most important message this site can have.

It's the only reason I still post here. The version of myself dealing with the freak out phase needed positivity. Reading warnings about ever going out passed back and forth by people that never go out wasn't helping. It's not to make you feel bad. It's to make someone else feel good.

 

[Djstarkiss]

I just did my first DJ gig since tinnitus. It's been 8 months of a break and I feel fine / the same... I took a dB meter to the gig. That dance floor was mostly 100-130 dB but I kept the DJ booth 85-100 dB while I was DJing... I had -16 dB earplugs in

I have a hearing test when I get home & then another show next weekend. Feels good to crack on with life... tho I didn't hang out in the club. I stayed out front till it was my turn to play, then left straight away after!!