Getting Desperate — Tinnitus Since 1996 from The Smashing Pumpkins Concert

I have had tinnitus since about 1996... The Smashing Pumpkins concert. I remember it pretty good.

Anyway I have dealt with it because there is no cure. This forum reads like a laundry list of things I have already tried.

Doctors just shrug their shoulders. You know how it goes.

About 9 months ago mine started to get really bad. I mean it's literally driving me bonkers and after having it for the past 20+ years I have experienced everything you can imagine with spikes and tricks to hide it etc. But this is way different. I can't get away from it at all. Pitch changed, louder than ever before and impossible not to hear almost 95% time. I can't unhear it.

I went to an ENT (again) who basically said the same thing I have heard millions of times. They just have no clue. I had some hearing loss in one ear but at my age nothing abnormal. But they have no clue what a person with real tinnitus is going through.

I found this place on Sunday... God I was hoping for answers.

But there really are no answers, which always has me thinking of this line from the HBO series Band of Brothers:

“Ronald Spiers: The only hope you have is to accept the fact that you're already dead. The sooner you accept that, the sooner you'll be able to function as a soldier is supposed to function: without mercy, without compassion, without remorse. All war depends upon it.”

So in a less morbid way of speaking, the sooner I can accept my tinnitus, the sooner I can get going in life?

That can't be the only answer.

 

I don’t want to get your hopes up too high, but research from places like Frequency Therapeutics and the Hough Ear Institute are promising, and they’ll be here soon (5-10 years, not soon enough but within our lifetimes!).

20 years... I can’t imagine living with this for that long. Of course, I’m always worried that’s my future, enduring this for the rest of my life if those treatments don’t work for me:/. Or if I can afford them... I saw a video recently saying the pill Hough Ear Institute is working on is in the $3,000 USD range.

That’s all speculation, and until that becomes a reality, unfortunately habituation and ignoring it (or even embracing it?) is our only hope. I’ve gotten a lot better at habituating to mine, if habituation means not crying every day about it. When it gets worse (and mine has, from one tone to multiple in both ears), it totally throws me off. Like taking 2 steps forward and 5 steps back. I’m sure you’re in a similar place right now. I also got my tinnitus from many years of concerts and music; I think that’s the case for many if not most tinnitus sufferers .

While these forums can be helpful, if I spend too much time on here I’ll start thinking about how I’ll never do [insert most fun things] again. And 1) that’s not entirely true, and 2) it just sends you more into a depression spiral.

However, these places are good for finding support and folks to talk to, especially on those “bad days.” I hope you’re able to find some that support and comfort here.

I’m reading a book called “No Mud, No Lotus” by Thich Nhat Hanh, and he suggests “embracing” your suffering and really allowing yourself to feel grief. Because ignoring your pain and not letting yourself feel sad suppresses those feelings and can make it harder to move on. It’s like when someone tells you “oh, but it could be worse.” Bullshit, tinnitus is terrible, and you have every right to be sad/angry/whatever. But also, he emphasizes to not get caught up in sadness and let it define you. If you find yourself in a bad mood, notice those feelings, but also don’t get hung up on them.

Of course, I struggle with massive depression these days so I don’t practice what I preach, but I hope this was helpful for you. Sorry if I got ramble-y

 

Yup, it's been a real long time I think it was 1996. Smashing Pumpkins at the Hartford Civic Center on the Mellon collie tour.

I'm also a musician. I don't do anything loud anymore though. I play my music about the same volume as one would listen to their TV.

One of the things I can't believe is how short an amount of time many of you have had tinnitus. It's a long road, with no exits...

It took me years to even find out this had a name back in the 90s. Of course I was a college student and thought it would just go away, never saw doctors and just seemed to not let it bother me somehow. Of course there were always nights or days where I'd say to myself "Man my ears are screaming tonight" only to have it lessen overnight or in a couple of days.

A band mate of mine got it and freaked out... I told him "welcome to the rest of your life" but he had a hard time handling it and I probably should have been more sensitive to his situation. I have always been able to manage it and it's not like I had a mild case.

I feel bad for you all some of you are on here and only had it for a couple of months or years. There has to be more people like me I imagine? Where are they, people who have had tinnitus for 20+ years?

 

I'm 32 and I've always had it. In fact finding out that silence is actually silent for most people was a genuine surprise.