Be Honest. Do You Still Enjoy Life?

If you are ever in the Miami/Ft Lauderdale area, I would love to meet up and chat. I wish there were local support groups here with Miami being such a big population area but I haven't found any. It would be nice to meet people that know what you're going through.

 

I can totally relate. My tinnitus changed from mild to 24/7 in the last 6 months of my studies. The final worsening happened only days after graduating. I know the feeling when suddenly all the hard work one has done to get to this point becomes suddenly meaningless.

 

I would be seriously distraught if it were certain that my current state is permanent. I live off the hope that I can get my previous health back.

Either way it will have changed my life. I can't unrecognize the fact that my health and well-being can seriously deteriorate from one day to the next, for no discernible reason whatsoever.

 

I used to, and for 7 years I thought I could beat this. But now I've developed a new sound that is driving me crazy. I have even thought about suicide and my wife knows it. She's being strong for both of us, but I can't take it anymore. I'm scared, there are no answers and frankly reading about this crap more and more isn't helping.

So no, despite having two lovely children, a wonderful wife, and what others might think is a good life, I don't enjoy my life anymore.

There are no support groups near me, no one to talk to, no one in my family understands the mental stress this is putting on me. Even the rain, which used to calm me, bothers my ear as it has developed a clicky sound that reacts to nearly everything now.

I just want it to end.

 

Clicky sound, interesting. That's not a common one and reacts to nearly everything, you mean it overlaps other sounds and other sounds it competes with? I have been researching this more and more. It's called Dysacusis and more often than not it resolves but it takes 1-3 months, sometimes a bit longer. The tone itself might stay but it will stop reacting to other sounds. I envy you that you have a family and some sort of support. I am laid off, single, and alone in a room all day every day dealing with the same thing. I am determined to make it through though.

 

Not competes, on top of. So the tinnitus and then this sound. I thought it was an infection because I keep getting clear liquid in my ears at night. I can take a Q-tip (I know) and put it in my ear and when I pull it out, the Q-tip is completely wet.

It's not Dysacusis, as that distorts the sounds as I'm told. This just clicks. I thought it could be ETD, but my ENT refuses to believe me and says the pressure tests are fine.

 

The tone is only there when there are stimuli. So if that ever goes away, I'd be happier. Makes me sad that the medical world is still very much behind on a problem that affects the entire world. With more and more people suffering from this with each day.

 

Have you heard about different kinds of myoclonus? Either in the middle ear or palatal myoclonus?

 

Only here, my ENT hasn't even mentioned it. Another personal hell with no treatment? Who would test for this? My GP? ENT? Lord I hope it's not the latter, they didn't even mention it.

All they want to do now is get me to come in for an allergy test.

 

I've had tinnitus for 50 years, since I was a kid. I can't remember a day without ringing. Then in 2008 I suddenly went deaf in my left ear. Brain tumor. Piled on 3 more noises to accompany the two tones I already had my whole life. These new ones are really "loud." And my deaf, left ear ONLY "hears" tinnitus. Nothing drowns it out. But because I've lived my whole life with tinnitus, it's nothing new to me, it's been my normal for a half a century. When I was diagnosed with this brain tumor, I took on a lot more symptoms than just more noise. So, yeah, I just said to myself, "Oh, sure, that figures; more tinnitus, too. Why not?" But I still go fly my Powered Paraglider and ride my WaveRunner, and vacation travel to enjoy however much life I have left. Tomorrow, I may see the most amazing sunset I've ever seen flying in the open air at 10,000 ft above the beach. Tinnitus be damned.

 

I try.

 

Ahhhhhhhhh, well then, hopefully it's just your jaw pinching a nerve. Still best to check that air bone gap.

 

ENTs, I guess. Try to ask them about it. It's not that common so maybe yours didn't think about it as a possibility.

Some people have results with Carbamazepine, Botox or surgery. Not necessarily is this your cause, but maybe worth asking about it.

 

My beautiful daughter is the only reason I am still alive. A wise social worker once told me "a mother who is there 20 percent of the time is still more than a dead mother".

I keep telling this to myself. And keep fighting, day by day.
So, I am enjoying life? Not at all, but I have a duty.

 

You're an inspiration. I don't know how you do it. Me, I can't look at my wife and kids anymore without breaking down. I wish I knew what changed, it wasn't this bad in the past 7 years. It wasn't this bad 5 months ago.

 

Thanks for that. I guess it's not as difficult for me because it's always been there. But I think I can relate as I can't imagine something like constantly seeing eyeball flares all the time ( I forget what that's called - diabetics with retinopathy sometimes get it). I think that would drive me nuts. But some days, yes, my tinnitus is particularly difficult, too. It takes a lawnmower, or flying my paraglider to mask mine. But otherwise I try to ignore it with the mindset of, "Well, what can you do?" Like if you hear a construction crew jackhammering a hole in your street, you just take it, right? Ain't like you can yell, "Hey, jackhammer dude, knock it off!"

 

You’re an inspiration to me as well.

 

I can totally relate to your post! Our children keep us going for sure in our bad times!

I’m sure you are a wonderful mum xx

 

I'm a step-father, and the only thing that keeps me going is my daughter already lost her biological father. I cannot cause her another loss.

 

Yes I truly do. That doesn't mean I enjoy every single moment, or that some moments aren't real shitty, but I do have at least one moment every day (usually) that brings me either 1) joy or 2) meaning. Oftentimes when I can't find joy, I search for meaning instead.

 

Yeah... I mean, there's an endless list of experiences I wanted to have in my life which I now know I certainly never will... but then this isn't a hard truth only tinnitus sufferers have to come to terms with.

Life in general is expectation vs reality, with reality rarely not coming out on top.

At the end of the day, it might be little to no comfort, but for every cancer scare that's come back negative and near death experience I've survived, I've simply been grateful to be alive and have the opportunity to live a modicum of the life I've always wanted, and perhaps see a workable treatment some day.

 

I still enjoy food, outdoor activities, watching TV series, listening to music, driving my car, and some other things.

But due to tinnitus I have stopped reading books, and engaging in any kind of intellectual activity is painful. I no longer can enjoy the sound of silence, and this for an introspective person is pure torture. I'm still around just in case a cure comes out in the next few years, without that hope I would've topped myself already.

 

This thread will obviously have lots of different answers depending on how severe your tinnitus is, if you get any treament/medication that helps or not etc.

For me, thankfully yes, I enjoy life just as much as I did before my tinnitus.

 

Have you tried audio books? I know it's not the same thing as reading, but still a decent substitute.

 

Good one, will give them a go.

 

You're a good man! I’m sure she brings you lots of joy and there will be many good times ahead! We got to keep hold of the hope. Xxx

 

Hold on to that hope. It’s a powerful and wonderful thing.

 

I too stopped reading books and doing intellectual things. But with time the tinnitus faded into the background of my awareness and I now again enjoy reading.

I have followed courses and studied and did exams without failing once and also being best of the class. All with tinnitus present, but not preventing me from concentrating. As a matter of fact, when I now read in bed before sleeping, my tinnitus totally fades out of my consciousness. Even on the loudest days.

 

I too had these exact same thoughts in my first year of having tinnitus. Those thoughts are long gone now. I now think the opposite. I am now much more confident that I will be able to deal with whatever difficult events the future will bring. I am mentally stronger than ever.

 

I haven't posted in a bit, mainly because I've just been dealing. Some days have been amazing, others not so amazing. Like today, started off fine, had an argument with my daughter and then my tinnitus started making new sounds. Hopefully, it's temporary and if not, then I'll cope with it.

I recently had my mother pass, and before she did we had a talk. She told me to stop worrying about the things I can't change and just move on with my life. Put faith in God (not so much me as I lost my faith years ago) and let it go. So that's what I've been doing. It's been a battle but one I've been winning (mostly).

So, that's why I haven't been around. Tinnitus is there, the clicking is there, but I'm coping and living my life.

Oh, and it was confirmed that I do have Middle Ear Myoclonus.