What About Tinnitus Scares You?

[jeffie7]

Wow, if those people had the same list I would hate to see them if they had to deal with debilitating tinnitus. They would all be dead.

Or are you talking about people with other illnesses? If not, I dont get your point, unless you are downplaying the seriousness of severve tinnitus? And if you are, congrats on having mild tinnitus!

I've helped people deal with depression as with many other issues that most people face at some point in their lives, you would find that most of the stuff on your list runs through a lot of people's minds. In the end, it's about the person taking control of their life and not letting their tinnitus, depression, or whatever else might be the issue for X person, to get the best of them. Trust me I'm not trying to down play tinnitus, I'm here for a reason, I've had it since 2003... but there's nothing I can do about it but try to be positive, the more I focus on it the worse it gets, I do believe there will be a cure in the future even if its just a partial cure.

I'm currently dealing with a person who was engaged and his soon to be wife just left him, he was on the edge of offing himself.

I had a cousin shoot himself many years ago and not so long ago an uncle shoot himself, different sides of the family. My uncle did it at home with a shotgun to the head, and his kids came home to it, a 5 year old and a 13 year old. Talk about leaving a good memory behind... that was a mess both room, and mentally for the kids and wife.

The issue isn't so much tinnitus, it's the depression that comes from the tinnitus. Get a hold of it! take control of your life and know that no matter what you hear inside your head, you can still stay healthy, look good, and live a normal life, IF you don't let it win.

I wish you the best with getting past this and if you need anything please speak up on here about it, I signed up to this place just the other day because the support here is amazing!

 

[russiancarl]

The issue isn't so much tinnitus, it's the depression that comes from the tinnitus. Get a hold of it! take control of your life and know that no matter what you hear inside your head, you can still stay healthy, look good, and live a normal life, IF you don't let it win.

I feel like this is so incredibly true. And yet it's so hard to separate the two.

It's like yes we all get depressed and scared of our tinnitus. My list is no different than anyone's here.

But it's a vicious cycle. The tinnitus makes me depressed, the depression makes the tinnitus worse. How can I alleviate the depression if I still have the tinnitus? It's just so hard to take control of the negative feelings and stop them.

I'm also in the camp that it's all about volume. When my T is low I'm happier. When it's louder I'm not. The lower sound is much easier to habituate to even though it's still there pretty much most of the time.

 

[jeffie7]

When I was first told about my issue and that there was no fix. I remember asking for a trash can because I felt sick and told the ent I might throw up.

First year was the hardest. It's so hard to not focus on it. It really bothered me until I said f this and changed my outlook on it.

 

[Grace]

I feel like this is so incredibly true. And yet it's so hard to separate the two.

It's like yes we all get depressed and scared of our tinnitus. My list is no different than anyone's here.

But it's a vicious cycle. The tinnitus makes me depressed, the depression makes the tinnitus worse. How can I alleviate the depression if I still have the tinnitus? It's just so hard to take control of the negative feelings and stop them.

I'm also in the camp that it's all about volume. When my T is low I'm happier. When it's louder I'm not. The lower sound is much easier to habituate to even though it's still there pretty much most of the time.

I agree with everyone mostly, except the fact we have to stop playing music.. So not true. BUT volume of someones T does matter cause if it didnt then why do we want a cure so bad.. For the noise to go away. When your T is at a low moment, you feel happy almost as if the noise is gone. Lower sounds/volume easier to accept get use too.. Loud ones are harder. But then the process could multiply where your use to be loud sound comes your new low sound and it happens all over again. This is why we neeeeeed a cure, to prevent this nasty thing to keep getting worse and mind fuckin us cause thats basically what its doing. Over all we all want low days/gone.. Hopeful will all get that soon. In the meantime, accepting and being hopeful and acting like this is only temporary works ( for me anyways). Helps me accept cause i know it wont be there forever.

 

[TDCC]

My fears is that I been very active all my life and now i have changed everything .Running 5 nand 10 K I love going to Zumba classes and cycling and other classes but since i have T i"m paralized with fear i do not do anything of those things anymore. My Dr. is no help at all, I am so sad that i wont be a great Mom this year for my youngest he is in marching band and we have so much to do. I have 4 grang kids. always been super active mom and grand ma but this t is so very scary. like most of you i have all those fears about my health and not living the way i used so so scary. Sleep scares me the most.

 

[jeffie7]

Have you tried any of those things with ear plugs? I use to wear ear plugs while waiting tables. Custom clear plugs with 7db reducing filters. It took the edge off loud plates and such. I pop the 12db filters in for weddings and go with a foam 33db ear plug for damn near everything else. With motorcycles I do a 33db plug with a silicon style form plug that helps fill in the rest of my outter ear when riding motorcycles it helps slightly with wind noise and I'll take anything I can get for blocking wind noise. Yup I double them up.

P.S stay active. I believe it helps take the edge off. At least that's my opinion.

 

[russiancarl]

My fears is that I been very active all my life and now i have changed everything .Running 5 nand 10 K I love going to Zumba classes and cycling and other classes but since i have T i"m paralized with fear i do not do anything of those things anymore. My Dr. is no help at all, I am so sad that i wont be a great Mom this year for my youngest he is in marching band and we have so much to do. I have 4 grang kids. always been super active mom and grand ma but this t is so very scary. like most of you i have all those fears about my health and not living the way i used so so scary. Sleep scares me the most.

This is so true. It's like your life is taken away from you until you sort it out... which can take years and at that point who knows if you'll be the same person?

I worry about everything now. I was just out at Target after my latest doctors appointment and had some earphones on for my TRT and ran into an old friend. It was awkward. Trying to explain it without looking like an idiot... and that's a person I consider one of my best friends. I've been dodging all of our normal hang outs and everything I used to do and people just don't get it as they say "well, you're lookin pretty good."

It sucks when it stops you from life. I just started the TRT 1.5 weeks ago and I asked the doctor if I should wait for the treatment to start working before getting back into the swing of things and she gave me an emphatic no. Still, hard to follow that advice.

I miss being with my friends. I was supposed to go on vacation 3 months ago before this all started. All of my relationships are on the rocks and just life can be tough some days. I want to exercise but I'm scared it will make my T worse. I want to try to drink coffee again but I'm scared it will make my T worse. Heck, I'm scared of going out with friends and just being around people as I can melt down at a moments notice still.

 

[TDCC]

Jeffi7 thank i bought a bunch of earplugs i keep them everywere.

 

[russiancarl]

As a weird side note, does anyone else feel like their life still sucks even on low T days?

Mine went from being drive me nuts to manageable after seeing the doctor 1.5 weeks ago and starting TRT. It's too fast for it to start working and maybe its some level of stress relief from starting it... I don't know.

I do know I'm not back to baseline but I can get through the day without cracking up now. But I'm still not as happy as I feel I should be. Like part of me is dreading that it's going to come back... like it always does... I don't know how else to describe it.

I feel I should be making the most of this time but I can't get my head to live in the moment and keep worrying about it going back up again.

 

[Nick the Swede]

@russiancarl.

Think you overdo it a lot here. Neither coffee or exercise will make your T to stay high even IF there is a temporary spike. My noise induced T don´t react at all to coffee. Alcohol affects it a bit but always goes down again. Exercise will spike mine for a few hours after but goes down again. It´s not worth giving up on all these things. Long distance running was a key for me to get grips of T.

 

[russiancarl]

@Nick the Swede

I completely agree with you but I also think it's one of those things that comes in stages. I'm not yet willing to risk spiking my ringing even if it is temporary. No need to add fire to fire until I'm ready.

It does suck because I don't think coffee is a trigger... I had tinnitus for 14 years that was mild and it never bothered it. But who knows now. Better to just go without...

I'd really like to start exercising again too. I never felt better than when I was working out 5-6 days a week about 1.5 years ago before life turned to crap. But when the doctor was all "oh yeah that increases bloodflow might make the ringing worse." I'm all "well crap can't do that for a while..."

Someday.... someday soon I hope... It'll loose it's grip on me and all of us.

 

[Nick the Swede]

Never funny to have a spike even if it just last hours. But the benefits from exercise outweights the eventual short term spike. When my anxiety attacked in my early days i had to choose from pop a pill or put on my shoes and hit the roads. I felt like Forrest Gump running away from my fears, it really helped me cope in the beginning.

 

[Steve]

As a weird side note, does anyone else feel like their life still sucks even on low T days?

Mine went from being drive me nuts to manageable after seeing the doctor 1.5 weeks ago and starting TRT. It's too fast for it to start working and maybe its some level of stress relief from starting it... I don't know.

I do know I'm not back to baseline but I can get through the day without cracking up now. But I'm still not as happy as I feel I should be. Like part of me is dreading that it's going to come back... like it always does... I don't know how else to describe it.

I feel I should be making the most of this time but I can't get my head to live in the moment and keep worrying about it going back up again.

Hi Carl,

You're going through an anxiety that now where it feels like you're making progress, the thought of being back where you started is scary. Totally natural really. Any intervention at all makes you focus on it more, you'll be constantly checking to see if it seems higher or lower, have you had a sustained decrease, what level do you have the noise set to etc...

I exercise 4-5 days a week (weights), it gets worse sometimes but goes down again. I feel good for being fit, much better than doing nothing. The bloodflow thing is very very temporary, maybe lasts 20m or so for me if it happens. I have an issue with tightness in my neck that makes it worse but massages help that, I'd rather be fit and have a bit of a spike than be out of shape.

I don't remember the quote, think it may have been the Buddha, but it goes along the lines of.... Every night you go to sleep and in the morning you are reborn (there's more to it but that's the gist of it).

You can choose that rebirth to either carry on in the same ways you've always known, with the same anxiety, or you can look at things differently. When you wake, try and forget all that you know and have learnt through experience. All you attach to the tinnitus now is negativity, you'll probably never view it as anywhere near positive but try to treat it with indifference. Spend the next day you wake as a different person, one that understands there is a noise but knows that no matter how you react to it, what it sounds like or what volume it seems to be, it will still be there. So there is absolutely no point in giving it any reaction at all, just use the masking noise and whatever else you've been given to help and let it happen. Focus your mind for that day on things you want to do, want to achieve, something that really matters to you.

That might help you or might not (helps me unless I have a particularly bad day), it sounds like you need to find something extra to partner the TRT, or just time to lose the reaction and expectation of things getting worse. The important thing is to get your life back, to find a way to do the things you want to do.

 

[russiancarl]

@Steve

Thanks for all the useful advice and tips. I do think you're right that it's better to exercise and be fit instead of letting the T control you. Actually knowing it is only going to last 20 minutes or so is a huge relief.

It's so odd. I've had tinnitus forever and nothing ever affected it until this spike or what not came on 3 months ago. And yes I am so fearful of it returning as it was here for a month, gone for a month, back for a month, now it's on the outs again... there is no logic to this beast!

I need to have faith that if my T wasn't affected by caffeine, salt, or exercise before then it shouldn't be now. Though I do believe I'll stay away from the alcohol. That was always one of my biggest triggers... my ears would always ring more for a day and a half after.

Sure is hard to be logical when you're too consumed by emotions eh.

 

[Steve]

@Steve

Thanks for all the useful advice and tips. I do think you're right that it's better to exercise and be fit instead of letting the T control you. Actually knowing it is only going to last 20 minutes or so is a huge relief.

It's so odd. I've had tinnitus forever and nothing ever affected it until this spike or what not came on 3 months ago. And yes I am so fearful of it returning as it was here for a month, gone for a month, back for a month, now it's on the outs again... there is no logic to this beast!

I need to have faith that if my T wasn't affected by caffeine, salt, or exercise before then it shouldn't be now. Though I do believe I'll stay away from the alcohol. That was always one of my biggest triggers... my ears would always ring more for a day and a half after.

Sure is hard to be logical when you're too consumed by emotions eh.

Yep, it sure is. I try and approach everything logically, with reason, understand what is happening and nullify the response. I don't succeed, but I'm better at dealing with things every time I try. We are so emotionally charged as beings, whether that be anxiety, anger, love, passion, it's a struggle.

Alcohol is definitely a trigger for me, I alternate between drinking too often and being dry for months. I just love the feeling of purity when you've not drank for over a month, like you have your body and mind clear. It's only then that you truly realise how much alcohol actually stops you from achieving, how much it clouds your mind.

We're all different, so caffeine or alcohol will have an effect on one but not another. You have to tread your own path and find out for yourself what helps or hinders you. Studies are useful, but just because the majority report bad effects doesn't mean you are one of them, you can be in the 20% that reported positive effects. They aren't to be treated as an absolute, just a representation of a number of people.

To veer slightly back on topic (and related to some of the above), I would say my fear is loss of control. To be dictated to by tinnitus, let it rule my life, tell me what I can and can't do. I won't let it, I refuse to. I know that I have to adapt and change a few things, but things change anyway, routine is boring.

 

[Martin69]

This is so true. It's like your life is taken away from you until you sort it out... which can take years and at that point who knows if you'll be the same person?

I worry about everything now. I was just out at Target after my latest doctors appointment and had some earphones on for my TRT and ran into an old friend. It was awkward. Trying to explain it without looking like an idiot... and that's a person I consider one of my best friends. I've been dodging all of our normal hang outs and everything I used to do and people just don't get it as they say "well, you're lookin pretty good."

It sucks when it stops you from life. I just started the TRT 1.5 weeks ago and I asked the doctor if I should wait for the treatment to start working before getting back into the swing of things and she gave me an emphatic no. Still, hard to follow that advice.

I miss being with my friends. I was supposed to go on vacation 3 months ago before this all started. All of my relationships are on the rocks and just life can be tough some days. I want to exercise but I'm scared it will make my T worse. I want to try to drink coffee again but I'm scared it will make my T worse. Heck, I'm scared of going out with friends and just being around people as I can melt down at a moments notice still.

I drink and eat the same as before T. Maybe a little bit more sweet stuff calming my nerves. My T does not react to this. I drink coffee without caffeine, but I drink Coke with caffeine. My T stays the same.

I have decided to continue doing three things:
- Working. Good for me that I can work from home. This makes things easier. I made adjustments with my colleagues and boss that I do not work on the real difficult stuff (I am tech support engineer).
- Doing football training with my team. Have good colleagues there who help. But I love being there with those young kids and teaching them. This is my hobby.
- Doing things with my family (going out for dinner/lunch, playing with my kids, being outdoors, gardening, computer games).

All three things are damn hard. I have to mask a lot with cricket sounds. But I stay in the situation.
I see no other way getting used to it and habituate (if this will ever happen at all).

What scares me? Nothing to add from my side. I can copy and paste most of the stuff already written.
I have two big fears:

1. That habituation is a myth and I have to live the rest of my life like I do now with anxiety, depression and a dog whistle in my head.
2. As a result, I will take my life leaving a lovely wife and kids behind. I think that I can manage T on the long run. But I cannot say what happens when another illness joins the game. Too much suffering is too much suffering.

I don't think about this too much since it is too negative. So I am happy that I can go through my day more or less at the moment. And I hope, time will be a healer.

Prayers,
Martin

 

[Marlene]

Russian I'm the opposite,if mine are low like today,not good day,when to high ,not good day for most part,it can drop,if lucky,but if low no way can or does it want to come up,to where I can to some extent ignore it.Love for someone to tell me how I can raise it up from low,it can and does raise up anxiety.
Then I'm back into meditating couple times a day,for that,and so it goes on and on .Hardest day ever.
People who don't have T haven't got a clue,when I say don't want to talk on phone,due to bad ear days.they don't have to live with this,lucky old them,but could be them on any given day.Chins up everyone.

 

[jeffie7]

@Nick the Swede

I'd really like to start exercising again too. I never felt better than when I was working out 5-6 days a week about 1.5 years ago before life turned to crap. But when the doctor was all "oh yeah that increases bloodflow might make the ringing worse." I'm all "well crap can't do that for a while..."

Someday.... someday soon I hope... It'll loose it's grip on me and all of us.

I've been lifting weights nonstop 4 times a week for 4? years, do martial arts, I run, I bike around the neighborhood with my son, and I mountain bike. Mountain biking is intense, gets me to the point of wanting to puke if I really push it, at times its as if I just took a shower from the amount of sweat I put off when pushing it. I'm a very active person and if anything I really do believe it has helped. Even my ENT pointed out 10+ years ago, stay active, and exercise.

Exercising will help lower your BP, or keep it in check if it's not an issue, that alone IMO is worth it.

I see a common theme in this thread, newer people with T, and people being sad because they can't do the things they did before. DO NOT STOP DOING WHAT YOU LOVE DOING. By doing that or thinking about all the things you for some reason think you can't do anymore, you are making it worse by causing it to be an even bigger part of your day to day life. "I'd like to do X but, my T, I'd like to do Y but my T." It's a bad mindset and causes you to focus on your issues rather than your life and what you enjoy doing.

Bringing yourself down, causes your T to go up. It's a pretty simple system of how that works, the more depressed you are the more you focus on your issues. The more busy you stay doing the things you enjoy, the less you'll notice it.

 

[jeffie7]

Hardest day ever. People who don't have T haven't got a clue,when I say don't want to talk on phone,due to bad ear days.they don't have to live with this,lucky old them,but could be them on any given day.Chins up everyone.

People always think I have hearing aids in, I explain that it's ear plugs and they just give me this look like I'm crazy.

Doesn't matter if they understand, most people are blind to many things in life. If someone shows enough interest, I'll explain why. People just think I'm weird, Thankfully, I just don't care how people view me.

Try looking into musicians plugs, I've used mine while on the phone with good results. It takes that edge off.

P.S if you get some. Remove the little plastic piece you grab to remove them. It will hit the ear piece on the phone and causes your ear to be uncomfortable when using the phone. Makes it harder to get them out without the handle but you get use to doing it without it.

 

[Mark McDill]

All
I just need to put in my two cents (about the fears). I believe this thread productive in that it diffuses a lot of alienation (we can all relate and not feel so isolated) -- I think that is a good thing.

But I just wanted to chime in because based on my experience I believe that although the reality is that our brand of T does interfere with career and how we treat others (and how we view the world for that matter); it's not that bad (post habituation).

It is something we take into account and adjust for (that's for sure); but there is no need to project great fear into the future (I'm not saying anyone here is projecting great fear into the future). I'm just making a point because fear and anxiety are danger zones for T sufferers and I would like to 'shine a light' if I could.

I did, in fact, have to take into account the affect it had; but in the end, the final accounting wasn't nearly as bad as I thought (the fear is so easily aggrandized). The fear and anxiety only served to increase my T (it's a danger zone -- proceed with caution and purpose). Furthermore, it drove me to figure out some of the harder questions -- is it my T that is annoying me beyond all reason or is it the current situation and, more importantly, how I am reacting to it. Oft times the answer was a combination of things but it sure helped me determine the weighted factors and get that fear/anxiety in perspective. In the end, it caused me to take inventory and adjust as needed.

All I am trying to say is there is no need to do as I did and project big fears into the future; that only serves to muddy the waters (right now) and delay habituation.

Until then...prayers!

Mark

 

[MarkD]

What scares me most about T is that it could get worse and debilitating.

 

[washashore]

It getting worse.

If I was told that it would stay at the same level for the rest of my life, I would take that deal, even though I can hear it over everything as it is.

 

[meeruf]

My biggest fear is that my T will be as loud as it was in the beginning, right after I had the ear trauma. The volume was just mental. I don't know how I would handle that, if I had that volume 24/7.

 

[dan]

My fear is soon blowing my brains out.

 

[Sen]

Tinnitus/hyperacusis doesn't scare me, it just makes me so depressed and useless that I hate myself and then I start to wonder how much better off the world would be without me being a burden on it.

I literally can't think of a single thing or person that benefits from my existence.

 

[RicoS]

Tinnitus/hyperacusis doesn't scare me, it just makes me so depressed and useless that I hate myself and then I start to wonder how much better off the world would be without me being a burden on it.

I literally can't think of a single thing or person that benefits from my existence.

Your family , friends or a pet perhaps.... if you feel useless try to help somebody with other issues... make your life worthwhile no matter what....

 

[LadyDi]

Tinnitus/hyperacusis doesn't scare me, it just makes me so depressed and useless that I hate myself and then I start to wonder how much better off the world would be without me being a burden on it.

I literally can't think of a single thing or person that benefits from my existence.

We all benefit from your existence. We all are interconnected. Each of us irreplacable. You would be surprised at how many people would be affected by you absence. Including here at TT.

And how are you a "burden"? My guess is that is your tinnitus head talking, not those around you who care. I agree with @RicoS. Reconnect with life. Reach out to those you know care but are too freaked out to speak up. Help others who also feel abandoned (that might include four-legged others, btw).

Finally, if you truly feel life has no meaning and would rather check out: get professional help. In some cases, these feelings are due to a tipping in brain chemistry and dont reflect how you really feel about living. Just my personal view. But as much as being a human being on planet earth can suck: it's also a hell of a ride. As poet ee Cummings said: thanks to that which is infinite. That which is yes.

 

[Lisa88]

I'm just scared that I'm only 19, I'm a drummer and guitar player, with 2 years into a Video and Film degree with two years left, and I've completely lost passion for anything audio/visual. How am I going to live with this for the rest of my life.

Often, when we first get t, hyperacusis (sound sensitivity) plays a part, and also aggravates our t. This is no time to make decisions about the rest of your life and career. You will find a way in time to continue to follow your passion. Some in the first year make choices to go acoustic. But in time, they go back to doing exactly what they love to do the way they did it before, just with increased protection. The hyperacusis and fear will fade, and your heart and passion will prevail. Just takes a little time. I have known many musicians who get back to music. And in doing so, their t fades into the background too. Lastly, if you look up a list of those with t, you will find many many musicians including Streisand, Bono, Sting, Clapton, WillIAm ... the list is endless.

 

[Ken219]

scares me? There might be a cure and I can't afford it. Really, I have this beast 24 years been through a few relapses. I am currently in one now. When I habituate life is good. Tinnitus is unpredictable I try not to be scared.

 

[Andrew_89]

For me it's the pure fear of being this miserable for the rest of my life
It has been about 7 months for me maybe 8 know i got tinnitus from antibiotics and I guess it's the lack of knowing when the damage is done from
Antibiotics and it's out of your system does the damage continue or does it plateau . I have only playing a handful of gigs since it started with protection. but my ears have gotten a lot worse since it first started it's so weird. It has gone from a little buzz in my right ear to
Both ears and now it's just gotten a lot worse