What About Tinnitus Scares You?

[Telis]

I would like to know if I'm on the same page as most people here with tinnitus....Or if maybe I have a different way of processing all of this.

Please let me know your thoughts

 

[cullenbohannon]

For me it was the thought that i would never be able to realize my dreams and goals. The thought that it would be with me forever and as i get older it will only get louder. The thought that all my friends will go out and i would be in my house alone, loss of relationships. Fear of sudden noise exposures making my t worse. Fear of turfing into some of the horror stories i have read. That i would go crazy listening to this loud screech.

None of these things are on my mind to much these days.

I would like to know if I'm on the same page as most people here with tinnitus....Or if maybe I have a different way of processing all of this.

Please let me know your thoughts

 

[James]

I'd wouldn't think I'm scared, but i don't feel very positive about my T.
It bothers me every day. Who every said it's all about volume, I tend to agree.
I put up with it, tolerate it, live with it. Constant pulsing.


I think-

• There will never be a cure,
• This will lead to other health problems,
• I will die early,
• My life is being effected, slowly, in a negative way.
• Although there are much, Much, worse ailments in life - it's not good.

 

[jeffie7]

Getting worse with age isn't a happy thought but I do believe they will have ways of reducing the level or ways of masking it without using noise at some point in the future. Maybe not in the near future but look at medical gains in the last 20 years. Just think where we will be in another 20 years. I have hope.

 

[Telis]

For me...

-being useless in general
-my health (premature death)
-suffering like this for another 20-40 years.
-looking like shit (always took pride in myself)
-not being able to enjoy what I once did.
-people not wanting to be around me because I'm irritated and miserable (isolation)
-loosing my mind eventually
-having to end my life because I can't take it anymore
-relying on drugs or alcohol just to get out of bed.
-letting down family
-being scared to be this person that I have become, and forgetting who I once was.
-not being part of life ever again...just kind of fading away.


Sorry about the depressing thread. Someone asked me today why I was scared, this definitely got me thinking. As I was pondering this thought, I was kind of curious to see if we were all somewhat similar in our fears.

Telis

 

[jeffie7]

A lot of people have that same list or similar. Regardless of tinnitus.

Life in general has lots of ups and downs. Main thing is enjoying the ups and not focusing so much on the downs.

 

[Teri]

Actually, the T isn't what scares me. It is the Meneires Diagnosis.

 

[Mark McDill]

I would like to know if I'm on the same page as most people here with tinnitus....Or if maybe I have a different way of processing all of this.

Please let me know your thoughts

1. 1-3 months
the noise itself
the 'no cure' issue
how it would effect my family and career
the overwhelming amount of information/dis-information about tinnitus
the SLEEPING issue!

2. 3-10 months
set backs
spikes (and wondering if I 'achieved' a new baseline)
not understanding any of the components and the control I have (positive/negative effects of my actions)
having my hopes dashed (again and again)

3. 11-present
basically habituated (little to no emotional reaction to it, and I sleep like a baby)
one of my fears came true (T is a lot worse this summer -- new baseline) -- so it is no longer a fear

 

[valeri]

What scares me the most is the uncertancy and unpredictability of the whole situation.
I just don't think one is EVER home free with this bs
Even if one habituates to a degree there are lot of things out there just waiting to take you back to square one.
For me this is the reality rather than catastrophic or unrealistic thinking that needs to be changed by CBT.
Somebody please prove me wrong!

 

[Mark McDill]

For me...

-being useless in general
-my health (premature death)
-suffering like this for another 20-40 years.
-looking like shit (always took pride in myself)
-not being able to enjoy what I once did.
-people not wanting to be around me because I'm irritated and miserable (isolation)
-loosing my mind eventually
-having to end my life because I can't take it anymore
-relying on drugs or alcohol just to get out of bed.
-letting down family
-being scared to be this person that I have become, and forgetting who I once was.
-not being part of life ever again...just kind of fading away.


Sorry about the depressing thread. Someone asked me today why I was scared, this definitely got me thinking. As I was pondering this thought, I was kind of curious to see if we were all somewhat similar in our fears.

Telis

Telis
Totally understand where you are coming from; no worries about a 'depressing thread' (it's not depressing and this is the appropriate place to 'get it out').

T is not easy (under statement of the century!); it took me to my knees (2x nervous breakdowns). You have T and it appears you may have H; so if you are a bit punchy these days it is completely understandable (by us).

But this is winnable!

When people notice you are scared it is likely because your anxiety is through the roof (sorry if I'm captain obvious); objective number one is to tackle that anxiety -- bring that down to manageable levels and you will find a whole new outlook better suited for dealing with this 'stuff'. Furthermore, anxiety directly effects your T and so goes a negative spiral (T drives anxiety, anxiety drives T). But if something spirals down, it can spiral up.

I found that acceptance (of my situation) was the antibiotic for my anxiety; it was THE hardest thing for me to do (completely stand down on the inside -- stop fighting it and start accepting it). I'm very competitive (you sound like a competitor too) and it is nigh on impossible for us to not fight (even when we tell others we are not fighting, we are still scheming to win on the inside -- we are fighters). But I finally came to realize I had to simply accept it (not gladly, not easily, just accept it). Completely stand down on the inside -- I hated it. I have to admit, from that time on I went into a moderate to severe depression for quite some time (like I had given up). But it was the best (and right) move because after a while I discovered I had taken the worst it had to offer and that I was still standing there -- it could not defeat me. Then I started getting motivated to step out a little bit more (T and all) -- then I started feeling good again, I took its worst (best) and was able to start taking back my life (in spite of T). I became more objective (less anxious) and my T settled down; I started to spiral up.

It was a process (that sucked beyond all reason) and I would not want to go through it ever again. But I came out ok on the other side; and my friends and family were still there (cause they are friends and family -- so take that load off your shoulders). Furthermore, you have found somewhat of an extended family out here -- you are good with us.

Not sure if this helps; there's no taking away the pain of the process (oh that there were) but deep down inside I knew I was ok even during the pain of the process. I recall being somewhat of a catatonic just going through the motions (not even sure how I completed a days work).

But, I'm back to cranky ole' self again and I believe you will be too.

When and how this takes place is a very personal journey (yours is yours and mine is mine); no time-frame, no hard and fast rules -- it is uber personal.

Until then...prayers!!

Mark

 

[Grace]

Everything everyone said. ( there neeeedss to be an effective treatment/cure so it ends all these issues for everyone) i fear autifony will fail...but i have hope too.

 

[MichaelM]

Personally i think:
-will I be this tired for the rest of my life. Fatique is something words cannot describe.
-what was silence like (some good 20 years ago since i heard it last time)
-will i eventually lose my mind someday
-can i one day be honestly happy and enjoy things
-can it get even worse than this. It has, so far. Even this month some changes towards worse
-the others might actually think i am insane
-one of the scariest things is I can never be sure of my T for the next day. Could be bad, good be tolerable or could be giving me total agony and pain. This vary very, very much. That´s freaking Meniere´s!

-will i start drinking again in order to get at least a moment without thinking like this
-how can one ear cause so much problems for a one man.How on Earth is this possible.
-the cure will never be found, absolutely never.... for T or Meniere´s disease
-i know there a lot of religious people around, but when i see "pray/thank God/Name your favourite creature and the disease will go away"-liners it makes me angry. I am sorry about this.
-i feel even the doctors dont really believe this exist. This is somehow non-science thing: cannot be seen or measured and this doesnt kill... so does this exist, actually.
-

 

[Zimichael]

@Telis...(Hell I STILL don't know how to get the darn quote thing to work right!!! - so cut and paste...)

Yeah I know this list of yours....
-being useless in general
-my health (premature death)
-suffering like this for another 20-40 years.
-looking like shit (always took pride in myself)
-not being able to enjoy what I once did.
-people not wanting to be around me because I'm irritated and miserable (isolation)
-loosing my mind eventually
-having to end my life because I can't take it anymore
-relying on drugs or alcohol just to get out of bed.
-letting down family
-being scared to be this person that I have become, and forgetting who I once was.
-not being part of life ever again...just kind of fading away.
.....intimately.

Not sure I want to add any words of wisdom really as somehow as long as option 8. doesn't happen (the "Exit" strategy) we come to cope...or something.
The key too is how "reactive" your T is. If it's not reactive it's surprising how much one can adapt over a number of years, though folks with no H. or reactivity don't quite appreciate the difficulties and differences of this v. 'normal T'.

I tell you though, with all this K channels stuff and Autifony on the horizon, I seriously think that shit is happening that has never happened before re a cure or big time relief for T. And I have had a long wait before I have ever dared to say that, believe me.

Hopefully you have some shoulder or shoulders to lean on as that is the hardest part not to have IMHO, but as has been pointed out elsewhere, surviving this big time T stuff alone is not for wimps. Don't under-estimate your strength and power by being here still.

Take care and hang in there. Best... Zimichael

 

[Denny]

Disabling to the point it affects work and family life
Not being able to live a complete life
Giving up things which I enjoy where loud noises maybe involved
Less social life
Adjust life around the tinnitus- diet , sleep etc...
Slow deterioration in health physical and mental
The fact that it is always there and there are no cures
Worsening symptoms -volume ,sleep ,unilateral to bilateral
Giving up dreams for the future
Spikes coinciding at the worst times -heavy work load etc
Possibility of being disabled and would not qualify for government assistance
Worrying about how to get sleep and how t will be upon waking
Losing total control since you have absolutely no control over t
Abandonment by family and friends
Changing into a person I do not recognize
Becoming dependant on a drug or alcohol for temporary relief
Not being able to work having to spend the days miserable listening to the bs
Having to take a medication which worsens t
Bad health from worrying about t and ignoring other health issues
Tinnitus worsening to the point of becoming completely deaf
Feeling it is a punishment for something unknown-sin, karma?
Becoming unproductive and useless
Worsening in catastrophic thinking
Seeing improvements and success stories on the forum from members here
Much shorter time than me and wondering what the hell is happening with my situation?
Feeling handicapped

 

[theekarwash]

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.

 

[RicoS]

- Loosing passion for everything
- The sound
- Feeling tired
- Fullness of ears sometimes
- Never to hear silence again
- The ...WHY ME? feeling
- Depression
- Isolation
- The feeling of not realy being here anymore
- Do not want to think about what the future holds for me ....
- the loud days I realy do not like.... the softer days are ok to get by

I have good days... but a lot of these feeling cross my mind on daily basis. I sleep ok though.
But to enjoy silence again is what I realy think of a lot...... never knew Tinnitus excisted I allways thought the deaf or ear damage was only that you could hear less over time....I never in my wildest dreams could think it can add sounds too.

 

[calin]

I don't get a "scare" sense, but frustrating sense I guess. I don't want the tinnitus to go away and then come back sometime in the future! Once it is gone, then I want to it be a thing of the past.

 

[Mpt]

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.

I hate to say this but you probably need to quit making music

 

[theekarwash]

I hate to say this but you probably need to quit making music

Playing acoustic guitar as of late.

 

[Sound Wave]

T getting worse is probably my #1 fear. Especially because last two weeks it has...

 

[Steve]

Playing acoustic guitar as of late.

I disagree with Mpt.

You can carry on with music as long as you take precautions and maybe change style a bit - like you've done moving onto acoustic guitar. I still make music, play classical guitar when I pick it up, mostly production on the computer. I know what makes me better and what makes me worse. You'll find a music space that lets you continue to love playing.

 

[Mpt]

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga.5074/

 

[LadyDi]

I am very glad you posted this thread, @Telis. I don't find it depressing. It has made me think a lot about my life with tinnitus, and has helped me know those who have responded here better. I think it gets to one of the core reasons that tinnitus is so difficult: it scares us. We all have different reasons yet many of us fear the same things.

In the beginning of my T, I kept a diary that included a list of reasons my tinnitus bothered me. When I looked back on it after reading this post, I realized what I really was recording were things I was afraid of. Many of them already have been written here.

I'm not afraid of dying, given I already almost died 15 years ago, from a cerebral hemorrhage. So I figure all the time I received since then is gravy.

And most of the things on my original list I have been able to scratch off over the past 14 months. I am not afraid of them any more.

But the thing that continues to haunt me, and I think continues to block my acceptance: I can't control my tinnitus in any way. And it is with me, 24 hours a day. There is no way I can turn it off, or even turn it down, for a second.

Yes, I have mostly good days now, and I know how to take care of myself (protect my ears, get plenty of sleep, meditate to dampen anxiety) to keep good days coming. But I have no guarantees. That's why even though my tinnitus is manageable (for now), I look forward to better treatments that will give us more control. Hopefully.

 

[LadyDi]

I hate to say this but you probably need to quit making music

With all due respect, I disagree with @Mpt on this point too, @theekarwash. You may need to make music in a different way. But you still can do it -- and maybe find new ways to express yourself that you will enjoy even more.

I already have written about this before, but: I had to stop singing with a large choral group I belonged to last year. It was just too much sound and drove my T crazy. I am going to try again, beginning next month, but my guess is its not going to work.

However: In the meantime, I was able to join a much smaller group, about 20 people. I have so much fun with this group and have learned so much more in a few months about vocal techniques, even though we sang much harder music in the larger group. My new director is energetic, incredibly kind, very talented. And because we are so much smaller, each singer gets more individual attention. I really have grown through this experience. You can head in new directions, too. There are plenty of musicians with tinnitus out there making amazing music.

 

[object16]

my fears are pretty much the same as your Telis: gradually seems to get worse with time, although it gets better, never back to the same as before. I used to be able to enjoy nice DVD with music, not any more. any loud noise such as fire truck ambulance harley davidson cars with bad muffler buses etc all create a spike, gradually get more and more isolated, having to end it all prematurely etc., my fears are just the same as yours. in my case, the tinnitus made me less able to concentrate at work, so i started messing up, and lost my job, so have to go on early retirement - and the list goes on.

 

[Telis]

Thanks for all the responses...Sounds like I'm definitely not alone in my fears. It's not just the noise that is bothersome, it is the catastrophic thinking that goes along with it...and justifiably so. These fears are not what ifs (based solely on fear) they are legit reasons to be terrified.

I am scared to death, and no amount of drugs or positive thinking can make me feel otherwise (although I'm only about 9 months in)....Hope this all changes.

This is a weird condition...even when I feel calm, I have this monkey on my back...something that is eating away at me, disturbing my sense of well being. I am a strong person (mentally very tough) and this shit brings me to my knees every day.

I hope for a cure someday soon (although not overly optimistic) we can all come back and shoot the shit about sports or something! And maybe laugh about the days of tinnitus!!!

Thanks again everyone for sharing.

Telis

 

[derpytia]

My fears are that it will interfere with my career and how I treat people. I always try to do my best when I work or study and I always try to be kind to people no matter what but I've noticed that since getting the T I get more irritable around people and my family. I'm also afraid that if a cure is found that I wont be able to afford it.

 

[SoulStation]

I hate to say this but you probably need to quit making music

Honestly I feel like you should not make comments like this. Like @Steve said "I disagree". I know you struggled immensely with Tinnitus and I know that you mean well(I am with you on the critique of the ATA and the lack of interest in a real cure). I also don't want to take away from your or anybody's suffering by saying that it is worse if you are a musician. But you don't need to need to discourage people like this.

THERE ARE TONS of musicians who have and go on making music with severe tinnitus/and or hearing problems even being deaf in one ear. I don't need to make a list but if you want I can.

 

[Telis]

A lot of people have that same list or similar. Regardless of tinnitus.

Life in general has lots of ups and downs. Main thing is enjoying the ups and not focusing so much on the downs.

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!

 

[Grace]

I hate to say this but you probably need to quit making music

No one needs to quit making music. Example A... Im a drummer.. I downsized to an electric instead of acoustic. And i still have just as much fun beatin the shit outta that thing with the volume down