How Many of You Gave Up on Your Dreams Because of Tinnitus or Hyperacusis?

DougPL

DougPL

Member
Author
Dec 5, 2013
3
Poland
Tinnitus Since
06/2007
#1
Did any of those two, or two of them combined, made you drop your plans for life? How did it change, and how are you guys dealing with it? Do you still live your lives with some hope that one day someone will figure out a cure and you will be back to your original plans? What was that had to change in order to maintain descent life quality for you, and how are you keeping your everyday routine?

I won't hide, I need some spiritual guidance friends. I'm on the verge on making big life decision and I'm just going haywire in managing it. The case with me is I've been writing music for most of my life and I want to build my career around gaming industry (music, or sound-design). Right now is my go or no-go decision moment. I have a reactive T (5-6 everyday, managable, but jumps to 6-7 after very basic sound exposures for a brief amount of times), and been having minor H for some time, which recently - for no particular reason (I'm living the same life as usual) - is just skyrocketing and, well, is driving me insane. You probably figure out by now that increased H = avoiding sounds = a lot of pain = no pleasure in any work with audio = no dream job whatsoever.

I'm 26. I know, I know. Some will say I still have a lot of time to find something different to do in my life. But I just can't let go. It's what I'm good at. It's what I've been learning to be good at for my whole adult life.

On the other side though, I am starting to feel as I need to let it go. That it will cause me to much pain in the future, and if I decide to pursue my dreams, and fight it, my whole life will become one big constant battle for normality and survival.

I'm in a flux. I need to hear from you. What are your stories? Did you have a similar decision to make in your lives?
 
#2
Sometimes change just finds you whether you want it or not. Everything about my life has changed except the presence of a loving and faithful partner. That has been my only (life-saving) constant. Moved from city to country, ditched big Nursing career for small, quiet, regional job, abandoned successful and lucrative local music career. Already lost most of city friends. One thing in life is certain and that is change will come sometime. You can fight it or you can roll with it.
 
#3
DougPL said:
Did any of those two, or two of them combined, made you drop your plans for life? How did it change, and how are you guys dealing with it? Do you still live your lives with some hope that one day someone will figure out a cure and you will be back to your original plans? What was that had to change in order to maintain descent life quality for you, and how are you keeping your everyday routine?

I won't hide, I need some spiritual guidance friends. I'm on the verge on making big life decision and I'm just going haywire in managing it. The case with me is I've been writing music for most of my life and I want to build my career around gaming industry (music, or sound-design). Right now is my go or no-go decision moment. I have a reactive T (5-6 everyday, managable, but jumps to 6-7 after very basic sound exposures for a brief amount of times), and been having minor H for some time, which recently - for no particular reason (I'm living the same life as usual) - is just skyrocketing and, well, is driving me insane. You probably figure out by now that increased H = avoiding sounds = a lot of pain = no pleasure in any work with audio = no dream job whatsoever.

I'm 26. I know, I know. Some will say I still have a lot of time to find something different to do in my life. But I just can't let go. It's what I'm good at. It's what I've been learning to be good at for my whole adult life.

On the other side though, I am starting to feel as I need to let it go. That it will cause me to much pain in the future, and if I decide to pursue my dreams, and fight it, my whole life will become one big constant battle for normality and survival.

I'm in a flux. I need to hear from you. What are your stories? Did you have a similar decision to make in your lives?
Click to expand...

I was going to attend university, but with the terrible insomnia and lack of concentration I had to give it up. My life is in a standstill until some medication comes along and helps me. I personally would give up half my life to be without tinnitus, as I could enjoy that part of my life and leave this planet living to the max. As for now, life just seems too much and help from these professionals is too little. They could've sorted out tinnitus a while ago, but they didn't care until it became a major problem. Expect tinnitus to become a bigger and bigger issue in the coming years. However my life is improving thanks to the meds I'm on, but when I come off I worry and stress if the results aren't permanent that I will attempt to take my life, as to suffer is pointless and if the professionals won't help then how can I help myself?
 
#4
Who hasn't ? life is never the same after bad tinnitus and hperacusis. I feel like I'm just waiting to die, but I still try and get through each day as it come's I guess. But yes all of my dreams are over, But I'm 62, I have had a great life, so I try and put that into prespective. I feel really bad for the young people here in their 20's, 30's and 40's who have a long way to go. That's just so unfair.

Louie
 
#6
Nucleo

Wow,,, 21 I'm sorry to hear that

But the good part is that being so young, gives you the time to do things to preserve your hearing. And min your tinnitus. Don't take chances, and always take your ear plugs when ever you leave the house. And wear them when ever you feel the need.

Good Luck, and take care
 
#9
quietatnight said:
I feel really bad for the young people here in their 20's, 30's and 40's who have a long way to go. That's just so unfair. Louie
Click to expand...

I feel the same way, Louie. I've had T since 1978. I'm just grateful that I didn't have H in addition to the T all of those years. I only developed H early last year and mine isn't severe.

Now, I find myself hoping for a treatment more for the younger people than for myself. Like you, I've lived most of my life. I don't have nearly as much responsibility and the stress that went along with it that I once had. It was long hard road just with T. I sure hope that there will be treatments for both T & H in the not too distant future for the sake of the younger generation. So they won't have to endure the additional stress that these afflictions generate for most of their lives.
 
#10
JimH

You are so right, I couldn't agree with you more, I sure hope that we all see some kind of help soon, anything would be great. Life is just so hard with this horrible monster.


Louie
 
#11
quietatnight said:
Your lucky 16K is way out of hearing rage I bet your tinnitus is very low.
Click to expand...

It isn't.

About 5-6 different tones in both ears, left ear has lower pitched sounds on average. Also got hyperacusis and hearing distortion with voices and music in the left ear. Tinnitus can't be masked since it seems to likes interfering with rain sounds and white noise.

Doctors are completely floored since they all say I'm so young I can't possible have hearing problems and blah blah blah...

16 khz is not out of hearing range. In fact the whole cochlea is very much involved in our perceptions of every sound. Take an equalizer and move up the slider for the 8+ khz it completely changes the end results.
 
#12
I've been writing songs and stories since I was little but mostly stories. When my T started in February I gave up song-writing and now I will focus on writing stories instead. At least I have one dream to follow :)
 
#13
TheGagagirl1234 said:
I've been writing songs and stories since I was little but mostly stories. When my T started in February I gave up song-writing and now I will focus on writing stories instead. At least I have one dream to follow :)
Click to expand...

I don't think that you need to give up on your dream of writing songs. Instead, think of just putting that one on "Hold" for a while. Things will get better for you in time and then you'll be able to get back to it....(y)
 
#14
jimH said:
I don't think that you need to give up on your dream of writing songs. Instead, think of just putting that one on "Hold" for a while. Things will get better for you in time and then you'll be able to get back to it....(y)
Click to expand...

Thanks for replying! When the right time comes I think I will write a song about T.. :)
 
#17
Czesc Doug,

My T and H also took away the music from me.
I used to play in a band (always with ear protection). In 2006 I gave up the band when I got my first T + H.
At least I could play acoustic guitar for myself and listen to Music till the end of 2013.
Now with my "new" (19 months) multiple monster T + severe H I cant even play finger style acoustic guitar...thats ridiculous. 14 years of experience with guitar and bass down the drain.
I can't listen to Music, my T reacts and gets louder or my ears start to hurt. T+H erased music from my life. And life without music is dull. Im so jealous of people who are able to listen to music.

Beside that the T destroyed my immediate future. I went 3 years to one of the best european photography schools and after graduation (exhibition) a huge firm recruited me and gave me a well paid permanent job.
Then I get extreme T 2 months later and had to give up the work several weeks after.
And its a shame because it's almost impossible for photographers to find a (well paid) permanent position since it's freelancer job.
Im not even 30 and already disabled with multiple alien ships and washing machines blasting in my head whole the time. Thanks T, may Trobalt **** you up.
 
#18
Danny Boy said:
I was going to attend university, but with the terrible insomnia and lack of concentration I had to give it up. My life is in a standstill until some medication comes along and helps me. I personally would give up half my life to be without tinnitus, as I could enjoy that part of my life and leave this planet living to the max. As for now, life just seems too much and help from these professionals is too little. They could've sorted out tinnitus a while ago, but they didn't care until it became a major problem. Expect tinnitus to become a bigger and bigger issue in the coming years. However my life is improving thanks to the meds I'm on, but when I come off I worry and stress if the results aren't permanent that I will attempt to take my life, as to suffer is pointless and if the professionals won't help then how can I help myself?
Click to expand...

I just read this from you and it seems like your not in the place that I thought you were, so you are still struggling even with the Keppra ? I'm confused ? I thought that really hepled or got rid of at least your hyperacusis ? I must have missed something some where I guess.
 
#19
quietatnight said:
I just read this from you and it seems like your not in the place that I thought you were, so you are still struggling even with the Keppra ? I'm confused ? I thought that really hepled or got rid of at least your hyperacusis ? I must have missed something some where I guess.
Click to expand...

I meant beforehand. I can't go when I'm all these drugs yet.
 
#20
To the original poster... Doug I believe. I have T and H and I play music professionally. I write and record music... Have a studio, etc. You don't have to give up on anything. At some points throughout any given year, my H will get much worse and it's hard to work. I play back at low levels and beat through it
 
#21
I accidentally hit "post". Anyway I bear through my episodes of H. They usually last a couple months... But sometimes up to a year.
It's a bummer as a musician to deal w this stuff. But it's okay. Sound is relative.
I'm 44 years old. I beat up my ears in bands in my teens twenties and half my thirties. Notch loss in my right ear with T... And now my left ear has it as well. My H started at the age of 37... Then went away and came back strong at 42 when I was briefly on Wellbutrin. I stopped taking Wellbutrin and it improved.
Anyhow...don't give up on anything. Just be careful. I have a good time w music. I have to pan everything to favor my left side for overdubs, then mix in mono sometimes to balance things but... Things could be a lot worse. Try to remain greatful and positive and good luck.
 
#22
@DougPL, if you can still enjoy/endure music go for your dream.

My passion centered around acting, body language, acoustic phonetics, writing and reciting, arts (written, painted, played, performed, martial), animal rights, and social dynamics.
Now I'm completely disabled. I can't enjoy anything anymore. T took away everything I cherished/loved. My desires are crushed to dust. My existences rendered meaningless. I feel like, a bird without wings, a river without fish, a forest without trees, a planet without water, a motorcyclist without eyes..

And people get on my case telling me there are worse ailments than **killer reactive T** -- usually from those that don't even have it?! BS! Utterly BS!!

It's a pity that T is inaudible for others! If it was audible, we not only would have been taken seriously years ago but have a real treatment.
 
#25
My life is ruined from T. Got it left ear when I was 29. Habituated a year and a half later. Never bothered me up until 43. One night out with loud music (my own stupidity) and whammo - both ears 7/10, ringing, hissing. I too was a part-time muso with aspirations to play more, record more. Invested a lot of time and money in gear etc. I love electric sound landscapes and textures. That's all gone now thanks to t. I can still play acoustic but most of the time i'm too depressed to even play. Can't sleep. Have tried all sorts. T goes up and down on a daily basis. Drives me to tears most days. Had to give up my career in programming as t just reacts like crazy to sitting in front of pc. Even with masking. Money now a problem how to support myself. Will have to take something menial just to survive day to day. T is crushing of dreams, hope and life. Spiritual / mental and emotional crisis - that is my t journey. Everyday I pray for relief. Some days are better than others but with no consistency I can't be consistent. Friends are sick of me. Family don't know what to do. I'm supposed to be at an age where I can take care of myself. Have all of my life but now - i'm disabled and nobody can see it. On the outside you look just fine. On the inside it is hell. Stuck in self-pity which i hate. Chronic depression. Prob have to go back on meds so that i don't end up in a mental asylum or kill myself. Some ppl just get on with life. I'm totally stymied by this thing. Pre-t life compared to now - two diff worlds. One with hope and prospects. The one I live day to day now is constant struggle. I'm happiest when i crawl into bed at night even though I know i won't really sleep. Even if it is 2 hrs away from my head - that is the most i can look fwd to. I live in a beautiful place but noting inspires or interests me anymore. Occasionally I will have a burst of "I can do this" only to get hit the next 3 days with 8/10 tortorous t. The only hope I see is Autifony with a cure. If i could take a pill to get it to a constant 3 or better yet gone - i could resume my life. Till then i'm in a stagnant holding pattern of pain and torment. I ask God for answers. Maybe one day they will come.
 
#26
Most of the testimonies here are touching and I think that we are all struggeling to find a balance despite of the suffering...
I think it is really a matter of individual decision to continue or not with music with T and/or H.
Beethoven was deaf and had T and still he dedicated his existence to music, probably accompanied by tremendous suffering and frustration...
But we don't all need to be heroes ! I think we must follow our hearts taking into consideration our limitations. There are ways to overcome any disability but it sometimes take a lot of courage... A lot !
Personaly I did not give up on music but I revised my practice and expectations. And I know how difficult it is when you have a drive for music (or any art) to feel limited and threatened in doing it but the pleasure of creativity is sometimes hopefully stronger...
Yesterday for instance I sang all night with friends and without any earplugs and for sure this was not the wiser attitude but I enjoyed it so much that I forgot about my T during the evening... Perhaps I'm a fool to do it but I probably consider that this moment was precious enough to be lived despite of the risk... Like I probably did during my years of paragliding :wideyed: ! But you know what ? I stopped paragliding but not music even if paragliding is probably less risky for my ears than music ! Just a matter of priority...
Sometimes I wonder how Will I Am or Chirs Martin are able to continue what they are doing with T... Is the level of their T lower than mine ? Is it less reactive ? Do they have any H ?
Well I think the only thing we can do right now is learn to be courageous, and maybe, one day, this courage will be rewarded by a cure...
Or perhaps is music the cure ?
Bless you all :huganimation:!
 
#28
My ear, face, and head issues ruined my life at age 23 and continue to prevent me from pursuing any form of career. I have chronic pain, numbness and shakiness in my hands and wrists on top of my other issues, so there's not a whole lot I can do from home either. Currently at age 26, I am still too sick and in too much pain all the time to do much of anything. I barely receive enough money in disability to eat on top of paying rent. The universe hates me and would like to see me dead.
 
#29
Between the tinnitus and the cochlear implant (I don't know which is worse right now), my brain is slower and
comprehension level varies from very bad to not very bad. Dreams? I think I just see a shortening of
my life. But the reality is life shifts for all of us. Dreams have to adapt to first (for me) a changed economic
one (not a dream other than to not lose a home and stay on top of an early retirement), changed hearing
that I'm attempting to extend, and tinnitus that's obvious too often.

I don't see this as karma. It just is what it is. I need to be here long enough to ensure my spouse
is okay and my dog will be fine. Then I'll shift again.

No hugs, guys. We get through this as best we can for those who are able. For those who can't,
look for a Plan B.
 
#30
quietatnight said:
@Nucleo

Are you sure, tehy don't even test past 8K, isen't 16K like what a dog whisle puts out ? we can't hear that ? well most humans anyway, Your not from outer space are you ? LOL
Click to expand...
I've had this argument before. I have a greater history of hearing loss than most on this forum.

1. "My" original (1950s/60s), audiograms tested hearing and speech range was between 500 -2000 hz.
2. 2nd jump went to 4k hz and it was argued. Higher frequencies cover S, Z, F and women voices.
3. Last jump went to 6k hz and it's argued. So, we live and learn but this push was (to me) to make
money.
3a. Higher frequencies make sense for music.

From my perspective (right or wrong) move out the hz so people believe they need it and buy
into more expensive aids. Audiologists may as well push the hz to 20000 because they'll likely
argue that one day. I will likely not be here to see this bogus push.

I've seen the discrepancies and the push to drive an imagined need. I watched the food pyramid not only change but it was called a hoax by a known doctor on the team to set the RDA. He lived near me as a teenager and I attended
one of the functions (with the others on the RDA team) with him mid '70s.
 

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