Will I Make It Through? Time to Ask for Support?

[Mario martz]

Hey guys,
the only reason im posting this is because i feel very lonely and there isnt anyone around who would be able to understand me.

i have been into this beautiful and secret T world ( sarcarsm ) since february of this year.
when it started obviously i panicked and as the months went... i finally started to find peace.
i develop coping ways to keep myself busy and not thingk about T,
i started my projects, work and do better at my job, made new friends, go to quiet "fun" places, take care of my dog, me, etc...

im still a "young" person (and even thou that T is a bad thing to happen at every age or stage of life)
i must admit that it hitted me pretty hard since i loveeeee music, concerts, bars, im a very social person, and people in my city knows me because of my former reputation of a "party kid". my biggest dream is/was playin in a band and tour the world. (some how i thought loud music was the reason behind my onset )

so yeah i had to give up on that dream, no music, no traveling like used to (traveling made me feel free)
i got over the parties.. anyways.

a few weeks ago i think i was better than ever, so much better, my tinnitus has been improving and the future didnt seemed so dark.

UNTIL... i went to visit a new ENT and basically told me that my tinnitus came from a Vestibular / Endolymphatic Hydrops nature, and not from acustic trauma.
ive been very depressed and seriously dont see myself living with that problem.

i have had my doubts about his diagnostic... but my guts tell me that something is not right.
if i do have meniers or secondary endolumphatic hydrops, i havent experience any other symptoms besides tinnitus.
no attacks, no apparent hearing loss, no vertigo etc...
but im afraid that this could happen at any given moment..
and im afraid i wont be able to work on my computer like i do every day, drive, go out on my own, live my life...
or be independent.

i just dont see myself living with tinnitus AND hearing loss, and vertigo, and dizziness...

things have been hard this past year for me.
im adult enough to move from home, and despite of this problems none of my family members have been supporting to be honest, my sisters are older and they are just living their life with theirs husbands and kids.

my dad, hes only talking about his new girlfriend and being very agressive and verbally abussive to me (even that he knows im struggling)
my boss is very good but after i told her about my current situation she told me "i think everything is in your head you need a good fuck" .. lol

My friends have been supportive, but i dont wanna bore them with my "depression" and to be honest they dont understand.
the only person that understands me and have helped (in real life of course) is my psychotherapist.
and of course it seems like my dog is the only person whos happy to see me.

ive been getting support from a dear member from here, shes amazing.
and also been talking to another member i have on facebook too whose very bright and supportive too.

but i dont know i just feel so alone, i miss my mother (died a few years ago) she really cared about me, and i miss feeling sane and healthy and young.
i dont wanna have to deal with tinnitus or meniers or any other endolymphatic shit....

i know i cant change these things, that i need to be a grown up and carry on.
but i just dont see myself living with that kind of vestibular problems in the not so distant future.
i wish i was sure i can carry on.

i wish it was only tinnitus.

i wish i could return to my old self when i was this increidible super lucky human being that every one thought was going to have a bright future.

but i cant, i feel a failure and i fear the future.


sorry for the long post i needed to rant a little bit.

 

[GregCA]

Don't you think it's strange you are diagnosed with a condition for which you show no symptoms? Get a second/third opinion before freaking out.
I was diagnosed with EH/M too, which turned out to be wrong.

 

[Jason C]

I know exactly how you feel, my tinnitus was caused by acoustic trauma but the acoustic trauma was so servear that I have vestibular issues along with the tinnitus and hearing loss including dizziness and vertigo.
I feel like my life has ended too, no more shows, no more travel, no more music, I'm looking at my relationship breaking down and with that will lose my daughter too.

We are all here because we are caught in this mess. I have no idea how we move on with this, the though of managing this condition for the next 40 years is not something I can or want too do. I just want my old life back, I want to go to the gym, relax, go see a movie at the cinema with my gf and daughter, plan next years holiday etc all things I can no longer do.

 

[Mario martz]

Don't you think it's strange you are diagnosed with a condition for which you show no symptoms? Get a second/third opinion before freaking out.
I was diagnosed with EH/M too, which turned out to be wrong.

Thank you Greg, that would be a wise thing to do.
i can tell you that my Tinnitus has improve so much, right now i barely hear it.
and as far as i know EH/M tinnitus gets gradually worse...
not sure if i have lost some low frequencies ive been waiting since friday for the doctor to sent me my audiogram via Email, he hasnt sent it to me... and thats something i find very very weird.

 

[Mario martz]

I know exactly how you feel, my tinnitus was caused by acoustic trauma but the acoustic trauma was so servear that I have vestibular issues along with the tinnitus and hearing loss including dizziness and vertigo.
I feel like my life has ended too, no more shows, no more travel, no more music, I'm looking at my relationship breaking down and with that will lose my daughter too.

We are all here because we are caught in this mess. I have no idea how we move on with this, the though of managing this condition for the next 40 years is not something I can or want too do. I just want my old life back, I want to go to the gym, relax, go see a movie at the cinema with my gf and daughter, plan next years holiday etc all things I can no longer do.

Oh man, im sorry to hear that.
you have a reason to fight, your daughter.
i understand your pain, we are with you.
i hope there is some sorta treatment in the near future to restore the inner ear

 

[volsung37]

There are a lot of people with non-acoustic T. I am one of them and no-one has been able to tell me what causes it. Unless the ENT has proof that your case is vestibular or Menieres I wouldn't worry too much about it. The fact that your tinnitus has reduced is a very good sign. Enjoy the relative quiet, quit worrying and enjoy your young life!

 

[Alue]

I would get a 2nd or 3rd opinion with a diagnosis like that. Correct me if I'm wrong, but it seems like it's the diagnosis that's bringing you down more than the symptoms. I thought you were doing okay with your tinnitus a month ago.

Sorry to hear about your situation. I understand feeling alone with this. Invisible disabilities are very isolating. I live alone, have siblings that have families and kids of their own, my life never turned out like that. Only thing that keeps me here is my parents.

 

[Mario martz]

I would get a 2nd or 3rd opinion with a diagnosis like that. Correct me if I'm wrong, but it seems like it's the diagnosis that's bringing you down more than the symptoms. I thought you were doing okay with your tinnitus a month ago.

Sorry to hear about your situation. I understand feeling alone with this. Invisible disabilities are very isolating. I live alone, have siblings that have families and kids of their own, my life never turned out like that. Only thing that keeps me here is my parents.

Yes, my tinnitus is not a problem anymore, its mild/moderate
but i dont have any emotional reaction to it anymore.
food spikes it, so.. i watch out what i eat everyday.

and yes, the "diagnosis" is what is bringing me down.
the fear of it getting worse, having attacks and not being able to live in an indepent form.

yes, life have never turned out like this before, it can be a very lonely road.
if you had a visible problem people would be more caring or concern.
but this is not the case for any of us.

 

[MikeP505]

@Mario martz

Hey bud, don't worry about life's "IF's" Protect your hearing now as you know your hearing is very sensitive. Watch what drugs you ingest, alcohol etc. Your warning is here, its clear and it's telling you to make changes NOW! Time for ear plugs at parties buddy! I lost a million dreams in my life. That's life!! Doesn't mean things need to get worse. You might have further issues or they may slowly decrease if you take care of these warning signs now. Hard to say really. I fell in a fire pit once at an outdoor party. My arm burnt a little. Small blisters and scab. Hey, that's a warning not to play with fire right? Well yea better look after those ears at ALL cost now.

Get better. We are rooting for you. Try not to stress out over what might happen or the lack of support from family and friends. My family has NO IDEA what I go thru. Friends have only a wee bit of understanding. Not going to make that an issue. The less stress in our lives, the better we function.

 

[MikeP505]

I am just over 50 and totally lost all my hearing and suffer the loudest tinnitus you might imagine. I can't even make a phone call to mask it!! lol Not the end of the world. I drive, put on my own clothes, visit and travel, eat, drink and sleep just like I did before. ( sleep needs a med once in awhile) Talk about crushing other dreams tho!! Could be worse. See people in wheelchairs that can barely use the controls to go anywhere. Imagine that life? Someone has to help you bathe, use the toilet, dress you, and yet, they still get on with life!

 

[Mario martz]

I am just over 50 and totally lost all my hearing and suffer the loudest tinnitus you might imagine. I can't even make a phone call to mask it!! lol Not the end of the world. I drive, put on my own clothes, visit and travel, eat, drink and sleep just like I did before. ( sleep needs a med once in awhile) Talk about crushing other dreams tho!! Could be worse. See people in wheelchairs that can barely use the controls to go anywhere. Imagine that life? Someone has to help you bathe, use the toilet, dress you, and yet, they still get on with life!

Thank you Mike,
im glad you are still able to do many things!!
im also in the same page (just tinnitus thou)
i have been able to move on and all,
last week i was told by a doctor that my tinnitus came from a endolymphatic nature
that means that my tinnitus might be the only symptom from now... but things can get pretty weird in the upcoming months (hearing loss/ vertigo attacks/ dizzines etcc) thats whats making me worry.

tinnitus in this moment is not a big deal for me.

 

[Candy]

@Mario martz
tinnitus is better for u, you've adjusted, start living again.
ENT was probably trying to give u a diagnosis, something to hold onto, u haven't even got some of the symptoms. Have been searching for answers too...future is a big unknown, if my tinnitus becomes manageable day to day it's enough for me! Until we get new treatments of course...

 

[Coyotesheaven]

I can understand your point of view, and have at least been there in some ways. I was also a wild party kid, loved going to clubs and dancing for the whole night, with my heart and soul on max power.
I had to give up that life in the Summer 2015 because of the loud noise danger, and it was a hard adjustment given how happy the music and the social occasions made me. Until about Spring, I was able to transition to listening to my classical or new age music and still going to quieter contra dances and some social opportunities. The new life kept me spiritually strong, possibly stronger, all the way up until my chronic health issues came. I still felt that I had a rich life; under the same idea, and from what you have told me, your life is equally or richer than mine with your job, your artistic endeavors, and your ability to continue with a reasonable intact social life. You have a lot of beautiful things going for you.

I am not at all downplaying your physical and mental suffering as I think it what you are going through is equally difficult as it if for many on this site (especially for the lack of understanding and mean behavior from family and others, which really is a kick in the stomach that you don't deserve); but you are far far away from the chronic health issues and social isolation I have had to deal with.
You still have great health as all goes around aside from the T, you still have exceptional hearing that will keep you blessed with music for many years to come, even if you cannot experience the music in the club/bar space, and you still have many social opportunistic ahead of you. I envy anyone who can have a person-person conversation in a restaurant or cafe, even at the local park, and I envy anyone who is blessed with good health, stamina, and who can still have a rich experience with music.

You are still in good hands, and your life has great opportunity to be spiritually fulfilling even with your T. And I am glad that you also are also winning the mental battle over your T.

Regarding that 'diagnosis', I think you should still remember to be skeptical about your doctor's opinions, and be relieved in knowing that you do not really have the symptoms of hydrops. As I mentioned earlier, your doc seemed to come to a too hasty conclusion about the hydrops, and if you have not been getting the vertigo and more serious inner ear issues, why fear them now?
Fear and anxiety do more damage than anything, and you do not want your body to attempt to re-create symptoms out of fear (psycho-somatic problems are a real phenomenon, and they can show up with other organic ailments if one worries a lot) . When I had panic attacks and terrible anxiety back in the spring, all my problems were greatly exacerbated and my body did seem to create new symptoms for me to deal with because of the high levels of anxiety and stress.
I highly doubt that your condition will progress to be that of hydrops. Even if it does, hydrops does not = Meniere's disease and there are many solutions. You are already doing the right things by avoiding trigger foods that spike your T and watching your diet.

Here is to hopes and thoughts that your life will still continue to grow by leaps and bounds, that your tinnitus will make you a stronger person, and that your health will remain resilient.

 

[Mario martz]

I can understand your point of view, and have at least been there in some ways. I was also a wild party kid, loved going to clubs and dancing for the whole night, with my heart and soul on max power.
I had to give up that life in the Summer 2015 because of the loud noise danger, and it was a hard adjustment given how happy the music and the social occasions made me. Until about Spring, I was able to transition to listening to my classical or new age music and still going to quieter contra dances and some social opportunities. The new life kept me spiritually strong, possibly stronger, all the way up until my chronic health issues came. I still felt that I had a rich life; under the same idea, and from what you have told me, your life is equally or richer than mine with your job, your artistic endeavors, and your ability to continue with a reasonable intact social life. You have a lot of beautiful things going for you.

I am not at all downplaying your physical and mental suffering as I think it what you are going through is equally difficult as it if for many on this site (especially for the lack of understanding and mean behavior from family and others, which really is a kick in the stomach that you don't deserve); but you are far far away from the chronic health issues and social isolation I have had to deal with.
You still have great health as all goes around aside from the T, you still have exceptional hearing that will keep you blessed with music for many years to come, even if you cannot experience the music in the club/bar space, and you still have many social opportunistic ahead of you. I envy anyone who can have a person-person conversation in a restaurant or cafe, even at the local park, and I envy anyone who is blessed with good health, stamina, and who can still have a rich experience with music.

You are still in good hands, and your life has great opportunity to be spiritually fulfilling even with your T. And I am glad that you also are also winning the mental battle over your T.

Regarding that 'diagnosis', I think you should still remember to be skeptical about your doctor's opinions, and be relieved in knowing that you do not really have the symptoms of hydrops. As I mentioned earlier, your doc seemed to come to a too hasty conclusion about the hydrops, and if you have not been getting the vertigo and more serious inner ear issues, why fear them now?
Fear and anxiety do more damage than anything, and you do not want your body to attempt to re-create symptoms out of fear (psycho-somatic problems are a real phenomenon, and they can show up with other organic ailments if one worries a lot) . When I had panic attacks and terrible anxiety back in the spring, all my problems were greatly exacerbated and my body did seem to create new symptoms for me to deal with because of the high levels of anxiety and stress.
I highly doubt that your condition will progress to be that of hydrops. Even if it does, hydrops does not = Meniere's disease and there are many solutions. You are already doing the right things by avoiding trigger foods that spike your T and watching your diet.

Here is to hopes and thoughts that your life will still continue to grow by leaps and bounds, that your tinnitus will make you a stronger person, and that your health will remain resilient.

Thank you so much,
everything you have wrote for me is ver wise and some how uplifting,
thank you for taking your time, it means a lot.
and you are probably right about why worry if i dont (or still) dont have it.

i know many people in here have it worse, or have other nasty symptoms.
and i feel for everyone.
its just that sometimes i felt my life was an endless sea of opportunities and capacities.
and now its getting smaller, and smaller... but thats just a negative perception.

thank yo so much, and i hope you find relief soon too.
no one deserves to have this mystery malady.