I Thought I Was Strong Enough to Endure This, I Was Wrong

[Asvalian]

Hello to anyone who reads this, for the last 8 weeks I've been dealing with tinnitus and while at the beginning I had the usual panic attacks, anxiety , depresion, lack of sleep, and suicidal thoughts, I somehow had like a "dream" that one day this would fade away, or that I could somehow find a way to live with it, and after 2 weeks I managed to improve quite a lot, I was working fine despite the annoyance of the T, and I though, "hey, maybe I can leave with it, I've been in despression before, and I came out stronger, so this is not going to be the end for me", I still had "good and bad days" but I still managed. I've done 2 hearing test, "no hearing lost detected" although on the last one I saw that on the 8khz frequency of my left ear was very close to -30db, wierd because on the other it was at -15db, anyway, I think at this point we all know that hearing test weren't really designed to identify T, were they? The thing is, I though I was like a rock, strong, inmobile, trying no to show weakness near my friends and family, tring to deal with it each day, and thinking to myself, "just one day at a time", making an effort just to get off the bed and eat breakfast and study and just have a normal day.

Yesterday I went with my friends for dinner, it was somewhat loud but it hasn't affect with my T, but today I just though "what if it gets worse?" I was supposed to go to the theather so watch the new Starwars film with some friend but this though, this fear I'm feeling right now makes me just want to stop any social interaction, I just what to be able to atlest have a minute of silence, to remember it, because I just don't remeber that anymore and it makes me sad and I'm just shaking in fear and crying with just the though that this might be permanent, that there is NO CURE, no real treatment, that it's a complex issue, that we might never have anything to help us. I've done my research on the internet and it seems that the has been a lot of promising drugs and treatments that have failed, so why would I believe that any new promising drug is going to work.

I don't know, I'm honestly just writing this in hopes that maybe someone might respond that maybe give some answers on suggestion on how can someone live with this, no just for mouths or years, but for their whole life.

T is so different to anything I faced in my life, it's not like depression that you can work around it and improve yourself so you can recover, it's a relentless sound that doesn't stop, doesn't let your mind rest, it's like working out for your whole life, without being able to stop, feeling the pain of your muscles with every move.

I hate the fact that I'm just 24 years old and I know my hearing is going to get worst, by the simple fact that I'm going to get older, unless I die now of course. I've also read people losing friends and BF/GF because of this, and the problem is that I can undestand why, I mean, no one what to be around a person that is negative the whole time, that's why I tried to just deal with it in silence, trying to laugh at the matter, but I can't keep pretending to be unstoppable, to be inmune to pain and suffering, to be a wall that can withstand anything.

I've lost all hope for a cure, for treatment, for anything, I'll keep trying to live my life, but I also feel no fear, when the though of death come to my mind.

Take care, dear T sufferer.

 

[Xorthian]

That fear of t going worse in future, that isolation because people cant get how it feels to not have true relief and hear silence again, and that constant going between "i can deal with it" to "i cant endure it much longer. Yeah...

Personally im just trying to go forward. it can still get better for you so just keep hoping and stay positive.

 

[glynis]

Hi ,
You seem a strong willed person and faced depression and had the strength with help get through it.
Tinnitus is a beast and the unwanted emotions make it even tougher to cope with.
We do in time find our own way of coping with the advice we learn on our tinnitus journey .

Having great support goes a long way and I think this forum is amazing and every member in it as between us all we must cover everything.
We have total control over what makes us happy so try not let tinnitus take away your smile and laughter and confidence in your self...lots of love glynis

 

[carlover]

Tinnitus is horrible horrible horrible any ear pressure that goes with it is horrible ,my relief comes sleep when I have dreams I have no T in those dreams. Its tough

Next door to me my 46 year old friend is going blind ,he now has a guide dog a wonderful labradoodle called jingles,

I watched them crossing the road ,my heart went out to both of them as Jingles tried to find a way through the parked cars to get Colin onto the pavement,

Would I swap my T for his blindness? ...Your having a laugh ,now that really is hell on earth

Fight it ,dont let it get the better of you. Good luck Amigo

 

[Ecip]

I wouldn't give up hope on a treatment or cure just yet. MRI guided high intensity ultrasound treatments are quite promising. They literally destroy the part of the auditory cortex that's causing the phantom sounds and therefore silence the tinnitus.

 

[InfiniteLoop]

wouldn't give up hope on a treatment or cure just yet. MRI guided high intensity ultrasound treatments are quite promising. They literally destroy the part of the auditory cortex that's causing the phantom sounds and therefore silence the tinnitus.

HIFU is not applied like that at this moment. It is targeted to the thalamus. However, I think like you that it will be better to destroy the auditory cortex areas that are sensing T (hearing loss affected region) rather than the thalamus. Most people have T in the very high frequency range and selective HIFU neuron killing should be possible following the tonotopic map. Is this really so simple or are there other regions involved? Do you have any references on HIFU applied to the auditory cortex?

 

[nills]

Tinnitus is horrible horrible horrible any ear pressure that goes with it is horrible ,my relief comes sleep when I have dreams I have no T in those dreams. Its tough

Next door to me my 46 year old friend is going blind ,he now has a guide dog a wonderful labradoodle called jingles,

I watched them crossing the road ,my heart went out to both of them as Jingles tried to find a way through the parked cars to get Colin onto the pavement,

Would I swap my T for his blindness? ...Your having a laugh ,now that really is hell on earth

Fight it ,dont let it get the better of you. Good luck Amigo

I would choose blindness over T ... what use is a world you can see when you can`t enojy it ... and how wonderful is it not to see a world when you can just enjoy your silent inner world ...

 

[RicoS]

I lost almost all my friends after T, but the ones that stayed are true friends I guess.
Also I made some new ones also ....live is not linear.....friends come and go....
You just never know what live is given you ..... but it is on you how to deal with the new situation
Sure it ain't a walk in the park.....but you can get enough support here on TT.....I really got motivated by
all the nice people here and some became friends of mine! So do not loose hope!

 

[Atlantis]

Don't kill yourself. I have read too many doing that lately.

 

[just me]

I understand, my tinnitus has stepped up for the third time since I first became a victim of it 6 years ago. It's been a month of this new level of screaming and I think I've met my match. I keep on living my life, but I no longer fear death either. Sleep is my only relief, and I find myself using sleeping pills at all times of the day to escape this prison for just a few hours.

I always thought--why me? And my answer always was "because I'm strong enough to deal with it".


Well, my strength is slowly dwindling--and yet I try to go on.

 

[Asvalian]

Thank you for the responses, I just don't undestand how T seems to be forgotten, I mean it's true that it doesn't kill people, but it definetly can kill their will and minds, slowly but surely. And the worst part is the absolut lack of emphathy from doctors in general, I asked if the fact that when I perform valsalva only my right and good ear pops while the other does not can give any clue on why I have T, he simply said it's just nonsense and kept talking about other things, and I felt like, "can't you atleast just, I don't know, try something to make sure it has nothing to do with T?" even if he is right, (which I honestly don't know), at the very least just show some interest. Other doctors said things like "it's not that big of a deal, you'll be fine", this definetly irritates me, if I had one wish, (but that wish couldn't be a cure for tinnitus) I would wish that the 200 most wealthy people in the world to have T or the most influencial doctors to have it, just so that they know what is to live in fear, that maybe one day you are not going to be strong enough to live with it, to fight each and everyday just to have a normal life.

Honestly, the best way I can describe what is to live with T, it's to be inside a cage, surrounded by hungry lions, all trying to eat you, and other people in a safe zone, looking at you, expecting you to stay calm.

I brought some earplugs today because I still want to watch the new Starwars with my friends, but that doesn't mean I lost my fear... I just hope I'm not making a huge mistake.

 

[Andersson]

The reason there is not more money in it is that the absolute majority learn to live with it and move on.
And most of those also have milder T which might anoy them when they got to bed online. So they don't seek much help for it.

For the others that suffer its harder, I mean I lived perfect last 3 years with T. Now after a lot of crap in my life it increased and I am back to square 1 where it is everything in my life and the energy I have is 0 because everything is focused on my loud T that overpowers everything.

I think more money will come into research because T is more and more common these days with louder places, concerts, more young people blasting music in their ears etc.

 

[carlover]

I would choose blindness over T ... what use is a world you can see when you can`t enojy it ... and how wonderful is it not to see a world when you can just enjoy your silent inner world ...

Hello Nills ,I find that shocking buddy, Im sitting here laptop on TV on Tinnitus jet engine in my head as I type ,and you would take blindness over that, wow ,,,,,wish you well ,Pete

 

[Asvalian]

Hello Nills ,I find that shocking buddy, Im sitting here laptop on TV on Tinnitus jet engine in my head as I type ,and you would take blindness over that, wow ,,,,,wish you well ,Pete

I agree with you, maybe he would prefer that but I absolutly wouldn't, T is just terrible but to choose blindness over T... that's another history. I just love 3D and art (paintings) too much, as well as films and other types of media.

 

[Blujay]

I wouldn't give up hope on a treatment or cure just yet. MRI guided high intensity ultrasound treatments are quite promising. They literally destroy the part of the auditory cortex that's causing the phantom sounds and therefore silence the tinnitus.

Can you point us to more information about this, such as scientific articles, etc?

Thanks.

 

[Ecip]

Can you point us to more information about this, such as scientific articles, etc?

Thanks.

Yea for sure, let me find it again. Its offered by a doctor in Zürich, Switzerland.

 

[Ecip]

Can you point us to more information about this, such as scientific articles, etc?

Thanks.

Here:
sonimodul.ch/

 

[Lorac]

Hi @Asvalian,
Tinnitus and hearing loss can't kill you. That very fact makes you tougher than tinnitus. How much are you willing to endure to get your old life back? You are a determined person and I know this from reading the first paragraph of your introduction. You try to protect other people from this, try to shield them from what you are going through. I did (still do) the same. You have reasons to learn how to cope with your tinnitus - friends and family.
You may want to make lifestyle changes to live more comfortably but you CAN live with tinnitus. I am older than you and I have been dealing with loud tinnitus for over two years. I was a teen when the very first Star Wars movie came out. Will I wear an earplug and go see the new film on the big screen? You're damn straight I will! I am going with the same "kids" I went with to see the first one decades ago! Will tinnitus bother me during and after? Yes,probably. I likely won't go again to the cinema any time soon.
That's how my life has changed. I choose when I am willing to muster the toughness to endure loud situations. I take days off (quiet days) but I am there for the people who want me to be there when it is important or special. My best advice is to find a therapist to talk with. It is good to have that one person that you can just unload on.

 

[Telis]

That's how my life has changed. I choose when I am willing to muster the toughness to endure loud situations.

Putting yourself through or making yourself "endure loud situations" is not "toughness". What makes it so tough? That you have the balls to gamble further with your hearing? Wow, real tough!

 

[nills]

I agree with you, maybe he would prefer that but I absolutly wouldn't, T is just terrible but to choose blindness over T... that's another history. I just love 3D and art (paintings) too much, as well as films and other types of media.

yes, and i love sitting quietly in silence doing nothing ...