Tried to Do This on My Own...

[FGG]

Hi,

Been mostly posting in the research thread but I am at the very bottom and can't see around the dark edges of what has become my life.

A year ago, I had a career, a marriage and was finallypregnant after a long time of trying.

First, I miscarried, then began to have severe vertigo attacks (first diagnosed as Meniere's, then eventually vestibular migraines probably triggered by the hormone shifts).

I was then put on high dose antibiotics by a doctor who made a huge mistake and after the subsequent ototoxicity, I have some high frequency hearing loss (12000 Hz and above) and severe hearing distortion, which likely due to a brainstem component (due to a channelopathy causes by same antibiotic) unless somehow synaptopathy can cause severe widespread distortions across all frequencies.

I can't listen to any music at all anymore (my absolute heart and soul) due to the distortion and, of course, I hear ringing in quiet. I can't get invested in movies or TV either because it's difficult to hear if there is any background noise.

I lost my dream job and even my whole career since being ill, my husband left me for being "inconsolable", my friends have all started coming by less and less frequently. I cry all day and therapy has done nothing to alleviate this. What do you do when you lose absolutely everything?

I have no family, no career, no hope. I'm really at a loss.

 

[Vicki14]

Hi @FGG
I'm so very sorry to hear your sad story here, it's heartbreaking to hear what you have gone through and I really sympathise with you. Tinnitus is such s cruel condition that many will never understand, including health professionals. It's immensely frustrating when we can't enjoy things that once brought us joy. You've plunged to the bottom of the pool and somehow have to find a way to get back up to the surface again, as hard as it sounds you have to believe you will get there. Don't let this tinnitus monster win. I hope you find the strength to find happiness again xx

 

[JohnAdams]

Just keep pushing, don't give up. You are definitely doing good research. Keep up with that. Maybe eventually our collaborative efforts will result in something tangible.

 

[John Mahan]

Visualize a day when you recover. Meanwhile research meds to get you through.
We all certainly understand. Most of our lives are compromised on some level due to this.
Please know that there are many conditions that compromise quality of life.

What drives us is hope. It may be a ways off but I am convinced the multi faceted approach to solving tinnitus and the strangle hold it has on our lives will be answered.

Once you feel better, there is no reason why you can't embrace life as fully as before. Afterall, you are the same person.

If you ever want to fully understand the deeps of despair and the triumph of the human condition, consider our only 4 term president FDR. Study his life. There is a great documentary on video you can watch on youtube called "The Roosevelts". The great FDR...to me our greatest president....he had everything and pretty much lost it all.

He lost his ability to walk in his late 30's. He lived with unimaginable neuropathic pain throughout his lower body due to the ravages of polio. When he gave his inspirational and freakishly positive oratories he wore 14 lb leg irons and projected the image of a healthy man. He gave those speeches in unconscionable pain. Most knew of his condition.

Struggle and adversity builds character. He had more of both than the rest.

A note of irony. Because FDR was smarter, better looking and more athletically inclined and came from greater wealth than the rest, he was said to be quite arrogant when he was young. Why wouldn't he be? He had much more than the rest. A lot more. Only until it was all taken away. Historians believe as do I that had FDR not contracted debilitating polio, he would have never been elected president. His humility and sense of vulnerability....his humanness in combination with great intellect is what ingratiated him to the common man. This is what people related to. He understood all the suffering in the world because few have suffered more in spite of being given so much.

So when I despair because I too have had a pretty lucky life with good parents and opportunity to pursue my dreams, I consider this great man and how he stared adversity in the face. He wouldn't let it define him. He never accepted it. He was too great.

 

[Manny]

Hi,

Been mostly posting in the research thread but I am at the very bottom and can't see around the dark edges of what has become my life.

A year ago, I had a career, a marriage and was finallypregnant after a long time of trying.

First, I miscarried, then began to have severe vertigo attacks (first diagnosed as Meniere's, then eventually vestibular migraines probably triggered by the hormone shifts).

I was then put on high dose antibiotics by a doctor who made a huge mistake and after the subsequent ototoxicity, I have some high frequency hearing loss (12000 Hz and above) and severe hearing distortion, which likely due to a brainstem component (due to a channelopathy causes by same antibiotic) unless somehow synaptopathy can cause severe widespread distortions across all frequencies.

I can't listen to any music at all anymore (my absolute heart and soul) due to the distortion and, of course, I hear ringing in quiet. I can't get invested in movies or TV either because it's difficult to hear if there is any background noise.

I lost my dream job and even my whole career since being ill, my husband left me for being "inconsolable", my friends have all started coming by less and less frequently. I cry all day and therapy has done nothing to alleviate this. What do you do when you lose absolutely everything?

I have no family, no career, no hope. I'm really at a loss.

Wow. That really so very much to have life throw at you. And I totally and completely get the music part. It is my heart and soul too and I am not the same now.
All I can add is that you're not alone, and here's hoping that your life rebounds. Hugs.

 

[GoatSheep]

My heart truly goes out to you. It truly hurts when you realize the person you married doesn't value the vows they took as much as you do.

My wife shrugged off our marriage of twelve years like it was nothing after I stood by her through multiple miscarriages, suicidality, postpartum depression, ruining us financially causing us to file for bankruptcy and so so much more. But once I started having compounding medical problems and my anxiety disorder ramped up she decided it was time for divorce.

I am like you trying to figure out how to move on when physically and mentally I feel broken.

I hope that something comes together for you and soon.

 

[Chinmoku]

I am really sorry to hear this. I can relate to some extent. I have children and after they go to sleep I cry every night because I don't know how to go on. They need a functioning father but I am not functioning anymore. I sleep very little. I have other health problems, like balance and a host of other bad neurological symptoms. This nightmare started almost one year ago and got worse and worse. Reading, concentrating and working is becoming harder and harder. I stopped music and movies. My wife does not understand this condition at all, she thinks it's in my head and it is my fault if I am still stuck with it. My family is falling apart. I wanted to let you know this to say you are not alone. I am holding onto hope that we can all get better one way or another. I will pray for you.

 

[Daniel Lion]

What do you do when you lose absolutely everything?

Rise from the ashes like a phoenix (spelling).
I mean a mythological bird rising from ashes and embers.
Transcending sorrow and suffering.

What is the alternative?

 

[another sean]

Ive lost everything as well. Part of it just before tinnitus and a lot after it. All of my family has passed, been single for years, nobody to talk to, nobody visits. My career before tinnitus was not possible after tinnitus. Lost the ability to hear music which was my heart and soul as well. couldn't go to places Ive been going to for decades anymore. Just isolated in silence, alone.

What saved me was change and not standing idle. Looking for things that peaked my interest in the past but had other things taking my time. So I shifted my career, my hobbies to things I would not have pursued 100% before tinnitus. And so I found a new career that was compatible with my tinnitus. I found new hobbies and outlets that was compatible as well. The drive to find something new is essential. And it can be exciting. I also found new places to go to. Places I love going to now that are quieter. I had no idea I love hiking so much! As for listening to music, I recently got that back too some degree. I bought a manual record player and with out any speakers attached, I run the needle on the vinyl like usual but I made a large paper cone that I stick into the top of the needle/arm assembly and it amplifies the sound enough that I can hear the music. Its better than nothing and I don't have to miss albums from my favorite artist which was hard in the past. As for tv and movies, try it with caption and no sound at all. I have gotten used it and don't think twice about it now. It becomes second nature and I watch A LOT of movies and TV because I just love good stories.

Hope this helps.

 

[FGG]

Thanks for the encouraging words. I feel too broken atm to really even put more thoughts down.

It does help to know I'm not alone but at the sane time, it hurts to know so many suffer.

I'm not sure what I was looking for. Maybe a place to vent and not feel so isolated in this?

I keep trying to rise again like a Phoenix as someone has suggested. I am not as young as I look (I'm 41) so it is hard not to think I'm wasting my life away. Maybe a year from now i will look back at this post and be greatful things got better. I hope so. If all of you can hang in there, i guess I have to find a way too, also.

Regardless, i appreciate each and every one of you who reached it and wish i could hug all of you back. We all could use it...

 

[PeteJ]

Ive lost everything as well. Part of it just before tinnitus and a lot after it. All of my family has passed, been single for years, nobody to talk to, nobody visits. My career before tinnitus was not possible after tinnitus. Lost the ability to hear music which was my heart and soul as well. couldn't go to places Ive been going to for decades anymore. Just isolated in silence, alone.

What saved me was change and not standing idle. Looking for things that peaked my interest in the past but had other things taking my time. So I shifted my career, my hobbies to things I would not have pursued 100% before tinnitus. And so I found a new career that was compatible with my tinnitus. I found new hobbies and outlets that was compatible as well. The drive to find something new is essential. And it can be exciting. I also found new places to go to. Places I love going to now that are quieter. I had no idea I love hiking so much! As for listening to music, I recently got that back too some degree. I bought a manual record player and with out any speakers attached, I run the needle on the vinyl like usual but I made a large paper cone that I stick into the top of the needle/arm assembly and it amplifies the sound enough that I can hear the music. Its better than nothing and I don't have to miss albums from my favorite artist which was hard in the past. As for tv and movies, try it with caption and no sound at all. I have gotten used it and don't think twice about it now. It becomes second nature and I watch A LOT of movies and TV because I just love good stories.

Hope this helps.

What if tinnitus is severe? How do you work? Do you consider yours mild, moderate, severe or?

Do you have music playing when the sound of your tv is off? I use captions and sound because I need something to listen to besides the tones.

The captions don't always sync up, too.

 

[Mal58]

I can't get invested in movies or TV either because it's difficult to hear if there is any background noise.

I've just been watching Deutschland 83 and, as it's in German, I needed the subtitles to understand anything! But it also meant I could keep the sound way low so as not to antagonise my tinnitus. Could that be a general solution for you? Watch TV with subtitles?

There's always reading, of course, though it can be difficult to concentrate if you have tinnitus. Maybe try reading about those with similar problems, or worse, and see how they keep up hope. I just read "Heal Me" by Julia Buckley which certainly fits that category - it might be an even better fit for a woman of about your age. She gets a bit too invested in seeking out zany alternative therapies for my taste, but she's a great example of how to maintain hope and struggle on.

P.S. Deutschland 83 is a superb drama, very witty and funny as well as exciting.