Just Heard Some Tragic News

@Ed209
Could you describe those electrical zaps for me,where did you hear them?In your ears,head or where?

 

They are in my brain bill. It's literally like electricity which is why I call them zaps. Position wise it's hard to say, it moves all over.

 

x2. I am touched by this girl's story of positivity. I wish her well too. She is a rare one but someone who can be a guiding light for others even if our ailments are different. It is that spirit of positivity and peace amid the toughest trial in her life that can be something we learn to emulate, even feebly compared to her. I often quoted Zoe Cartwright and Melody Gardot in my posts and my success story as my guiding lights in my darkest days and I I am sure I could have borrowed strength from this lady for her positivity while I was in that long, dark tunnel. Thank you @Ed209 for sharing such an inspiring story. God bless her.

 

Could you listen to music at the beginning ? And now ?

And could you play the guitar ?

Glad you're finding a way out...

 

Life is just one damn thing after another. You get used to it. Buddhists call it Samsara.

 

Always good to see you @billie48, I know I always say this, but you was there in my moment of need and I'll never forget it. You dug me out of a dark place.

I'm still shaken by the situation my friend is in. She has always been so strong that I started to believe she was invincible. It's hard knowing that nothing can be done to help her.

Hope you're well and thank you for your kind words.

 

I had mild reactive T (probably H) but it wasn't bad enough to not listen to music. I just used to turn it down to the lowest setting. I never practise with an amp anymore; I've only been using my acoustic.

Now my tolerance is much better, it wasn't that bad to begin with, but I'm definitely more comfortable around louder things. I used to get a sizzle on certain frequencies. It does happen still, but it's quite rare now. At onset sounds at certain pitches would sizzle frequently.

 

No that's more than enough info,thanks Ed.

The reason I asked is because it's another thing I was looking into on this forum,a lot of people experience these zaps and zings after their noise exposure,I experienced them too at the beginning of this year when my condition worsened but they seem to get brushed off as anxiety here and I think they're a lot more important than that.When I asked a few people about it they all said the same thing,that anxiety causes brain zaps and so does coming off of certain meds mainly anti-depressants.

I hadn't got anxiety when I experienced them this year after my noise exposure,I didn't have anxiety after my exposure in 2014 either but still these brain zaps and zings came with it and the same with a few others here yourself included.

I'm getting off topic here but I just find it interesting,
Noise exposure-Brain Zaps-Tinnitus
Anxiety-Brain zaps-Tinnitus
SSRI withdrawel-Brain-Zaps-Tinnitus
Stress-Brain zaps-Tinnitus

These are all conditions known to cause tinnitus and brain zaps are known to occur with all of them also,could these brain zaps be a warning sign?

Anyway I'll say no more.

 

This is very moving to read Bill, and I can tell that you come from a strong family by your own character and that of your brother. I hope it will not detract from the sentiment to state that while the way your brother dealt with his situation is very unique and inspiring, the one part of your recounting of this experience which is all too common to hear, is that his death could have been prevented by a more competent and efficient and most importantly genuinely caring medical system. There needs to be major change in the medical systems across the world.

 

@Ed209 do you still get those zaps?

 

this guy @dan is kinda mean and evil, dreaming how he will celebrate cos his dad disowned him and cos he lost children and ex wife because he is frutan and cos he doesn't care and he hasn't got a grain of sand of humanity in him.

 

I hope she is doing ok and i hope you are doing ok buddy

I know this is an old thread, so forgive my response if it is not fitting for the situation..

 

Yesterday was an incredibly sad and touching day for me as it was the girls funeral who was at the heart of this thread. She passed on the 11th of April. There were many tears and emotions and an overall celebration of her extraordinary life. It was so clear how many peoples lives she had touched because they couldn’t fit us all into the chapel.

I don’t even know where to begin explaining how and why this girl was so incredible, but the stories told at her funeral blew me away. At the age of 9 when she was diagnosed with FA, all of her dreams were smashed and yet she said to her mom, “but mommy, look at all the things Stephen Hawking has achieved, I’m going to be like him!” She never looked back after that and managed to fit so much into her life beyond all expectations. Her old head mistress did a long a moving talk about her, which included the fact that she very mistakenly tried to treat her like glass, but was blown away by how this 11 year old used to move down the corridors, with walking aids, with an infectious laugh that captured everybody’s attention. She was like a magnet. When they told her she would soon need a wheelchair, she refused to give up her walking aids until the very last moment, and her head mistress said she couldn’t understand why she was fighting it, but that it didn’t take long to realise that she wanted to walk down the aisle for her sisters wedding and didn’t want to be pushed down.

She was a talented artist right from being a kid (before being diagnosed with FA), and continued this passion right up until she could no longer hold anything. In fact, by then she had learnt to drive, play guitar, piano, etc, etc. The list is endless. When she had to give up playing guitar because of her condition it left a lump in my throat. When I said I’m so sorry that you have to give up all of your passions, she said, “don’t worry Eddie, I got to play and I’ll never forget how that feels.” It was heartbreaking and yet she took it in her stride and then moved on to conquer a new challenge and she did this continually throughout her life. She wrote books and scripts and even managed to achieve a high first at university. This is remarkable considering most of her dissertation had to be done at the 11th hour because of all the treatment she needed. Her old head asked her if she was going to study for her degree from home, and she said, “absolutely not! I’m going to live on campus.”

Nobody, and I mean nobody, ever heard her complain about the insane cruelty of her condition. She was literally superhuman. Even towards the end when she had crippling pains 24/7, kidney failure and heart failure, she continued to laugh, smile, and throw everything she could at life. One of her carers said as he choked up, that he never heard a complaint from her even when her life was hell and she had to be lifted in and out of hospital beds all day long, at great torment to her body. She still thought of others and did a ton of charity work.

She was on TV a few times and was featured in our local newspaper recently because of her extraordinary life and the impact she had on so many people. She was like an angel who was sent down to teach us all how life should be lived. Her university also announced that they are creating an award, in her name, for the highest achievers in academia.

When she was slowly dying and we almost lost her 2 years ago (at the time I didn’t realise), she messaged me to ask if I was ok and was giving me moral support. When her mom contacted me and told me how ill she was it floored me. The fact she was still prioritising others summed her up and left me speechless and heartbroken. Nobody deserved life more than she did.

She was such an incredible person that will live on in my memory until the day I die, and no doubt, countless others whose lives she touched.

She was 29.

 

Wow - Ed - you sure opened the flood gates this morning my friend.

A beautiful person she was - and a beautiful write-up from you.

Life is so precious - but then when serious illness strikes us down we are literally so physically fragile.
This young lady refused to allow it to destroy her character.
A gem of a person.

Thanks Ed - I kind of needed to read that this morning,
Dave x

 

Life is a cruel shit sandwich and I always find it disturbing that bad shit happens to good people and then miserable gits like me will probably live to 100.

 

I'm teary... when the little innocent ones suffer like this... breaks my heart.
But what an inspiration... you were blessed to have know her @Ed209.
By the way she is described... she had a beautiful personality and a pure soul.

RIP beautiful Angel, you have earned your wings.