Just Saw The Brittney Murphy's Brother In The Youtube Video

[Maxine]

WOW----------I know I'm late with this, but I have to say he described it pretty well, and it blew me away.

What else can I say......

Although I have POTs secondary to my EDS and spine instability, in the end it's the POTs that stops me in my tracks from being functional. The pain can be devastating from my upper spine instability, and the EDS, but when my blood won't stay in my upper half, my heart starts goiing crazy, and I have weakness beyond belief, that's what ends up putting me down. My blood vessels won't hold the blood in my upper body, and my brain stem is slowly being damaged from the CCI, and this is affecting my autonomic nervous system-----probably my CNS as well.

Brittney probably couldn't keep the pace hollywood wants. I can't even imagine when a lot of us can't work at all, let along take a short trip to the store.

Maybe she had it milder for a while, then she crashed. I had it milder for years and muddled though fairly well on beta blockers. Then gravity took it's toll apparently, and the EDS reared it's ugly head.

Maxine :0)

[nforste]

Yeah, I only just watched it too and I think all of us can relate to the experience of having a crash and suddenly coping with these crazy symptoms, the struggle with doctors, being told you just have anxiety or depression or it's a virus, not knowing whether you should push yourself or rest, trying different medications, trying to mentally cope with that lifestyle change of being really fit and well to literally struggling to walk a couple of hundred metres. I remember saying the same thing as well, that I really wouldn't wish it on my worse enemy, because it really is so debilitating and life changing, but people don't understand how much of a challenge it is because you look well and I know a lot of us hide how we're feeling or make sure we organise our lives so we'll be able to do something. I have absolutely no idea how Brittany managed to have an acting career with dysauto, that's just amazing. How she even remembered the script is incredible, let alone the long hours and being on her feet. Like her brother, I find exercise, healthy diet, minimising processed foods and exposure to chemicals, and mindset to be most helpful coping with POTS. And sleeping properly and avoiding fluoro lights as much as possible helps too. While it's great to have more people speaking out about dysautonomia, I'm sorry it had to be for this reason.

[Maxine]

Brittney probably did feel pretty horrible trying to keep the hollywood pace, and it's really very sad that she probably couldn't breathe a word of this to anyone, as her career would end. Hollywood production companies probably wouldn't insure her. I can only imagine the amount of drugs she had to take to keep going-------------but it's possible she couldn't take much of anything due to our sensitivities. I'm thinking she had to take something to keep going.

It's impossible for me to be off my wellbutrin and beta blockers. I need the Klonopin to keep the shakes away when my body gets overstimulated.

Speak of "over stimulation"----------------can you imagine the public Hollywood life----what it would do to us? ----costo sets me off!

I feel so badly for her family, and it's so sad she passed away at such a young age. Her brother is a good guy for getting this out there.

This is a good way to honor his sister's spirit.

Maxine :0)