Dysautonomia vs "Brittle" Dysautonomia

DysautonomiaMD's webcam recorded Video - September 28, 2009, 12:07 PM

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• pressure
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• paraplegic
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• stockings
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• dysautonomia
• Brittle

[jojers85]

I am certainly trying to get better! I , like you wish doctors would do more research on this kind of stuff. There are so many people just diagnosed with depression and anxiety instead of what's really wrong and we are so often misdiagnosed. It makes me sad... I hope your day is good today.

[DysautonomiaMD]

@jojers85 : I share your sentiments as we all know them so well. Being a doctor myself, I hope to change things for the better.....for all of us. I'm doing my part by sharing a special patented Chinese herbal medicine that my Acupuncturist developed herself...so here's to 2012 and many hopes for many blessings!! LoLv.

[jojers85]

Thank you for sharing... I was just diagnosed with NCS, but I think I have more that that. My numbers tend to do the same thing and fluctuates a lot, but it sure does make you feel like crap. You never know what your day will be like and it sure makes it hard to function at work... I was recently out for 3 1/2 months because I was so bad I could not move... Even sitting can be bad some days. No one really gets it except those that have it. I had a primary doctor that just kept telling me nothin

[DysautonomiaMD]

@jojers85 : I believe that if you just keep on doing what you can every day, you can get better. It is possible. Don't let any one take your hope away. Ever. LoLv.

[rx2mozart]

sometimes blood pressure goes down and sometimes it doesn't, but either way I feel uncomfortable.

[DysautonomiaMD]

@rx2mozart : and sometimes we have heart rate changes that occur suddenly.....and it is embarrassing when we are in public and we 'look' so good. I'm still trying to figure out the whole thing. Good times and bad times. Playing times and resting times. It all has to be broken up in to bits. LoLv.

[luminescentfeeling]

Dr M. Have you tried super tight 'tights'?

When I was bed ridden, I got some vascular stockings (by accident as I was arguing with a psychiatric nurse about the risk of DVT). So I got them, and slowly over a period of months, they helped me stand upright.

The disadvantage is the other patients thought I was a transvestite, but it was worth it.

They're uncomfortable and sweaty and horrible - but they help keep blood in your chest/brain more.

Apologies if I'm preaching to a convert.

[lednugenna]

If you possibly can try to get a wheelchair that allows you to recline so that you can spend more time up and not need to go to bed as much.

[DysautonomiaMD]

@couragegirl1 : I know. Don't a bunch of us know, really. You have to know that you are not alone.

And even when it seems like no one is there, you are right. God is always there...and without Him, I don't know how other people 'make it' through tough times. Together we are Strong!!! Keep up the Faith!!!! Don't let any one take away your HOPE!~!! :-)!! LoLv.