Dysautonomia (Autonomic Dysfunction) Community
POTS BLOG
About This Community:

This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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POTS BLOG

hI GUYSI HAVE JUST BEEN DIGNOSED WITH POTS I HAVE JUST STARTED MY OWN BLOG AS I FEEL THIS HELPS ME AS I DONT REALLY HAVE ANYONE AT HOME TO TALK TO ABOUT MY NEW LIFE WITH POTS. IF ANYONE HAS TIME IT WOULD BE GREAT IF YOU COULD GIVE ME SOME FEEDBACK ON THEBLOG AND TELLING ME IF I AM MISSING ANY THING. i HAVE HAD SOME REALLY NICE EMAIL FROM PEOPLE WHO DONT HAVE POTS BUT JUST WANT TO KNOW ABOUT IT SO ITS GREAT THAT MORE AWARENESS IS COMING ABOUT. HERE IS THE LINK  
http://potsreality.blogspot.co.uk/
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Welcome!  

Glad you are able to have an outlet to express your experience with P.O.T.S.!  

Saw on your blog you also were diagnosed with atrial fibrillation- have you read up on that yet?
http://www.mayoclinic.com/health/atrial-fibrillation/DS00291

I recently tried something myself that reduces heart rate- Bystolic and though I was on a low dose, it reduced my blood pressure too much, so I had to quit.  I was diagnosed with P.O.T.S. and I.S.T. back in 2004.  I have a sibling who was diagnosed more recently with P.O.T.S. and N.C.S. (though still conscious on a tilt table, but couldn't respond and vision was black and BP dangerously low).  You mentioned in your blog about your having fainting- did the doctor not feel you had N.C.S.?  

Some people do faint with P.O.T.S., while others do not.  It must be scary for you to have times when you pass out.  Have you bought a helmet yet to wear to try to prevent concussion in case of hitting your head in a fall?  Some have, I think, who post on this dysautonomia forum.
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