Postural Orthostatic Tachycardia Syndrome - I'm newly diagnosed for POTS and currently have it about 80% controlled.
1 Mar 2012
I was recently seen at the Mayo clinic in AZ to see if there was anything else that could be done to controll my POTS. 1st and most important is the salt (4tsp) and fluid (4.5 liters) intake per day. This may be different for everyone. 2nd the head of the bed must be elevated about 6". This helps to control your BP, pulse, and dizziness when you stand in the morning. 3rd is to workout your lower extremities and abdominal muscles. This helps to prevent the blood pooling and to decrease other symptoms. Exercise is one of the key things to help control POTS. Last would be any medication you Dr prescribes. This was the information given to me. Hope this helps.
2 May 2013
there's a group on line called The Experience Project, where you just put in your own diagnosis and write your experience or read the experiences of others like you. I realize now, in my 50s that this has been going on in me since menache. I had surgical menopause bc of Ehlers-Danlos (didn't know I had it until last year! ha) but my symptoms got worse for years until I finally got dx this year. Now I'm not even able to get out of bed for exactly a year this week. I have hyperadrenergic POTS though, so I'm not even sorta typical even for POTS. I wish I could tell you all it gets better, but my mom was the same way for 30 years and never got diagnosed... she used to say that "once you're sick, you might get better but you'll never get well."
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