Thursday, June 12, 2014

Long Postural Orthostatic Tachycardia Syndrome day.......

This is where I will be today on my slanted bed with my cold wash cloth and well that bottle is my medicine (Cromolyn sodium) .... long day.

Neurology emailed me back, they are having lots of similar emails from other POTS patients this heat makes it worse.... Great! The RN said to up my sodium and fluids! yikes! I am feeling awful today and in fact I was getting worse and worse but my slanty bed seems to help. I think I will be here for a long while today. waiting to hear from on of my neurologist colleges (another neurologist) for help... if you have POTS and don't already know this... please stay out of any heat (I already knew that) I got hot a week ago walking into a restaurant.... not a whole lot of control when you are out of town, you have to eat. I just keep getting worse since that incident and I haven't been outside since. (well I go out in the evenings or early mornings) It is cool then where I live. praying and praying for help! POTS patients my heart goes out to you!! xo-Chelle