Salt and water consumption with fludrocortisone?

[ShupeJL10]

So my blood volume is very bad with pots, so much that 2 liters of iv fluids a day aren’t doing the trick to keep me functional (we are thinking leaky vessels, damaged glycocalyx, etc) so my dysautonomia doctor is putting me on more fludrocortisone 0.1mg. Can anyone tell me about your experience with salt and water intake while on this medication? I also may combine it with desmopressin as that is something my doctor suggested since my volume is so horrible. If anyone can describe your experience please respond!

[Birdlady]

Hey! I was on fludrocortisone and desmopressin many years ago. 

For my POTS it did not help me unfortunately. It just made me present like a HyperPOTSy with my BP going up into the 140's. 

With desmopressin you really have to work with your doctor and get blood draws to check your sodium level. You can't just constantly drink water on that med since it makes your body urinate less. Fludrocortisone and salt intake may help, but it is a different mechanism at play with desmopressin.

I can no longer take fludrocortisone because my doctors are concerned it may have caused osteoporosis prematurely in my 30's. I'm skeptical of that, but I have asked about it on here and apparently there is some research that suggests it is a possibility.  I know some get a headache on fludrocortisone, so it's all very individual. I personally never had that problem on it.

This is only my experience and you may not have any of these issues. I know there are plenty who get help with fludrocortisone and/or desmopressin!

[Sarah Tee]

@ShupeJL10, I just wanted to say hello and ask how you are going. I do hope you have found something to help.