• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

POTS is resolving.... but not in a good way

Messages
97
I first noticed there was something weird with my pulse in January; when I measured it laying down it was 60 and it would quickly jump to 95 - 100 standing up, and 120 or so at a modest walk.

Now I know that's called POTS, of course, and it's been "improving" ... well not really.

My pulse laying down now rarely drops below 70, though standing up hasn't changed really.

I am not so sure this is a good thing...
 
Messages
97
6 liters of water a day, with a little added NaCl (1 g sodium daily) /KCl (2 g K) /glucose (20 g)
I try not to overdo the salt, because I found a couple studies like this one that indicate it may exacerbate autoimmunity (at least until I am able to gather more information on what I'm dealing with).
 

SOC

Senior Member
Messages
7,849
6 liters of water a day, with a little added NaCl (1 g sodium daily) /KCl (2 g K) /glucose (20 g)
I try not to overdo the salt, because I found a couple studies like this one that indicate it may exacerbate autoimmunity (at least until I am able to gather more information on what I'm dealing with).
For most people with POTS, that's not enough. It might help a bit, but it doesn't resolve the problem. That much water is probably just going right through you and washing out a lot of nutrients in the process. You could be making yourself low in electrolytes. Have you had them tested recently?

If you have POTS, you need to get yourself under the care of an autonomic specialist, or at least a cardiologist, to get the proper medical care for your condition.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
6 liters of water a day, with a little added NaCl (1 g sodium daily) /KCl (2 g K) /glucose (20 g)
I try not to overdo the salt, because I found a couple studies like this one that indicate it may exacerbate autoimmunity (at least until I am able to gather more information on what I'm dealing with).

The autonomic doctors I know recommend less water (about 3 liters) and more electrolytes. Electrolytes help you retain water. Electromix is one that some of us find good.

Sushi
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
That amount of salt wouldnt hold in all that amount of water and you are very likely to be screwing up your electrolites doing things like that. Seek out a specialist. You may be currently doing more harm to yourself then good and just would be peeing it right back out.

Around 3L a day is the common amount of fluid for a POTS patient who is being well managed (I drink a lot more as my case isnt well managed cause I cant get to doctors and do not have a good POTS doc but I also have a lot more salt to try to hold the fluid I drink and do also take Florinef to try to hold onto the fluid).
 
Messages
97
I live in Arizona without air conditioning, so I get thirsty often -- maybe, um, pee color is a better guide? What should I aim for in that regard (beside the toilet bowl)? Electrolytes have always tested mid range, potassium usually right at that critical 4.3-4.4 level.

SOC found a list of specialists not too far, so I will try to see one of them. I was getting concerned about the apparent rise in my resting pulse.