Ideal amount of electrolytes per day for Orthostatic intolerance?

[IHPA]

Hi, my 15-year-old daughter has CFS, and her main problem seems to be the low blood volume, which causes low BP etc. I asked my doctor to start her on Florinef, but it really isn't a long-term solution. And our CFS expert says you have to increase sodium in the diet otherwise the Florinef is wasted.

So my question to you who have gone before (so to speak!) is "what amount of electrolytes do you take each day, that you have found to make you feel better long term?". I'm not after what you have used when you've had a bad day, but rather what you take every day to sustain you and keep your BP up.

We are currently using Elete electrolytes as we are adding it to home made fruit/vege juices, and I don't think she needs any more sugar than what is naturally occurring in the fruit and veges. You add 1/2 teaspoon Elete to 32 oz (1 litre) of liquid, and that gives you 125mg of sodium and 130mg of potassium. Which is only 5% of the daily allowance for a normal healthy person. Assuming she can drink 2 litres of liquid a day, that means she'd only get 10% of her daily allowance.

So how do you get that extra salt into your body? Do you ignore the recommended level of electrolytes per litre of fluid and up it to something higher? If so, how high? She will be getting some salt and potassium from the rest of her diet, but that would take some calculating to work out, and will of course differ each day.

Thanks in advance for your help.

 

[Sushi]

IHPA

I think most of us who have OI have experimented with how much salt and electrolytes to add. I think it varies a great deal from person to person. Some use salt tablets but I couldn't tolerate them and do much better adding celtic sea salt and powdered electrolytes to a glass of water. I use this brand:

http://www.vitacost.com/productResu...5258131|mt|e&gclid=CIT7h_H-h7YCFZFaMgodrhIA2A

but different products are available in different countries. I also take potassium capsules throughout the day totally about 800 mg.

I'd guess that the amounts that you are using now might be too low to help most.

The trouble is that OI varies from day to day for many of us this variance doesn't seem to be related to the amounts of salt and electrolytes we take in. Other factors are involved that probably also vary from person to person.

It seems hard to keep BP up just with salt and electrolytes, though Florinef often helps too. But Florinef doesn't help everyone (it didn't help me) and you have to check potassium while taking it.

You might want to consider support knee, thigh or full stockings too. They help me.

There is a section of the forum dealing with these issues and you'll find a lot people's experiences there.

Best wishes,
Sushi

 

[Ema]

Florinef changed my life in terms of OI. I do take it with salt...and quite a lot of salt...3 to 4 teaspoons a day. Like Sushi, I use Celtic sea salt mixed into my liter water bottles. I also stay on top of my potassium needs with monthly labs (more frequent when starting) and slow-release potassium tablets that are prescribed by my doctor (or available OTC by mail from Canada).

Most people can supplement salt without raising blood pressure. Reports that salt is bad for the health are usually talking about refined salts and have been largely de-bunked anyway. I would just make sure to get a whole, unrefined, non-bleached salt.

I added licorice to the Florinef earlier this year and the combination keeps my blood pressure perfect at 120/80. It's such a delight to be able to stand up quickly again!

If you do try Florinef, I think it is important to start low and slow. My doctor recommends starting at 1/4 of a 0.1 mg tablet and raising after two weeks (while monitoring BP and labs).

Ema