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Help For Low Blood Volume?


P SUDIK
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I know that lots of liquid and salt helps POTS and low blood volume. Just wondering if anybody gets any other treatments (besides IV).What about epogen? Anything else? I'd appreciate any help! Seems lately,I could use an extra boost. I do drink gatorade and am going to try pedialyte. Some of the other drinks ,mentioned here, I can't find in Oh. Thanks P

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My doctor said that using weight machines or free weights can help to some degree. I am trying this, though can't manage more than half an hour, a couple of times a week. As it is good for gaining bone density as well, it seems a good plan.

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Hi, Pat:

The only med I know of off the top of my head is Florinef, which retains salt and helps increase blood volume, but I see you tried that.

Hmm... I switched from Gatorade to Crystal Light with 1 tsp of salt added (shaken, not stirred, ha ha). This increased the salt in 64 oz from 880 mg (Gatorade) to 2,360 mg! It seems to have helped me a bit, particularly in increasing my salt intake because I could only eat so much food! Plus, there's only 40 calories in 64 oz of Crystal Light versus 400 in Gatorade! :angry:

I hope you find a solution!

Deucykub

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HI! I know that florined and epo can do it. I tried epo, but my blood counts didn't go up enough?

Deucy kub does salt taste bearable in crystal light? does it reduce the amount you put on food b/c I am very good about my salt, but there are just some days when I'm not feeling good and all I want is toast, but can't really eat it b/c I need to have something salty. :lol:

Does it taste ok in gatorade or anything else?

Thanks, Madeline

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Pat,

They best thing that has helped my is Procrit. It took over 3 month of getting the injection weekly. But my HCT is now finally 36-40 now it stays around there, which for me is great. Also the compression stocking 20-30 grade helped alot. Also for about 6 months timed midodrine worked great, (then for some reason my b/p started going to high so I had to stop, but for the 6 months it worked great.)

Hope this helps! Take care! :lol:

Amy

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Hi, Madeline:

The salted Crystal Light tastes the same as Gatorade to me. I started with half a teaspoon and couldn't taste it, so I thought, what'll happen if... and I put in a full teaspoon, a teeny bit more salty, but not really noticeable. I try to eat a lot with salt in it and on it, but the Crystal Light concoction takes 1,500 mg out of what I would need to eat each day (compared to Gatorade, otherwise 2,300 mg). Oh, I've also used the cheap-o store brand generic Crystal Light, tastes the same!

Crystal Light is less expensive than Gatorade, and the generic is less expensive than Crystal Light. Every penny counts right now while I'm struggling with my ability to work! :P

(Oh, I do drink it with a straw in a glass, however, or I look like a little kid that got into the Kool-Aid! Quite the moustache! :lol: )

Deucykub

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Hi there- there are a number of things to try- some medicinal and others not. Apart from gatorate, of course, you can stick with food that's salty- I only drink gatorade when I have to. Also, if you can do cardiac exercise, that is supposed to help blood volume. If you can't eat salt, there are salt tablets, but those should only be taken with food or they can upset your stomach.

Also, there are epogen/Procrit/erythropoetin which act as a vasoconstrictor AND build up red blood cell volume.

Florinef is supposed to help you retain salt, minerals, and fluids, which should help with volume.

DDAVP or desmopressin helps you retain water if you find yourself peeing too much out like many of us. That can help you retain plasma volume.

Anyway, let us know what you decide on. I think florinef is usually the first step for this, and otherwise they'll want a lot of lab work. Take care!

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  • 2 weeks later...

Epogen/Procrit helps raise your blood volume, if it's not working then you probably don't have enough Iron in your body.

Florinef is to help with fluid volume (salt & water balance), not blood volume.

I use to do all 3 drugs but finally weaned myself off of the Florinef. Epo & Iron have been the best treatment that I've been given since getting this horrible illness, I think I'm as close to day to day function as I can hope to get.

The idea behind getting Epogen is two-fold, correcting anemia for those of you that suffer from that and max out your blood volume to help with Orthostatic Intolerance so you don't have the wild swings in blood pressure drops.

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An herbologist told me a month ago to try Ironbound island seaweed, especially Dulse. I haven't had blood volume issues in over a month! It's made me feel so rejuvenated and a lot less bloated than table salt!

YES, I use DULSE too- North Atlantic seaweed, from the healthfood store. I love it because it doesn't taste fishy- I tried all kinds from the Asian market, and none are as tender and mild.

Also I drink V8 for the sodium- about 10 times the salt in gatorade, and the Potassium which is equal to 2 bananas, plus 3 g protein and fiber.

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