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Anyone Seen Anything Like This?


Pianist
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I'm having trouble with fluids, that's for sure. In retrospect I can see I've been dehydrated my whole life. Starting about 1.5 year ago the dehydration started causing severe problems with my eyes and brain. Two months ago a doctor put me on Desmopressin, thinking it was Insipidus and it made me feel like superman, many lifelong problems disappeared along with the recent severe problems, but symptoms have come back over the past 3 months - like my body has adapted to make me dehydrated again. Before putting me on the medication, the doctors thought it was wierd because my electrolytes were balanced, which they shouldn't be with Insipidus.

I'm starting to suspect I'm hypovolemic, total balanced fluid is low. Has anybody seen anything like this? Is anyone out there hypovolemic? How can you test for it? Have you found ways to fight it?

Thanks.

(P.S.: do you guys use "tricks" to hydrate, such as adding salt or using salt pills?)

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I'm both hypovolemic and anemic. I was tested for it at Vanderbilt university, but I know they can also test for it at Johns Hopkins. The test is uncommon, and I'm pretty sure only a few university hospitals do it.

As for "tricks" I've learned to stay hydrated, I wish I had some. I just drink lots of water and eat lots of salty food. We're waiting to see how the lyme treatments work for me, but in a few months if I haven't improved we're going to try Procrit injections, which can boost red blood cells.

Some people get IV fluids on a regular basis for their hypovolemia. However, there are many risks to having a port or PICC line. I was offered a PICC line, but have been reluctant to get one because of the risk of infection.

However, some on the forum have had good luck with daily infusions, so it's really a personal choice.

Good luck getting the hypovolemia diagnosed. I think talking to your doctor about testing might be a good first step :(

Cheers,

Lauren

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How exactly do you manage electrolytes with suppliments?

I'm currently attempting to retain more fluid by using more salt. I'm putting about a teaspoon extra salt in each 20oz bottle of gatoraid, and drinking about 1L of pedialyte a day. I've been aiming for about 3L of fluid in a day. If you salt eating more salt will you're body reatin more fluid? Is this temporary (will the bodies metabolism start to adapt and get rid of more salt?)

Thanks!

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Sometimes when people are low in necessary fatty acids (omega 3's, especially) the cell membranes are weak and fluids are harder to stabilize with just electrolytes. Also, the mineral silicon sometimes helps hold fluids in the tissues. Proteins are required in the bloodstream to hold fluids inside the vessels at a proper level.

Good luck with your symptoms. I hope you get some answers.

OLL

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Guest tearose

Pianist,

The way I supplement electrolytes is through a pre packaged powder intended for infants and children when then are dehydrated. This is a very low and balanced way for me to add and access how I feel and limit or add more if I still have symptoms. If I am sick in bed with a fever I will get the liquid already mixed version and add a packet to that...

I guess since I have had a long history of dealing with this, I usually have a sense of how much is enough.

My pcp made me add a supplement called slow-mag..it is a magnesium chloride tablet. We need to have magnesium in us to be able to absorb potassium.

take care, tearose

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  • 2 weeks later...

For those of you who use salt:

1) Wont your body just adapt and get rid of more salt?

2) How much salt can you safely have in a day? or if your body is getting rid of too much does it not matter?

I've been putting 1/4 - 1/2 teaspoon of salt in a bottle of water or gatoraid several times a day, and I can't help but think this is doing something horrible to my kidneys.

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