Between A Rock And A Hard Place

[P SUDIK]

Hi everyone ,have not been on for awhile,but wonder if anyone else has CHF and Pots?

I am trying to do a balancing act with fluids,up until about a year ago(before I had CHF)I drank tons of water and gatorade,which helped with Pots,also ate alot of salt.

Now I have to take a water pill as needed to get the flluid out of my lungs, then I have to load up on fluids,I am so weak,and nauseated . What helps

Pots hinders CHF

Anyone have this problem? Or anyone have any suggestions?

Thanks Pat

[Guest tearose]

Similar challenge with a slightly different cause...

I have unilaterial (left sided, arm and leg) lymphedema and POTS. I also have had periodic spells of a small amounts of pericardial effusion. So I must limit sodium too! I have learned how to "feel" the correct amount of sodium is good by how my arm and leg feel. My neuropathy will increase in my arm and leg if I have too much sodium and my chest pains will increase if I am more fluid filled. I suppose you are now learning how that feels to you.

Anyway, the best I can suggest is taking the electrolytes in small doses and seeing how you do. I have to manage potassium and magnesium because when I have increased hr or chest pains of a certain type I just know I need electrolytes.

Since I do no meds, I rely on behavior modifications like reasonable activity and reasonable rest and definitely compression garments.

I need a nap right now but if I think of anything else I'll post more.

best regards,

tearose

[juliegee]

No answers, just hugs:

((((((((((Pat))))))))))

Feel better-

Julie

[Mrs. Burschman]

That's tough! I'm sorry. I'm going to echo Mack's Mom.

((((((Pat)))))))

[Maxine]

This is a tough position to be in---I can't imagine.

I'm sorry I can't help.

Hopefully your doctor can help you find the right balance.

Sending you a BIG HUG.

Maxine :0)

[potsgirl]

Hi Pat,

Yes, I'm in the same boat that you are. I've been in and out of CHF due to cardiomyopathy and I've recently added diastolic dysfunction to the mix. It's so difficult because with POTS you're supposed to consume so much salt, but with the heart issues salt is a no-no. I also have OI so I can't take any meds that would bring my blood pressure down, and I'm a fainter. I couldn't tolerate Florinef or Midodrine, so right now I'm not on any meds, but have a pacer for my bradycardia. Have you ever had carpal tunnel syndrome?

I'm going to Mayo Scottsdale in about two weeks to see if we can figure something else out. Have you been to a specialist yet? Do you have low or high BP, or both? I know how frustrating this is! I was diagnosed with cardiomyopathy about 2 1/2 years ago (at Mayo) and with POTS about 10 months later. I'll certainly let you know what I find out when I get back from Scottsdale.

My best,

Jana

[Maisie87]

rough time.

Thanking you you!

positivel energy your way

xo

Maisie

[bjt22]

I have to take a hefty dose of Lasix daily or I, too, tend to build up fluid. Before starting on it several years ago, I was carrying around nearly 20 lbs in fluid. And yes, it was backing up in my lungs.

Even with the lasix, I still fight this problem...if I'm upright more than usual for a couple of days, the fluid will start building again. So, when this happens, I try to schedule a couple of days in which I can be not-so-upright. I've also found that I get the biggest bang for my buck when I take the lasix and then lay down for a couple of hours to let it work.

I drink ALL the time. I view the lasix as just an aid to help me with the "overflow", if you will. Does being on a diuretic make other problems worse? I don't know. I do know that carrying around too much fluid and having my lungs getting congested causes all of my symptoms to be worse.