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Receiving fluids for POTS/dysautonomia - What do I need to kno
Hi All
I have been diagnosed with POTS and Neurally mediated dysautonomia
My GP has suggested that I get 8 liters of IV fluids a week - 2 liters 4 times a week. I have a PICC line for this,
The fluids are helping my mood and anxiety, but I seem to feel much weaker. Does that make any sense?
Should I be having lab work done if I am getting 8 liters of IV fluids a week?
Thanks
Naomi
I have been diagnosed with POTS and Neurally mediated dysautonomia
My GP has suggested that I get 8 liters of IV fluids a week - 2 liters 4 times a week. I have a PICC line for this,
The fluids are helping my mood and anxiety, but I seem to feel much weaker. Does that make any sense?
Should I be having lab work done if I am getting 8 liters of IV fluids a week?
Thanks
Naomi
Thanks so much for your reply.
Just having this support on line is amazing!
I have a picc line, my husband (a hi-tech manager - not a medical guy at all!!) has been hooking me up to the fluid, and once a week a nurse changes the dressing and checks for infection. I will take your advice and ask her to check for fluid retention (I don't think that's a problem). I think it makes sense about the potassium - as in the past, when I was taking florinef, the potassium was down and I started to add a potassium supplement. I just made an appointment to see my doc to get the blood work.
again - thanks for taking the time to answer
Just having this support on line is amazing!
I have a picc line, my husband (a hi-tech manager - not a medical guy at all!!) has been hooking me up to the fluid, and once a week a nurse changes the dressing and checks for infection. I will take your advice and ask her to check for fluid retention (I don't think that's a problem). I think it makes sense about the potassium - as in the past, when I was taking florinef, the potassium was down and I started to add a potassium supplement. I just made an appointment to see my doc to get the blood work.
again - thanks for taking the time to answer
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I get fluids for my dysautonomia through a mediport in my chest, so I'm definitely familiar with this one! I'm surprised to hear you feel weaker now that you're getting IV hydration. I'm a bit stumped as to why that might be. The only thing I can think of is that it's possible your potassium levels are low (hypokalemic) which the IV fluids certainly won't help. When was the last time your doctor ran basic blood tests on you (CBC and Chem7)?
The Chem7 can show if your elecrolytes are out of balance, which is my first guess as to why you might be feeling weak like that. If that's not it, maybe anemia? Beyond iron deficiency or low ferritin ... your guess is as good as mine! Basically, weakness is the opposite of the usual effect from the IV fluid treatment in our disease, so you need to tell your doctor that you're getting that symptom and ask to have some bloodwork done to investigate.
As to your question about specific bloodwork needed with IV hydration therapy, no, you don't need extra monitoring of your blood levels per se. Your doctor should be checking that every year or twice a year regardless, just because of your diagnosis, and that should be plenty.
Are you getting the fluids at home from a home health nurse, or are you going to an infusion clinic to get them? A nurse should be able to monitor for any issues with the fluids (such as excessive fluid retention) that need to be brought to the attention of your doctor.
I hope you get to the bottom of the weakness issue soon, so you can enjoy the full benefit of the hydration therapy!! It can really improve your quality of life!