I have been suffering with POTS for a number of years after diagnosis of everything from fibromyalgia to anxiety disorders.. Anyway, just wondering, my Pots symptoms seem to run in cycles, better then awful a few days, then better. Anyway, I am going though a few days of terrible and wonder a couple of things from those of you diagnosed with POTS. My bp is always around 105/68 with a pulse of 60-70 sitting, I then stand up and boom 78/56 pulse 129, well I took it last night a number of times while lying down, and it was about 105/56 with a pulse of 42. Its crazy to me that my heart is only around 40 while resting/sleeping then jumps to 130 by simply standing.
I have just been trying the high salt, lots fluids, now compression pants (not a significant help) because I don't want to go on Florinef. Is there anybody out there that has comments that does use Florinef- has it helped you? Side effects? It scares the crap out of me reading the side effects, tells you to get a medical ID bracelet...plus your body becomes addicted to it after three weeks and is hard to wean off of according to a doctor friend and literature. Really like to hear from others on this.
Thank you so much,
Last edited by moderator2; 08-11-2012 at 08:41 PM.
Have you had an endo workup for Addison's disease, which causes POTS by two mechanisms-lack of glucocorticoids and lack of mineralcorticoids. This seems crucial to do, as your symptoms are severe and show you are very dehydrated. Serum aldosterone levels should be done as well as serum cortisol levels. Both of these hormones cause your kidneys to conserve sodium chloride and water. Without them, you are dehydrated, which is what causes the orthostatic BP and P changes. Fluorinef is simply a replacement for the mineralcorticoids lacking when your adrenals are not functioning. This is essential to keeping your BP up and preventing you from fainting. You can safely replace deficient hormones as long as the dose is right and electrolytes, water balance are monitored. Increasing salt intake won't help much if your hormones to conserve that salt are missing. Severe potassium elevations can occur, causing heart arrythmias. You need a good workup for Addisons and shouldn't be driving until this gets corrected, as you could pass out at these low BP's.
Thank you, I have never passed out, I am almost positive these tests must have been done, they spent three months testing me but will bring it up to my doctor or should a specialist be consulted? Thanks for info, so much out there, so many ideas, seems like they dont really know anything for sure. Dan
These are special tests that are not part of routine workups. Most general Drs do not order them, but certainly can. Endocrinologists do and unless you have seen one, there is very good chance you have not had these checked, and that truly could be the key to your problem! Cortisol levels are checked at 8:00 AM and 4 PM, and aldosterone levels should be checked after you've been upright for 4 hrs., so both could be checked at 4 PM after not lying down from noon to 4:00.