Schorobi

Went in to get my lytes checked on florinef and my random glucose was 46, but no symptoms. When I have felt really sick from POTS, ( autonomic storm type symptoms) my glucose is always 200's

Yes, I have also gotten that the 3 times I have been at my very worst from POTS

Same thing happened to me at onset of POTS--rapid weight loss from my usual 103# (5-5") to 97# in 2 days which i believe was all volume. I also completely lost my appetite, had nausea and early satiety (felt full quickly). I drank 3-5 cans of ensure plus daily so I would not lose any "real" weight. As I have improved with Dr Levine's protocol, high Na diet, florinef my appetite has come back and the nausea and early satiety resolved.

Sue, the patch you got was most likely scopolamine, but it is not available OTC.

Julie, go to potsrecovery.com and you will find the contact info for dr Levine's staff. If you have your physician contact them, they will send you the protocol if you qualify. Takes a few weeks to hear back b/c they do the worldwide registry on their own time. This protocol is difficult but has produced amazing results for many people. I started to feel meaningfully better at the end of two months ( I felt consistently safe to drive) and now in the fouth month I feel great. Annaliese, I tried propranolol for about a week very early on and didn't notice any benefit, but i think it's worth trying both.

If you are allergic to florinef you might discuss ddAVP with your physician (one of the "things that help" on the dinet info page)

Annaliese, I don't understand this either...I have read however that increase sympathetic activation causes your body's volume status to be reset. I no longer have the polyuria on the combination I mentioned on the previous post and my weight has been stable and nearly back up to my baseline.

Annaliese, dx hyper POTS. my symptoms were tremulousness, dizziness, fatigue, nausea, brain fog, BP spikes (highest to 177/121...my BP used to be always 100-110/60-70), flushing, rapid weight loss 103-->97# in 2 days at onset due to hypovolemia (my clothes fit the same). I am also on month 4 of dr Levine's protocol and a very high salt diet. With this, I feel nearly normal, but still have BP spikes just not as bad

I get the "sparks of light" too, but only in the shower

I take florinef and clonidine which has been a great combination for me. I have significant hypovolemia and hyperadrenergia. For me, the clonidine patch is much better...too much BP fluctuations with the tablets which are much shorter acting than the patch.