Pluto

Thanks! That's a great article and answers my questions. I'm so glad to hear others have this too.

Thanks that makes me feel a bit better. My heart rate went from 70's and 80's to 99 and 101. I'm supposed to call my doc back this week.

I have not started the florinef yet, and I bought a bp monitor to see what my bp does. I got home and after resting while sitting it read 117/85. Later it read 111/81 when I first stood up. After standing about 2 minutes it read 140/120 with all of my symptoms flaring. I tried the other arm and it was 153/139. I waited a couple of minutes, stood again and it was 155/131. What is going on? What does that mean? If this is what happens, it seems florinef would be a BAD idea? I know so little about orthostatic intolerance, and my endocrinologist thought my bp was dropping when I stood. I'm not sure what to do. Any advice please?

Hi again everyone. Thanks SO MUCh for your comments. Firewatcher: I'm Pluto - the planet...er whatever! I'm way out there and having an identity crisis! I did start drinking gatorade and noticed an improvement. I just wish I could figure out why my leg is tingling....this is a new symptom for me, and why I feel like I'm going to jump out of my skin. I'm not normally a very nervous person, I guess that is the adrenaline? Momofsara: What are the intolerable side effects that Sara experiences on florinef? Thanks again all, and nice to meet you.

Ok, thanks. I appreciate your input and it gives me a starting point. I'm so new to this diagnosis but finally some of my symptoms make sense! Thankyou!

Hi Everyone, I'm so happy to have found this forum. I could really use some advice. The bottom line 3 questions I have is 1. Is florinef worth trying when my bp drops too low at first, but rises too high after standing 5 minutes? 2. Could my nerve symptoms be caused by my orthostatic intolerance? 3. My bp drops too far when I stand, but apparently then rises too high (from 125 sitting, to 100 standing 1 minute, to 175 standing after 5 minutes....with symptoms galore - PULSE rises to 140+) - my doc called it hypotension, but said he was "confused." That left me wondering if I should even take a bp-raising med. My short story is this....I've had POTS symptoms for most of my adult life.. I NEVER could stand while taking a shower etc.....but in 1998 I got a virus of some kind that caused me to be almost completely bedridden for a couple of years...it felt like my brain had been infected and I had no stamina. After that I slowly regained some ability to be up but it left me disabled unable to work, I crash upon exertion....the amount differs from day to day, even moment to moment. For 10 years, I've lived with this plateau - I pace myself, rest, sometimes go too far, then crash, but recovery time after crash has improved over the years. Dx CFIDS. Until 3 weeks ago. I had a relapse. It was shortly after I got the flu shot. Don't know if that caused it, but I woke up and felt like my brain was swollen again and could barely walk. I had tingling all down my legs, feels like all of my nerves are exposed worse than ever. Very weak. Feel like I will jump out of my skin when I hear a noise. I went to urgent care, they did the lying, sitting, standing bp on me, which I now realize should have been done years ago...and the doc said my pulse and bp RISE too much when I'm standing after 5 minutes. Sent me to an endocrinologist. Endo did my bp after standing 1 minute, and he said my bp DROPS when I stand, pulse races. (I guess it drops, then rises too high as a compensation???) So he gave me florinef. Dx Orthostatic intolerance. Could the nerve symptoms be helped by florinef? Could florinef make anything WORSE, because I can't tolerate worse. I'm extremely sensitive to all meds and am scared to try anything new.....BUT would LOVE to find something that might HELP. So far, I've found nothing to help. THANKS for any advice or experiences with this you can share with me about this. I have done some reading about it, but still unsure.