Daunarenee

Yes I look sick too. Make up helps to hide the dark circles and paleness. I find myself getting super flushed when I get an adrenalin rush and sweaty, then go white with droopy eyes when my blood pressure drops. My friend with POTS also gets splotchy red skin around her chest when her heart is pounding and she turns white. The dramatic fluctuations in blood pressure and heart rate make it hard for the body, I find my blood pools in certain areas like my feet, amd stomach leaving arms and head pale and I get cold really easily! But I am glad to hear your daughter has improved blood pressure. Hopefully her blood volume can increase and she can feel better from that too.

Thank you everyone for your kind welcomes and advice! I will be definitely checking out the DINET website to look for those autonomic centers! And June- so sorry that your daughter is unwell, I would say that florinef is worth a try! My side effects have been mild... Slight water retention for the first 10 days on it then I think my body adjusted. My improvements are much like Anna's! Before florinef I was blacking out almost every time I stood up and I couldn't stand for more then 15 mins. After I took it, I hardly ever black out on standing and I have much increased energy and ability to stand for longer periods of time. I think the increased energy is because my body isn't fighting so hard to remain stable. The only downside is that it wears off around 8pm! But I am still grateful. Looneymom- I am sad to hear about your son, I hope the doctors are able to treat him and figure out how to keep helping him.That's interesting about what your saying about viral loads...I do have really really high ebv titers. I wonder if there is a connection. I will have to do more research. And TCP-sending you positive thoughts, I really hope you get some treatment soon and find a good doctor! Take care and thank you all again

Hello all, I have recently joined this sight to get some support and glean from all your valuable insight. I have been undiagnosed for about 7 years after a terrible case if mono. Since then I have seen countless doctors and been told I was a mystery, a crazy person, and that "of coarse your tired, your a mom!"... But after years if getting progressively worse an infectious disease doctor finally recommended a tilt table test! Passed out within 8 mins, finally something tangible that a doctor can look at and have "proof" that I was sick! Fast forward a few months and have seen a cardiologist to rule out any serious conditions with the heart, stress test was terrible! But Heart looks pretty good! However my blood pressure didn't increase the way it should in a typical treadmill test. Cardiologist said that was typical of dysautonomia! Started on florinef two weeks ago and feel amazing!!! I am surprised since I was mentally prepared to feel like a zombie the rest of my life! Questions are: who manages your care? How did you go about finding the source of your POTS? Right now I have just been diagnosed with generalized dysautonomia and that my tilt table was indicative of POTS. I would love to know what kind if possible, cardiologist said something about low blood volume. As you can see I am uneducated in this, and have a lot of learning to do! Thank you for your time, wishing you all wellness!