Megan

I am praying! Meg

The pediatrician at Mayo who decided I needed a TTT was amazingly helpful, although I had just turned 18 the week before my week at Mayo so there wasn't a way to continue care there. And I can't remember his name. Dr. Grubb has been amazingly helpful as well. He explained everything so well and really cares about his patients. It's nice to know that some doctors are actually like that! Meg

I'm not on a beta blocker, but I wanted to wish you good luck with the new med! Meg

I find that if I get really dehydrated I need to get an IV because just salt and fluids won't help me catch up. After the IV, I push salt and fluids to try to keep my level normal. I need an IV about every 6 weeks, anyway, but if something dehydrates me, I definitely need to get some help catching up. Meg

I also thought your post said bananas! Oh my, is my brain fog bad today... I hope you find something that helps you and isn't too expensive! Meg

Whenever I have to fast for a test, I make sure that someone is around to take care of me (usually my mom) as I know that I'm going to have to stay in bed and usually borrow a wheelchair to get to and from the car, etc. I have a lot of difficulty. I have to make sure I eat at the last minute before I have to start fasting and as soon as I'm done with the test. Meg

I have heart pain fairly often when my POTS gets bad, but my dr has reassured me that it's nothing to worry about. It does hurt a lot and sometimes I end up doubled over in pain, but it passes. I've been told part of it is from not enough blood getting to my heart because it's pooling in my feet, so propping my feet up helps with it a lot. Meg

I'm a bit foggy right now, but I wanted to mention that when my midodrine dose was too high, I did have some problems with fainting. Meg

Good Luck! I hope you get to figuring things out to make you feel better! Meg

Hi Hannah! Your high school experience sounds a lot like mine did. I wasn't diagnosed until almost the end of my senior year. It was awful! I'm halfway through college now, though, and studying in London (although I'm having a bit of difficulty adjusting to the time change with less sleep and such...) You'll find some good support here! Meg

I drink a combination of things so I don't get sick of any one; I just make sure to check the sodium content as that's a big way I get that in. I've tried Crystal Light, Propel, Gatorade and other drink mixes and all of them seem to work for me. I haven't really noticed weight gain from gatorade, but sometimes it just feels too heavy to drink, even when I water it down. Meg

I hope you go to the doctor soon! I've never heard of that symptom, but I think you should definitely have it checked out as soon as possible. Hope you're doing okay. Meg

I'm a bit late, but Happy Birthday! I'm glad it was a good one. And thank you for sharing your story. I really needed some encouragement today. Meg

Ernie-what kind of rehab do you do? Meg

I hope she continues to improve! Meg

I don't know if this is relevant at all, as I am not sure what kind/what extent of damage you have with your spine, but could you benefit from a chiropractor at all? Other than my completely insane autonomic system, I don't have nervous system problems, but I do get extreme headaches at the base of my neck/back of my head, and chiropractic care relieves them. I'm sorry if this isn't helpful, and I hope that you figure out how to manage your headaches! Meg

Good luck with the test! Meg

While I'll be in a dorm and unable to light a candle, I'll take the moment to stop and send up prayers. Meg

My feet rarely become dark from pooling when I am lying down, but when they do, I find that propping my feet up helps bring back normal color, and it makes me feel a little more clear-headed, as dark feet almost always mean I feel foggy. Meg

Hi Carly! As a fellow college student (I'll be starting my junior year in the fall), I understand the stress! I have been diagnosed with POTS (...that doesn't make college any easier!) and after a few years of being treated for being psychotic (and reacting very badly to many meds...) I'm doing pretty well. I'm actually leaving Friday to study in London for six weeks! I guess I just wanted to let you know that there is hope. I can do so much more than I could a few years ago. I didn't think I would be able to graduate from high school, but I'm in the honors program at my university and thriving. I hope that at some point you do find a doctor who will support you (could you try a different physician to see if someone else will listen?) but the support here will help, too. Meg

I've never been told an actual limit, just to eat as much salt as I can stand, which isn't a whole lot, so I don't worry about going too far. I'm 20. Meg

I didn't realize that it was possible to contact Bev by e-mail? That might make my life easier.... Meg

I hope things start to look up for you and Sara! In my thoughts, Meg

I've never been able to run more than a 10 minute mile even before my POTS hit (I'm 20 now) but like the others said, if she feels her body can take it, go for it. It's just really important that she stop if anything feels wrong. Does her doctor have an opinion either way? (by the way, I too have asthma, which always affected my running even when I was in great shape) Meg

Occasionally I will feel faint when I get stuck for the IV, but I've never actually passed out. I only get saline IV's. I don't know if that makes a difference or not. Meg