dianaD

Thank you!

Thank you everyone for the suggestions! We have two kids, 7 and 8, and I'm not sure if we'd fly or drive. Frankly, both seem kinda hard right now.... We live in Texas, and it is HOT here, so going north sounds great. The spas sound wonderful, too. Thank you for your suggestions and for giving me encouragement that a vacation IS still possible!

I've been taking Lunestra, and it usually works well for me. The ambien was great for falling asleep, but didn't keep me asleep, and Lunestra usually does. It tastes kinda nasty, and sometimes I feel a bit out of it the next day, but all of that is okey dokey with me.! I hope it works well for you!

Shortness of breath has always been one of my worst and most persistant symptoms. Early on, I felt like my breathing was partially paralyzed, and spirometry reflected that. I feels now (months later), like I am breathing through a straw most of the time, and that something is restricting my lungs to keep me from getting a full breath. Pulmonary/exercise tests show some abnormalities, but it's not "too bad". What is interesting, is that if I get VERY COLD and stay cold (like my nails are blue), I can breath so much better!!!! So, I do believe it is something vascular, they just don't know what. It is very reassuring, though, to have it better, even if it is an isolated time. It shows me that everything has the potential to work. BTW, I have much more trouble breathing while lying on my left side, next worst is my right side, easiest is my back. You may want to check out if any position helps you. It seems paradoxical, but after I exercise (recumbant bike), I feel a little more on top of the breathing, too. So, even on kinda yuck days, I at least TRY to exercise a little. Hang in there. You are not alone in this. My doc at Mayo said that he's had a couple of patients who needed to be taught how to breath again!

Hi everyone, I've started seeing a councelor to help me cope with all of these changes in my life and I've tried to describe what it is like to have one of these autonomic storms. Not just the physical (tachycardia, blood pressure goes crazy, difficulty breathing, chills, you know), but also the way they FEEL (like I've been poisoned) and how they affect me emotionally. Can you help me describe what you go thru during and after these horrible episodes so that she knows it isn't just me? Thanks for your help!

Hi all, I've had POTS for almost a year now, and would like to consider going on vacation with my husband and 2 kids. I have orthostatic problems still, need to exercise, and of course, can't tolerate heat. Does anyone have any ideas or places that worked for them? Thanks!