Claired Posted March 9, 2015 Report Share Posted March 9, 2015 Improvement is possible! I know it's an uphill battle. If you can, daily aerobic exercise, esp. walking, does improve POTS in many people. Everyone's different. It's important to start small and increase very gradually. I began almost bedridden (able to get up and use the bathroom or make a sandwich but not much else), and I began at walking 10 min. a day, and increasing 1 minute per session a week, so that within 6-8 months I was walking 30 minutes a day and had much fewer episodes. I think making it regular, and exercising even when we feel bad (if it's safe of course), is key. I noticed when I missed a day I began having shaking episodes and feeling awful. The first few months you begin exercise you will feel poorly (I honestly thought I was dying!), but after that, it CAN get better. <3 Walk/exercise with a buddy who can cheer you on/take you by the arm when you're dizzy.There are lots of little "tricks" you can use to get through it. Quote Link to comment Share on other sites More sharing options...
Afpayne Posted March 10, 2015 Report Share Posted March 10, 2015 I got diagnosed with POTS in December of 2014 following a non descript stomach viral infection that resulted in a 15% body weight loss due to severe dehydration a few months earlier. My veins had all collapsed and they had a hard time getting an iv started. I got sent to a cardiologist who luckily was young. But prior to my appointment I did my homework and insisted on a tilt table test. I got LUCKY and I know it. But here I am 6 months after my diagnosis and I've seen specialist after specialist and were just now getting a neurologist in on the treatment. The only thing we've been able to do is get the tachycardia somewhat under control with a beta blocker. And that's it. I have good days and bad days. I still haven't figured out where my max is for activity, I miss biking and swimming. My phd is on hold because I'm at 80% bad days right now. The adjective that describes life is frustrating. A good day of housework and Steak dinners although amazing put me in bed the next two days. I hate napping during the day but find myself napping all the time now. Food? Ha I'm rarely hungry and have lost enough weight my doctor is getting alarmed when I come in and have lost another 4 or 5 pounds. This isn't close to my idea of fun. Luckily I have a really good friend from grad school who had had pots since she was a young teenager and had s viral component as well. I'm also starting to work with a physician I'm familiar with at our local medical school who is working on finding a possible autoimmune aspect to pots. Oh well. All for the betterment of science. Now back to watching frozen for the trillion time! LET IT GOOOOO! Quote Link to comment Share on other sites More sharing options...
Nymph Posted March 10, 2015 Report Share Posted March 10, 2015 Mine started in 2010-11, although may have had some symptoms before that. Mine has gotten better and worse over time. This last year it has been at its worst yet, though, so I think it's getting worse overall, but it's hard to tell. It also varies a lot over the month. Quote Link to comment Share on other sites More sharing options...
mountain girl Posted March 25, 2015 Report Share Posted March 25, 2015 I felt like the first one to three years were the worst. I have days where I feel really bad, but I have learned more how to deal with the condition. Quote Link to comment Share on other sites More sharing options...
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