I was evaluated by Dr. Jaeger at Cleveland Clinic in Fall 2009 and have not been back for a follow up visit. I live 8 hours away and cannot drive that far, so would have to fly and stay in hotel. Has anyone been able to do followup by phone with CC and is it worthwhile?? I am not even sure what med changes I could do anyway.... I am on midodrine and fludrocortisone. I would not increase my fludrocortisone b/c I now have osteopenia (sp) and I cannot take many other POTS meds b/c of my asthma.....
My local cardiologist has a few POTS patients but has acknowledged or rather "complained" to me repeatedly that it is a "very frustrating" illness for him to treat. If he thinks POTS is frustrating to treat, he ought to try living with it! So it is hard for me to get enthused about seeing him UGH.
On a very positive note, I can now exercise for the first time in ten years! Dr. Jaeger at CC strongly encouraged me to exercise to build up leg muscles in particular. I was very afraid to b/c of many past failed attempts. I started two minutes on an exercise bike going so slowly that the bike did not even register that there was anyone on it. I increased my speed and time VERY slowly over several months. I am now up to 30-35 minutes on the treadmill and can even use some leg weight machines! On my worst days, I do not exercise. It is working out pretty well so far, except for during the very hot days this summer.
I would most definitely have the phone followup, I think it is so important to take advantage of just checking with your doc every now and then. They may ask you about particular symptoms or reaction/nonreactions to meds or exercise, etc. Especially since your local doc had expressed his concerns.
And nice job with exercising. Getting started is the worst, which is why I avoid it. :)
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