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New To Site: Going To Vandy If I Can Get Off Medication


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Hi there! I am new to this site though, I should thank you all because I have lurked around and found some great info this past year. I have had dysautonomia problems for many years now but was finally diagnosed with POTS in 2009.

This last flare that I had in Jan. was the worst! I had never before needed to use a wheel chair but I was lucky that with time, Fludrocortisone, and PRN use of Midodrine and Betablockers, I am doing a bit better. My problem is that I am due to fly(alone) 2 hours to Vandy for research at the beginning of June. I have never had complete dysautomia testing completed before(only TTT) and I really think this will be worthwhile even though my POTS cardiologist kinda blows it off like we should just do trial and error meds. I have had so many questions for years and I want an opportunity to be in a place where doctors actually know POTS/OI...But I guess this is a different discussion...

My concern is that I need to come off the Fludrocortisone and even though they said I could just stop it 3 days prior, I know(just from lowering that med) I will react. Also, I have read that you should always wean off fludro. slowly. So I started taking 1/2 my dosage and now after about 5 days I am seeing really low pressures and high heart rates. I am going to try supplementing more with midodrine but I guess I am wondering how other people have dealt with this problem! I know everyone is different but I just want to know that I'm not alone in this predicament. Any advice?

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HI Clare, welcome to the forum! I think it's great you're taking the opportunity to do extensive testing at Vandy. I was thinking that may be you could get help via the airline your flying with, they often have possibilities to help you get around the airport (by wheelchair or those golf karts). Also may be wearing compression hose and/or abdominal binder could be helpful. Wishing you good luck at Vandy!

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Thanks Chris, that is interesting! I couldn't believe it when my one Doc. said I could just stop. I have been secretly hoping that time would have done it's trick and I would be ok without the med ;)

Corina, thanks for the welcome and suggestions. I will definitely wear my super hero POTS gear! I really do have to look into the airline, I have not flown in years and I certainly not when I have felt this unstable.

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