redoctober Posted April 28, 2011 Report Share Posted April 28, 2011 I'm not sure what to make of my BP changes in the morning, so I wanted to throw it out there to see if anyone has a similar experience. When checking my BP in bed immediately after waking up this morning, I noticed that it was 130/45 (HR 62). As soon as I stood up, my BP changed to 112/70 (HR 102). I just started Florinef last week, so I'm not sure if that has something to do with it.Does anybody have a similar experience or know what this means? Any input is appreciated... Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 28, 2011 Report Share Posted April 28, 2011 Isn't this Orthostatic Hypotension - if BP drop more than 20 points standing? I would think Florinef is supposed to help with that - not cause it. I could be wrong? Did you have tilt testing done? This should have shown OH. I would test it out a few more times and see if it happens a lot or if this was just a rare occurence. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 28, 2011 Report Share Posted April 28, 2011 Yes, that's know as orthostatic intolerance or ortho. hypotension. You would need more data to firm up that diagnosis, though. As Naomi writes, a tilt table test would give you a diagnosis. With POTS, usually when you go from laying to standing your BP stays about the same and your HR goes up at least 30 points. With orthostatic intolerance (which I have), your BP will drop by a significant amount and your HR will go up at least 30 - if not 60 or more - when you stand. Be very careful when sitting up or standing from a seated or laying position.Florinef helps your body retain salt, so it keeps your BP higher. I think you should be feeling the effects of the drug within a week or two....someone correct me if I'm wrong, because I could never tolerate Florinef.Please feel free to personal message me if you have more questions. Have you had a work-up with a dysautonomia specialist yet?Cheers,Jana Quote Link to comment Share on other sites More sharing options...
redoctober Posted April 28, 2011 Author Report Share Posted April 28, 2011 Thanks for the responses. I guess it's the odd supine pulse-pressure that troubles me. Florinef started to normalize things last week, but I needed to back-off my dosage due to headaches for a few days. I'm trying to titrate back up now.Regarding a work-up, I seem to be falling between the cracks. Endocrinologist refers me to my PCP. PCP refers me to the Cardiologist...who does a full workup (all normal) and prescribes Florinef. Meanwhile, I'm very symptomatic of something and doing my best just to make it through each day. Quote Link to comment Share on other sites More sharing options...
mwise Posted April 28, 2011 Report Share Posted April 28, 2011 Hi Redoctor,Did the Cardiologist do a tilt table test? I am in agreement with the others-this will diagnose Orthostatic Hypotension which is a significant drop in Bp (20-30) from lying/sitting to standing for 3 minutes. I can go from 130/80 lying/sitting to 70/50 standing for 3 minutes, which I just experienced last week at my Neurologist's office. I had a positive tilt table test along with an abnormal QSART which gave me my diagnosis. I am on both Mestinon & Midodrine for it. I wasn't able to tolerate Florinef-like you I had terrible headaches along with extreme fatigue & weakness, high anxiety levels, my bp didn't go up & my heart rate was racing all the time. I would see if you can't get the Cardiologist to order a tilt table test or make a referral to a Neuorologist or someone who specializes in Dysautonomia. I live in Ohio and would recommend Dr. Shields (My Neurologist) at the Cleveland Clinic and/or Dr. Blair Grubb (Beth his NP)-Toledo Medical Center. Hope this helps. Quote Link to comment Share on other sites More sharing options...
redoctober Posted April 28, 2011 Author Report Share Posted April 28, 2011 The Cardiologist performed a 30-day Holter, Echo, and stress test...all of which were normal. He did mention the tilt-test, but only if the stress test was abnormal. I'll ask him about the tilt-test...to see if I can convince him to order it. Quote Link to comment Share on other sites More sharing options...
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