JP0324 Posted January 18, 2019 Report Share Posted January 18, 2019 I have been diagnosed with POTS and Chiari Malformation. I recently saw a rheumatologist and she said vitamin D was low. ANA is negative and DSDNA is negative. Lately I have been feeling awful. I have not really had any testing except a tilt table test. I take Florinef and Prozac To help with the POTS. I have a dr appointment Monday to talk about medicine and seeing if we need to switch, increase etc. can you recommend any test to ask for? I do not know what type of POTS I have. I also do not sweat very much. I have excruciating body pain. The rheumatologist was supposed to be talking to me about fibromyalgia, but I was not confident in anything she said. Her answer was to “take a tylenol”. The Flares have been so frequent lately thank you! Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 18, 2019 Report Share Posted January 18, 2019 Vit D supplementation could improve your symptoms - it did for me. But you have to initially go on prescription strength loading dose to bring the levels up - daily OTC doses are not enough. - Regarding testing - what did the TTT show? Quote Link to comment Share on other sites More sharing options...
JP0324 Posted January 19, 2019 Author Report Share Posted January 19, 2019 1 hour ago, Pistol said: Vit D supplementation should improve your symptoms - it did for me. But you have to initially go on prescription strength loading dose to bring the levels up - daily OTC doses are not enough. - Regarding testing - what did the TTT show? I did not “pass” the tilt table test. I did not pass out but my heart rate went up to 150’s and did not go back under 100 until I was laid back down. They said I did for sure have POTS and to treat it with Florinef (.05 mg/day) and lots of water. I still have times when my heart has gotten as high as 177 and as low as 40. It’s a constant fluctuation. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 19, 2019 Report Share Posted January 19, 2019 @JP0324 - from my own experience it sounds like you ae not well controlled with medication. Your HR should not still run that high. Is your cardio aware of you still having these symptoms? In my case I had to try many meds before we found the right ones - sometimes there was tweaking, sometimes a change in meds. Do you FEEL any better? Quote Link to comment Share on other sites More sharing options...
JP0324 Posted January 20, 2019 Author Report Share Posted January 20, 2019 I do not feel any better! I require lots of breaks to sit down/lay down. I am often still short of breath and dizzy. Quote Link to comment Share on other sites More sharing options...
CarolS Posted January 20, 2019 Report Share Posted January 20, 2019 Not sure what country you're in, but if possible, it would be best to try to get to an autonomic specialist. Someone who has a thorough understanding of what's going on with you. Quote Link to comment Share on other sites More sharing options...
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