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Any test recommendations?


JP0324
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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! 

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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? 

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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.

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@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?

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