JP0324

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. 

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.

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! 

Yes!!!  My husband is amazing.  He helps when I can't do what needs to be done.  I couldn't make it through this without his support. 

Thank you!!!!   This is all relatively new to me.  I find it amazing (and scary!) how many different symptoms you can have.  

Hello!  Just a little background on me.  I am almost 33.  I was diagnosed in fall of 2016 with Chiari Malformation.   Then in October of 2017 I was diagnosed with POTS.  My cardiologist prescribed high salt diet, lots of fluid and Florinef.  I take 0.1 mg daily.  In the last week my heart rate was staying over 140's so cardio upped Florinef to 0.2mg.  The first day I did that, my blood pressure was way too high (196/168) I ended up going to the ER to only be told there is no way my machine is right.  Dr totally blew me off. Sent me home without doing anything.  Cardio told me the next day To go back to 0.1 mg Florinef and prescribe Propranolol (beta blocker).  I have not started the Propranolol yet because now I am the other end of the spectrum.  Blood pressure is running 96/60 and heart rate is averaging 60-65.  I am sick. All flu symptoms and fever but rapid flu test was negative.  I am supposed to see my cardiologist on Friday Feb 9th.  Any suggestions on what to ask for? Or what I should do?  My cardio is not very familiar with POTS and has referred me to Vanderbilt Clinic.  They are working on trying to sort out insurance and see if I am accepted.  I am just scared.  I have been having so much anxiety this week because of this.  There are nights I can't even go to sleep.  I have 3 kids and I can't even get up and enjoy things with them.