New POTS Diagnosis/Non Medication Management

Posted by kaitlynng @kaitlynngist, 6 days ago

I am a 21 year old who was just diagnosed with POTS. I have not fainted but have been somewhat dizzy most of the time and then it sometimes flares up and gets far worse. My heart races without significant exertion and when I go up the stairs (before starting medication) hit 150-160 bpm easily, I hit 200bpm on my heart monitor. I feel like I can't regulate my body temperature, feeling like I go hot to cold all the time, though my temperature itself never changes. I have developed headaches more frequently. Labs also showed I'm anemic.
My cardiologist has told me POTS is difficult to manage and we kind of have to throw everything at it and hope something works to get it under control. Currently, I am supposed to be drinking at least 3L of water, although many days, I am drinking closer to 5L. I have also been wearing compression socks up to my thighs. My salt intake was supposed to be at 5g/day but was just upped to 10g/day. I am going to start POTS PT hopefully in the next week. I have also been put on metoprolol ER 12.5mg at night. I've been monitoring my BP. Baseline I run 105/80 ish and now with the metoprolol, I run 90-95/70-75 in the mornings and increase back up to my baseline by mid to late day. I am also now taking iron 325mg and vitamin C 500mg every morning for the anemia.
I have not been seeing any improvements with these changes. What lifestyle changes have people made to get POTS under control? What do you do to manage days when you wake up and you're worse dizzy than normal? Any advice to get my symptoms under control would be greatly appreciated!!

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

I know a lovely 17-year-old young lady who was diagnosed with POTS about 4 years ago. After many different treatments, she is now much better based on her treatment about 2 years ago from CFNC, Carolina Functional Neurology Center. According to her mother, a healthcare professional, CFNC patients come from all over the US. I also understand from her mom that CFNC offers a free 15-minute consultation to be sure they are a good fit. Their website is: https://www.carolinafnc.com
Hope this helps anyone dealing with central and/or peripheral nervous system issues. Believe me, I have no interest in CFNC other than to help those with these miserable disorders.
Regards,
Sagan

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