Leann

I have been diagnosed with pots after mild symptoms for years and severe symptoms last year. Took more than a year to get a diagnosis despite being a physician myself. One doctor tried to convince me repeatedly to take zoloft for anxiety. Now the symptoms are better after I stopped breastfeeding and doing pots exercise program but feel like every month it’s a new symptom. Recent hand swelling in the morning that takes an hour or 2 to resolve. It was worse when I was taking magnesium. My theory is that blood pools in the feet and ankles during the day when upright and returns to circulation during the night when supine hence fluid redistribution during the night and places we notice swelling are the face and hands.

Dear Conrad_hemsley, If your symptoms are worsened by beta blockers/propranolol, you may have POTS related to mast cell activation syndrome, which is known to worsen with the use of beta blockers. I'm not an expert, but have recently been diagnosed with POTS several months ago after having very worrisome symptoms for about a year and a half. I'm a physician myself and have devoted a lot of time and energy researching POTS, its various forms and by the time I saw the POTS expert in my area, seemed to know as much or more about the various forms of POTS. She said she didn't 'believe' in the MCAS for of POTS, but it's been in the literature about POTS for some time. There are various ways to test for MCAS, but one of the ways to prove someone has that form is that symptoms improve significantly with medications that stabilize mast cells, such as Benadryl/diphenhydramine and H2 blockers such as Ranitidine/zantac. In the U.S., both these medications are available over the counter and very safe, so you might talk to your doctor about this or simply try 1 or both of these medications during an attack and if you improve significantly would point toward MCAS form of POTS. Also, have. you had your ferritin level measured? There certainly is a subset of patients who have relative iron deficiency (not necessarily with anemia) that is reflected with a low ferritin (<50), that significantly improve with IV iron when getting ferritin levels in the 75-100 range. I have had a very low ferritin level ever since pregnancy, but have not been able to get it up with oral iron repletion. There was a clinical trial enrolling for adolescent patients with POTS and treating them with IV iron but it closed early due to low recruitment. Unfortunately, as I think it is a promising treatment for POTS, maybe for the majority of patients. https://www.prohealth.com/library/iron-man-a-young-persons-pots-me-cfs-recovery-story-pt-i-6672 Leann