GeneChat

Hyperadrenergic POTS / Mast Cell Activation Syndrome


#1

Hello! Has anyone here been diagnosed with hyper-POTS and/or mast cell activation syndrome? I’m working with an immunologist on the MCAS, but have been unable to find a doctor familiar in hyper-POTS (my blood pressure increases (instead of drops) while standing…and only with standing. I have perfect blood pressure when sitting which is what I’m always doing when I have my BP taken). I visited Stanford’s dysautonomia clinic and the doctor I saw there only seemed to be interested in POTS with syncope, which I do not have since my blood pressure gets high instead of crashes. I believe my mother has also suffered with these two syndromes, although they were always diagnosed as something else. They were triggered for both of us after surgery for my mom and for me after I was very sick and diagnosed with H-pylori. I understand it’s believed a mutation in SCL6A2 may be the cause of Hyper-POTS. I’ve run a variance report in Livewello showing some heterozygous mutations, but I’m not certain exactly where the mutation shows up in that gene that’s associated with Hyper-POTS. Anyone else? Thanks!


#2

I just have a POTS diagnosis but I also suspect hyper pots too. My blood pressure also goes up when I stand up… I haven’t had any luck finding a doctor to subtype my pots ethier though. I hope you have some luck figuring it out


#3

Have you had a tilt table test?