My twin sister and I have POTS, cause unknown

[kc_77]

I have a fraternal twin sister and her and I both have POTS. We have been showing symptoms for about 6+ years. We are currently 21, and showed symptoms at first around 13/14. We didn't even know we had it until i looked up why our legs tended to get molten and purple when standing and in the shower. The symptoms we have had are occasional dizzy spells (we've both passed out once) but now we are able to sit down when we know we will pass out. It doesn't happen often, thankfully. The only other symptoms we have are the increased heart rate, tremors, exercise intolerance (exp me) and heat intolerance (me) and i also tend to get tired easily when out and about but we are living completely normal, almost unaffected lives, which we are very grateful for. We are in the process of getting tested for EDS and other connective tissue disorders, because i know that can be a cause and is highly genetic, but i really don't think we have those.

So has any other person has this same experience with having primary POTs running in siblings and families? Also, our maternal grandfather passed away from complications from Lupus, so could we just be susceptible to autoimmune issues? 

Thanks in advance!

[DizzyGirls]

Hi there!!  Welcome to the forum!  I, too, have a 21-year-old, no twins, but another daughter 19.  They became symptomatic about the same age you and your sister did.  Their primary cause of their POTS is Ehlers Danlos, but my mom has Ehlers Danlos and Mixed Connective Tissue Disorder with an overlap of lupus.  So they could possibly have an underlying autoimmune disease, too (highly suspect it in my oldest).  You could definitely have POTS symptoms from lupus.  It affects your whole body, so anything that has that effect on the body could potentially cause autonomic dysfunction. 

Your description sounds all too familiar.  My daughters are at the point now, though, of not being able to live completely normal lives.  They are, however, greatly impacting the medical community where we live and are spreading awareness as fast as they can about Dysautonomia and Ehlers Danlos (which we believe to be the cause of their POTS).  My oldest is currently recovering from multiple spinal fusion surgery (9 vertebrae, to be exact!).  While at Stanford she was the first one asked to share her story in this new "storytellers" program that they are implementing there.  Her story has the potential of making it to the library of Congress!  She was so excited (especially since she is a writer!).  My youngest is an artist, but is just concentrating on walking at the moment.  Her legs just buckle out from underneath her and she falls around 20-30 times a day.  It's exhausting.  Her hips look very unstable.  We have an appointment for her with the same neurosurgeon that did my other daughter's surgery, so that's good. 

I hope this helps and if you have any more questions, ask away!!