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Do You Have Any Family Member With Dysautonomia?


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I'm sorry to hear about your son. I hope you find some answers and relief soon.

Fortunately, my daughter does not have many of the symptoms I have. The dr. said that she had dys. just from how my daughter described what her symptoms have been as of late. Mainly just tachy at the moment. This is the least of our worries at the moment however, she has congenital heart issues that could be causing complications. She's a trooper though. She has some more testing to be done and we're hoping all comes out well.

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Ok my paternal grandfather, father, aunt, me my twin boys and my daughter. My husband (diagnosed with mild Ans dysfunction) 2 of his sisters show major signs, husbands father had PAF so I guess quite a lot of us! Oh we are /were all hypermobile/eds people.

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My brother has pretty obvious symptoms but hasn't been tested, my father had obvious symptoms as well but they went away as he got older (a glimmer of hope for me). I am the only living female in my family that has it but we think it is a gene from my father's side and I don't have any sisters. My grandma on that side also likely had POTS, so there seems to be a strong genetic aspect for me.

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There clearly is a seeming genetic component for more than a few. My kids have both had severe POTS. My niece also clearly has dysautonomia. My Mom has had mild OI intermittently over the years as well as myself. I had an episode several years ago before the kid's severe POTS issues became apparent. My heart was racing any time I was upright and I became concerned about what the problem was. Fortunately I had no other significant symptoms. Dr waved it off to stress and gave me Xanax, which did nothing. Same dr waved my daughter off to depression when she was completely debilitated with not only the heart rate issues but the severe fatigue, hives, etc etc. The severity with the kids forced us to continue pursuit of a diagnosis. It was in retrospect that I realized my mild symptoms and likely the fainting episodes I had as a child were likely all related to the same thing and my mother's as well. The severity has been significantly different with the kids but clearly all related.

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Seven years ago while undergoing one of my various number of evaluations, a very sharp physician began to watch and study my daughter. He told her she probably has the same thing I have - she was in her early 20's at that time. Fortunately, she has not had any particular obnoxious symptoms whereas by my early 20's, I was quite symptomatic. Hopefully, she will escape my fate - at least she has been clued in to what to look for and will have a specific starting point should she begin to travel down the long road of dysautonomia......

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My sister had POTS but is doing better now. She still experiences exercise intolerance and fatigues easily, but she is leading a very normal life. She works full time and doesn't consider herself sick. My mom has EDS and has many dysautonomia type symptoms. My maternal grandma likely had dysautonomia, we will never know since she has died. My maternal aunt also has many autonomic symptoms.

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Does anyone notice a pattern where each generation gets it worse than the previous? My grandma had fainting spells, but lived a very normal life otherwise. My mom has always had autoimmune health problems, but didnt come down fully with POTS until she was 50. Even with all her problems (crohns, ulcertive colitis, POTS,ect) she is still able to work, drive, and life a fairly normal life. I came down with it at 18 and my life just ***** lol. I just wanted to see if anyone else has the same thing?

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No one else in my family that I am aware of. A lot of autoimmune issues though.

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