Pots And Genetics

[Jenny]

Hi everyone,

I was just wondering if there is a way to find out if POTS is genetic or not. I developed POTS after spinal surgery but the docs have insisted that they were nowhere near the area that controls heart rate. It's been 5 and a half years and it doesn't look like this is going away. I have improved since the begining but am still unable to work. I have been through a bunch of tests with a POTS doc but would like to know if there are ways to tell if it runs in the family. I was healthy before the surgery with no hint of any problems. (I used to work 13 hour days retail no problem). I know that it won't make much difference for me but I would like to know in case I ever think of having children in the future

Thanks

Jenny

[Lukkychrm42]

Even if the doctors didn't actually mess up around whatever parts that control your ANS, I believe that general anaesthesia itself can cause complications including but not limited to damage to the ANS. Correct me if I'm wrong, but I'm pretty sure I have heard or read this somewhere. The only genes that they have actually found linked to POTS relates to hyperadrenergic POTS which is seen in only about 10% of patients and does not result from surgery. Other than that, there are a large number of us who have POTS related to Ehlers Danlos Syndrome, and that is also usually genetic. Also, there are people who seem to have a genetic tendency to develop some form of dysautonomia beginning perhaps around adolescence, and often getting better upon adulthood. Finally, there are those who develop POTS after a virus, and as it results from damage to the ANS, I would suppose that damage from a surgery would fall under this category. While in theory there is an average of about 5 years in which patients are expected to improve, it's only an average, and there's not always a definitive end to which patients improve... whether 100%, 80%, or whatever. But as far as I am aware, these POTS patients will not generally pass on dysautonomia to their children.

[juliegee]

Hi Jenny,

I definately believe that there is a genetic component to POTS and OI's. I have it as does my son. So do my mother and grandmother. Look carefully at your family history. Does anyone have a tendency to faint or have tachycardia? Or just seem plain tuckered out all of the time?

Since yours came on following anesthesia, perhaps it doesn't have a genetic component and will pass. My came on following a car accident. It has waxed and waned over the years. It is not too bothersome now. There is definately hope.

Julie

[Jenny]

THank you both for your replies. I just don't know because it came on so suddenly. I had a wonderful childhood, had lots of energy, spent my highschool years in cadets and working, then I did a year of fulltime postsecondary. I know that a lot of people have said that they knew they were sick all of their life, but that isn't the case for me. I had the surgery, suffered from a pulmonary embolist and then I just didn't recover. It just seems that it came out of nowhere and the fact that they cut pieces of my sympathetic in order to fit screws into my spine has always made me wonder. It's just so hard to know because I am not a doctor and they have done this surgery so many times without POTS as an outcome. I fear that if it is genetic I will pass it on to any children that I have. I guess I just feel like I need to know but I don't know if I'll ever be able to know for sure.

[scarfgirl]

It's possible you were always prone to this illness and it just took a big surgery to make you succumb to it. Or, it's possible the surgery itself fubbed something up. Or it could be something else entirely, and yeah you'll probably never know for sure.

You mentioned your own health was always good. What about the rest of your family? From what you've given so far it sounds like you don't have a reason to worry about passing it on.

I think POTS is like a lot of other illnesses (rheumatoid arthritis comes to mind off-hand) that aren't inherited per se, but can have a genetic predisposition. Noone in my family has been diagnosed with POTS, but my mother's side of the family has always been, er, a bit on the delicate side. None of them exercise or work strenuously and until I fell ill with POTS I always thought they were just lazy. Hehe, part of why I always pushed myself so hard is so I wouldn't end up like all the other women in my family. So while it's hardly proof of a genetic link for me, that and my own poor health were enough to convince me not to have kids of my own.