Anyone Have Multiple Members Of Their Family With Pots?

[tjmerohr]

We just found out me scene son also has POTS. The good news is we knew the symptoms and were able to get a diagnosis very quickly. We are confident he will overcome his symptoms as his brother was bed ridden for several months, and now, two years later, is fully functioning and just completed his first year of college. We are curious, however, if any of you have siblings or other family members who have also been diagnosed. Interesting that they have a cousin with it, and possibly an aunt as well. I haven't been able to find much information on a genetic component, so I figured I'd see what you all knew.

[Bigskyfam]

I'm newly dx with no history however ive often wondered about my mom who had "vertigo attacks "and was bed bound for weeks at a time. I'm also keeping an eye in my oldest daughter who at tines has tachy and dizziness and nausea.heres hoping for more definitive testing and treatment for our loved ones sakes

[Katybug]

My mom has low bp with "spells" when standing. I did a poor man's ttt on het and she did have a severe dip in bp at around 7 minutes. She of course denies that we have "the same issues". My maternal grandmother also had "spells" throughout her life that looked very much like pre-syncope to me. This grandmother had Graves Disease and my mother and sister both have Hashimotos. I have a hard time believing it is all a coincidence.

[IceLizard]

My sister recently developed POTS as well. In our case it is EDS. Since EDS is inherited and 60% of people with EDS develop POTS, it unfortunately makes sense.

[Chaos]

Both my daughter and I have been officially diagnosed. I suspect 2 of my 4 siblings and a couple of nieces have it as well.

My POTS doc says it tends to run in families but he didn't know of any particular studies showing it other than the ones related to a particular family with the NET gene abnormality and the ones with the specific type of inherited familial dysautonomia.

[Noonoo]

My sister collapsed 2 years ago (42) and was eventually diagnosed with POTS and then EDS 3. My mum (72) has started with it since the shock of losing my Dad suddenly and I (36) had an abrupt onset 12 weeks after giving birth to my only child last year. It's great that we can understand one another but awful that we have no one to lean on as we are all ill. We are all slowly improving which is the good news!

[DeGenesis]

Both my daughter and I have been officially diagnosed. I suspect 2 of my 4 siblings and a couple of nieces have it as well.

My POTS doc says it tends to run in families but he didn't know of any particular studies showing it other than the ones related to a particular family with the NET gene abnormality and the ones with the specific type of inherited familial dysautonomia.

It seems like a lot of the veterans here have been diagnosed with MCAD, and are treating it aggressively. Hmm..

[MomtoGiuliana]

One of my sisters has been diagnosed but her case has presented very differently--it has always been very mild. She probably would not have been diagnosed except that I had been diagnosed with a more severe case.

[Lethargic Smiles]

My sister was diagnosed with it but outgrew it after a little over a decade. Looking back, it seems my Mom and maternal grandma also had it but we don't know for sure. The genetic factor in our case is likely EDS-3 predisposing us to POTS rather than the POTS itself being genetic.

[xRobin]

I'm the only one!

I have been doing some reading about EDS and it's a remarkable fit for my Mom and Grandmother, though neither one of them had symptoms of POTS. Early onset and severe osteoarthritis, joint issues, hiatal hernia, varicose veins, hypermobility. I wonder if I got a little something that predisposed me toward POTS even though I don't have those problems, though I have other health issues that are probably in play. (I still to this day do not know what it means to "put your back out", other than a lot of pain!)

My Gram lived until 87 and my mom is in her 70s and just had a clean bill of heart health from her cardiologist, so if there is EDS in my family it hasn't impacted longevity.

[edriscoll]

My mother had many problems with POTS type symptoms and her sister has been diagnosed with POTS. I am very worried about my daughter. She is 27 and has had many of the early symptoms that I experienced - low BP, fast HR, dizziness rising and when she was pregnant she had to go out of work at 6 mos. because she could not stand up for more than a few minutes at a time without feeling severely faint. She asked her OBGYN about POTS/Dysautonomia and told her dr. about me and family history and the doctor said "no, it is just a pregnancy symptom" Of course I have never heard of pregnant women not being able to stand up long enough to take a shower but what do I know??? The doctor would not take her symptoms seriously. When she had my granddaughter and got past the initial pregnancy/hormonal changes she is back to "normal". But I worry that these symptoms are the precursor to illness later on. I don't see anything that can be done to prevent the onset but at least we know what to look for.

[MomtoGiuliana]

the doctor said "no, it is just a pregnancy symptom" Of course I have never heard of pregnant women not being able to stand up long enough to take a shower but what do I know??? The doctor would not take her symptoms seriously.

I can relate. I had to stop working at 8 months pregnant due to similar problems. I was told this just how my body reacted to pregnancy and I had to accept it. I was undiagnosed until about 4 mos post partum. Good she recovered so soon, it took me months to recover!

[indiaashes]

I have a cousin on my dad's side who was diagnosed with IST at the same time I was. My sister, my dad, and my cousin's mom (dad's sister) have all been to the doctor about arrhythmias and episodes of tachycardia, but none of them have symptoms that are particularly disruptive. I thought this was unusual, as at the time of diagnosis, I was told by my electrophysiologist that IST was fairly rare.

[LastUnicornLady]

Our family has a history of vasovagal syncope and easy fainting, as well as a possible (and highly likely) genetic predisposition to EDS. (Or however you want to phrase that.) My mother and maternal grandmother both are easy fainters. When their fever is too high, when they're in pain, when they're dehydrated, while giving blood... The list goes on. One of my sisters and my brother also seem to have inherited the "fainting gene", and faint with illness, pain, blood loss (even minimal), etc.

My father's side is the one with the EDS factor, and I know that he faints while giving blood. However, he is not as prone to fainting as myself, my mother, and grandmother are.