Genetics

[mully2014]

I'm wondering what peoples experinences are with their condition and if there seems to be any correlation with someone else in the family having something simmilar.

For my family, there is many people that have symptoms that are similar. We didn't notice it until my cardiologist started all of these questions about my family history and fainting. We found on my dad's side that his parents had OH symptoms. My dad and his sister pass out from blood or talking about medical procedures (this runs off the same nerve as POTS/NCS).

On my mom's side both her mom and her aunt have low blood pressure.

I seemed to have gotten a combo of them but in a much more severe case. And recently my younger sister got diagnosed with POTS.

I'm really curious to what other familes are going through in this manner. And whether there seems to be a common connection with if the parent has this condition the child will have it to.

Can't wait to see if there is a common pattern with all POTS patients.

Thanks!

[icesktr189]

I was diagnosed with this at 18 and my mom was diagnosed with POTS and OI at age 50... definently something genetic, just dont know what!

I am hoping my daughter doesnt get it. ... I know there a quite a few on here that have POTS and so do their children.

[MomtoGiuliana]

One of my sisters was diagnosed with POTS. Her symptoms have been mild and I doubt she would have been diagnosed except that I already was. Other than that, there doesn't seem to be any family history for me. My mom and grandmother has been/was very healthy and free of any disability. No evidence of it on my dad's side either.

[mully2014]

Thanks for replying...

MomtoGiuliana:

Yes, that's what happened with my sister too. If I hadn't been diagnosed I doubt that she would've been diagnosed as quickly as she was. I'm glad though that my sister's is very well managed (they managed her on florinef, the first med she tried).

[MightyMouse]

My mom and my two sisters all share the same genetic variation which is a dominant gene (50/50 shot each pregnancy). I am the ONLY one with full expression of the gene. Everyone else has minor problems.

[rubytuesday]

My DF and I were always 'blessed' with running BP on low side (I think one of my sister's does as well). My DM and sister (g-parents), son are hypertensive. DF passed with cancer in his early 60's but DM has been passing out for years. (She describes same sx's as me but she attributes it to her 'since my chemo and radiation' that ended in 2001, or maybe because of her BP med). I can't get her to check her VS (even getting her equip when she has 'episodes' to talk to her docs about it. Once with episode the found Pulmonary emboli, so she thought it was from that but she is in late 70's and still gets occassional spells--especially in warm weather when she's outdoors. I think b/c of her age and hx of hypertension and heart disease, they don't really look into things like POTS with her. I would not be surprised if she had it though. I am older of my sibblings by nearly a decade and I wasn't symptomatic with faints until my 50s, but so far, none of them have exhibitted it--altho some of them have similar health issues as me.

[sugartwin]

My mother was diagnosed recently in her early 50s, of course there's me, and now my younger sister (26) has started to show symptoms. My maternal grandmother has passed on, but she almost certainly had it. I have a second cousin with on and off tachycardia which hasn't been diagnosed as anything in particular but was troublesome enough to interfere with her work schedule.

Of course, all this is almost certainly due to EDS.

[Kirsti]

One of my aunts has troubles with fainting, and I am pretty sure my grandmother had POTS. I am the only one officially diagnosed with POTS in my family.

[maggie]

I have checked with both sides of my family medical history and there is no one who has shown any signs of any problems with any neurology problems. I have been the first to show signs and I was dx at the age of 52. I have no clue where mine came from. I have four daughters and one son and I'm hoping none of them ever have to go through what I have. At least I know what the signs are and have warned all them to keep this in mind.

Maggie

[GingerA]

I think one of the problems with tracking this genetically is that problems with the autonomic system are so discounted by the medical profession that many people with these problems try to "push through" because doctors tell them that there is nothing wrong or that it is all in their head. So people never tell because they think that they will be ridiculed or they are making to big of a deal about the way they feel. Since my POTS has gotten severe enough to finally get a DX I have discovered that several cousins have autonomic problems as well. Also my dad complained constantly of feeling bad and other strange symptoms that we just dismissed either because of his age or because "that just Daddy." But I tried to tell my son's DR. about this and he just said, "This isn't really something that is passed on. You shouldn't worry." REALLY!

[potsgirl]

I was adopted and really don't know much of my biological family's medical history. It can be rather frustrating not to know what ailments run in my bio-family. I think there needs to be a registry for adoptees to be able to find out their pertinent medical histories...

[Christy_D]

After my son was diagnosed with POTS, we were able to figure out that it does run in my family. My son's is just so severe and the rest of us mild. I had mild symptoms as a teen thru early twenties(gone now) as did my mom. My daughter is worse than me, but much less severe than my son though. If my son wouldn't have been diagnosed we never would have figured the rest out. We just thought our symptoms were just random things that came and went.

Christy

[issie]

Yes, genetics in my family too. Sister with severe OI and CFS. Think my maternal grandmother had POTS - but was never diagnosed. Same symptoms as mine. Me with HyperPOTS.

[issie]

Oh, yeah and my sisters kids - two of them they think has POTS. Not tested yet.

[L4UR3N]

My sister has IST which is a sister to hyperadrenergic POTS haha. We both started having problems at the exact same age.... CANT be a coincidence. Also my grandfather had parkinsons, which is interesting b/c of the dopamine imbalance. We seem to have the opposite problem. I also have an uncle who has an inability to regulate his temperature.

I will actually be seeing a geneticist for the POTS next month. I am excited,...but not overly hopeful.

[Tzipora]

To my knowledge I can't think of nor do I know of any one else with neurological issues in my family. The closest thing at all i that my my mom has hypertension but I always run low... So I'm not really sure if there's any connection there. Except that oh hey, my mom actually got diagnosed with high blood pressure when she was pregnant with me but she didn't start needing meds for it until just a few years ago. Although there ARE autoimmune things in my family- in particular thyroid disorders and RA and also diabetes. So if there is an autoimmune aspect to POTS then I can see how, especially since different autoimmune things run on each side of my family that maybe genetics mixed weird to give me the issues I have. I don't know. I have family members who are always trying to figure out where on earth all my issues came from actually!

[mully2014]

Rissy2D:

I hope your appointment goes well. If you wouldn't mind letting me know what the geneticist says that would be great. I think it will be really interesting about what they find out. Good luck!

[Darlene]

my cousin (his great grandpa and my great grandpa are brothers), he was just dx with dysautonomia recently.

[jenglynn]

I am trying to track this currently. I was the first one offically diagnosed but after talking to my dad he said he remembers my grandma (his mom) fainting quite often and when she would have to go to the hospital for a week or two at a time quite often but it was never discussed. He does know he had low BP and has guessed maybe that caused the hospital stays but he isn't sure because his parents never talked to him about it... probably because they could never diagnose her. And he said he knows it was a medical hospital because he went to visit so it wasn't a mental illness or anything like that. But they could never figure out what was wrong with her. She passed away from a massive heart attack instantly in her late 60's and had never been diagnosed with any form of heart disease. She was hypermobile. Her father (my great grandfather) passed also relatively young in his late 60's I believe completely suddenly of some kind of brain blood vessel bursting.

I am very hypermobile and can pass all the "tests" I can find. My 2nd daughter was born with a heart murmur as was I... she has always had circulation problems and would get purple legs and hands. That has gotten a little better but they always attributed that to her heart issue (she also had a hole in her heart which healed at age 6). She is ultra hypermobile- like can put both legs behind her head and just about anything you can think of. She was a late sitter and walker because she was so "floppy". I took her to a neurologist because even at one year she wasn't sitting up unassisted. He said she had some kind of connective tissue disorder that he didn't diagnosis but basically said it was no big deal and she is just flexible like I am. And eventually her muscles would get stronger and she would catch up. It did happen but didn't walk until age 2. Cognitive development totally normal. She is 13 now and doesn't have TOO many symptoms other than heat intolerance and she has had 3 or 4 syncope episodes over the last 2 years. My first syncope that I recall was as an early teen.

So I am trying to figure all of this out but sadly, so many of the people who may know for sure are gone now. But it seems to me that there is a genetic component in my case.