Siblings With Pots?

[shan1212]

My sister has suddenly had on onset of POTS-like symptoms. Basically she has all of the same symptoms as I do (fatigue, intolerance to upright posture, chills, stomach problems, brain fog) and had to go to the ER last night (they didn't have an answer for her). Does anyone have a sibling with POTS? I know there is some genetic component but I'm wondering how likely it is that this could be POTS.

[issie]

Very likely that there is some form of dysautonomia. My sister has OI and two of her kids have some sort of dysautonomia. They think one has POTS the other OI. One is a fainter the other isnt. I have POTS. I think my maternal grandmother also had POTS.

Issie

[Christy_D]

My son has POTS/MCAS and my daughter has had symptoms for quite a while as well but not officially diagnosed since she is so functional. After fainting while sitting down last week and now dealing with severe fatigue/exhasution ever since I have made her an appointment with my son's specialist. Her symptoms now seem to be esculating unfortunately.

As a teen I had very mild symptoms and my mother did as well. We would have never known what it was until my sons diagnosis, he just happens to be very severe.

Christy

[Millerla]

My dad and paternal grandmother have both had the same symptoms as me, but they were eventually just put on hypothyroid medication and sent on their way. I think they had POTS as well but grew out of it, and now they are dependent on the medication. My older brother does have a Vegas nerve disorder, but it's definitely different than POTS. When he's stressed, his hr slows way down, then speeds way up to compensate and he gets really sick. He's fine as soon as his heart slows back down though, standing doesn't change anything.

[Chaos]

I have 2 sisters and 2 of my kids with similar symptoms but no one else diagnosed formally.

[Ashelton80]

My mother has it and my aunt started showing milder symptoms a few years ago.

[MomtoGiuliana]

One of my sisters has been diagnosed with it. but her symptoms have been almost non-existent and she probably would not have been diagnosed except that I already was.

[Katybug]

My mom and maternal grandmother both show/ showed symptoms and mom, sister,, grandmother all had / have Hashimotos or Graves.

[mully2014]

I have lots of relatives that have symptoms of dysautonomia but I definetly have the worst problems with it. On both of my parents sides there is issues with low blood pressure, one person has laughing asthma that cause them to faint, others have orthostaic intolerance, my younger sister has some similiar symptoms and is diagnosed with POTS. My family medical history is a long confusing web of connections to dysautonomia that seems to increase all the time.

[issie]

This is pointing more and more to GENETICS - you guys!!!!!

Issie

[McBlonde]

I am the only one, but I wonder if mine could still be genetics. The first time I fainted, I was THREE years old and I fainted twice that day.

[jangle]

There is a genetic predisposition, but it's more likely a predisposition for the epigenetic alteration. I.E. it's of the reversible kind.

[McBlonde]

There is a genetic predisposition, but it's more likely a predisposition for the epigenetic alteration. I.E. it's of the reversible kind.

Okay, for Dysautonomia For Dummies does that mean that I had a predisposition for it and at 3 years old something triggered the over reaction of my autonomic system?

(Side note: I swear my IQ has dropped 40 points in the last 3 years)

[issie]

Yeah, that's what it means. Something switches on the gene and causes a mutation. The theory is - if something can switch it on ---we might can figure out how to switch it off. That's what we're hoping for any way.

Issie

[corina]

McBlonde, that IQ thing is something that is really bothering me, at times I feel really stupid. I've had testing years ago and been offered new testing again but am too scared to. I'm pretty sure things have gone down hill but don't want to stress myself even more.

My sister has been fainting in her teens, as did I but of course this was a girls thing according to our doctor. I remember my mom being extremely tired. There are different things going on in our (maternal) family like RA and EDS (hypermobility) and there are lots of allergy problems at my fathers side. I often joke I'm a bit of a messed up product (though really really happy to be here!!!).

[rach73]

Hi,

My consultant believes for sure there is a genetic componant to some types of POTS. He treats me and my sister, we both have POTS and EDS, my father has EDS and low blood pressure, My mother hasnt been diagnosed with EDS but we are pretty sure she has it and I believe she has hyper pots as she has high blood pressure and fainting episodes. Ive tried doing a poor mans ttt on my mother but she just naturally wriggles too much! lol

My consultant also sees another members family on here. I will let her tell you about her family if she comes onto the forum. The consultant we see wants to do a genetic study on our families to see if they can identify the faulty gene. I believe he is awaiting funding for this study.

So yes I believe there is a genetic componant in all of this. Ive just remembered, My mothers grandmother took to her bed after the birth of her last child. No one knew what was wrong with her it would have been late 1930's Im guessing when it happened - perhaps her condition was POTS triggered by pregnancy? We will never know. As the drs at the time (which would have been expensive as no insurance or national health service) could find nothing physically wrong with her it was decided it was all in her head. I dont think the family were very sympathetic as then the drs word was final. I feel lucky that medicine has advanced!

Rach

[MomtoGiuliana]

My mothers grandmother took to her bed after the birth of her last child. No one knew what was wrong with her it would have been late 1930's Im guessing when it happened - perhaps her condition was POTS triggered by pregnancy? We will never know. As the drs at the time (which would have been expensive as no insurance or national health service) could find nothing physically wrong with her it was decided it was all in her head. I dont think the family were very sympathetic as then the drs word was final. I feel lucky that medicine has advanced!

My grandmother was also sick after my mom was born (in the late 30's). It was never clearly explained but I do believe she may have had POTS. She also was very intolerant of heat. My mom did not seem to have these problems at all but I had a very rough pregnancy and post partum due to (undiagnosed) POTS.

[shan1212]

Wow, it really does seem like there's a genetic link. I have mitral valve prolapse so I wonder if that's a connection.

I'm hoping my sister's symptoms go away, but at least we know for her to seek out a doctor with dysautonomia experience.

She keeps saying, "Wow, I can't believe you feel like this and still function. How do you live like this?" and I'm like, yeah, I wish you didn't have to know what it's like, but it is validating to hear someone else say, wow, this really does suck.

[shan1212]

I just wonder what could have triggered this. For me, it was weaning my first daughter, but I wasn't diagnosed until things got really bad when I got pregnant with my second. But she's late 30s, her youngest is almost 3 . . . she just ran a half marathon. She hasn't been sick or anything. ????

[Mytwogirlsrox]

She just ran 1/2 marathon? Like right before this happened? There is a lot of information regarding hypotension in runners after marathon running. Maybe she is really dehydrated? Too much running? I hope it's transient... I really hope that this is not genetic, I don't want my babies to have POtS however my dad has self diagnosed himself with CFS so who knows!?!?

[Rachel]

My sister has POTS. As far as we know there isn't a family history of dysautonomia prior to us.

[mully2014]

About the running thing I have exercise induced hypotension. We have never been able to manage my other conditions so we haven't ever really focused of the exercise induced hypotension so I don't have much advice on how to help with it, sorry.

[peregrine]

My sister (half-sister on my mom's side) has chronic fatigue (in her case it appears to be of the chronic mono type), but does not have any type of dysautonomia (we checked after I was diagnosed); we also both (as did mom) have hypermobile joints, but I'm the one with the actual syndrome (mine move more than either of theirs and hurt a lot).

[Mytwogirlsrox]

Shannon, any updates in your sister?

[MilkyWay]

Hello- I found your post interesting. I have POTS and my oldest son who is 20 was DX when he was 16 & now my younger son who is 16 was just diagnosised. My older son was involved in a study at Cleveland Clinic. Part of the study had to do with genetics & Dysautonomia, Dr Thomas C Chelimsky, MD & his wife were in charge of study. I was told by the Drs that puberty (change in hormones) maybe the reason both boys starting having symptoms at the same age. We are still hoping the boys syptoms will lesson as the get older. There are times when I ask "why me, why do I have to have all these illnesses" then when my oldest was sick I was asking "why him" but I did figure out why me- so I would know what he was feeling & how to help him. It took over 7 years for me to get diagnoised & it only took weeks for my sons, plus they did not have to go through as many test or trial medications. I wish you & your family the best.