family history of MVP, symptoms similiar to POTS

[momofpreciousboy]

Hi guys!

I have POTS and there is an aunt (has been told it is MVPSyndrome ) that has the heart rate in 120s, trouble breathing, and two of her children have some similiar symptoms and so does another aunt's child. Their mother (my grandmother) had a lot of chest pain. When I try to research what causes this, I come up with familial dysautonmia (but no history of jewish in the family-so I do not think it is that). I understand that POTS is a collection of SYMPTOMS not a diagnosis and therefore something is causing that. Has anyone found what it is when there is a family history--for example Chiari malformation, a gene, something else? The specialist I go to said that POTS only occurs in the population with "small hearts." Is it a genetically small heart that could be passed along? I am trying to do some research as it bothers me that I do not know what is causing POTS and I have and want more children. I am just wondering what others have found causes POTS especially in the family. Also, I was told that POTS, MVP syndrome, Chronic orthostatic syndrome, neurally mediated syncope were all the same thing. Is that the general understanding of you that have been to the research centers? Thanks, JenniferTX

[steph37822]

oops

[Sophia3]

Wow this whole genetic thing IS complex as in Steph's case.

So far nobody in my family has ANS (but I don't know any of my relatives outside my immediate family and the two I did know have died and had no children.

That said, I DO know of a family where one has a HORRIBLE CASE of OI, and the family members "carry a similar gene". So hers 'appears' genetic, but only she is very ill with it and another family member has a milder case. All had been studied by docs who came to THEIR HOUSE to observe them in this very huge study.

It led to the discovery of the NET defect (Norepinephrine transporter problem) where the body doesn't "clear out" the norepi levels. So, do we all have too much norepi, it doesn't clear out fast enough, or both???

And why do some family members carry the gene and are ill, and others are mildly affected or not at all? It's a good question and I doubt we will find the exact cause.

Then again, 80% of people can tell you WHEN they started feeling ill...where others of us know we have always been 'wimpy' health wise.

For instance, though healthy in my teen years, I had great difficulty lifting things. I had a horse and had no trouble putting on an English Hunt saddle...but lifting a heavy Western saddle wore me OUT! So little things like that....or have I just had poor stamina?

In my case, I was born with it and it showed it's face no and then.

I hope this doesn't confuse, more than it helps.

Oh, and my mother who is 85 is much stronger in the upper body than I AM!!! It's so embarrassing.

[Ernie]

Hi,

Researchers have found out 3 ANS genetic mutations and I don't have any one of them. There are still much research to be done in the field.

[BuddyLeesWife]

I'm definately interested as my husband has NCS and his identical twin brother suffers from much more frequent and debilitating syncope and seizures. None of the doctors are interested in their situation. To me it seems as though they would be great research subjects.

[taylortotmom]

My father has what was called a murmur as a result of "rheumatic fever" as a child. This was diagnosed by a rural doctor over fifty years ago. As a child, he had extreme shortness of breath upon exertion as a child and says that he was really awkward until he was about twelve athletically but then he outgrew it. Well...., if you look at us today, we are similiar in build (long and lanky). The Marfan's term has been tossed around before as well. But, my sister has confirmed MVP as well (as do I) so I personally think my father has MVP but they just didn't know what it was when he was younger. So, I definitely think there is some genetic link going on with the MVP AND as I've stated before, an abnormality with the mitral valvel is often related to an abnormality in the ANS because they are formed at about the same time. I think there is so much more than we know- but we definitely know more today than my father's doctor did fifty years ago.

Carmen

PS I know murmurs can occur as a result of rheumatic fever and I am not desputing that at all but something's up with our family. There's just too much fruit in our family tree, you know? I personally think my parents are siblings..... (You know I am from the Deep South originally)

[Ernie]

Hi Taloytomom,

If there is strong belief that your parents are sibblings you could have their DNA compared and checked out. It could answer some of your questions.

[taylortotmom]

I was joking!!!!! That is running joke in the south because of the stereotypes many people have about southerners being "inbred". I'm sorry- I'm on cold meds......

Carmen

[Ernie]

HI Carmen,

Thanks for clarifying.

I personally know many families who are inbred.

Well, I just learned a new joke!

[momofpreciousboy]

Well, thanks you all. The aunt and family I am talking about is actually my dad's side. I have been told I have a murmur sometimes. But told I do not have MVP. I have always had low exercise tolerance. Who does the genetic test for that? Thanks, Jennifer

[OCsunshine]

I think that, in some cases, there is a definite genetic link here. I think that very often, the disease doesn't really 'show itself' until triggered by a virus.

I have very severe NMH (Neurally Mediated Hypotension). I fell ill and become diagnosed when I was 13 years old (11 years ago). These terms and this whole lifestyle was all very new to us... it was just overwhelming to learn about this illness as I dealt with it!

As I was studied at Hopkins, my mom was brought into the clinic. She didn't think anything was wrong with her. She thought it was COMPLETELY NORMAL to not be able to stand in line at the movies, or to stand upright talking to someone for a few minutes. She was always trying to sit down, would bend down to tie her shoes, would shuffle around trying to get the blood circulating. Growing up she was known as "Kathy the Fainter" but in those times people didn't really go to doctors. She just grew up thinking that EVERYone was that way!!!

She didn't give it a second thought until I became ill and couldn't sit upright without blacking out. Then all of the pieces of the puzzle started to fit...

My aunt (mom's sister) is also a fainter. Happens all the time, she's just been known to take naps at her office because she's overwhelmed with exhaustion, and if she stands up too long she'll black out.

My grandmother (my mom's mom and my aunt's mom) has always had very low blood pressure, but not with any problems. It seems that this blood pressure disorders gets more extreme with every generation (at least in our family's case).

Scary.

[mom4cem]

I have MVPS also. My mother has symptoms of it at times even when she was younger but no one has ever mentioned MVP to her, and one time that she did have an echo they said all was normal. My sister as far as I know has shown no symptoms of it though she and I have never really talked about it much.

My Grandmother always was in bed, according to my mother, and always thought she was dying. Maybe she had anxiety, MVP who knows. I do know after be tested at the MVP Autonomic Center of Ala., that my test showed blunted dysautonomia. I just tell people I have mvp and dysautonomia, most have no idea what either is.

So many symptoms overlap so many other diagnoses that it is hard to pinpoint to one certain disease or syndrome at times. Enough to make one crazy

[yogini]

I don't think that all cases of POTS are genetic. My family is originally from India. I have six first cousins, but hundreds of second and third cousins. Of all of these relatives, lucky me, I am the only one with dysautonomia. I do think I inherited some traits which made me more likely to get POTS. My mom has low BP and also had mitral valve prolapse (MVP) many years ago, but it was controlled with a BB and went away on its own. I think MVP (the prolapse, but not the syndrome) is very common fror women, though. I've read that as many as 1 in 4 may have it, and very few of these women have POTS.

I think many of us have struggled with the issues you are thinking about, especially when we were first diagnosed. The DINET and NDRF websites have good explanations of what is currently known. Hopefully science will improve and give us better answers in the future.

-Rita

[corina]

I truly wish science could give us some answers within 10 years!!!!!!! I so want to get a life and have fun and do everything I want to do. There are times I feel like I'm getting crazy because there's so much in my head and I can't do it!!!!!!!!!!! That's why I feel that we can never give up, well that goes for me at least: I want to get answers. So, let's keep fighting!!!

Corina