WifeofPotsMan Posted September 10, 2003 Report Share Posted September 10, 2003 Dear All, A very interesting feature of POTS, is its connection with Mitral Valve Prolapse. I have it, and as far as I know, I think that Michelle has it too. Prof. Mathias (specialist in POTS), whilst accepting that there is a vague connection between the two conditions, posed a very legitimate question. He said, "you had MVP all your life? So why did you get symptomatic only in the last 16 months? I'm looking forward to hear your views on this one too. Alex Joined: 29 Jun 2003Posts: 8Location: Cambridge, U.K.--------------------------------------------------------------------------------Hi Alexander! I have had mitral valve prolapse show on an echo. However, I recently had another echo and it did not show. From what I have heard, this is not uncommon in POTS patients. There have been studies that suggest that low blood volume can lead to MVP, but there have also been conflicting reports: http://www.ncbi.nlm.nih.gov/entrez/query.f...7&dopt=Abstract MVP is associated with Ehlers-Danlos syndrome (EDS), and EDS is associated with orthostatic intolerance, so there is a connection there. I'm sure there are other connections, and that more will be found in the future. Here are a few abstracts that you might find interesting: http://www.ncbi.nlm.nih.gov/entrez/query.f...1&dopt=Abstract http://www.ncbi.nlm.nih.gov/entrez/query.f...3&dopt=Abstract http://www.ncbi.nlm.nih.gov/entrez/query.f...6&dopt=Abstract http://www.ncbi.nlm.nih.gov/entrez/query.f...3&dopt=Abstract and the contradiction: http://www.ncbi.nlm.nih.gov/entrez/query.f...2&dopt=Abstract Keep in mind that magnesium can lower blood pressure, so talk to your doctor if you are thinking of taking it. Prof. Mathias did ask a very legitimate question...one that I have asked many times myself. I have Ehlers-Danlos syndrome and I obviously had it all my life, so why didn't I get symptomatic with POTS until I was 27 years old? There is a lot we just don't know yet. Michelle Michelle SawickiForums ModeratorJoined: 21 Jun 2003Posts: 14Location: Michigan Posted: Thu Jul 03, 2003 10:24 am Post subject:--------------------------------------------------------------------------------Ok, this is just my opinion, but maybe you were symptomatic & didn't realize it. My husband has since realized that he has been syptomatic all his life - only to a greater or lesser degree. His comment recently was "if you have been this way all of your life, how do you know that it isn't right?". He has had problems with his heart racing, naseau & feelings of lightheadedness all of his life. He said that when he was younger, he thought everyone must feel like this. It wasn't until the sypmptoms became so prevalant that he realized there was a problem. He too has MVP. We've know about the MVP for several years. We only recently received a diagnosis of POTS. Up until his diagnosis we saw several doctors over a 3 year span who said there was nothing wrong with him. He needed a less stressful job or maybe he should take an anxiety med. So, maybe the question for the doctors is not why are you just now syptomatic, maybe it's why didn't my physicians notice that there was a problem before now? WifeofPotsManNewbieJoined: 07 Sep 2003Posts: 3Location: Orlando, FL Posted: Sun Sep 07, 2003 5:57 pm Post subject: --------------------------------------------------------------------------------i have mvp as well. i think there is a connection of some kind. and i can resonate with the notion of being symptomatic all my life, but only paying attention when it became severe enough that i couldn't ignore it. my mvp was diagnosed a few months ago during an echo, however, SEVERAL previous echo's had failed to detect one... justin justinNewbieJoined: 19 Jul 2003Posts: 5Location: kanada Posted: Sun Sep 07, 2003 7:16 pm Post subject: yep Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted September 10, 2003 Report Share Posted September 10, 2003 Thanks for moving one of the posts over. I know some of you put a lot of time into your posts -especially the ones that told your story- and I'd hate to see them get lost. So feel free to copy and paste them into the new forum. We will keep the old forum up for another week or so for those who want to move their posts over. You do have a point about some people being symptomatic all their lives and doctors just not picking up on it. I do think this is the case with a good number of people. Others, such as myself, seem to have a genetic predisposition and then symptoms are tiggered later in life. I got severely ill with POTS all in one day. For me, I think I also have an autoimmune component to my illness, as I've had a positive ANA and I never get sick anymore...not even with just a simple cold.Michelle Quote Link to comment Share on other sites More sharing options...
SparkNik Posted September 10, 2003 Report Share Posted September 10, 2003 For me I had symptoms all my life. I always suffered from anxiety and stomach problems but I just figured that was normal. But then at 19 I started with pals and panic attacks. At that point I was diagnosed with MVP. But last year is when I got hit with my worst flare up and was told I no longer have MVP. Now it's POTS that I have. Whatever the doctors want to call it doesn't matter. It is all a part of the dysfunction of the autonomic nervous system in one way or another. Quote Link to comment Share on other sites More sharing options...
Guest Stacey:-) Posted September 15, 2003 Report Share Posted September 15, 2003 HI! I was diagnosed with MVP back in 1980. I was 15 and they said it was extra tissue on my heart that was ballooning and that I had to take antibiotics before going to the dentist. It was not called MVP then but i never realted it to my POTS until now. I have had 3 out of 4 cardiologists say yes MVP but one echo did not show it. I wonder how realted it really is. Interesting. Stacey:-) Quote Link to comment Share on other sites More sharing options...
Guest CastleWolf Posted March 13, 2020 Report Share Posted March 13, 2020 Weirdly enough, I had MVP show up on an echo a few years ago and this year, it's not showing up. I've heard it's something you don't grow out of, but perhaps it can be repaired with time? Or maybe the prolapse is just subjective depending on the echocardiogram technician and doctor reading the results. My last technician said it was a subjective thing. Makes sense since every doctor is subjective and what one diagnosis is to a doctor is a different or non-existent diagnosis to another. Quote Link to comment Share on other sites More sharing options...
Sushi Posted March 13, 2020 Report Share Posted March 13, 2020 4 hours ago, CastleWolf said: Weirdly enough, I had MVP show up on an echo a few years ago and this year, it's not showing up. I've heard it's something you don't grow out of, but perhaps it can be repaired with time? Or maybe the prolapse is just subjective depending on the echocardiogram technician and doctor reading the results. My last technician said it was a subjective thing. Makes sense since every doctor is subjective and what one diagnosis is to a doctor is a different or non-existent diagnosis to another. I have had it for a long time and it is true that sometimes it shows on an echo and sometimes it does not. I was told that it can have to do with being in the right position and it can also be affected by hydration levels but that the prolapse doesn’t spontaneously heal—it is just hard too see sometimes. Quote Link to comment Share on other sites More sharing options...
TCP Posted March 16, 2020 Report Share Posted March 16, 2020 MVP seems to be a feature of Ehlers Danlos Quote Link to comment Share on other sites More sharing options...
Sushi Posted March 16, 2020 Report Share Posted March 16, 2020 7 hours ago, TCP said: MVP seems to be a feature of Ehlers Danlos Yep, I have Ehlers Danlos. From this interventional cardiologist’s twitter account: Quote Mustafa Ahmed @MustafaAhmedMD ·Jul 20, 2018 Ehlers-Danlos. Cardiac involvement may include postural tachycardia syndrome, valvulopathy and vascular fragility. Quote Link to comment Share on other sites More sharing options...
TCP Posted March 17, 2020 Report Share Posted March 17, 2020 21 hours ago, Sushi said: Yep, I have Ehlers Danlos. From this interventional cardiologist’s twitter account: Yes, it's part of the new diagnostic criteria for hEDS. I have it, too. Quote Link to comment Share on other sites More sharing options...
Shelly Posted May 25, 2020 Report Share Posted May 25, 2020 Apparently 40 percent of people with mitral valve prolapse have dysautonomia. I have mitral valve prolapse and I know I have dysautonomia due to various symptoms. There is a book called ‘confronting mitral valve prolapse syndrome’ by Lyn Fredrickson which explains it all. It was a life saver finding this book as I thought I was going mad having all these symptoms and not getting any answers from the doctors. The book also explains that although you were born with mitral valve prolapse the symptoms can be brought on later in life by a stressful life event like childbirth, bad virus etc. Quote Link to comment Share on other sites More sharing options...
Sushi Posted May 25, 2020 Report Share Posted May 25, 2020 5 hours ago, Shelly said: Apparently 40 percent of people with mitral valve prolapse have dysautonomia. I have mitral valve prolapse and I know I have dysautonomia due to various symptoms. There is a book called ‘confronting mitral valve prolapse syndrome’ by Lyn Fredrickson which explains it all. It was a life saver finding this book as I thought I was going mad having all these symptoms and not getting any answers from the doctors. The book also explains that although you were born with mitral valve prolapse the symptoms can be brought on later in life by a stressful life event like childbirth, bad virus etc. Yes, that book was a real eye opener for me! I happened to live in the same city as Lyn Fredrickson and participated in a support group offered by her hospital. Reading that book gave me the first clues as to what was wrong with me. That was a long time ago and I never expected my prolapse and regurgitation to progress—but they did this past year and I had to have it fixed. But for most, it doesn’t progress—still, good to have regular echoes. Quote Link to comment Share on other sites More sharing options...
Shelly Posted May 26, 2020 Report Share Posted May 26, 2020 12 hours ago, Sushi said: Yes, that book was a real eye opener for me! I happened to live in the same city as Lyn Fredrickson and participated in a support group offered by her hospital. Reading that book gave me the first clues as to what was wrong with me. That was a long time ago and I never expected my prolapse and regurgitation to progress—but they did this past year and I had to have it fixed. But for most, it doesn’t progress—still, good to have regular echoes. Hope you have made a good recovery. I have mild regurgitation too. It’s unlikely that it will progress but there is always that small chance. That’s great you lived in he same city as Lyn Fredrickson and there was a support group. I live in England and none of the doctors here seem to know anything about it. Quote Link to comment Share on other sites More sharing options...
Sushi Posted May 26, 2020 Report Share Posted May 26, 2020 5 hours ago, Shelly said: Hope you have made a good recovery. I have mild regurgitation too. It’s unlikely that it will progress but there is always that small chance. That’s great you lived in he same city as Lyn Fredrickson and there was a support group. I live in England and none of the doctors here seem to know anything about it. I had a minimally invasive fix—a MitraClip which was place via catheter—so far so good. I am due for another echo whenever Covid makes that possible. The post MitraClip echoes have so far shown only “trivial regurgitation.” Quote Link to comment Share on other sites More sharing options...
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