Questions About Mitral Valve Prolapse & Tricuspid Valve

[ethansmom]

Brief overview: I became sick literally overnight and was diagnosed with POTS in 2001. After a great pregnancy in 2002, I seemed to get mostly better and have been leading what I consider a normal life ever since- never regained total function, but 65-75% which was all I could ask for! In 2004 I was diagnosed with Lyme disease, then found out that POTS is often a secondary condition caused from damage to the autonomic nervous system from the bacteria. I've been busy having babies and nursing them, and living my life and was getting ready to start treatment for the Lyme this fall as I have been feeling like I was sliding back a bit this year and wanted to stay on top of my symptoms.

However, we found out we were pregnant again right before I began the treatment (which is not compatible with pregnancy or breastfeeding). My previous pregnancies have been great, but this time I got sick again with severe POTS-type symptoms just 4 weeks into the pregnancy. It's been the same, if not worse, since then. I saw a new cardiologist recently and got some test results which I am concerned about and hoping you all can help!

8 years ago my cardiac tests all showed normal structure and function of the heart. I did fail the Tilt Table which is how we reached a diagnosis. I do have periodic episodes of SVT and of course tachycardia, but otherwise normal. This time, the echo showed a slight Mitral Valve Prolapse and weak tricuspid valve. I can't find any good information online about this- the doctor says not to worry about it, that it's very mild and nothing to be concerned about.

I disagree because I am very sick- I am bedridden most of the time. I've had to quit working and my business is at risk of being shut down. I cannot care properly for my children and am slowly deteriorating, and spend a lot of time crying and wondering if I've made a huge mistake. This is a dark place I'd hoped I never had to visit again. Only this time I think it's worse, because I am dealing with terrible pregnancy symptoms on top of it- horrific nausea/vomiting and the worst fatigue I've ever had.

Based on my symptoms below, is it possible that these seemingly benign heart defects could be causing these severe symptoms, and if so- who can help me figure it all out?!

Worst symptom is severe dizziness and lightheaded feeling when sitting or standing

Also have major weakness,

Periods of random tachycardia and pounding heart rate when laying or sitting

Heart rate always shoots up when I stand up

Higher blood pressure than normal, one time it was 145/117 just from standing up

Ice cold hands and feet that come and go- sometimes they feel normal

Waking at night shivering and freezing, alternated with sweating (occasionally)

General feeling of malaise, I've lost all motivation and desire to do anything because it's too much effort

Please help!! My family needs me back

[lissy]

Hi,

Sorry for your decline in health I have MVP and I was told its not serious either. Have they done a repeat echo? And are they checking other possibilties . I just know having 5 children myself I felt when the blood volume was building which gave me alot of symptoms , thats was before DX. I guess If I were you I would keep going to the OB and make sure you don't have anemia and things like that going on. This might just be like a POTS setback, there just so many things that can be going on. After my last baby I've stayed the same so I hope you get some clear medical answers soon. Keep your head up:)

Lissy

[Tammy]

Yup, I can relate also. I have been told the same about my tricuspid and mitral valve as you. I also got sick overnight after a cold virus. They don't think the weak tricuspid valve or the small leak in my mitral valve has anything to do with my symptoms, however they are just like yours. I'm homebound and extremely weak. I feel unwell much of the time also. I wish there was something I could tell you that helps. I do see a bit of an improvement when I drink Lemon Ginger Tea by Yogi brand as it also has licorice root in it. I tend to pee out liquids faster than I can drink them, so fluid loading is a bit of a problem. Compression stockings are a bit helpful. Also a very tiny dose of a beta blocker, which takes forever to work up to a theraputic level but that's the only way I finally was able to get my body to not reject it. Hope this helps a little. Take care

[erikainorlando]

Count me in...same problems with tricuspid and mitral valve....leaky I think they said. But I do think it is just POTS. I am sooo ill a lot. Alll the symptoms you mentioned I have too. I remember begging the doctor to help and you sound like me. I am learning to manage my symptoms a little better and getting more of a handle on my life...youn will too.

Hang in there..Erika

[flop]

From what I've learned over the years, your echo findings sound as if they are only slightly abnormal. It may be that the valves aren't working quite right because of your blood pressure problems (ie POTS is the cause of the minor valve leaks) and that the valves aren't themselves causing your symptoms.

Pregnancy related sickness can be awful. I have found out about several natural remedies that are safe to take during pregnancy - ginger (preferrably fresh root ginger), fennel, cardamom, cloves. The last three can be sucked or chewed as the dry herb/spice or you can get herbal teas with them in, or make your own tea. My personal favourite is fennel - I drink a fennel and liquorice herbal tea (the two balance each other in terms of effect on urine production - fennel is a diuretic but liquorice make you retain fluid).

Hope you are feeling a bit more functional soon!

Flop

[scarfgirl]

I too have the prolapse. For me the POTS causes the prolapse, not the other way around. Lack of adequate blood flow shrinks the heart a bit, making the valve floppy--I think that's how it was explained to me. At my healthiest the prolapse can't be detected, but when I'm really sick it's plain as day.

[chipper]

My daughter has both and I have MVP. Both of us have POTS and EDS Type III. I have had all of the symptoms you list, but I am better. The bed, for almost ten years, seemed to be my best friend. The heart valves are almost never the cause of POTS symptoms, and are nothing to worry about. We all need a caring doctor that is dedicated to helping us get better. We all need hope!!

Bless you! My heart goes out to you and you can get better and your family loves you now and when you get better. POTS can be soooo hard to live with, but prayers can be our HOPE!

My prayers go out to you.

[MomtoGiuliana]

So sorry you are still so unwell. Didn't I see you were packing for a trip? I thought you were feeling better! I am so sorry this is not the case.

You symptoms sound A LOT like mine in later pregnancy. I think a lot of it has to do with having inadequate blood volume--a POTS thing--although the exact mechanism is unclear. The low blood volume may cause a slightly abnormal echo, from what I have seen on DINET in the past.

Have you tried getting fluids through IV? Has your doctor considered this? I remember during pregnancy, they would say I was dehydrated (even tho I had been drinking normally) and would give me IV saline and it was like a miracle treatment. The benefits only lasted a few days and I was undiagnosed so no one understood the connection. If you are vomiting you may not be keeping an adequate electrolyte balance, or enough fluids. For someone with POTS, vomiting is worse than for someone w/o.

Hopefully you will start to improve soon.