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Mitral Valve Prolapse Syndrome And Pots


scarfgirl
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I recently got back from the Birmingham Mitral Valve Prolapse and Dysautonomia Clinic. I had an EKG, tilt test, and exercise test. EKG was normal. Tilt showed clear signs of dysautonomia, as did the exercise test. For both of those tests, my BP was stable but my heart rate quickly escalated.

I also had my thyroid checked and it was normal. My Vitamin D levels were checked and came back very low.

So I'm now on a beta blocker (zebeta), an SSRI (Zoloft), Klonopin, and Vitamin D. I've been on them for two weeks now, not really sure if anything has happened yet.

Dr. Watkins seems very confident, as well as competent, yet his approach seems very different from the research of Dr. Grubb's, which is mostly what I've been following.

Is anyone familiar with his work, or have an opinion on his treatment protocol. Like I said, he seemed confident but I'm still nervous and it'll be 3 months before I go back for a checkup.

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Kexia,

I have no experience with either doctor but I do have a few questions for you. How did you do on the Zoloft? I posted that question a few days ago...did you respond? If so I apologize! And the other question is, from what you said in your post they determined dysauto because your heart rate was off but BP ok? I'm just learning as much as I can so I can educate my doctors about this odd condition!

Thank you!

KC

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Not sure where your dr is but I am on the east coast and went to rochester mn (Mayo clinic).

My meds are very much like yours. SSRI, betablocker, klonopin- I take D ( and Iron, Fish Oil, and a Multi) on my own b/c I don't drink milk and a lot of us don't get enough sunlight.

It takes a long time to feel better- mayo told me about 9 months after a flare.

I think what you are taking are pretty standard meds.

Were you also told to wear compression and increase your salt intake?

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KC - I know what post you're talking about and I know I MEANT to respond to it. I'll go back now and check to see if I actually did or not.

KayJay - My doc is in Alabama. Glad to see someone going with a similar treatment. Do you take prescription strength D or just over the counter? I ask b/c Dr. Watkins said over the counter wasn't strong enough.

Yes on the salt intake, he might also consider me for florinef in summer. He said I could try the hose but he hadn't seen a lot of improvement for people wearing them (he did admit however that in the south the overheating part probably outdoes any benefits you get from the constriction)

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Ive been told that the 'mitral valve prolapse syndrome' was given to people with tachycardia before they realize that the tachycardia related to orthostatic challenge (OI).

Hi,

I was DX with MVP 8 years ago and it was actually a clicking in my valve with mild leakage....at that time Dysauto symptoms weren't really apparent while standing so that cardio didn't check for tachy while standing but it could have been all along.

LOL I guess we are saying the same thing:P

Lissy

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He said I could try the hose but he hadn't seen a lot of improvement for people wearing them (he did admit however that in the south the overheating part probably outdoes any benefits you get from the constriction)

I notice a difference with spanxs higher power power panties (FUNNY NAME I KNOW) Mayo clinic recommended I try them- the are not full length- I may wear them in the summer too- under a tank -top and shorts!

I am taking regular D but I am a sun person anyway. On sunny days in the winter I sit in a chair ( bundled up) in our pool area to get a little sun on my skin.

I think for most of us, vitamins are a good idea. Also I was told that it is a great idea to take at least one baby asprin every day.

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Mitral Valve Prolapse syndrome is very similar to POTS, except that you have the mitral valve issue going along with it. If your heart valve is not prolapsed, you probably have POTS. I was first dxed with MVP syndrome, so I went to a cardiologist. After a cardiac echo and stress test, it was determined that I had no mitral valve issues at all. Soooo, I started to look for how you have MVP syndrome without the MVP and found POTS. It is probably an underlying condition that causes the dysautonomia like MCAD or Ehlers-Danlos.

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Mitral Valve Prolapse syndrome is very similar to POTS, except that you have the mitral valve issue going along with it. If your heart valve is not prolapsed, you probably have POTS. I was first dxed with MVP syndrome, so I went to a cardiologist. After a cardiac echo and stress test, it was determined that I had no mitral valve issues at all. Soooo, I started to look for how you have MVP syndrome without the MVP and found POTS. It is probably an underlying condition that causes the dysautonomia like MCAD or Ehlers-Danlos.

That sounds about right. From the way the doc explained it, lack of blood flow or low blood volume or whatever caused my heart to shrink making my valve too large and floppy. So it was like a symptom of the OI/POTS/whatever.

I hate not having a decent name for what I have. Or I guess I should say I wish there weren't SO many names. I never know what to tell people when they ask what's wrong with me.

@kayjay - Dr. Watkins didn't think the Vitamin D deficiency was related to lack of sunlight, so the amount of sun you get won't matter. I guess he thinks it's an inability to correctly process D or something? I wish I had been more clearheaded during my visit so I could have asked better questions.

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Mitral Valve Prolapse syndrome is very similar to POTS, except that you have the mitral valve issue going along with it. If your heart valve is not prolapsed, you probably have POTS. I was first dxed with MVP syndrome, so I went to a cardiologist. After a cardiac echo and stress test, it was determined that I had no mitral valve issues at all. Soooo, I started to look for how you have MVP syndrome without the MVP and found POTS. It is probably an underlying condition that causes the dysautonomia like MCAD or Ehlers-Danlos.

That sounds about right. From the way the doc explained it, lack of blood flow or low blood volume or whatever caused my heart to shrink making my valve too large and floppy. So it was like a symptom of the OI/POTS/whatever.

I hate not having a decent name for what I have. Or I guess I should say I wish there weren't SO many names. I never know what to tell people when they ask what's wrong with me.

@kayjay - Dr. Watkins didn't think the Vitamin D deficiency was related to lack of sunlight, so the amount of sun you get won't matter. I guess he thinks it's an inability to correctly process D or something? I wish I had been more clearheaded during my visit so I could have asked better questions.

Well, no not really. If you actually have a floppy valve, you have MVP and the syndrome (OI, dysautonomia, etc.) If you have the syndrome, but no floppy valve, you have POTS or OI, but not MVP. My valves are just fine! However, before there was clinical evidence, what we now know as POTS was called MVP prolapse syndrome. So if your valve is floppy, tell the docs you have MVP and MVP syndrome. Tell everyone else that you have a heart valve defect, they can understand that much easier than "I have an autonomic nervous system dysfunction." :)

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I hate saying 'heart valve defect' though b/c it's not really true. I mean, yeah I have one but that's not why I can't walk around or hold a job. And when I say MVPS people pick up on the MVP part and I hear 'oh but my cousin, aunt, etc...has that and she says it's not serious at all'

I'm saying dysautonomia and people are just gonna have to learn to deal with big words.

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