Questions for those with MVP/BAV

[Wise]

This is LONG, so I apologize upfront. My wife encouraged me to post this thread directed to those of you with bicuspid aortic valve and/or mitral valve prolapse (and anyone else with insight into these conditions). I have both of these conditions. Tests do not show much of a problem with either valve. However, I have always had symptoms that I can only consider to be heart related. I just want to ask if anyone has had similar experiences to those I'm going to relay here? First of all, I'll include my relevant heart history pertinent to being diagnosed.

HEART HISTORY: At age 25 (now age 45), I had a sudden sharp pain in my chest and almost passed out. This was at work. I was sitting (desk job) and when this happen my co-workers said I turned green/grey. A friend took me to the emergency room where they took an EKG (normal, usually are) and of course listend to my heart. They told me I had a systolic click and referred me to a cardiologist. After having an echocardiogram, I was diagnosed with MVP, and prescribed a beta blocker (don't remember which one). The beta blocker eventually made me feel more tired than usual, or so it seemed. The cardiologist told me that I may not need to continue the beta blocker, that I only needed it if I had symptoms. I usually did have symptoms such as fatigue, tiredness, chest pains (sharp quick pains). I went to a general practitioner a couple of years later for what I thought was a chest cold or something like that. After listening to my chest He took an EKG and asked me if I had heart problems. Told him about the MVP. He told me I should be taking medicine. He prescribed me a different beta blocker. For a few years, due to changes in insurance, I had several different family doctors; they all dismissed MVP since they couldn't hear a murmur.

This leads me to 2003 when I returned to the cardiologist who originally diagnosed me with MVP. I told him I was having symptoms similar to those I described above, but more frequently, and requested to be tested again. He told me that his previous diagnosis was probably incorrect, but after my echocardiogram he verified the MVP. This time I was put on Toprol for the MVP and because of high blood pressure. This doctor left the practice and I started going to a new cardiologist. In 2004 the new cardiologist gave me a stress test. By this time my blood pressure was much better because I lost weight. But, I was having a problem with what turned out to be an irregular heart beat (detected by a halter monitor). I underwent a cardiac ablation to correct the irregular heartbeat. Prior to the ablation, I was taken off of the Toprol because it was now causing my hear rate to drop too low. Blood pressure is still great. Also, an echocardiogram showed that I also have BAV, although, as of last year, it was functioning fine. I have the same tests scheduled for next month for follow up.

MY QUESTIONS TO YOU: I say all of the previous to preface that all of my life I've had what I now consider to be signs of my heart conditions. Please tell me what you think and if anyone else has had similar experiences. First of all, I've never had stamina. The first time I had to run a mile (very slowly) for P.E., I threw up. Just one example of my athletic ability (which was consistently pathetic). When I was seven years old I slid down the pole in the middle of what we called the monkey bars. When I hit the ground I had a severe pain in my chest and grab my chest with my hands. My body hurled backward against the bars. A teacher, or whoever, took me into the classroom and I sat there for the rest of recess. I wonder why they didn't do more, but oh well. I do remember being exhausted. The same thing happenend when I was eight, but this time I was on the see-saw. I was a very small boy and the girl on the other end (although younger) was too big of a partner for me and I couldn't get down and was sitting there up in the air. Someone came to my "aid" and slammed my side down. I had the same experience as on the monkey bars, this time rolling onto the ground in severe pain and holding my chest. Again, they sat me in the classroom for the remainder of recess. Throughout the rest of my life I always tired easy and was thought to be a lazy person. So, I always felt that was my problem.

When I was in the 10th grade, during civics class, I suddenly couldn't see anything, everything went white. I froze and sat there until it went away in a few minutes. I'm glad I wasn't called on for anything! I was so shy that I didn't say a word to anyone. The same thing happened to me as an adult. My eye doctor thought was probably an indication of migraines, which in those incidents a headache wasn't involved. When I was 29, I got my first pair of glasses. It was discovered then that I had had a detached retina at some point my life and it had reattached itself. I now have limited peripheral vision in my right eye (hardly noticeable to me). When the detached retina and spontaneous reattachment ocurred, I have no clue. But, I've always wandered about those two visual disturbances.

So, please let me know if you think any of these experiences from my past may have anything to do with my heart or if anyone else had similar experiences. I have told doctors about these things and was met with blank stares basically. So, am I crazy, did I have isolated unexplained "chest pains", or do I sound like any of you? Thanks for taking the time to read this "book." Wise

 

[Barry]

I was diagnosed with MVP in the mid-70's. I was asymptomatic, it got caught in a physical exam. Because of the lousy valves available at that time, the doc told me to basicly stay away from docs so long as I was asymptomatic 'cause docs like to cut on you.

Fast forward 30 years. I started experiencing shortness of breath, and was lying in bed breathing OK but it didn't really matter - I still couldn't catch my breath. Sat up a bit and felt better. Then remembered that my doc had told me about just that being a classic sign of going into congestive heart failure. Went to the ER, that's what it was, got a St. Jude's valve.

Because I'd waited so long, I did some damage to my heart and it's somewhat enlarged. Have chronic atrial fibrillation now, too, although I don't know if that's related.

There's a commonly-cited rule of thumb around these forums with regard to valve replacement: Sooner is better than later. (although I can't say that was true when I was first diagnosed with MVP)

I'm on beta-blockers, too, and it's gonna be hard to sort out the fatigue from side-effects of the beta-blockers. They leave me spending most of my time feeling like I'm trying to wake up.

The deal with whether you do or do not have MVP is a bit weird. Hopefully the more knowledgable here will chip in, but it seemed weird that a doc told you both that you have MVP and that the valves are OK - those are mutually exclusive. MVP is when the mitral valve collapses in on itself and allows blood to leak through when it should be shut, diminishing the effectiveness and efficiency of the heart as a pump and making it work harder. It should show up as a murmor and it should show up on an echocardiogram (at least mine did). A lot of MVP is benign and very common, though, asymptomatic like mine was for years and years, so if it's not severe it doesn't necessarily mean a valve replacement.

 

[Wise]

The deal with whether you do or do not have MVP is a bit weird...MVP is when the mitral valve collapses in on itself and allows blood to leak through when it should be shut..

Thanks Barry. You made me realize I omitted one small bit of info. I do have a trace leakage as far as the mitral valve is concerned...but not problematic since it's so minor, I'm told. Sorry.

 

[Karlynn]

Wise, I didn't have the chest pain until my early 20's, but I was never the best athlete in the world. I was always getting winded too fast. When I was 5 they heard a heart murmur. At the time, all they did (could?) do was an EKG. Apparently it wasn't loud enough to warrent a lot of concern to go the cath route. The murmur later "disappeared" until I got married at 22. I was going to the same family DR. my entire life. He was the one that caught it when I was a child and caught it again at 22. At that time, an echo was done and MVP was dx'd.

I've felt that the MVP finally explained why I always hated and dreaded the President's Physical Fitness test every year in PE. I always felt like such a light weight. Couldn't do the 440 at anything more than a run/walk. Hated the situps. Basically I never made the minimum times. Unfortunately, passing the test was always part of my PE grade. I hated the Track units in PE too. I was in marching band and seemed to tollerate it pretty well. Except for the end of summer practices that would go on for 3 or 4 hours.

I always felt like I was just not "gifted" physically. At 22, I felt so relieved to know that there was a reason, all along, for how I felt. At 32, when I had my valve replaced, I felt like sending a "The New Valve Has Arrived" announcements to all my nasty PE teachers that berated me for not "trying hard enough".

 

[Wise]

Wise, I didn't have the chest pain until my early 20's, but I was never the best athlete in the world. I was always getting winded too fast. When I was 5 they heard a heart murmur. At the time, all they did (could?) do was an EKG. Apparently it wasn't loud enough to warrent a lot of concern to go the cath route. The murmur later "disappeared" until I got married at 22. I was going to the same family DR. my entire life. He was the one that caught it when I was a child and caught it again at 22. At that time, an echo was done and MVP was dx'd.

I've felt that the MVP finally explained why I always hated and dreaded the President's Physical Fitness test every year in PE. I always felt like such a light weight. Couldn't do the 440 at anything more than a run/walk. Hated the situps. Basically I never made the minimum times. Unfortunately, passing the test was always part of my PE grade. I hated the Track units in PE too. I was in marching band and seemed to tollerate it pretty well. Except for the end of summer practices that would go on for 3 or 4 hours.

I always felt like I was just not "gifted" physically. At 22, I felt so relieved to know that there was a reason, all along, for how I felt. At 32, when I had my valve replaced, I felt like sending a "The New Valve Has Arrived" announcements to all my nasty PE teachers that berated me for not "trying hard enough".

Karlynn, I can totally relate to the not "trying hard enough" bit. This is what I love about this site, finding others like you and knowing that YOU weren't the problem all along. Thanks

 

[Wise]

Thanks Rachell. I did PM Arlyss as you suggested. The posts I've received are beginning to make me feel like a not so unusual person. *SMILE*

 

[Marguerite53]

hm.

hm.

Well, Wise. I'm glad you shared your stories. That's what we're here for, after all. I'm 51 BAV, moderate AS and have never been very athletic -- tall, thin, growing up so basketball was a fun but never serious sport. Always turned beet red and felt winded (I have funny, dry skin, don't perspire much so all my heat is held in and I get very hot. I have always attributed my disinterest in sports to my overheating! Perhaps falsely.). I've always been very strong though, prided myself on how much I could lift and move around. That always felt better than sports -- good hard work.

As I watch my very very athletic daughter (17) perform feats of strength and agility, I have wondered why I was not like her (identical builds). We have yet to confirm or deny that she has any heart issues. I just don't know if I can blame it on my heart. For her, it's almost like kinesthetic intelligence.

Many children are not motivated to play sports or perform playground prowess. Being the mother of 3, I can certainly tell you that turning grey/green can occur from all kinds of things!! Nasty virus, dehydration, getting the wind knocked out of you, social fear.....lots of things. I certainly remember falls where the wind was knocked out of me and those falls did hurt in the chest!!

Now the vision and eye thing sound more serious. A detached retina is no joke. You are lucky it wasnt' a medical emergency and that your eyesight is intact. My mother had an emergency detachment due to prolonged high blood pressure and has a similar vision problem. She has trouble with depth perception -- as in she can't always see if there's a stair or flat path under her feet. Her mother had glaucoma. She now has angle closure glaucoma. I have visual migraines and depending on what triggered your white out, suspect that may have been what it was (if it weren't the actual detachment you describe)

As for Barry's comment " I'm on beta-blockers, too, and it's gonna be hard to sort out the fatigue from side-effects of the beta-blockers. They leave me spending most of my time feeling like I'm trying to wake up." I am able to relate. I've been on beta-blockers only a few months and that is exactly how I feel; like I spend most of my time feeling like I'm trying to wake up!!

I certainly wouldn't spend too much time thinking about why you did or didn't do things athletically as you were growing up. After all, while others were out there running in circles trying to beat a bunch of numbers, you were most certainly spending your time exercising another part of your body -- probably your brain!! Nothing wrong with that!!

Marguerite

 

[debster913]

Hi, Wise---
Thanks for sharing your story. Here, we're all "in it together." Like you, I have MVP. I had a heart attack at birth that messed up my valve and caused it to regurgitate. I was never all that athletic as a kid either; part of my birth trauma was that I have a weak right side. I couldn't play most sports because of my physical limitations, but I could run pretty fast. I joined track sophomore year of high school, but not before my cardiologist put me through every stress/cardiac test imaginable. Had to quit junior year as all the competition was taking its toll on my heart.

It wasn't until I was 23 that I began noticing symptoms of my MVP. I was shopping with my mom one day when my heart began palpitating crazily, and the room grew dark on me. I went to the ER, everything checked out, but when I went to my cardiologist the following week, he noticed moderate leakage and PVCs. He then prescribed Atenolol. Been on it ever since (about 7 years now). Sometimes I can't tell the difference between heart-related symptoms and side effects from the medication, either. I'm always tired, I'm short of breath, and my heart hates caffeine. (Get all palpitat-y) with it.

All I can say is hang in there and let your cardiologist know everything that's going on. Keep us posted!
--Debbie

 

[geebee]

Wise,

You describe MVP symptoms very accurately. Tiredness, heart pain, rate disturbances, etc. are all classic. I had MVP, stenosis and regurge before my first surgery and had all of these symptoms along with SOB. So, no, you are not crazy and I am sorry they didn't explore your problems as a child (the school was wrong not to follow up on the chest pain). However, when I was a kid, my rheumatic fever symptoms were tagged as "growing pains" so I was never treated.

The "white out" you describe can be a classic symptom of retinal detachment as well. You are VERY lucky that it reattached itself (VERY uncommon) and slight peripheral vision issue is all that came of it. White outs can also be a migraine symptom but I would lean more towards the retina.

Has your cardio discussed surgery with you? If so, what kind of timeframe? My cardio & surgeon have always told me that surgery is necessary when your lifestyle is limited more than you want it to be.

 

[Wise]

I certainly wouldn't spend too much time thinking about why you did or didn't do things athletically as you were growing up. After all, while others were out there running in circles trying to beat a bunch of numbers, you were most certainly spending your time exercising another part of your body -- probably your brain!! Nothing wrong with that!!

Don't worry about that one. I don't spend much time thinking about that. Just mentioned it because it brought out my lack of stamina/endurance I had all of my life. While I do realize that through exercise and proper nutrition, I can and have to a degree improved in that area.

As far as the migraine thing goes, the only thing I wonder about with my visual probs is that I didn't have headaches. Can you have migraines without pain?

Thanks for your informative response. Wise

 

[Wise]

Has your cardio discussed surgery with you?

Geebee, no cardio hasn't discussed surgery regarding MVP. Tests only show mild regurgitation (as of a year ago). The symptoms of MVP have been there nonetheless. Your post was very helpful. Thanks

Debster, thank you also for your post. I appreciate the time all of you have taken to read and respond. It is reassuring to see others say what I've felt so many years. Also, did I understand correctly, you had a heart attack at birth? That's bizarre. I'm so glad you have done as well as you have, considering.

 

[geebee]

Wise,

Looking in my "library" of articles and came across this one which I find to be "MVP for dummies" (no reflection on you ). It is simple, concise and fairly complete. It just confirms some of the info in this thread.

http://www.heartmaine.com/Patient Education/Valvular Disease - Mitral Valve Prolapse.htm

 

[Wise]

Wise,
Looking in my "library" of articles and came across this one which I find to be "MVP for dummies" (no reflection on you...

I'll take all of "for dummies" help I can get. Thanks again.

 

[karlaosh]

Wise:

Yes, you can have migraines without headache. They're called ocular migraines, which I've been having since I was a kid at least a couple of times a month. A snowy or blinking light or white-out sensation starts up in one eye...usually just bits of the white at first and then progressing to occlude most of the vision in that eye and then slowly receding back to nothing over the course of about half an hour. I almost never get a headache afterwards. But it affects my vision for a time.

Best-
Karla

 

[debster913]

Yup, sounds crazy, doesn't it? My pediatric cardiologist explained it to me, and the info is also on my birth record. I've always been a "stress case," and according to my Dr., the stress I suffered while I was being born caused the heart attack.
All the same--good luck to you, and definitely keep us updated!

 

[Wise]

Thanks for all of the responses to my questions. They have been helpful to me. I ended up getting more information than I expected. I read some of Arlyss' past threads, which provides a lot of information for those with BAV and BAVD (which apparently can include MVP). Sometimes you need help getting your head on straight about yourself. Doctors, bless their hearts, just can't always help you to understand "why you have always been like this." Many thanks. Wise

 

[Marguerite53]

I agree about the doctors!

I agree about the doctors!

That's the beauty of this site, isn't it? There are so many caring people with information -- such a human place!!

Many of us have ocular migraines. I didn't know that was what I was experiencing until I saw a drawing of "fortifications" in a science textbook during a psychology perception class in college (1975). (a rarely used term now, which described the zig zag lines as if they were fort-like fortifications). I hadn't even known to ask about my funny visuals since they didn't cause any pain. Sure explained why I did so poorly in French class right after lunch -- lots of MSG in the cafeteria in those days, and a blaring white sunny wall through the windows. The combination would set off a visual migraine that lasted half the class. If you are noticing that you are bothered by the disturbances more frequently, you might look up our lengthy discussions -- I believe it was a thread called visual disturbances -- to help you discover what might be triggering yours. There lies the best help -- not letting them get started in the first place.

Interestingly, since starting BP meds, I have far fewer episodes. This would not account for the frequency of them earlier in life as my BP was always low. Who knows what else those BP meds do, anyway!

Hope this helps. Marguerite

 

[Wise]

That's the beauty of this site, isn't it? There are so many caring people with information -- such a human place!!

Many of us have ocular migraines. I didn't know that was what I was experiencing until I saw a drawing of "fortifications" in a science textbook during a psychology perception class in college (1975). (a rarely used term now, which described the zig zag lines as if they were fort-like fortifications). I hadn't even known to ask about my funny visuals since they didn't cause any pain. Sure explained why I did so poorly in French class right after lunch -- lots of MSG in the cafeteria in those days, and a blaring white sunny wall through the windows. The combination would set off a visual migraine that lasted half the class. If you are noticing that you are bothered by the disturbances more frequently, you might look up our lengthy discussions -- I believe it was a thread called visual disturbances -- to help you discover what might be triggering yours. There lies the best help -- not letting them get started in the first place.

Interestingly, since starting BP meds, I have far fewer episodes. This would not account for the frequency of them earlier in life as my BP was always low. Who knows what else those BP meds do, anyway!

Hope this helps. Marguerite

Marguerite, yes, it does help. I will read the visual disturbances thread. Can't learn too much. However, the two incidents I mentioned were the only ones I ever had. I have floaters all the time, but not a big deal. My wonderful eye doctor keeps a close watch on my retina. The new equipment they have now lets you see your eye on their computer after the exam. My wife is blind from retinitis pigmentosa. So, the two of us have a big interest in keeping my eyes as healthy as possible.

Wise

 

[PJmomrunner]

How very interesting that many of us get these "ocular migraines." I have gotten these for years, but I used to get them only before I would get a migraine. I was told by a neurologist that they are called auras. http://www.headaches.org/consumer/topicsheets/ocularmigraine.html I found that if I took a baby aspirin a day I didn't get the auras or the headaches. Over the course of maybe ten years the migraines have diminished, but the auras have not. Auras look like very large jagged floaters. I had no idea my auras and migraines may be related to BAVD. It was speculated that my auras were somehow connected to a blood disorder I have called lupus anticoagulant (not related to lupus, named that because it was first found in people with lupus). Anyone else got that?

Wise: About the detached retina...are you very nearsighted? I know you were a small child and perhaps you are of smaller stature now, so I don't mean to suggest that you might have Marfan Syndrome, but detached retinas can be a characteristic of MFS and the Marfan Foundation posts BAVD and Mitral Valve Prolapse Syndrome on their website as related disorders. They state that they are related in that they may, like MFS, be caused by a mutation of the FBN1 gene. http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=78

Thanks for starting this interesting thread.

P. J.

 

[Wise]

Wise: About the detached retina...are you very nearsighted? I know you were a small child and perhaps you are of smaller stature now, so I don't mean to suggest that you might have Marfan Syndrome, but detached retinas can be a characteristic of MFS and the Marfan Foundation posts BAVD and Mitral Valve Prolapse Syndrome on their website as related disorders. They state that they are related in that they may, like MFS, be caused by a mutation of the FBN1 gene. http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=78

Thanks for starting this interesting thread.

P. J.

Hi, P.J., I am nearsighted and getting more so each year. But, I wouldn't say "very" nearsighted in that I can see without my glasses, but I'm not comfortable driving without them. I definitely can't drive at night without them. I don't know anything about Marfan Syndrome, but I'm going to check it out. I'm not a big person still, but not as small comparatively as I was when a child. I'm 5'6", weigh about 155 (gained a little because of stress in the last three weeks). Thanks for the info! Wise