Those affected with MVPS/D have often been frustrated with traditional medical care. They have frequently felt isolated and abandoned. Physicians, too, have been frustrated because of the lack of adequate diagnostic testing, tools, and effective treatment. When confronted with repetitive complaints by patients, doctors often respond with simple avoidance and patronizing comment "it's all in your head."
WELL, WE KNOW BETTER!

About our organization: The founders are Jim Durante, Bonnie Durante, and Cheryl Durante Bihun. As fellow sufferers, we are all passionately dedicated to spreading the word and educating people about Mitral Valve Prolapse Syndrome and Dysautonomia. Before starting our nonprofit, charitable organization we traveled over 30,000 miles educating ourselves about this syndrome. Our support group was formed in September of 1991, and shortly after that we began publishing a bimonthly newsletter. We have helped to organize and have spoken at five MVPS seminars in Illinois. Please contact us for future support group dates. We encourage MVPS patients and their families to attend.

FREE INFORMATION

EDUCATION AND RESOURCE MATERIALS

"The authors clearly did their homework. I suspect that this will become the new Bible for MVP, and I send a hearty congratulations!" Lyn Frederickson, RN, MSN, author, "Confronting Mitral Valve Prolapse Syndrome."

What is MVP (mitral valve prolapse)? In a normal valve the flow of blood goes from the left atrium to the left ventricle. Upon closing it prevents blood from going back into the left atrium. With MVP the flaps don't close evenly. One or both flaps collapse backwards, sometimes allowing a small amount of blood to leak through the valve. Mitral valve prolapse is a genetic disorder and seems to affect women three times more than men. It is one of the most common cardiac findings. There is usually no need to be concerned. The heart is functioning perfectly normally and does not tend to degenerate over time. Diagnosis is usually confirmed by an echocardiogram, which provides an actual picture of the valve. Infection of the mitral valve, endocarditis, is extremely rare. However, people with MVP have a slightly greater risk of contracting it. For this reason we suggest antibiotic prophylaxis for certain dental and surgical procedures. Speak to your physician.

What is MVP Syndrome? Forty percent of patients with mitral valve prolapse also have an imbalance of the autonomic nervous system, or ANS, called dysautonomia. The ANS is composed of two systems; the parasympathetic and the sympathetic. It controls virtually all bodily functions, such as respiration, heartbeat, blood pressure, vision, and digestion. When this system is out of balance it can cause myriad of symptoms, including panic attacks, anxiety, fatigue, palpitations, migraines, irritable bowel syndrome (IBS), and more. This combination of symptoms is know as MVP Syndrome. Diagnosis is made by physical examination, a careful medical history, and an echocardiogram. Unfortunately, MVP does not always show up on an echocardiogram. Thus, MVPS is a clinical diagnosis. Usually symptoms do not show up before the age of 14 or 15, but more and more children display central nervous system symptoms before the MVP shows up. Ninety-eight percent of people with MVP Syndrome have nothing wrong with their heart. The majority of symptoms are caused by an out-of-balance nervous system.

MVPS info: Common triggering events - childbirth, major viral illness, menopause, accident, surgery, college (leaving home and stress), death of a loved one, marriage, moving, divorce. Our nervous system doesn't differentiate between good or bad stress.

People with MVPS have a higher incidence of: TMJ temporomandibular joint dysfunction), scoliosis, fibromyalgia, PMS, fibrocystic breast disorder, tinnitus, infertility, SAD (seasonal affective disorder), altitude sickness, seasickness, and endometriosis.

Things to avoid: Humidity, extreme temperatures, saunas, lifting heavy weights.

About our organization
What is MVP and what is MVP Syndrome?
MVPS info
Order our newsletter, DVD, video, and book by mail
Order our newsletter, DVD, video, and book by credit card
Read articles from past newsletter issues
Dr. Phillip C. Watkins, Director of the MVP Center, Birmingham Alabama will answer your questions.
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MVP affects about 15 to 25 percent of the population. Forty percent of these people have dysautonomia (MVP Syndrome). Seventy percent of patients have depression. Only 2 percent of MVP patients have actual structural problems. At least 40 to 60 percent of MVPS patients suffer from panic attacks. MVPS patients often have low energy levels. Forty to 50 percent of echocardiograms do NOT detect MVP.

Treatment: Education - becoming educated will reduce the unknown, thereby reducing the fear. Support groups, seminars, books, newsletters, and videos are very helpful.

Diet: Eliminate nervous system stimulants, such as caffeine and sugar. Alcohol is not usually tolerated well by MVPS patients. MVPS patients should drink at least 64 ounces of fluid per day, more in hot weather, to keep from dehydrating.

Exercise: Start an aerobic exercise program. Build up gradually to at least 30 minutes per day, 5 times per week.

Medication: Beta-blockers, calcium channel blockers, antianxiety agents, antidepressants, anti-migraine, anti-diarrheal, and acid controllers. Avoid medications that contain stimulants, such as epinephrine and pseudoephedrine.

PMA: Positive mental attitude. As Lyn Frederickson says, "Without PMA it is difficult to have the emotional energy to begin, much less stick with, this treatment program."

Q: Am I going to have a heart attack?
A: People with MVP have no more incidence of heart attack than the normal population.

Q: Am I going crazy?
A: No, you are not crazy, but rather living with MVP Syndrome, and the lack of information certainly can make you feel as if you are going crazy.

Q: Is a cardiologist the best doctor for me to see?
A: Not neccessarily. Remember, except in very rare cases, this is not a serious heart condition. The best doctor for you is the one who is compassionate, believes, and has some understanding of the syndrome.

Q: I am ready to have valve replacement surgery, but my doctor ways I don't need it. I'm tired of this anxiety, constant migraines, and chest pain.
A: Your doctor is right. Surgery will not get rid of your symptoms. Again, MVPS is not a heart condition, but rather a central nervous system imbalance.

Q: My echocardiogram was negative, but I have all the symptoms. What does this mean?
A: Approximately 40 to 50 percent of the time MVP does NOT show up on an echocardiogram. That doesn't necessarily mean you don't have MVPS. Just as important as the test itself is your family history.

Q: Will pregnancy hurt my MVP?
A: No, in fact, most MVP patients report that they feel much better during their pregnancy. We think this is due to an increase in blood volume secondary to hormonal changes brought about by the pregnancy.

Q: I had a panic attack at my dentist's office after I received a shop of Novocaine. Why did this happen?
A: Your dentist may have given you an injection of Novocaine with epinephrine (adrenaline). The adrenaline is useful for constricting blood vessels but is contraindicated in patients with MVP because they are extremely sensitive to adrenline, and it may precipitate panic attacks as well as irregular heart rhythm, rapid heartbeat, and chest pain. Inform your dentist that you have MVP, and make sure that he uses a local anesthetic without adrenaline.

My name is Cheryl Durante Bihun. I'm Bonnie's daughter. I was diagnosed with MVP in 1988. I was really happy to get a diagnosis, but I still didn't quite know everything that was involved with it. Frankly, I was just happy to get any diagnosis, because after years of running around to all different kinds of doctors, I was actually glad one had finally found something wrong with me. A few months after that diagnosis I learned about Lyn Frederickson's book, "Confronting Mitral Valve Prolapse Syndrome." I ordered it through the mail. The day it arrived I took it out of the mailbox, ran in the house, sat down, and read it cover to cover. I can't describe how I felt afterwards. I could not believe what I had just read. It was the story of my life! There's a page in that book that lists most of the major and minor symptoms of the syndrome. I believe there are 32 symptoms listed. I happen to have all but one of the symptoms - I don't have fainting spells. So, I obviously had a lot of work to do to try and get my central nervous system in balance.

The first thing I needed to do was to stop the panic attacks I had recently begun having. I was so frightened by them and worried that I was either going crazy or that I was going to die, that I couldn't possibly concentrate yet on exercise, increasing my fluid intake, or any of the treatment aspects of this syndrome. I was an absolute nervous wreck - I felt agitated 24 hours a day. I couldn't do anything alone. I remember being in the grocery store with my husband, and I was literally hanging on to him the whole time we were in there. I felt terrified, and didn't know why. It was unexplainable. I also could not stay in my own house alone. So I began staying at my parents' house, and when my husband worked the night shift I would stay at my parents' overnight. I was very lucky in that my family was so understanding of my problems. They tried to help me as much as they could. That was very difficult to do at that point because I had become so paranoid. If I got a headache I was certain I had a brain tumor. Of course the headache would go away, then I would pick out something else. I would get a pain in my calf - that was a blood clot. No one, not even a doctor could convince me I didn't have something terminal. That was definitely one of the worst points in my life.

What finally happened was my cardiologist suggested I take a beta-blocker, and after months of panicking, the attacks stopped after just ten days on the medication. For those of you who are curious, I don't remember how long I was on the beta-blocker, but when I got off of it, the panic attacks did not return. As a matter of fact I haven't had an attack in ten years. However, I would have been more than willing to go back on the medication had the attacks returned.

After I was relieved of the panic I then felt capable of starting an exercise program, drinking more fluids, eliminating caffeine, and all of those things that I needed to do to feel better. As far as the exercise goes, I did not realize how deconditioned I had become. Because of that it took me months of gradually building up to reach my optimal amount of exercise. I'm not going to tell you how much fun exercising is. Believe me, it is not the highlight of my day. But I really need to do it because it has proven to be very beneficial. Doing it regularly has brought my resting pulse down considerably - it was very high at one time. I have so much more energy than I used to. Fatigue was a big problem for me. Exercising also lowered my cholesterol, which I needed to do; so that was an added bonus. Increasing my fluid intake has also helped to alleviate my fatigue. And it did something I never expected it to do - it took away most of my dizziness. I really have to push myself to drink a lot, because I don't often get thirsty. Avoiding caffeine and sugar is my real weakness. I'm a chocoholic - have been for many years. The ultimate breakfast for me used to be a huge piece of chocolate layer cake; sounds great, doesn't it? Unfortunately, I had no idea what it was doing to my body. Now, I am human, so I cannot avoid it completely, but I do know there will be a price to pay if I eat chocolate. I will get much more tired, and in general I'll just feel lousy.

Once I learned that I had this syndrome I decided to take a good look at myself. And what I realized was that I have always had anxiety. For example, I hated every day of school, from the first day of kindergarten until the last day of high school. I was a nervous child. I could never even consider extracurricular school activites. My goal was to make it through the day somehow and come straight home. Home was my comfort zone. I felt relieved and safe once I got home. And I worried about everything - a chronic worrier. On a rare day when I would wake up not worred about anything, I would worry that there was nothing to worry about! I know it sounds crazy, but it's true. Keep in mind that I did have friends, and I did alway go out and play and things like that, but for the most part I was merely existing, not living.

All those years of untreated anxiety led to many phobias and fears. I decided I wanted to make a big change in my life. I wanted a better quality of life, but I didn't believe I would be able to do it without a great deal of support. Change is very difficult for me. I knew I would need a lot of encouragment and "pep" talks, so I recruited my own personal cheerleader, who happens to be my husband. I wouldn't be telling my story today if it weren't for the support I received from my husband. He literally held my hand the first three days I took Prozac becuase I was worried it would make me suicidal or a homicidal maniac. By the way, I cannot say enough good things about that drug.

Okay, so am I cured? Well, there is no cure. But I do feel a whole lot better about myself. I used to get so down on myself about my fears and phobias. The shame and guilt are so trememdous when you want to do something or when you think you can't do something that other people appear to do so easily and effortlessly, whether it be flying, driving, going out in crowds, etc. I learned not to buy into that shame and guilt. I refuse to beat myself up anymore about anything.

The way I cope is by taking one day at a time. I enjoy listening to motivational tapes. I love to play good, loud up-tempo music on days when I'm a little down. I try to stay away from negative people. My husband helps me work on overcoming my fears. And I do allow myself moments of self-pity. There are those days when I am not as positive and upbeat as I'd like to be. When that happens I pity myself for a little while, and then I tell myself, "Now that's enough - time to move away from that and go back to being positive." And there is definitely one huge positive to having this syndrome. And that is that I do not take life for granted. You know we all know those people who complain when someone cuts them off in traffic, or when they're delayed at the airport, or they have to wait in a long line for something. If I'm in those situations I'm out there living life, so I can't possibly complain. I can appreciate all the things that most people take for granted.

This is the closest I've ever been to achieving the quality of life I want for myself. It's been a struggle and will probably continue to be a struggle, but it's getting easier, and it's definitely worth it. Cheryl

My name is Jim Durante. I'm Bonnie Durante's son. She is the founder of our support group. I've struggled witih MVP Syndrome my whole life, really. As far back as I can remember I had symptoms such as chest pain, palpitations, lightheadedness, fatigue, irritable bowel, severe anxiety, and phobias. I was able to live with most of the symptoms without them interfering too much in my life. The weakness and fatigue and the pounding and racing of my heart were everyday occurrences to me. They never concerned or scared me, because I thought that they were normal feelings that everyone had. Irritable bowel though, was tough for me to deal with, physically as well as mentally. I don't know which was worse, worrying about going out and having an attack or the actual attack inself.

The one symptom that did severely interfere with my life was anxiety. Anxiety was my worst enemy, living inside me, directing and controlling my life. I was pretty much anxious most of the time, especially when engaging in new activities. It seemed that I had a new fear or phobia every month throughout my childhood. I was scared of just about everything that I thought could harm me, like learning how to ride a bike and how to swim, as well as learnng how to drive. Actually driving was my greatest phobia of all. My hands used to start sweating profusely before I even got in the car. Once I got in the driver's seat my heart started pounding, my body started shaking, and my stomach started gurgling. Some of my other phobias included: Calling people on the telephone, social situations, oral speeches, being alone at night, and dogs.

Being a very observant person I was always full of envy and amazement when I saw how others actually enjoyed taking part in the very same activities that I feared. I was constantly asking myself, "Why am I different? Why aren't I normal?" Most people looked at what kind of fun or challenge could come out of tryng something new. I thought of what harm could come to me in most situations. This was the irrational side of me always coming to the forefront. What happened after years of thinking like this was that I developed what may be the worst fear of all: The fear of fear.

Unfortunately years of anxiety finally took its tool on me, robbing me of my passons as well as my self-esteem. I became slightly agoraphobic and avoided most outside activities. My thinking was very narrow-minded in that my main goal was to avoid engaging in anxiety-provoking situations. Instead of going after life, I avoided it. My anxiety didn't allow me to look or prepare for the future; instead it forced me to live day to day. Hindsight allows me to understand how I merely existed, not lived, day to day.

You'll be happy to know that I'm doing very well these days. Along with educating myself about MVPS, I had to also work on my self-esteem. Although it was hard at first, changing my diet as well as starting to exercise regularly, helped me immensely. Probably the most important thing that I had to do in order to ensure that I'd get better was to learn how to unlearn. I had to, for instance, unlearn the ridiculous lessons that we all learned as youngsters, especially males, such as not admitting or talking about problems we have and thinking that anxiety, panic attacks, and depression are weaknesses. I also had to unlearn the stigma of going to a psychiatrist and taking medicine. It always amazed me how for a lot of people the fear of talking about their problems outweighs the problem itself.

After everything I've been through, it is so gratifying to be part of The Society for MVPS. I will continue to help others with this disorder for as long as I possibly can. Jim

As a mother who has MVPS, I found it difficult to deal with the fact that my three children had inherited this dominant gene. They are now adults and only found out a few years ago why their life had been such a struggle.

We spent a great deal of time going to doctors and enduring many, many medical tests. Two of them were even hospitalized as youngsters to try to identify why they had so many medical complaints and days absent from school. Of course, they never received a diagnosis.

I used to ask, "Why us? Why can't we live like a normal family?" But now I realize we are much closer than most families. We have been through a lot together. I think it has made us stronger. I wish I would have had more knowledge of MVPS when my children were younger. But I have that knowledge now, and I will continue to use it to help others. Bonnie Durante

Copyright. The Society for MVP Syndrome. 2006.
This page was last updated November 22, 2005.