It had been a particularly stressful few weeks. My nine-month-old son had just started walking (and was getting into everything he shouldn't), my husband and I had just moved in to our first apartment (we had previously lived with his mother), I was about to start working again at a brand new job I had no experience with (after being a stay-at-home mom for almost a year), we couldn't find a baby-sitter (not that we could afford one anyway), and I had just bought a new car to facilitate the forty-five minute rush-hour commute each way to my new job (after not driving for five years). Everything had changed dramatically in just a short period of time. Even still, I was twenty-three years young, healthy, and I felt like I was dealing with everything okay. All the changes were for the better, and we definitely needed the added income of my job. So why did I feel so stressed?

One summer night a short time later everything came to a head. I had been home alone with my son all day, and I was extremely tired by the time he went to bed for the evening. I had been so busy all day that I hadn't even taken the time to eat, so at around ten o'clock I did a quick search of the refrigerator then had a very light supper with a big glass of water. Then I put away all the toys, cleaned the kitchen, did a load of laundry, and took out the trash before finally letting myself get into bed.

At about midnight, my husband came home from work. I woke up when I heard the noise and realized my bladder felt very full. As I stumbled back to bed after using the bathroom, I remember feeling extremely light-headed. The whole world seemed to be spinning around me as I climbed under the covers. I was lying down, but the feeling only seemed to get worse. I asked my husband to get a drink for me--maybe I was dehydrated or something? It seemed to help a little, but an hour later my head was still swimming. I began to shake uncontrollably and had to go to the bathroom twice, and had horrible stomach cramping. It was at about this time that I started to get pretty nervous. What was going on? I called my doctor and told him everything that was happening. I must have been dreaming if I thought I was going to get any sympathy. "You can't faint when you're lying down...just go back to bed and relax," the doctor said. I felt like I was on death's doorstep. I decided I needed to go to the Emergency Room after two more hours had passed and I wasn't any better. They examined me, then told me there was nothing they could find wrong and asked if I was under any unusual amount of stress. I thought back to all the recent changes in my life and conceded that maybe they were right--maybe it was all in my head. They told me I probably had had an anxiety attack, then gave me a prescription for an antihistamine derivative to help me sleep, then they sent me home.

In the days that followed, I slowly sank into hell. Every day a new symptom would appear--like insomnia, fatigue, panic attacks, migraine headaches, chronic stomach cramping, chest pains, and tingling and numbness in my fingers--and I went to the doctor's office all the time because of them. I was tested for diabetes, hypoglycemia, and an overactive thyroid; but all results were normal. The only thing slightly off balance was my iron level, which was a little low. I was put on: Zantac in order to try and control all the acid my stomach was producing, Xanax and then Ativan in order to try to calm me down, and finally Zoloft (a relative of Prozac) in order to try to control my so-called "depression." I had never been on so many medications at one time before and I was determined not to have to rely on drugs for the rest of my life. Appointments were to be made for upper G.I. and lower G.I. tests. I could feel myself becoming a hypochondriac, and I hated it! I lost about twenty pounds that summer, along with a major portion of my sanity.

That was my existence for three months. Even so, I began my new job and really enjoyed the demanding work. I was a mortgage company's settlement technician and, although extremely stressful, it was exciting. I got used to taking "Imodium A-D Breaks" every day, and thought about buying stock in the company that made it since I felt like I was the sole source keeping them in business. When I got home at night, I fed my baby, played with him for a couple of hours before he went to bed, did laundry and dishes, cleaned the house, ate a quick dinner, and fell into bed. I accepted what the doctors were telling me, that it was "all in my head."

As time progressed, the symptoms began to get worse. I was advised to seek psychiatric counseling in order to get myself under control. I began to see a private counselor (since my insurance didn't cover seeing a professional) and she helped me a great deal just by talking about everything I was going through. I still didn't feel like I belonged there, and so I only went for a few months. But early one morning a short while later, I called her to let her know I was about to admit myself to the psychiatric unit of the local hospital--because I thought I was having a nervous breakdown. That morning I hadn't even been able to get dressed. I just sat on the couch shivering with cold--as if it was only 30 degrees--and wondered how I could manage to survive any longer. I was crying, and felt like I was surely losing my mind. She laughed and told me that if I had the presence of mind to call her and tell her I was having a nervous breakdown--she was positive that I was not. That made me feel better, but I was still shaking horribly and having non-stop diarrhea. My head was spinning out of control, and I felt like an emotional wreck! When I got to the hospital, they had me speak to a psychiatric nurse who told me, after we talked at length (and asking me a million questions), that she felt I was not having a breakdown or going crazy. She began to tell me the most interesting story about her own mother who had had symptoms similar to what I had described, and had been diagnosed with mitral valve prolapse (MVP).

The Diagnosis

Mitral valve prolapse? I recognized the name of the genetic condition, I knew my grandmother had it (and later found out that at least five of my relatives also have it). The doctor then came in and listened intently to my heart. I told him my doctor had found a heart murmur when I was sixteen, and that I had never heard anything more about it since then. I was then sent down the hall to have an echocardiogram (a sonogram of the heart) done. The diagnosis was clear: Mitral Valve Prolapse. The doctor then had me hooked up to a Holter monitor that gives a continuous EKG recording for twenty-four hours so that we could record any periods of palpitations or racing. He gave me a prescription for Inderal (a beta blocker), then sent me home with the admonition to make sure I saw a cardiologist once every year for the rest of my life, and to be sure and take a preventative antibiotic treatment before having any invasive procedures done (like seeing the dentist).

I finally had a name for what was ruining my life! The only problem was that I didn't fully understand how a heart condition could cause all the weird symptoms I was having. I also didn't understand why, if I was born with MVP, it took this long for me to find out I had it. Could it really be possible that MVP was the culprit? It was hard to believe, especially since for the past three months I had had it droned in my head from all my doctors that it was "all in my head." I recalled the few episodes of fainting spells I'd had since a child, the low exercise tolerance I had always experienced, the palpitations...was it possible that MVP was the cause of all of it? I made an appointment with a cardiologist and waited for the opportunity to get some answers to my questions.

The Confusion

Unfortunately, the cardiologist didn't have any helpful answers. "It's possible that the symptoms are related, but they aren't life-threatening and you shouldn't worry about dying or getting ill or anything," he told me. Well now, that was easy for him to say. I was beginning to feel as if no progress had been made at all! Was MVP causing my symptoms, or not? The answer had to be clear cut, and I was determined to find out what it was. I went home with the pamphlet called "Mitral Valve Prolapse--A Slight Difference in A Healthy Heart" [Krames Communications, 1988] and read it thoroughly. It didn't take long to realize that according to this information, the only problem I might ever have is palpitations now and then.

About six months later, I read an article in a fitness magazine about a lady who had been diagnosed with MVP and who had found a support group through a diagnosis and treatment center in Alabama. I blinked my eyes in disbelief and read the whole article again. There was actually a whole center devoted to diagnosis and treatment of MVP? I had to find out more. I called the operator to get the area code for the city and state where the center was located, then I called Information in that state and asked for the center's phone number: No listing. I had to get a hold of this center!

Another six months went by (in which my husband and I moved again), and my symptoms were still bothering me a great deal. I went through all my papers looking for the same magazine article I had read the past winter--and I finally found it. I sat staring at it in frustration, and then realized that the woman who had written it had listed the city and state where she lived--along with her last name. Why hadn't this occurred to me before? I couldn't believe my luck! I called Information again and they gave me her number. I was shaking as I dialed it, what if she was really upset that I was bothering her like this? This was invasion of privacy in a big way. I tried to calm down by telling myself that if she hadn't wanted anyone to get this information, she wouldn't have allowed all of it to be printed in the first place. Still, I was nervous. As it turned out I was only able to talk to her answering machine anyway. I left my phone number and the reason I was calling, and asked her to please call me back.

Then about two weeks went by. I figured that she must have really been upset that some stranger was calling her and that she didn't want to call me back--I definitely wasn't about to call her again. Then one day in the middle of the afternoon, she called. It was wonderful to speak to someone who had the same condition that I did. I felt like I wasn't alone afterall. She gave me the phone number I needed (it turned out that I hadn't been giving the full name of the center and that's why I couldn't get the number through Information) and said that she would have called sooner but that she had been on vacation. After thanking her for calling, I immediately called the center and asked them to please find a support group for me in my area. The best they could do was to tell me of one that was in a neighboring state--an hour's drive away. I didn't care, as long as I could talk to other people about what I was going through, and to find out if anyone else was suffering like I was.

I called the leader of the group who told me that the support group was just forming and the first meeting would be in two months--and that she would send me a book about MVP right away.

Validation

When I received the book, I looked at the front cover and started crying. I sat down on the floor and just sobbed because I felt so relieved...right there, in bold letters, was a list of all the symptoms I had been suffering from! I felt so completely validated. It was a turning point in my life. I read the book from cover to cover right then and there--and that night, I read it again. The book spoke of "mitral valve prolapse syndrome," not simply mitral valve prolapse. Could there be a difference between the two? And if so, which did I have?

Although it wasn't always easy, I began to try re-training my thoughts so that I wouldn't automatically think that I was going crazy when I started to feel the old feelings of anxiety, and all the symptoms that went along with it.

Now the time had come to get my hands on every piece of information that there was on mitral valve prolapse syndrome (MVPS), and to work on understanding the difference between it and MVP--if there was any.

Conclusion

This website is the end-result of all my searching. My goal in writing it was to relay any and all information regarding how to cope with MVPS: "tricks and tips" on how to control the symptoms, advice for family and friends of those diagnosed, advice on how to change your lifestyle so as to reduce the occurrence of symptoms, specific information regarding how to handle panic and anxiety attacks, and to reassure all of you--through personal stories--that you are not alone.