Adults with Cyclic Vomiting Syndrome - Diane - Email from an Adult with CVS

I was adopted in 1956 and grew up on an 80 acre farm in southern Michigan. As far as I was concerned, my early childhood was great. I just was a kid having a good time. Then my (adopted) mom died when I was 11, and my dad eventually auctioned the farm, livestock, and equipment. What followed still seems like a blur. It’s as if I can’t remember it in Technicolor, only in grainy black and white images. My (adopted) dad lost his way in the world and became an alcoholic. He took care of my younger brother and myself to the best of his abilities. We lived with relatives, and when he remarried we moved in with him again. Unfortunately this would not be his only remarriage. In a span of 10 years he remarried 4 more times. It still seems to me, that he lost his soul mate when my (adopted) mom died, and he never recovered from it. I moved out when I was 17, and somehow I finished my last semester of high school and graduated. Five months after graduation I was married and began a family of my own. That’s when the vomiting started.

When I was nineteen years old and eight or nine months pregnant with my daughter, during a spell of “false labor” I started to vomit uncontrollably. After a few days, the obstetrician hospitalized me. The things I remember most about that first hospitalization were the awful things that were said to me. My obstetrician said “some women think they have to puke up those babies. One of the nurses told me that I didn’t care about my baby! That’s how it was in a small mid-western town in 1975. The obstetrician passed away years ago and I have no idea where the nurse ended up, neither one of them ever knowing how much those statements hurt.

At nineteen years old my world began to crumble around me. Doctor after Doctor gave up on me. I began to feel that I was a bother; calling at odd hours, having an episode start while in the doctor’s waiting room. Nothing seemed to help. All the tests showed everything was normal. Then, WHAM, I would start vomiting for no apparent reason. No one could find a physical reason for the episodes of uncontrollable vomiting.

The diagnosis alternated between a physical problem and an emotional problem. I knew it was physical, but it has always been hard to convince anyone. Sometimes I would try, but too often I bought into the idea that it was an emotional problem. Now you see why I bored you with my early childhood story. With what I experienced all the way back to the day I was born and then adopted, it was very easy to believe there was an emotional cause for my strangely unpredictable episodes of vomiting. Doctors began to believe I vomited because I had a somatoform disorder, or a defense mechanism that had run amok, or because I married the wrong person when I was too young. The minute my childhood was considered the idea of an emotional cause fit too well for me to challenge. If I complained that I felt as if I had overcome the events of my childhood and that I truly was not haunted by it, I was largely ignored. Often, I just didn’t feel good enough to resist.

After hearing my story physicians would assure me that there was a good chance they could isolate a physical cause for the vomiting episodes. Of course there would be more tests, some of them not too bad, others pretty uncomfortable (to say the least). It was usually during the second appointment, that they were not quite a confident about isolating a cause for my distress. They had received the test results and once again, the test would show nothing was wrong. I became more and more confused. How could nothing be wrong and I still felt horrible. After a few late night phone calls about medicine that was not helping and a few highly traumatic trips to the emergency room, the Doctor would suggest I seek a psychiatric evaluation.

Over and over and over again I ran from one specialist to the next. Each scheduled appointment or test added to my anxiety about my health. I kept searching for the "trigger” that was apparently starting the reoccurring episodes of vomiting. Sometimes I could attribute the vomiting episodes to food or drink. I seemed to get sick during holidays and family events. I’ve missed many significant events with family and friends; graduations, weddings, funerals, etc. Sometimes it seemed as if the anxiety from the many medical appointments was in some way contributing to my rapidly deteriorating health.

Eventually I became more and more depressed. I tried to commit suicide a couple of times. I was hospitalized for clinical depression twice. During the first hospitalization for depression I began to believe that everyone was correct. When the psychiatrist and physcologists would delve into my life story my adolescent experiences served to confirm the idea that there was a psychological reason for the episodes of vomiting. I could feel my self confidence slipping away at every turn.

My life became overwhelming to me and I didn't know where to turn. No matter how hard I tried to “get well," I couldn’t. My three pregnancies were nightmares. The vomiting episodes become more and more frequent.

After two years of analysis, I came to believe my marriage was contributing to my illness. I got a divorce. The episodes seemed to subside. After a few months I went to an “open house” at the home of one of the local contractors around this area. I was surprised to find, that the contractor was Jim Schoder. We had been friends when we were only fourteen years old! We dated with increasing frequency. I fell in love and I was healthy. After a couple of years we decided to make a commitment to each other and we started our lives together. Life was good! Then once again WHAM, the episodes started again.

As usual, I began searching for “triggers”. I thought, maybe, it was my job. I was an international transportation operations agent for a major U.S. freight forwarder. It was a stressful occupation, sometimes I would shake for a half hour or hour after I got out of work. Jim is such an easy going gut, and he had never seen anything like what I was going through. We thought it was time to find less stressful employment. I obtained a less stressful position in a transportation department of a local manufacturing business. There was still no relief from the episodes of vomiting. Jim vowed that we would find out once and for all what was causing the unpredictable episodes of vomiting. Jim encouraged me to find a part time job. I took a part time job as a receptionist at a friend’s small dental office. I was working 4 mornings a week. In 4 months I missed 14 days more or less. I couldn’t wake up in the morning without either being sick, or having a full blown panic attack, because I was afraid I couldn’t plan or do anything without getting sick! I felt like my life was totally overwhelming. I felt so lost and helpless to do anything on my own behalf. I began to ask myself, “which came first the chicken or the egg?” It had been 13 or 14 years since the vomiting had started, and by this time I did have some serious emotional problems. Everything was so intertwined that myself, the health care professionals, and my counselors couldn’t sort it out anymore.

Every time I looked at my kids I felt so awful about the effects my illness had on my ability to be a nurturer. I couldn’t even nurture myself. I could only hope that my illness wasn’t genetic. My daughter would miss school to stay home and take care of me. I felt as if I was failing in every aspect of my life.

A few years ago I hit the bottom. I was so tired of being sick that I felt the only way to feel better was if I was dead. After 19 years I had finally given up. Not only had the guilt taken it’s toll on me, but now the fear was inescapable. I didn’t have the strength to go on. If it wasn’t for Jim, I wouldn’t be here telling this story. He stuck with me through my darkest moments. When I had no strength to keep going, he had enough to carry both of us. He has missed work countless times to stay home and take care of me both physically and emotionally. My “illness” would have put an end to most relationships, but it didn’t scare Jim off. He experienced indescribable pressures, always with a feeling of his own helplessness to change anything. When an episode subsided he always encouraged me to keep trying. For several years it was the strength of the people closest to me that carried me through the darkness of my depression.

Then, we got a computer. Jim wanted one to use for computer aided design. He is a licensed residential builder, and his business has grown to the point that a computer could make his life much easier. Little did we know, how much easier life was going to be as a result of that computer! I was also excited about getting the computer. I saw it as a research tool, and I promptly started “surfing” the Internet. The first things I searched for were websites concerning health. The second night of Internet searching, I decided to post a message with a site concerned with irritable bowel syndrome. I had read their messages and thought maybe there would be some helpful information to be found there.

So I sent a message with a little of my story and asked if anyone dealt with uncontrollable vomiting episodes. The next morning I checked for responses as soon as I could. One response asked if I had every been checked for CVS. In spite of all the different prognosis I had accumulated over the years, I had never heard of CVS. So I searched the web for more information on CVS, not only did I find a definition, but I found my salvation. I found the CVSA website and I couldn’t read the information fast enough. My heart was pounding. The information described my condition completely. I had long ago given up hope that there would ever be a simple solution, and here it was right in front of me! I mailed my doctor all the information I could find, and then I waited. I couldn’t help being skeptical about finding the answer to my illness after all this time. This time I couldn’t wait to see the doctor! I went to my appointment hoping for the best, but expecting the worst news. I was thrilled to hear my doctor confirm CVS as an accurate diagnosis. Within a couple of weeks I started taking Nortriptyline and to my great surprise the symptoms subsided.

Now my future doesn’t look so bleak. I wake up every morning full of gratefulness. It’s been a few months now, and I’m beginning to position myself to go back to work. It wasn’t that long ago that I couldn’t cope with waking up in the mornings. Now I can see all of the possibilities of each day.

There are not words to express how grateful I am to all of you and to the CVSA.

Diane B.

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