The disease in Disguise, Cyclic Vomiting Syndrome

Hi my name is Jackie and this is my story. I hope that this story will help you or someone you know that has had to deal with Cyclic Vomiting Syndrome.

At about age five I started to have bouts of unexplained vomiting. I would awaken in the early morning 4am, and would vomit about every 5 minutes for about two hours. Then I would get a "break" for about 15-20minutes-just long enough to fall asleep on the bathroom floor. I would slow down around 8am and continued to vomit,and sleep on the bathroom floor intermittently. I slept on the floor because moving any further would bring on even more vomiting, it was also more comfortable because the cool tile felt good on my overheated cheeks. The first few times this happened my parents kept me home and took me to a doctor. The doctor looked at me (when I was coming out of the episode)and said that I had a flu bug,(but my only symptom was vomiting, no aches and pains or anything) I was always placed on some type of anti-emetic suppository. They seemed to work, yet the episodes lasted 12-24 hours anyway. Generally when I was younger episodes were just as described above, and were only longer when something "triggered" them. I was always a healthy child when it came to normal illnesses; like colds, flus, Chicken Pox,etc. But when I did get an illness like a cold, or ear infection, the vomiting episodes were much worse; The begginning was as it always was but the "break" came much later, and the vomiting would continue at least three times an hour for up to 4 days,and more if I swallowed anything (including my own saliva) Every time this happened my mother kept me home from school, and I started to miss a lot of school. At this point my episodes were three days from the last day of the last episode. After seeing the doctor a number of times with this, she made the conclusion that I was simply an anxious child. I decided this was not my label, neither was sickly child, nor any other pity label they wanted to give to me.

After hearing this over and over I decided that no one needed to know when I got sick with the "flu." So I turned myself into a perfectionist;

My room was in perfect order, clothes matched, homework finished and exactly where it was supposed to be. This way I could vomit until it began to slow, and then I would grab what I needed to go to school, and be perfectly ready for breakfast and school. I would eat, and immediately run to the restroom to vomit. With three other kids running in all directions trying to get ready to go, nobody really noticed my bathroom habit. On the walk to the bus stop I would vomit at least once, my sister accepted the fact that I vomited once(?) every morning. I told her that the doctor said it's just my nerves, and she seeemed satisfied with my reasoning. The bus ride was horrible, after five minutes of motion I felt like I was going to explode! I would rush to the bathroom and would try to vomit as much as I could before class began. In class I would avoid talking and moving around, but I always did the written work to the best of my ability. Every once in a while I'd be called on and more often than not I would vomit in the garbage can next to the teacher's desk. I felt awful, and embarrassed. This sort of episode only furthered the "anxious child" theory. From that point on my parents were only aware of my "bad episodes" which were generally three to four days in duration in which I would beg to drink, even though I would vomit immediately afterward. This diluted the bile and made it much easier on my throat. I also think that the nausea decreases for awhile after vomiting. Generally the "bad episodes" were triggered by illnesses such as a respitory infection, ear ache,etc. Because of this the vomiting was considered to be a symptom of whatever illness I had. If I had known then what I know now, I never would have hid my 'normal' episodes from my parents. I know that I had been correct, I wasn't an anxious vomiter, I was a Cyclic Vomiter and my anxiety came from the fear of being found out, as the freak who threw up all the time! I was a generally healthy child and thus my vomiting episodes didn't seem all that significant to anyone except me, and probably the rest of my immediate family.

At age 10 the episodes became less frequent every few weeks or so. Maybe I was outgrowing this anxious phase. My throat had time to heal before the next episode. Sometimes I had no esophageal bleeding whatsoever during an episode! The "bad episodes lasted 2-4 days and were far apart because I was a "healthy kid" when it came to viruses. Life seemed to be getting better.

At 11 I caught Lyme's disease and went into three day stints of vomiting and three days after the last vomiting bout I would begin again. Vomiting is of course a symptom of Lyme's diseae. So when my mum told the doctor that I had been vomiting, he wasn't surprised. I don't think that he understood that this was not plain old vomiting, but this was vomiting in exact increments of time, and to the point of exhaustion,and dehydration. As the Lyme's disesase began to clear, so did the three day stints of vomiting. I again went to my normal vomiting every few weeks with the peak only lasting between 6 and 24 hours.

In Middle School it was even more difficult for me to hide my weird illness from friends and teachers. The bathrooms weren't in the room anymore, and they weren't private, thus I would either vomit while running down the hall,or I would be heard by everyone if I did make it to the bathroom. It soon became apparent that hiding this could not be done while I was at school. I began missing a few days of school every couple of weeks and recovering from things like the Chicken Pox was even more difficult when I was vomiting. Soon people started to ask, "Why do you miss so much school?" I didn't know what to say, should I say what the doctors had said all along, that I had an anxious stomach and had these episodes where I couldn't get off of the bathroom floor without getting worse, or do I say I don't know. Well it was sort of true,I didn't know why this horrible recurrent "flu" kept hitting me and only me. After a while I asked the pediatrician, and he said to me "But Jackie, you always vomit." I thought to myself "yup" and left with the prescription for Compazine.

High School was getting better, my episodes were farther in between, most were only when I became ill with ear infections or sore throats. The normal cycle of every few weeks had changed over the summer to every few months,and I seemed to be outgrowing it! I made the Varsity Soccer Team and had the beginning of only three episodes that I can think of, near anyone on the team. These episodes that began in the afternoon (unusual for me) were normally on days that I forgot to use my inhaler, or when I sprained my ankle, or had some sort of cold. Other than that the team only saw me throw-up once or twice during games, these meant that I was going into an episode,and this wouldn't happen until the next morning 4am. The only time it really got bad in front of a lot of people was during the district championship tournament...just before half I walked to the sideline and began vomiting. This was nothing that my parents and my team hadn't seen before, most figured it was just nerves. Others on the team would sometimes vomit before big games, so this was generally accepted as long as it was not self-induced. Only this time I didn't stop vomiting,and then stop and suffer with a tummy ache for the rest of the game. This time I went straight into my peak I vomited every five minutes until after the game was over,and after I was at home. I continued to vomit for four days. This time I had no illness triggering it I was just vomiting for weeks with a low-grade temperature, no diarrhea or anything. According to blood tests there was nothing wrong. He questioned wether I wanted to miss school. -No way! falling behind and missing sports, and friends was not something I would try to get. Plus I was always running a fever according to his thermometer! He would prescribe Compazine and I would seem to get better, and then three days later I'd be sick again. This went on for three weeks, and then it just stopped like all the episodes do, I woke up and it was gone. Then I continued to have small episodes throughout my sophmore year. Then this year, my Junior year I caught mononucleosis during homecoming. I had vomiting episodes throughout the illness, but as I was recovering from the mono and planning to return to school, I began to have episodes more and more. Then as the fever started to resolve, I began to have vomiting episodes even more often. The day before I was expected to return to school, I began to vomit(4am) this unlike normal episodes did not slow after two hours of peak vomiting, it went on. By the next evening my parents found me unconcious, yet still vomiting.

I was rushed to the doctor's office where I had blood work as well as an examination. He said this could be explained as a side effect of the mono, a reaction to the Zithromax I had been put on three days earlier for an ear infection, or a virus on top of the mono. Five days later he called for a CAT scan that was negative. Five days later he referred us to a GI. It was three weeks to get in! THREE WEEKS, and I had been vomiting every 45 minutes if not more often, for 7days!! I was placed on a priority list in the office, and by sheer luck someone canceled with Dr. Taxman, and I got in within a week and a half. By then I had lost 19 pounds and had given-up on eating real food completely. At first, based on where my pain was and the blood in my vomit (caused by esophageal bleeding or Weisman tears) he ordered an endoscopy to look for an ulcer. He placed me on Zantac which helped the pain, and Levsin to take right before I felt I was going to vomit. Both helped somewhat. After the endoscopy I started to vomit more fresh blood than usual. This is normal for five days after the procedure. The sixth day we called the GI on call who sent us to the ER. The ER said they could see I was vomiting blood but I hadn't lost enough to need emergency treatment, because my blood pressure was low but low-normal. We now know that when I'm in an episode I become hypertensive, so my blood pressure was probably low enough to have a second look. All well I'm still alive. The next day I was vomiting even more and Dr.Taxman had me admitted directly to the hospital. The blood tests showed there was a problem with my liver. It turned out after two hospital visits just like the one described, and a liver biopsy that I had toxic hepatitis. I had a hypersensitivity to tylenol that I took for the fevers after I had been told by Dr.Taxman and his student, that motrin could upset my stomach. But then at the next follow-up I was again dehydrated, yet the liver was fine as it had been before the vomiting ever sarted. Then Dr.Taxman came in with the diagnosis of CVS, but there were still a lot of tests; including a psychiatric evaluation, trials with psychiatric drugs, gastric emptying studies, abdominal CTs, MRIs, small bowel motility studies, autonomic testing, etc. Even working with the known CVS miracle drugs, it was a frustrating battle to find something that works, I should know I spent almost the entire year in the doctors office and most of the time in the hospital on IV fluids.

It hasn't been a picnic, but I'm finally starting to feel some hope and relief. I can't count the number of times that I heard something like; "This is all in your mind" and "It's not a real illness, and if you wanted to you could stop". To all of you who made statements to me like these I stopped listening to you, like you had stopped hearing me, and after awhile I heard... blah blah blah and then I filled it in with, "I'm educated and I'm frustrated so it must be your fault Jackie" and "How dare you challenge me Jackie?". And my reply is this: "it's all in your mind. You are educated and should know learning never stops until you stop being useful. You may be educated more than I am, but that is only because you are older, not smarter." To those of you with CVS who are hearing things like this or have heard this just realize your already smarter than most general doctors, because you know this exists! It isn't in medical diagnosis except for with GIs, and hospital-based behavioral pediatricians. Move on! As one very wise doctor told me "don't look back at the past, leap foreward and leave all those ignorant folk on a lower level, then you can look back every once in a while and help them up (if they really deserve it.)

I was diagnosed after 3 admissions but was treated with psychiatric drugs for weeks after Periactin didn't magically cure me. Some even said I was in denial of the seriousness of my condition, because If I allowed myself to worry about it I'd go into depression,and probably have more episodes. Sorry that's not me I'm the optimist, they always found the bad things Like Lyme's disease and fixed me, I've had bad vomiting spells since age 5 with no meds, why wouldn't I think everything will turn out fine this time? No person in all of history since 1882 has ever died of CVS and no one has ever had it forever, it just leaves your life when you have learned its lesson. No problem I got time, and I've got good doctors helping me get through this.

The biggest problem with CVS is that you have to have it for years before it can be diagnosed, along with tests to rule out any other possible reson for the vomiting. The next problem is is that medical text never even mentions Cyclic Vomiting Syndrome. Most who are part of the CVSA have cyclic vomiting caused by abdominal migraine-which means their is a strong family history of migraine, and that the episodes are similar in symptoms and duration. Another problem in diagnosis is that so many things can trigger it, and finding triggers is quite difficult. Everyone who tries to get this diagnosis gets frustrated but just relax, we have all been there.

Since last month (June 26, 1998) I have not been back in the hospital. In fact I went to my follow-up with doctor Taxman, and for the first time I didn't vomit all over his bathroom! I'm sure his staff appreciates this. I'm now taking Propulsid TID, Gastrocrom TID, Zantac BID, Elavil before bed, and Levsin and Zofran every 4hrs when ill. IT SEEMS TO BE WORKING!!

NOTE: The medications listed above are the meds that my physician and I have used for my treatment. There are many medications that are being used in the treatment of CVS and may be used in dosages that are a lot different then those I'm taking. The meds here may not be the correct medication or dosage for you or your child.

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The Disease in Disguise
Cyclic Vomiting Syndrome
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