Today is the International Cyclic Vomiting Syndrome Awareness Day. As someone who suffers from this rare chronic illness, I always make it a point to bring my audience’s attention to the fact that this illness even exists! I think it’s important that the sickness has more awareness brought to it, because so often the symptoms of the disease are misdiagnosed, sometimes leading to unnecessary procedures or surgeries.
Quoting from the Cyclic Vomiting Syndrome Association’s website:
What Is Cyclical Vomiting Syndrome (CVS)?
CVS is an unexplained disorder of children and adults that was first described by Dr. S. Gee in 1882. The condition is characterized by recurrent, prolonged attacks of severe nausea, vomiting, prostration with no apparent cause. In some there is severe abdominal pain. Vomiting occurs at frequent intervals for hours or days (1-4 most commonly). The episodes tend to be similar to each other in symptoms and duration and are self-limited with return of normal health between episodes.
CVS begins at any age. It can persist for months, years or decades. Episodes may recur several times a month or several times a year. Females are affected slightly more than males. The person may be prone to motion sickness, and there is often a family history of migraine. There is a high likelihood that children’s episodes will be replaced by migraine headaches during adolescence.
Episodes may begin at any time, but often start during the early morning hours. There is relentless nausea with repeated bouts of vomiting or retching. The person is pale, listless and resists talking. They often drool or spit and have an extreme thirst. They may experience intense abdominal pain and less often headache, low-grade fever and diarrhea. Prolonged vomiting may cause mild bleeding from irritation of the esophagus. One mother aptly described her child’s state during the episode as a “conscious coma”. The symptoms are frightening to the person and family and can be life-threatening if delayed treatment leads to dehydration.
CVS has been difficult to diagnose because it is infrequently recognized and is often misdiagnosed as stomach flu or food poisoning. There are as yet no blood tests, x-rays or other specific procedures used to diagnose the disorder. The diagnosis is made by careful review of the patient’s history, physical examination and lab studies to rule out other diseases that may cause vomiting similar to CVS.
Although some patients know of nothing that triggers attacks, many identify specific circumstances that seem to bring on their episodes. Colds, flus and other infections, intense excitement (birthdays, holidays, vacations), emotional stress and menstrual periods are the most frequently reported triggers. Specific foods or anesthetics may also play a role.
Treatment is generally supportive with much importance placed on early intervention. A dark quiet environment is critical for sleep. Hospitalizations and IV fluid replacement may be necessary. Medication trials sometimes succeed in finding something to prevent, shorten or abort episodes. It is important to work with a physician who does his/her best to understand CVS and is supportive.
The foundation of long-term management involves a responsive collaborative doctor-patient-family relationship, sensitive to stresses caused by the illness and to triggers such as feelings and attitudes that may pre-dispose to attacks. Consistent, accessible physician care by a care coordinator who understands and communicates the nature of CVS, regardless of specialty, is vital to the family’s well-being. Connections with the Cyclic Vomiting Syndrome Association, a family and professional network, does a great deal toward healing a family that has been in doubt and despair for years.
For other articles I’ve posted on cyclic vomiting syndrome, see: