What is Cyclic Vomiting Syndrome?
CVS is a chronic disease marked by severe, recurrent episodes of nausea and vomiting in a person who is otherwise healthy. CVS episodes often flip-flop with states of wellness. Vomiting may occur every 5-10 minutes for several hours during an episode. On average, CVS episodes last 3-7 days but vary with each person. An episode may be accompanied by stomach pain, tiredness, sensitivity to light, and/or headaches. Episodes may begin at any time of the day but often start in the middle of the night or early morning hours. They may be triggered by positive ‘stress’ (vacations) or negative stress (job loss).
Many patients have a long history of symptoms and frequent emergency department (ED) visits and hospitalizations. A clear diagnosis may have been difficult to obtain which can be frustrating! Therefore, we are providing you with information to help you better understand the disease, best manage your symptoms and improve overall well-being.
Signs and Symptoms of CVS
The symptom episodes tend to follow the same pattern in each person with CVS over time. There are typically four phases:
- The first phase is relatively symptom-free. It occurs between vomiting episodes and usually lasts weeks to months.
- During the second phase the coming on of an episode is felt. There is nausea, but oral medicines may still be taken. This phase lasts minutes to hours.
- In the third phase there is intense nausea and vomiting, and an inability to eat, drink, or take medicines without vomiting. Other symptoms may include belly pain, hot sweats, cold chills, headache, sensitivity to light and sounds, and diarrhea. The person may be drowsy and withdrawn. This phase lasts from hours to days.
- In the fourth phase, recovery begins with the settling down of symptoms and ends with going back to a normal diet and a return to the relatively symptom-free period.
In CVS, the pattern of these episodes repeats over a long-term, with 3 or more episodes a year.
How CVS is Diagnosed
Arriving at a diagnosis of CVS may be difficult. You may have seen multiple healthcare providers and tried various treatments, without relief from your symptoms. There is no specific test to diagnose CVS, however, your provider can usually make a diagnosis by carefully reviewing your health history and performing a few tests to rule out other diseases that cause symptoms similar to CVS. Because there are no blood tests or X-ray tests that can confirm CVS, a diagnosis is made based on medical history and symptoms.
Tests your healthcare provider may perform
- EGD – A test using a flexible scope with a camera at the end to look at the insides of your esophagus, stomach, and the first part of your small intestine.
- Small bowel follow-through – An x-ray test to look at the stomach and small intestine. It can be helpful to diagnose blockages that can cause vomiting.
- CT scan of the abdomen and pelvis – A test that uses x-rays to take 3-D pictures of specific areas of your body, in this case, the structures in your abdomen and pelvis.
- Gastric emptying study – A test that is done by radiology to measure how your stomach empties food.
- MRI – A test that uses a magnet to take pictures of the organs and structures inside your body.
- 24-hour urine collection – A test that measures the make-up of your urine over a 24-hour period.
- Autonomic function testing – A test that looks at how the autonomic nerves that control the different organs in your body including your intestine response. This is usually done in the neurology department.
Causes of Cyclic Vomiting Syndrome
The specific cause of CVS is unknown, but both genetics and environmental factors likely play a role. While some genetic mutations have been associated with CVS in children, whether or not these actually cause symptoms is unclear.
A system called the endocannabinoid system has also been shown to affect CVS. Our bodies produce substances that are similar to those in cannabis which are helpful in combating stress and preventing nausea and vomiting. Problems in this system may be one reason patients develop CVS. Also, studies of the brain using MRI (a type of scan that uses magnetic radiation) show that patients with CVS respond differently to stress.
How is CVS treated?
The good news is that you can act to prevent and manage episodes. The management for CVS involves lifestyle changes, daily medications (often referred to as prophylactic or preventative medications), medications to take when you start getting symptoms (often referred to as abortive medications), and supportive treatment during an episode. Know your lingo! This will help when you meet with your physician.
Lifestyle changes
Lifestyle changes are very important. Staying well hydrated, avoiding excessive alcohol and taking your daily prescription medications are all important. Also, there are several triggers for CVS. Learn how to recognize and manage them.
Triggers and How to Manage Them
Use a diary to keep track of when episodes occur (or do not occur)
- Try to figure out what brings on your episodes and do your best to avoid these things.
- Regular exercise (avoid over-exercising), regular meal schedules (avoid skipping meals) and moderation or avoidance of caffeine may also help.
Intense excitement and emotional stress
- During vacations, birthdays or other exciting events, take time to relax and breathe when you feel tense.
- Try to get at least 8 hours of sleep daily.
- Learn to relax by listening to music, spending quiet time alone, taking a warm bath, meditating, or exercising.
Foods (these are less common in CVS than thought)
- Avoid fasting, and be sure to eat regular, balanced meals.
- Figure out which foods bring on your episodes and avoid them. Some people have found that cheese, chocolate, beans, or wine can bring on an episode.
- Avoid restricting your diet if there are no identifiable triggers.
Learn more about Cyclic Vomiting Syndrome from Dr. Thangam Venkatesan
Adapted from article 818- What is Cyclic Vomiing Syndrome by Thangam Venkatesan, MD, professor of Medicine, Division of Gastroenterology and Hepatology, Medical College of Wisconsin, Milwaukee, WI; Katja Kovacic, Assistant Professor of Pediatrics Division of Pediatric Gastroenterology, Medical College of Wisconsin, Milwaukee, WI; Melanie Kruefer BSN, RN, NPD-BC, System Education Coordinator-RN, Organizational Learning