When someone suddenly develops a bout of intense nausea, vomiting, stomach pain and continuous retching that lasts a day or two or sometimes more, they might suspect food poisoning or a gastrointestinal virus is to blame. But if this happens multiple times per year, it could be a sign of cyclic vomiting syndrome, an under-recognized disorder that’s believed to affect approximately 2 percent of people in the United States.
In July, partly because the disorder remains underdiagnosed and under-treated, the American Gastroenterological Association issued new clinical guidance to help doctors and patients recognize the signs and symptoms of cyclic vomiting syndrome (CVS, for short). In a nutshell, CVS is a chronic disorder related to gut-brain interaction, and it’s characterized by recurrent episodes of nausea, vomiting, and dry heaving, separated by symptom-free periods in between. The episodes themselves tend to be downright debilitating, leading to pain, misery, and often dehydration, as well as lost work and school days because people can’t stray far from the bathroom.
“There is increasing recognition that this disorder is more prevalent than we once thought,” says David Levinthal, a gastroenterologist and neuroscientist and director of the Neurogastroenterology and Motility Center at the University of Pittsburgh Medical Center. “This is not a condition a lot of GI doctors think about. There are many patients out there who are suffering and not getting diagnosed and treated.”
This may be partly because like other disorders of the gut-brain interaction, it’s a condition that’s not prioritized in medical education, says Christopher Vélez, a gastroenterologist and associate program director of the advanced fellowship in gastrointestinal motility and functional disease at the Massachusetts General Hospital Center for Neurointestinal Health in Boston.
“It’s sort of like a gut migraine—an abnormal, uncontrolled, neurologically mediated series of events,” Vélez says. But because modern diagnostics can’t show doctors what’s wrong, “sometimes it’s seen as made up. And sometimes patients are blamed for their symptoms, even as their quality of life is significantly impaired.”
Who’s susceptible and why
While CVS can afflict anyone, it’s more common among children, women, and young adults.
“A large percentage of kids who have it outgrow it,” says Anthony Lembo, a gastroenterologist and director of research at the Digestive Disease Institute at the Cleveland Clinic. “For adults, it’s not as clear.”
Among adults, anxiety, depression, and/or panic disorder often coexist with CVS, as do migraines. And, like migraines, CVS sometimes runs in families, Lembo says. In addition, the disorder is slightly more common among people with seizure disorders.
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Among those who have CVS, “everyone has a different trigger,” says Levinthal, and sometimes triggers are hard to identify. Stress is a common trigger, and so are sleep loss, hormonal fluctuations related to the menstrual cycle, travel, motion sickness, periods of intense exercise, and physiological sources of stress such as an illness or surgery.
“If you always had a sensitive GI system, it’s a set-up for this,” says Vélez. “It makes one more susceptible to psychosocial triggers.”
Marissa Cohen started having consistent flare-ups of CVS when she was two years old. Sometimes the vomiting would be so profuse that she’d have nothing left in her stomach and bile would come up. Despite going through years of tests, Cohen didn’t receive a diagnosis of CVS until she was eight years old.
“That was frustrating for my parents and me because we knew something was wrong but there wasn’t much we could do about it without an official diagnosis,” Cohen recalls.
Often, she’d end up in a hospital emergency room where she’d receive intravenous fluids and medications to stop the vomiting. The drugs would usually put her to sleep and she’d “wake up feeling like nothing happened—it’s such a crazy on-and-off switch,” says Cohen, now a 21-year-old college student in Pennsylvania.
Most people with CVS typically have two to four episodes per year. “This disorder is not a monolith,” Levinthal says. “There’s a wide range of severity.”
If someone has fewer than four episodes per year with each one lasting less than two days, they are considered to have mild CVS, according to the AGA. If someone has four or more episodes per year, with each lasting more than two days and they require a hospital emergency department visit or hospitalization, they’re diagnosed as having moderate-to-severe CVS.
Diagnosis and treatment
To rule out conditions (such as an obstruction) that could produce similar symptoms, an endoscopy and/or imaging tests (such as a CT scan or ultrasound) of the upper gastrointestinal tract are sometimes ordered.
Bloodwork—including a complete blood count, and tests to measure blood levels of electrolytes and glucose and liver enzymes—and urinalysis are also part of the diagnostic picture. But the mainstay of the diagnosis is taking a thorough medical history.
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“It is the recognition of a pattern that is the critical step,” Levinthal says. While CVS flare-ups can happen at any time of day, most occur in the early morning.
Those who are diagnosed with moderate-to-severe CVS often take preventive medications—such as tricyclic antidepressants (like amitriptyline or nortriptyline) or anti-seizure drugs (like topiramate, zonamisamide, or levetiracetem)—on a daily basis. These don’t eliminate flare-ups; the goal is to extend the length of time between them and/or to reduce the length and severity of the episodes.
“One of the nice things about CVS is treating it is a choose-your-own-adventure situation,” says Vélez, referring to the fact that different treatments can be tried or combined in a particular person.
Many people with the disorder experience prodromal symptoms—such as abdominal pain, headache, mental fog, shakiness, or anxiety—an hour or so before they start vomiting.
“About 70 percent of patients can identify when an attack is coming on,” Levinthal says. “If you can take medicine as soon as you recognize it’s going to happen, that’s when you have the best chance to turn it off.”
For those with mild CVS and the moderate-to-severe form, abortive therapies such as triptan drugs (which are used for migraines), antiemetics (a.k.a., anti-nausea drugs such as ondansetron, promethazine, or prochlorperazine), or sedatives (such as alprazolam or diphenhydramine) are prescribed to try to stop an episode in its tracks.
Because it may be hard for people to keep an oral medicine down during an episode, many of these drugs can be taken through other delivery methods: sublingual (under the tongue), a nasal spray, or a rectal suppository.
Many people, like Cohen, rely on two or more drugs to treat CVS. These days, she takes a tricyclic antidepressant each day to try to prevent attacks and she’s armed with rescue medications if she wakes up feeling nauseous, for example. While she ends up in the ER less often than she used to, she still typically has one to five CVS flare-ups per year and must be careful about where she travels, in case she needs medical attention.
“The hardest part about it,” she says, “is I really don’t know what’s going to trigger an episode.”
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If people can’t get a grip on their symptoms or they become dehydrated at home, a visit to a hospital ED for intravenous fluids and IV abortive therapy is in order.
Some people with CVS use cannabis, either recreationally or to ease their symptoms. The trouble is, sometimes it’s difficult to distinguish a condition called cannabinoid hyperemesis syndrome (CHS) from CVS. With CHS, chronic use of cannabis—defined as more than four times per week for more than a year—can be associated with recurrent nausea, vomiting, and abdominal pain.
That’s why some gastroenterologists recommend cannabis-users with CVS abstain for three to six months to see if it makes a difference, Vélez says. If they continue to experience nausea-and-vomiting episodes after that, CHS can be ruled out.
To get some relief from the symptoms, people with CVS often take hot baths or showers, sometimes multiple times per day. People with CVS are advised to get regular sleep, avoid prolonged fasting, and engage in stress-management practices such as meditation, which has been shown to be helpful.
“There are a lot of people with this condition and it is treatable,” Levinthal says. “I want patients to advocate for themselves because help is out there.”
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