An introduction to cyclic vomiting syndrome

Steve Wartenberg: Welcome. This is the first in our series on cyclic vomiting syndrome with Dr. V. I'm Steve Wartenberg, your moderator, and this is Dr. Thangam Venkatesan. Dr. V is the world's leading expert on cyclic vomiting syndrome, usually referred to as CVS. She is a professor of clinical medicine in the division of gastroenterology, hepatology, and nutrition at the Ohio State University Wexner Medical Center. Dr. V sees patients from all 50 states and even beyond, she developed the first standard of care guidelines to treat adults with CVS, and she is leading the effort in collaboration with industry to develop the necessary infrastructure and tools to test a new drug that will hopefully be a big step forward in treating patients with CVS.

Thangam Venkatesan, MD: Thank you, Steve, for that kind introduction. My goal for this series is to really educate people and the medical community about what CVS is, and really dispel a lot of the myths and give them good information about how to diagnose and treat this disease. And I want people to know that there's hope.

Steve Wartenberg: I take it when you say dispel myths, there's a lot of bad information or lack of information out there, not just among people who might have this disease, but also among the medical profession.

Thangam Venkatesan, MD: That is correct. And unfortunately, this disease is misdiagnosed or underdiagnosed in most people. One of the problems with CVS, or cyclic vomiting syndrome, is it is what we call a disorder of gut-brain interaction. So you don't really have any blood tests or what we call biomarkers to diagnose it. And so unfortunately, people really have a hard time diagnosing it, and they mislabel patients as having viral gastroenteritis for the 20th time. And so, that's a problem.

Steve Wartenberg: We've talked about this before, but it's not that uncommon of a disease. How many people have it?

Thangam Venkatesan, MD: Yes, that's a very good question. The prevalence of CVS in the US is 2%. So to put this in perspective, at least six million people have CVS, and that could even be an underestimate.

Steve Wartenberg: Six million people. So this is not that rare of a disease.

Thangam Venkatesan, MD: No. It's as common as, really, pediatric inflammatory bowel disease and even more common than, say, celiac disease. So it is common.

Steve Wartenberg: Wow. Not just the physical problems, but the mental strain of, for 20, 30 years, having this regular episodes of vomiting must weigh on a person and to see you and to finally get a diagnosis, what is that like for patients?

Thangam Venkatesan, MD: Oh, it's a huge relief. Because most people, many people, are actually dismissed as, quote, "being crazy." And I-

Steve Wartenberg: Yeah. They say, "It's all in your head, just get over it?"

Thangam Venkatesan, MD: Exactly. And I have had patients who have come to me after seeing 10 gastroenterologists, they've gone to all the premium institutions in the country, and then you just listen to them. It's really plain and simple that they do have CVS. And unfortunately, it's funny, I always have to have a box of tissue in my office, and they're literally in tears.

Steve Wartenberg: Now, we're going to get much more into it in subsequent episodes in terms of diagnosis, treatment options, the difference between pediatric and adult CVS, and some of the new therapies in your standard of care. But just for people out there who may not know much about it, when we talk about an episode of CVS, and I know they're different for different people, what is it like? What happens when someone's having an episode?

Thangam Venkatesan, MD: So what really happens, it's... People have what we call stereotypic episodes of nausea, vomiting, belly pain. They're sweating, they're often anxious, they're in a panic. They really don't have any tools if they're not told what they have, and so they can vomit for hours to even days. They can go five days, and then they actually recover and they are okay. So it keeps happening over and over again. Obviously, the frequency of episodes, the duration of the episodes, can vary, and so there's a myriad symptoms aside from nausea and vomiting. They can have belly pain, they can sometimes have a headache. They really don't want to talk to people. They're often curled up in a ball. And they are puking and retching and it's miserable.

Steve Wartenberg: Can this lead to a visit to the emergency room?

Thangam Venkatesan, MD: Oh, yes. Yeah. And we did a study many years ago, and unfortunately, the number of ER visits by a patient is just staggering. So I have had patients who have told me that they have gone to the ER almost 100 to 200 times, and 94 to 95% of the time, they were not even diagnosed as having CVS. Things have improved a little bit, I will say, over time, but really the impact on the patient and the healthcare utilization, simply because these patients are not managed as well, is really staggering.

Steve Wartenberg: But once you are able to diagnose and work with the patient, you are able to reduce these number of episodes.

Thangam Venkatesan, MD: With appropriate therapy in a specialized CVS center with a CVS expert, we can really cut down the number of CVS episodes, the number of ER visits, the number of hospitalizations by more than half, and people feel a lot better.

Steve Wartenberg: Thanks for watching and stay tuned for more episodes on what you need to know about CVS with Dr. V.

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For more information, visit wexnermedical.osu.edu/CVS