Dear Doctor: Patient advocate finds medical professionals aren’t familiar with cyclic vomiting syndrome

DEAR DR. ROACH: I have a 40-year-old woman who is renting a room in my house, and all of a sudden, she had serious issues vomiting. Over about three weeks to a month, it was finally diagnosed as cyclic vomiting syndrome. She had to go to the emergency room several times, and of course we had to call 911.

I know there are several things that trigger it, and it’s compared sometimes to migraine headaches regarding the neurological aspect of it. I believe she needs a dietitian and several other types of input and assistance. I think it’s going to take a lot of coordination between several medical fields. As her advocate, I can assist her somewhat. I’m of the understanding that it’s rare and quite serious. I really feel bad for her as she is suffering so badly.

I don’t expect the emergency medical technicians to be aware of this type of situation, but I wanted to bring it to the forefront so the EMTs could be informed of this and wouldn’t be judgmental when people are suffering. It almost appeared that they were thinking she was binge drinking. — N.P.

ANSWER: Cyclic vomiting syndrome is not a rare disease. About 2% of the population meet criteria for the disease. As its name suggests, people with this condition have repeated, distinct episodes of vomiting with no other cause and are in their regular health in between episodes. The episodes are usually the same in terms of symptoms and duration. The vomiting is usually severe, about every 10 minutes during an episode. The average adult with CVS has about four episodes per year, but it can be much more frequent. Many people with CVS discover that a hot bath or shower dramatically reduces the nausea.

Even though it is not rare, many medical professionals don’t know enough about it. In adults, the most common age of onset is 35, but it’s not until age 41 that most people get diagnosed. No medical professional should keep their suspicions about the cause of a disorder from treating a patient with respect, even if unfamiliar with the condition.

There are several triggers for this condition, as you said. Cannabis use is one that must be asked about, as many cannabis users are unaware that repeated heavy use can lead to these bouts of vomiting. But cannabis is not the only trigger. Dietary triggers commonly include chocolate, cheese and MSG. Emotional stress and heavy activity are triggers in some people. Fasting triggers vomiting in some. Keeping a diary can help identify the triggers for a person with this condition.

As you correctly say, CVS seems to be related to migraine, and the treatment strategy is similar: avoid triggers when possible. There are treatments to stop an attack when it comes, as well as to prevent them from coming. People with milder symptoms, who don’t typically require the ER or hospital, and whose bouts last two days or less, can often be successfully treated with medications to stop the attack, such as sumatriptan, which is usually used for migraine. The medicine must be given by injection or by nasal spray, since pills are often vomited right back up. Anti-nausea medicines may also be given by injection or by rectal suppository. People with more severe disease, or who don’t respond to treatment, should consider daily treatment to prevent attacks, such as amitriptyline, which is also used to prevent migraines.

Gastroenterologists and neurologists may both have expertise in treating this condition. More information is available at cvsaonline.org, or searching for “cyclic vomiting syndrome” at rarediseases.org.

Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to [email protected] or send mail to 628 Virginia Dr., Orlando, FL 32803.

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