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A little-known, painful reaction to heavy use of potent marijuana is popping up in emergency departments, hospitals and clinics across the country.

Because the condition is often misdiagnosed, frequent users of large amounts of cannabis with high levels of the euphoria-inducing component THC find themselves in continuing agony and often receiving unneeded diagnostic testing and sometimes surgery exceeding $100,000.

Cannabinoid hyperemesis syndrome presents endless cycles of violent vomiting and abdominal pain.

Although first reported in medical journals in 2004, many physicians, pot sellers and users still don’t know about it. 

“You can think of it as a new or emerging disease,” said Dr. Eric Lavonas, chief of emergency medicine at Denver Health Medical Center.

Lavonas, a spokesman for the American College of Emergency Physicians, cautions his colleagues to “be careful not to trivialize it."

“These folks are really suffering. They can get pretty sick. They vomit like crazy and make frequent emergency department visits because they just can't stop vomiting.”

Obscure but serious

The average patient with the syndrome made five visits to stand-alone clinics, seven trips to emergency departments and was hospitalized three or more times, said Dr. Cecilia Sorensen, also an emergency medicine doctor at the Denver hospital. Colorado has become an epicenter for marijuana research, especially for the obscure cannabinoid hyperemesis syndrome, because it was the first in the country to legalize recreational pot. 

But the cause continues to be missed by many.

Late last month, a young woman came to the emergency department at Missoula’s Providence St. Patrick Hospital complaining of repeated vomiting that wouldn’t stop, said Dr. Douglas Melzer, who treated her. She had a state-issued medical pot card for chronic pain and told him that she’d been using pot for at least four or five years. But a week earlier, “out of the blue,” the violent, cyclical vomiting began.

Hot baths and hot showers provided some relief, but only for the moment, Melzer said. Many who have experienced the syndrome have learned that the pain can be alleviated by bathing in hot water. 

A week earlier she went to another hospital where she was given a common anti-nausea drug in the emergency department and sent home. Soon, she was back, still vomiting and was admitted for two days and treated for severe electrolyte abnormalities caused by dehydration from the continuous vomiting.

Doctors at the first hospital had scheduled her for a series of tests including a colonoscopy, an endoscopy, a CT-scan and a few other studies, the woman told Melzer. But she said she left before the procedures began.

Cyclic vomiting can be caused by many things, but because Melzer had seen it before, and the patient willingly discussed her use of marijuana, he knew it was cannabinoid hyperemesis.

“I treated her with Haldol, which is what we think is the best antiemetic for this,” he said. The antipsychotic medication, called haloperidol, has many other off-label uses including for nausea, sedation and migraines.

Popping up everywhere

In Denver, Lavonas said he knows of 50 or so people at any given time being treated for cannabinoid hyperemesis.

“This has become a very common problem for us. We see it all the time in several patients a week in our emergency department, and all the emergency departments around Denver,” Lavonas said. “It takes time for the medical community to learn about it and recognize it. But once you're familiar with the disease, you're not likely to misdiagnose it.”

Emergency room personnel at San Francisco General Hospital, MedStar Georgetown University Hospital in Washington, D.C., Harborview and University of Washington Medical Center in Seattle also report routinely seeing cases of cannabinoid hyperemesis, but none could provide numbers of patients with the diagnosis for any specific period.

It should be noted that these hospitals are in states where the recreational use of marijuana is legal or widely used. In 28 states and the District of Columbia, the use of marijuana is legal for medical purposes.

Nevertheless, obtaining accurate numbers of the cases of the syndrome borders on impossible. 

Jon Ebelt, a spokesman for the Montana Department of Public Health and Human Services, offered an explanation: cannabinoid hyperemesis syndrome does not have an ICD Code (International Classification of Diseases Code), which is used for billing and for disease surveillance. “Therefore, there is no way to track diagnosed cases,” Ebelt said.

But pot is being used everywhere.

“Like everybody else, we have a lot of marijuana use in Butte,” said Dr. Alan Mayer, at St. James Healthcare. “We all know what cyclic vomiting is, but in the past we didn’t recognize that a lot of these people were chronic marijuana smokers.”

He said he’s concerned that “there are probably more patients that have it that we haven’t identified yet.”

The difficulty in diagnosing the syndrome is due in part to its paradoxical use, meaning that while marijuana is often used to ease nausea and vomiting, in hyperemesis cases it causes the symptoms it is supposed to treat.

While diagnostic and surgical intervention is often ultimately the wrong treatment, it’s often the most prudent course to protect a patient’s life when the cause is unknown. Several emergency medicine specialists said the symptoms can mimic life-threatening emergencies including arterial embolus, ruptured aortic aneurysm, bowel perforation, ectopic pregnancy, pancreatitis and many others.

Risk from wrong guesses

Lavonas and other emergency medicine practitioners said the greatest risk to the patient is from unnecessary diagnostic testing or surgery.

Repeated CT scans to determine the cause of severe abdominal pain present a risk from radiation or reaction to the contrast dye. With endoscopy, the passage of a flexible tube into either end of a person’s digestive tract, presents the risk, albeit minimal, of reaction to sedation or anesthetic or a possible tearing of the walls of the tract, they said.

Sorensen practices at the Denver hospital, which has become known for its treatment of acute drug emergencies. She has also studied the financial cost of wrongly identifying the syndrome.

Sorensen's study, which followed marijuana users with the syndrome for two years, showed the accumulated medical charges for those patients ranged from $62,420 to more than $250,000 each.

Mayer, in Butte, said that a few years ago he “wouldn’t have even thought of testing for chronic marijuana use, but this is a very expensive problem.”

He said one of his patients ended up with the $40,000-plus equivalent of an abdominal pacemaker.

“They thought his stomach wasn’t working and they implanted a stimulator, but he was one of the people who test positive for marijuana every time,” Mayer said.

A profile of the afflicted

In Sorensen's research on 200 cannabinoid hyperemesis syndrome patients she teamed with Dr. Andrew Monte, a professor at the University of Colorado Hospital and a toxicologist at Rocky Mountain Poison Center. The pair characterized the patients as having an average age of 28. Three out of four are male, and 75 percent have used cannabis for more than a year.

In Missoula, Melzer said the patients he has seen and diagnosed “are people who use multiple times a day, and it's something that is a lifestyle agent for them, it's not just every so often they're using. So I think the doses are pretty high.”

However, the physicians agree there is no indication the symptoms are caused by an overdose.

Those experienced with making the correct diagnosis said it's key to earn the patient's trust.

“Taking a history about substance use requires the doctor to ask in a way that makes it possible for the patient to give an honest answer without feeling ashamed, and it requires people to be willing to give that honest answer. Until that happens you'll never make the diagnosis," Lavonas said. 

"We’ve got to make it clear to the patient that none of us are going to judge you if you smoke pot. We just want to help you medically. The best way to do that is for us to have all the information,” he said.

At Billings Clinic, Montana’s largest hospital system, Dr. Daniel Hurst said that often when people are asked whether they use drugs, or alcohol or marijuana, initially they say no.

“But I’ve found here in Montana at least that if confronted and you kind of explain why you’re asking, people will give you an honest answer, and that makes the chance of an accurate diagnoses more likely,” Hurst said.

He said when he sees a patient with the symptoms, he gives them information on the syndrome and “suggest that they try to go weeks, if not months, without using to see if that controls the symptoms.”

Education is everyone’s duty

Many factors affect the degree of kick or buzz from what people smoke or ingest. Government researchers have reported for years that the potency of marijuana is dependent on the product's concentration of THC. That is governed by what part and how much of specific portions of the plant producers use.

Flowers or trichomes on the mature female cannabis plant contain the highest concentration of THC. Plant stalks have about 100 times less potency. The blend will impact the money the seller makes and effect it has on the user.

But how is the pot user to know what they’re buying?

In some areas where marijuana use is legal for both medical and recreational use, storefront dispensaries with their green crosses dot the commercial landscape with the frequency of coffee shops. Some offer extensive labeling and signs to tell customers what they're getting.

Physicians who believe that marijuana will help their patients are forbidden by federal law from actually prescribing specific strains or amounts. To do so would allow the government to charge practitioners with aiding and abetting in a federal crime.

Almost all the medical personnel interviewed for this story said the pot users they had treated were not educated on the syndrome by either the physicians who initially recommended medical marijuana or the providers who sold it.

“That’s not being done at all,” Melzer said. “There are very, very few people who come into an emergency department who have ever heard of this syndrome before. Providers don't know as much about it, and I think the public knows nothing about it.”

Mayer said he believes that the physicians who suggest their patients use marijuana and those who sell it have the responsibility to educate the users of the risk.

Sorensen said she suspects that patients have a genetic predisposition to developing the syndrome but adds, “there is no way to prove there is and no way to predict who will get it and how much cannabis use it takes before the syndrome appears.

“It appears from the literature that once you have the syndrome, any future use of cannabis can trigger a relapse into a cyclic vomiting episode. It seems like a switch is flipped physiologically,” she said.

Based on the hundreds of cases she and her colleague Monte have evaluated, the pair will soon be issuing guidelines and suggested protocols to give physicians and other emergency medical personnel the best chance of accurately diagnosing the syndrome.