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Wrong diagnosis of emerging pot disease can leave patients sick, broke

Wrong diagnosis of emerging pot disease can leave patients sick, broke

From the Top 10 at, Dec. 6-12 series
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A little-known, painful reaction to heavy use of potent marijuana is popping up in emergency departments, hospitals and clinics throughout the country.

Because the disorder 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.

The malady is called cannabinoid hyperemesis syndrome and presents endless cycles of violent vomiting and gut-wrenching abdominal pain.

Although the syndrome was 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 Lavona, chief of emergency medicine at Denver Health Medical Center.

Lavona, who is an expert 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.”

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 sprawling Denver hospital. Colorado has become an epicenter for marijuana research, especially for the obscure, painful hyperemesis disorder, 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’s hospital complaining of repeated vomiting that wouldn’t stop, said Dr. Douglas Melzer, who treated her. She had a Montana Medical Marijuana Card issued to control 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 started.

Hot baths and hot showers gave her some relief, but only for the moment, Melzer said. Many victims of the syndrome have learned that the pain can be alleviated by simply bathing in hot water. But once the water turns cold, suffering returns with a vengeance.

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

Doctors at the first hospital had scheduled her for a series of diagnostic tests to see what was happening, including a colonoscopy, an endoscopy, a CT-Scan and a few other studies, the woman told Melzer. But she said she had left before the procedures were begun.

Cyclic vomiting is caused by many different things, but because Melzer had seen it before and his patient willingly discussed her use of marijuana, he knew what he was dealing with.

“I treated her with Haldol, which is what we think is the best anti-emetic 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, Lavona said he knows of 50 or so people at any given time who suffer from the reaction.

“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,” the physician added. “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, 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 the impossible. Jon Ebelt, a spokesman for the Montana Department of Public Health and Human Services offered an explanation: cannaboid hyperemesis syndrome does not have a specific ICD Code (International Classification of Diseases Code) which are 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 the town’s St. James Hospital. “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 for stemming nausea and vomiting caused by many ailments, with the hyperemesis patients it causes the precise symptoms it is supposed to end.  

While diagnostic and surgical intervention is often ultimately the wrong choice to get to the cause of the problem, it’s often the most prudent course to follow to protect a patient’s life when the cause is unknown. Several emergency medicine specialists explained the symptoms can often be confused for life- threatening maladies that demand immediate intervention. These include bowel perforation, an ectopic pregnancy, pancreatitis, an arterial embolus, an abscess, a ruptured aortic aneurysm and a score of others.

Risk from wrong guesses

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

Repeated CT scans to try to figure out the reason for 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 track, they said.

Sorensen practices at the Denver hospital long heralded for its sophisticated treatment of victims of violence, earning it the nickname “Knife and Gun Club,” and which has become a center known for its treatment of acute drug emergencies. She has also studied the dollar-and-cents 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 tested positive for marijuana every time,” the Butte doctor said.

A profile of the affected

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. Their work 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 added that 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 questioned agree there is no indication the symptoms are caused by an overdose.

Those experienced with making the correct diagnosis are passionate in saying the key is getting the patient to trust them and be truthful.

“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,'' said Lavonas. 

"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 diagnosis more likely,” Hurst said.

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

Education is everyone’s duty

Scores of factors impact 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 concentration of THC in the product. That is governed by what part and how much of specific portions of the plant producers use. For example, the 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 the strength of the product 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 for aiding and abetting in a federal crime.

Almost all the medical personnel interviewed said the pot users they had treated were not educated on the syndrome by either the physicians who initially recommends the use of 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, the Butte physician, 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. 

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