Real or Not, Cannabinoid Hyperemesis Syndrome Is a Costly Diagnosis

by: Matt Stangel | on June 20, 2019 | No Comments

Greg Lontchar experienced chronic nausea and episodes of cyclical vomiting for 12 years. He saw dozens of doctors along the way to a diagnosis that none of them could provide.

Today, he believes a controversial condition known as cannabinoid hyperemesis syndrome—or CHS—is to blame.

First acknowledged by researchers in 2004, CHS is said to be experienced by some daily or frequent cannabis consumers. The condition is characterized by chronic nausea and episodes of cyclical vomiting as relieved by exposure to hot water or resolved by quitting cannabis altogether.

While attempting to get to the root of his persistent nausea and uncontrollable bouts of vomiting, Lontchar estimates he visited the ER on 30 separate occasions and was hospitalized twice.

While attempting to get to the root of his persistent nausea and uncontrollable bouts of vomiting, Lontchar estimates he visited the ER on 30 separate occasions and was hospitalized twice. He says he submitted to a potentially unnecessary gallbladder removal, and was exposed to excessive radiation procedures and opiate-based treatments—all the while accumulating an estimated $200,000 in medical bills.

When he first began presenting symptoms in 2005, Lontchar was a 20-year-old barista living in Charlottesville, Virginia and CHS had only been formally recognized months earlier by a team of doctors in Australia.

It’d be more than a decade before the word would spread over the water and deliver him from emergency medicine’s revolving door.

Nowadays, doctors and patients are sounding the alarm for more research and awareness to minimize the risks posed by a delayed CHS diagnosis.

The Predictable Rhythm of Attack

“I would consistently wake up in the morning with nausea,” Greg Lontchar explains of the symptoms he’d come to associate with CHS. “It was like a pit in my stomach, almost like a feeling of extreme hunger.”

Managing his symptoms meant eating light and consuming cannabis, as he’d done daily for two years, both before and after meals—first to stimulate his appetite and later to ease the discomfort related to having put down some food.

“The mornings where the nausea could not be controlled typically meant I was going to have an episode,” remembers Lontchar.

A CHS episode, or attack, means ceaseless vomiting. Lontchar describes physically demanding periods of violent and painful regurgitation followed by fevers, chills, cold sweats and, eventually, more vomiting. Rinse and repeat.

One of the more curious diagnostic criteria of CHS is the reported symptom relief achieved while showering or bathing in hot water—a learned therapeutic technique that Lontchar describes.

“I would sit on the floor of the shower, usually until the hot water completely ran out,” recalls Lontchar.

He says an episode was never contained to a single cycle of vomiting or any one trip to the shower. “For me, the vomiting urge would pop back up every 30 minutes,” estimates Lontchar.

Symptoms would persist until Lontchar made his way to the emergency room.

Research Raises Many Questions, Few Answers

Australian researchers first noted a relationship between daily cannabis use and cyclic vomiting syndrome back in 1996.

It’d be eight years before the cluster of symptoms would be given a name, and a cool twenty before CHS would be added to the 2016 revision of the ROME IV—the reference text and diagnostic manual for all things “functional gastrointestinal disorders.”

During this period between discovery and broader recognition in the medical community, a modest and occasionally dubious body of research regarding CHS would grow in a relative vacuum to report hundreds of daily cannabis consumers who have experienced chronic nausea and episodes of cyclical vomiting as temporarily relieved by hot showers or resolved by cessation of cannabis consumption.

Initially, the researchers in Australia suspected a psychological explanation as to why some cannabis consumers were developing cyclical vomiting syndrome. By 2004, a related team of Australian doctors observed that cyclical vomiting symptoms would halt when patients stopped consuming cannabis. Conversely, these symptoms kicked back in if a patient returned to the green. This led the team to believe that cannabinoid hyperemesis syndrome, as they coined it, is not a mental disorder, but a physical one.

Over the next 15 years, researchers would discover additional evidence to support physical explanations for CHS, but an observable pathophysiology is yet to emerge.

A 2016 review of the body of CHS literature published between 2000 and 2015 would expose the heart of the issue, observing the bulk of this research to revolve around diagnostic and treatment concerns, noting that “the pathophysiology of CHS remains unclear with a dearth of research dedicated to investigating its underlying mechanism.”

Discovering Clues…in Peppers

(Ponomariova_Maria/iStock)

The lack of an understood mechanism by which ingesting cannabis affects CHS has resulted in a fair amount of skepticism from consumers, but experts like Dr. Jeff Lapoint, Director of Medical Toxicology at Kaiser Permanente San Diego, are discovering additional clues as to CHS’s mysterious pathophysiology.

An emergency physician, cannabis researcher, and emerging voice for doctors studying CHS, Lapoint first became aware of CHS in 2010 while working on a “synthetic cannabinoids chapter for a book,” as he tells it. At the time, Lapoint says he didn’t personally know or interact with a single medical professional who was aware of CHS.

Since, he’s personally handled more than 200 cases of CHS while innovating treatment methods and diagnostic criteria.

During his book research, Lapoint came across mentions of CHS, the curious bathing rituals it inspires, and theories that a receptor known as vanilloid 1 that responds to heat might be involved. Knowing that capsaicin—the hot stuff in hot peppers—activates the vanilloid 1 receptor, he decided to test the theory.

Would topical capsaicin have the same symptom-relieving characteristics as a hot shower, he wondered?

Short answer, yes. When Lapoint first tested the capsaicin treatment in 2013, his patients reported temporary symptom relief, just as CHS patients do when taking a hot shower. In 2017, Lapoint co-authored a paper, “Cannabinoid hyperemesis syndrome: potential mechanisms for the benefit of capsaicin and hot water hydrotherapy in treatment,” reporting 20 cases of CHS in which symptoms were successfully relieved using topical capsaicin treatments.

While Lapoint is thrilled to find a cheap, accessible treatment, he also believes his findings indicate a relationship between the vanilloid 1 receptor and the endocannabinoid system that could eventually help doctors discover CHS’s mysterious pathophysiology.

Dr. Lapoint personally hypothesizes that CHS results from derangements of the endocannabinoid system’s CB1 receptors.

Based on his findings, Lapoint personally hypothesizes that CHS results from derangements of the endocannabinoid system’s CB1 receptors following overstimulation—possibly due to modern-day weed’s high-THC, low-CBD chemovars.

“We know that in laboratory settings, if you bombard the CB1 receptor, it just goes inside the cell,” explains Lapoint. “If you keep hitting it and hitting it, it just disappears. It goes inside the cell.”

“So that, I believe, is the core pathophysiology of cannabinoid hyperemesis syndrome,” he continues. “You’ve hit this cannabinoid receptor so many times and… your body is looking for another way to hit that system. That’s what [the vanilloid 1 receptor] does. That’s why the hot bath works. It’s remodulating this nerve transmitter regulatory system that’s gone totally haywire.”

But it’s still a lot of questions phrased as answers, with few opportunities for adequately funded research—a tough game in the prohibition era.

The Financial Burden of CHS

Given that identifying and treating CHS is relatively straightforward, doctors like Jeff Lapoint see uninformed medical professionals as a significant drain on both the wallets of cannabis consumers and the resources available in a given hospital or ER.

Patients, too, feel the burden.

“I have never been a wealthy person,” says Greg Lontchar, “so the financial stress of an ER visit was always present.”

According to a 2018 paper in the Journal of Clinical Gastroenterology, the inflation-adjusted cost of a CHS-related emergency room visit rose from $2,758.43 to $4,647.62 during an eight-year period spanning 2006 to 2013.

“Even with insurance, the bills were more than I could afford, especially since at its peak, I was having episodes every month, sometimes more,” says Lontchar.

A 2019 paper published in the Journal of Addiction titled “Emergency Department and Radiological Cost of Delayed Diagnosis of Cannabinoid Hyperemesis” took to crunching the numbers on the average overall cost of a CHS diagnosis.

“For the 17 patients treated, the total cost for combined ED visits and radiologic evaluations was an average of $76,920.92 per patient,” concludes the study. “On average these patients had 17.9 ED visits before the diagnosis of CH was made.”

Lontchar estimates that he went to the emergency room a minimum of 30 times over a twelve-year period. Including the cost for his gallbladder surgery and two hospitalizations, he believes his medical bills to be in excess of $200,000.

At the Cost of Your Health

(Irina Medvedeva/iStock)

Apart from the monetary burden associated with delayed diagnosis, CHS researchers like Jeff Lapoint identify the diagnostic process itself as an added health risk—both in the form of excessive radiological evaluations, unnecessary surgical procedures, and exposure to opiate-based pain medications.

“I have received so much radiation exposure from all these different tests that I have been instructed to refuse any future CT scans unless it is a life-or-death type of scenario.”

Greg Lontchar, CHS patient

“We’re not trying to save people from the disease, although that’s nice to make people feel better,” says Lapoint, reflecting on his personal mission as an emerging voice for doctors treating CHS. “We’re trying to save them from us.”

As odd as it might sound, it’s his way of recognizing that an inefficient CHS diagnosis presents its own set of risks to patients—risks presented not by the disease, but by doctors.

“We’re trying to save them from us,” clarifies Lapoint, “so they don’t get opioids and cat scans and cameras down their throats and their gallbladders taken out. I have patients that have been through all of those things and they’re 27 [years old].”

Greg Lontchar illustrates Lapoint’s observations.

Experiencing monthly attacks, Lontchar came to know the ER as a financially debilitating oasis of hydration, pain meds, and redundant diagnostic procedures.

“The approach taken at the ER was almost always the same,” he explains. Following blood tests, he’d be given medications for pain, nausea, and hydration, as well as CT scans to make sure things like cancer weren’t present.

At one point, doctors believed his gallbladder might be to blame, so they took it out. Lontchar’s condition didn’t improve.

A whirlwind of tests ensued: endoscopes and cameras in pills, swallowing studies and radioactive hard-boiled eggs served up to rule out Crohn’s, IBS, Celiac, and H. pylori.—GI specialists whittling down the list of possible causes but never identifying an effective, long-term treatment plan.

“I have received so much radiation exposure from all these different tests that I have been instructed to refuse any future CT scans unless it is a life-or-death type of scenario,” says Lontchar. “[That’s] pretty scary, I think.”

He also recalls an unnecessarily broad style of exposure to opiate-based medications.

“Anytime they were reluctant to give me Dilaudid, my condition would not improve to the point where I could begin recovering. Some doctors would always want to try something different first before going with the more effective painkillers,” Lontchar says, describing the pharmaceutical hopscotch.

The combination of pricey ER bills, repeat diagnostic procedures, might-as-well-try-it surgeries, and exposure to opiates that haven’t been shown to be particularly effective in treating CHS—but have been shown to be very addictive—the process by which the disorder is diagnosed presents a set of health risks equal to or greater than getting sick in the first place.

The Prescription: Quitting Cannabis Altogether

(sayhmog, runLenarun/iStock)

By 2016 when Greg Lontchar was first informed of cannabinoid hyperemesis by a Portland, Oregon-based naturopath, he was working at Netflix and growing medical cannabis.

“The only cure at this time is to abstain from use, which is nothing any cannabis lover like myself wants to hear.”

Greg Lontchar, CHS patient

Consuming two to three grams of flower per day, Lontchar says he was smoking all too ironically as a treatment for what he’d later believe to be a weed-borne malady.

When his doctor suggested that cannabis might be the cause of his health problems—and that stopping could be the solution—Lontchar was resistant.

“As a former medical user and grower, cannabis advocate and supporter, accepting this fact was extremely difficult, which led me to suffer longer than I needed to,” admits Lontchar. “The only cure at this time is to abstain from use, which is nothing any cannabis lover like myself wants to hear.”

It took Lontchar several years to test and accept the diagnosis and treatment, but once he stopped using cannabis, his symptoms went away.

He says he’s been attack-free since.

It Takes Trust and Cultural Understanding

Diagnosing CHS is a delicate matter.

Delicate, not because it’s particularly hard to identify and treat or that doctors informed in the matter are unconvinced by the evidence for CHS, but because much of institutional medicine has been vocally anti-cannabis for the better part of the last hundred years in America.

“I have patients who don’t believe that cannabinoid hyperemesis is a thing because they think that I’m just another one of the doctors telling them that marijuana is bad.”

Dr. Jeff Lapoint, Director of Medical Toxicology at Kaiser Permanente San Diego

“Doctors receive a lot of doubt and skepticism from patients, and I believe this is mainly due to the way doctors communicate their message,” observes Lontchar. “Also, their lack of first-hand experience makes them less than ideal to communicate this message since they cannot relate to the patient.”

Across the aisle, Lapoint also remarks on the tension between doctors and CHS patients.

“A lot of times people in the medical world come across like the guidance counselor from South Park,” he draws as a metaphor for public health information at its worst.

“Like, ‘Don’t do drugs, mmkay?’” he quotes, mimicking the iconic voice of failed educational outreach. “Because they come across that way, patients don’t believe us.”

In the dozens of papers we at Leafly reviewed in researching the current medical corpus regarding CHS, the language employed by the authors commonly frames patients as drug abusers, continuing the stigmatization of cannabis consumers.

Daily cannabis consumers are framed as “chronic marijuana abusers,” with no distinction between medical and recreational consumption. All consumption, in CHS Literature Land, is bad consumption, and all daily consumption is labeled “abuse,” “chronic use,” or some variation on judgmental and loaded language.

Take, for example, the PubMed Central database of medical literature. The database logs 197 search results for the words “cannabinoid hyperemesis,” 147 of which also contain the word “abuse.”

As the language of CHS echoes the language of the War On Drugs, it puts itself at odds with the very people it most needs to reach by falling on the adversarial end of cannabis politicization. It alienates cannabis consumers who know very well the medical and therapeutic benefits of the plant and have grown to distrust authoritative voices attempting to tell them otherwise.

“I have patients who don’t believe that cannabinoid hyperemesis is a thing because they think that I’m just another one of the doctors telling them that marijuana is bad or they’re allergic to marijuana or something stupid,” Lapoint explains. “And so it becomes a thing where we’ve lost people’s trust.”

Neutralizing this language would go a long way to building trust with advocates who want nothing more than to recognize the potential risks of cannabis consumption without supplying ammunition to anti-legalization types.

Yet, an increasing number of cannabis consumers—millions of individuals by some estimates—languish on looking for help from a medical system that’s ill-prepared to give them the information they need, never mind in a way they will be able to stomach.

Many of these people will spend tens of thousands of dollars on wrong answers—hundreds of thousands in Lontchar’s case—only to be told that they could’ve pocketed the cash and kept all their internal organs if they’d simply stopped using cannabis.

This is, as issues of trust tend to be, a delicate matter.

Lead photo: (Ponomariova_Maria, stdemi/iStock)

Visit Our Affiliate Sites