Scans and a surgery didn’t show any abnormalities. Her neurologist had a surprising theory.
By Lisa Sanders, M.D. Published Nov. 16, 2022 Updated Nov. 28, 2022
The 70-year-old woman lay unmoving at Robert Wood Johnson University Hospital Somerset in central New Jersey. Her eyes were closed, and she moaned softly as Dr. Gene Pacelli, the hospitalist in charge of her care, entered her room. The acid stench of new vomit in a basin on her bed burned in his nose. Her pale face glistened, and her graying hair was dark with sweat and vomit. She was brought to the hospital late the night before with severe abdominal pain and uncontrollable vomiting. She was the first of the new patients admitted overnight that Pacelli saw that morning. Her nurse, Janet Brooks, was worried about her. She was clearly in excruciating pain, Brooks told him, but refused to take anything for it. The pain meds hadn’t helped in the emergency room, so why bother?
Pacelli called her name quietly. She opened her eyes briefly, then closed them again as if just acknowledging the world outside the bed was unbearable. “Where is your pain?” he asked. She simply moaned. He pressed her abdomen gently. “Does that worsen the pain?” She said nothing. He pressed up and down her belly. Her pain seemed to have nothing to do with where he put the pressure. And yet identifying where the pain originated would help. She already had a couple of CT scans of her abdomen done, and they didn’t show any abnormalities, but the picture quality was affected by a nerve stimulator implanted to treat a long history of migraine headaches.
This level of pain, out of proportion to the examination he performed, really stood out to Pacelli. On top of his list of possible causes was ischemia, in which some type of blockage cuts off the supply of oxygen-rich blood to the gut. One of the CT scans used contrast to highlight the major blood vessels, which didn’t show any blockages, but he knew from years of experience that no test is 100 percent accurate. And to miss this diagnosis could be deadly. There were signs in her blood tests that damage was already taking place. Her white blood cell count was very high, suggesting an infection or some type of inflammation. Oxygen-starved tissues release an acid as they start to die. Her level of this acid was elevated and rising. Pacelli was worried.
He called vascular surgery. They needed to find out if there was an obstruction of an artery. If there was, the injured tissue had to be removed and the blockage opened. This kind of exploratory surgery used to require a big operation with a long incision from rib cage to pelvis so that doctors could get a good look at what was happening to the gut. No longer. The development of tiny cameras and surgical equipment designed to be inserted into the abdomen through small incisions made this potentially lifesaving investigation much less dangerous. The surgeons took her to the O.R. that afternoon.
Losing 10 Percent of Her Weight
Pacelli was seeing other patients when the surgeons called. The patient came through the surgery with no complications, but they didn’t find anything wrong. The organs looked good. The vessels, fine. Pacelli was relieved, but if it wasn’t ischemia, what was it?
Back from the O.R., the patient continued to have severe pain. She vomited even though her stomach held nothing. When she arrived at the E.R. the night before, the first concern was that this was an infection. It wasn’t Covid-19. They sent off blood and urine to see if bacteria were growing there and started her on broad-spectrum antibiotics. The final results from those cultures came back on her third day in the hospital. There was no sign of infection.
By then the patient was starting to feel better. The vomiting stopped, the abdominal pain resolved and by hospital Day 4, she was able to drink — and by the next day she started to eat. Feeling better, she was also able to tell Pacelli more about her symptoms. This was the third time in the past three months she had gone to an E.R. with this kind of pain and vomiting. Between episodes she felt fine. But she had lost more than 10 pounds — nearly 10 percent of her baseline weight — since it all started. Pacelli knew that if she went home without an answer, it was likely to happen again. But as the patient improved, she became restless and eager to be discharged.
Pacelli was able to persuade the patient to stay in the hospital long enough to be seen by the neurology team. Nerve pain is one of the few types of pain that doesn’t respond to pressure. She had a history of migraines. Could this be something known as an abdominal migraine? This disorder is usually seen in children who have a migraine syndrome characterized by abdominal pain, nausea and vomiting rather than the more typical headaches.
Another possibility was something known as abdominal epilepsy — a type of seizure that reveals itself through episodes of severe abdominal pain. Both diseases were more common in children but possible in adults. The neurologist wanted the patient to follow up for additional testing after she got home. She preferred instead to see the neurologist who had treated her migraines for the past 20 years. Pacelli agreed with that plan.
California Connection
She was as good as her word and arranged to have a telehealth visit with her neurologist, Dr. Randall Berliner, the next day. Her migraines almost completely disappeared after the nerve stimulator was implanted a few years earlier, so she hadn’t seen him in a while. She told Berliner about her crazy episodes of pain and vomiting that came out of the blue, lasted for days and then disappeared. She described all the testing she’d had over the past three months. She had blood tests. She was scoped top to bottom. And of course, she had the exploratory surgery. Could this be abdominal migraines or epilepsy, as Pacelli thought? Berliner, who was a psychiatrist and neurologist at Montefiore Health System, was quiet for a moment and then asked a question no one had asked before. “Do you smoke marijuana?” Of course not, she exclaimed. But, she added slowly, she did use cannabis gummies for her chronic joint pain.
She spent the past winter in Southern California, returning that spring to her home in New Jersey. While in California, she heard a lot about how gummies could help with chronic pain. She had years of low back pain and decades of widespread joint pain from osteoarthritis. Why not give cannabis a try? She tried it, and it helped. She took two gummies three times a day most days. She didn’t get high, she said. But her life was better; walking or sitting or just doing housework was so much easier simply because she had less pain.
Berliner asked if she had ever heard of cannabinoid hyperemesis syndrome. She had not. C.H.S., as it’s often called, was first described in 2004 in a series of patients from Southern Australia who developed nausea, vomiting and abdominal pain after using marijuana regularly. The symptoms stopped when the drug was stopped, and started again if the drug was restarted. As more states legalize cannabis and additional uses for the drug are promoted, the reported cases of this rare disorder have increased. It’s not well understood why some have this reaction while others do not. A study published earlier this year suggested one possible answer — an inherited genetic intolerance to THC, one of the active ingredients in cannabis — but there’s no definitive explanation.
Berliner had another question for the woman: Does your nausea get better when you shower? In most reported cases of C.H.S., hot showers temporarily relieve the nausea and abdominal pain. No — not that she’d noticed, anyway. The only treatment for this, Berliner told the woman, was abstinence. She would have to find something else for her pain.
The woman was amazed. She had never heard of this and was disappointed that this medication she found so useful could be causing these terrible episodes. She didn’t want to stop using the gummies. She tried taking fewer; she tried taking hot showers. Nothing helped. So she stopped. And she hasn’t had any abdominal pain or nausea since. “I didn’t tell any of my doctors about the gummies,” the patient told me recently. “I was embarrassed.” And she couldn’t imagine that this drug well known to reduce nausea could cause the opposite. But now that she does know, she is determined to spread the word about this devastating side effect.
Lisa Sanders, M.D., is a contributing writer for the magazine. Her latest book is “Diagnosis: Solving the Most Baffling Medical Mysteries.” If you have a solved case to share, write her at Lisa.Sandersmdnyt@gmail.com.