No-burp syndrome: What it's like to live with RCPD

No-burp syndrome: What it's like to live with RCPD

"Looking back, I realized I had never burped in my entire life," says Isabelle Zeidner, a 23-year-old Columbia social work grad student who lives in New York City. "I noticed it more as I got older. Whenever I ate or drank, I could never release any air. Instead, my throat would make a loud gurgling sound."

Most people take burping for granted, but for those with a condition called retrograde cricopharyngeus dysfunction (RCPD), also known as "no-burp syndrome," it’s physically impossible. Some people have a muscle in the throat that fails to relax, causing excess air to be trapped in the esophagus. Pressure in the chest can increase, and those living with the condition may also experience bloating and unusual gurgling sounds.

Until recently, RCPD wasn’t even on most doctors’ radar. The condition isn’t new, but it wasn’t officially recognized — or even named — until 2019. A community of more than 30,000 users with the same puzzling symptoms found each other on Reddit, and when Zeidner discovered the forum, she realized she wasn’t alone and that there might finally be a medical explanation for her symptoms.

With this new perspective, Zeidner developed a strong suspicion that she had RCPD. Still, it wasn't until she met Seth Kaplan, MD, director of the Center for Voice, Airway and Swallowing at Northwell Health’s Lenox Hill Hospital, that she gained certainty: Dr. Kaplan could not only definitively diagnose her RCPD, but he could provide a treatment that would bring Zeidner long-lasting relief.

As the medical field gains more insight into RCPD, experts like Dr. Kaplan are diagnosing the condition with growing frequency. To understand why symptoms like Zeidner’s occur, how no-burp syndrome is diagnosed and what treatment looks like, it helps to learn more about RCPD itself.

What is RCPD?

RCPD occurs when a small muscle in the throat called the cricopharyngeus doesn’t relax properly.

"The cricopharyngeus muscle acts as a gateway between the throat and esophagus, opening and closing as we swallow to let food or drink pass down to the stomach," Dr. Kaplan explains. "But for those with RCPD, this muscle remains tightly closed when air tries to escape, trapping pressure in the stomach and chest."

Also known as the upper esophageal sphincter, the cricopharyngeus hugs the top of the esophagus and only relaxes briefly to allow food, liquids or trapped air through. Each time you swallow, small amounts of air travel down the esophagus along with food and drink. When enough air accumulates in the stomach, the cricopharyngeus normally relaxes to release it upward, a natural process we recognize as a burp.

While the exact cause of cricopharyngeus muscle dysfunction isn’t fully understood, researchers suspect it may involve issues with nerve or muscle coordination.

RCPD appears to be rare, though the true prevalence is unknown. The condition was first identified in 2019, and many people with mild symptoms may never seek treatment, suggesting it could be underdiagnosed.

RCPD symptoms: More than just the inability to burp

An inability to burp is the hallmark symptom of RCPD. But for many, that’s just the beginning. Because the body can’t release swallowed air, it builds up in the digestive system and can cause a range of uncomfortable symptoms, including:

• Excessive bloating or a feeling of fullness
• Excessive flatulence
• Chest pressure or discomfort
• Gurgling sounds in the throat or chest

Symptoms often worsen after eating or drinking, especially carbonated drinks, explains Dr. Kaplan. These challenges can lead patients to adopt coping behaviors, such as food avoidance. The same muscle dysfunction that blocks burps in RCPD can also interfere with your body’s ability to vomit. Some cannot vomit at all, while those who can often describe the experience as unusually intense and painful since the built-up pressure makes the release much harder. These patients may even develop emetophobia — a fear of vomiting.

For Zeidner, the inability to burp was more than just uncomfortable; it became a constant disruption to her life. Her throat’s constant gurgling made her self-conscious in college lectures and during job interviews, as she worried others would hear them.

Social outings, especially those involving eating or drinking, would trigger intense physical discomfort, forcing her to go home early. "My friends and I even started referring to my strange throat sounds as ‘my gurgles’ because they were so frequent," said Zeidner.

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How is RCPD diagnosed?

Diagnosing RCPD doesn’t involve complex testing; however, it requires a clinician who is familiar with the condition. Many patients first consult a gastroenterologist because RCPD symptoms often mimic those of a GI disorder. Plus, the results of standard gastrointestinal tests, including imaging and endoscopy, will often appear normal, which can further delay diagnosis.

At Lenox Hill, Dr. Kaplan begins with a detailed review of his patient’s symptoms and medical history. If he suspects RCPD, Dr. Kaplan performs a head and neck exam, carefully examining the throat. This allows him to rule out other possible causes, like obstructions, and to assess whether the cricopharyngeus muscle is failing to relax properly.

RCPD treatment: Can RCPD be cured?

The classic treatment for RCPD is one you might not expect: Botox.

While commonly used for cosmetic dermatology purposes such as smoothing wrinkles, Botox has long been a powerful tool for treating certain throat conditions, according to Dr. Kaplan. In this case, it’s injected directly into the cricopharyngeus muscle.

"We’ve been using Botox to treat swallowing conditions related to this muscle for years," says Dr. Kaplan. "Now, we’re simply applying it to the reverse problem: instead of helping patients pass down food, we’re helping air go up."

Botox works by partially paralyzing the cricopharyngeus muscle, causing it to relax. For RCPD patients, this relaxation allows trapped air to pass through. The procedure is surprisingly quick, and patients go home the same day. Some doctors may administer the injection while the patient is awake, but Dr. Kaplan prefers to do it under general anesthesia.

The most common short-term side effect is temporary difficulty with swallowing, which may last a few weeks after the procedure. You may burp unexpectedly, especially while laughing, yawning or any straining that compresses the abdomen. In some patients, acid reflux may surface or worsen after treatment, since the same muscle that was preventing burping may also have been limiting the regurgitation of stomach acid.

As soon as she was diagnosed, Zeidner scheduled her Botox procedure. The relief was almost immediate, and for the first time in her life, she burped. "It was almost like a switch flipped and suddenly 22 years of trapped burps were coming out," she says.

Patients usually begin to burp within three days, although some may need more time for the Botox’s effects to set in. During his follow-up visits, Dr. Kaplan even encourages patients to bring a fizzy drink to test their burping ability.

Most patients only need one injection. "The vast majority of my patients are cured after a single injection,” Dr. Kaplan says. “For those who don't respond initially, a second round is almost always successful."

For the few patients who don’t respond to Botox, a cricopharyngeal myotomy may be an option. In this procedure, the muscle is cut to allow air to escape. Thankfully, the need for this surgery is rare.

Why RCPD recognition matters — and how online communities are helping fill the gap

For people living with RCPD, the main challenge isn’t just managing uncomfortable — and often embarrassing — symptoms, it’s realizing they point to a real, treatable medical condition.

For Zeidner, connecting with others with the same suspected condition was both reassuring and motivating, giving her the push she needed to seek answers. "I never realized how many people were silently struggling with this condition," she says. "After a humorous TikTok video I made about my RCPD went viral, I got countless messages from others going through a similar experience."

"RCPD isn’t something that was taught in medical school or residency," says Dr. Kaplan. "It really came about through the power of community and an amazing group of people who really just want relief for something they didn’t know could be cured."

As patients like Zeidner continue to raise awareness and physicians like Dr. Kaplan help guide diagnosis and care, what was once a little-known condition is becoming easier to recognize — and treat.

This story was produced by Northwell Health and reviewed and distributed by Stacker.