How do I know if I have Cyclic vomiting syndrome?
What signs or symptoms may make you suspect you may have Cyclic vomiting syndrome. People who have experience in Cyclic vomiting syndrome offer advice of what things may make you suspicious and which doctor you should go to to receive treatment
Cyclic vomiting syndrome (CVS) is a rare functional disorder characterized by recurrent, unpredictable episodes of severe, persistent nausea and vomiting that are separated by symptom-free intervals. Diagnosis is primarily clinical, based on identifying a stereotypical pattern of episodes that occur at the same time of day or with similar triggers, often requiring the exclusion of other digestive or neurological conditions.
What are the early signs and symptoms of Cyclic vomiting syndrome?
The hallmark of Cyclic vomiting syndrome is the "stereotypical" nature of the attacks. Unlike common stomach bugs, episodes of Cyclic vomiting syndrome often follow a predictable pattern for each individual—starting at the same time of day, lasting for a similar duration, and presenting with identical symptoms. Early signs often include intense nausea, followed by relentless vomiting and retching that can last from a few hours to several days. Many patients also experience extreme thirst, lethargy, cold sweats, and hot flashes. Because the nervous system is heavily involved, patients frequently report associated symptoms like restless legs, anxiety, or depression during or between episodes.
How can I identify patterns for my doctor?
Tracking your health is the most effective way to help your physician recognize Cyclic vomiting syndrome. Because this condition is often misdiagnosed as food poisoning or standard gastroenteritis, keeping a detailed log is crucial. When self-assessing, look for these specific markers:
- Temporal consistency: Do your episodes start at the same time (e.g., early morning)?
- Trigger identification: Are episodes preceded by specific stressors, excitement, or certain foods?
- Symptom-free intervals: Are you completely healthy and symptom-free between these severe bouts?
- Duration: How many hours or days do the episodes typically last?
When should I seek medical evaluation and what tests are used?
You should consult a gastroenterologist or neurologist if you experience recurrent, unexplained vomiting that disrupts your daily life. There is no single "test" for Cyclic vomiting syndrome; it is a diagnosis of exclusion. Doctors will typically order tests to rule out metabolic disorders, obstruction, or neurological issues. Common investigations include blood work to check electrolyte levels, abdominal ultrasounds, or upper endoscopies. If you suspect you have Cyclic vomiting syndrome, explicitly ask your physician: "Could this be a cyclic pattern rather than acute illness?"
What are the red flags requiring urgent care?
While Cyclic vomiting syndrome is chronic, the dehydration resulting from severe vomiting can become life-threatening. Seek emergency medical attention if you experience:
- Signs of severe dehydration (inability to keep liquids down, dark urine, or dizziness).
- Vomiting blood or bile that is bright green or contains "coffee ground" material.
- Severe abdominal pain that persists even when you are not vomiting.
- Confusion, lethargy, or extreme difficulty staying awake.
How do I advocate for myself if my concerns are dismissed?
It is common for patients to feel unheard when symptoms are intermittent. If your concerns are dismissed, bring a symptom diary to your next appointment. Mention that 863 people with Cyclic vomiting syndrome have connected through the DiseaseMaps.org community to share their experiences with diagnostic delays. Requesting a referral to a specialist who has specific experience with motility disorders or autonomic nervous system dysfunction can be a turning point in your care.
Next steps
- Start a detailed symptom diary to capture the timing, duration, and intensity of your episodes.
- Consult a gastroenterologist or neurologist who specializes in functional GI disorders.
- Join the DiseaseMaps.org community to connect with others who understand the diagnostic journey of Cyclic vomiting syndrome.
- Discuss potential management strategies like Amitriptyline, L-Carnitine, or CoQ-10 with your doctor.
Medical disclaimer: This information is for educational purposes only and does not constitute medical advice, diagnosis, or treatment; always seek the advice of your physician regarding a medical condition.
References
- NIH Genetic and Rare Diseases (GARD) Information Center: Cyclic Vomiting Syndrome.
- Orphanet: Rare Disease Database (ORPHA: 247653).
- National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).
- Cyclic Vomiting Syndrome Association (CVSA).
Posted Jan 21, 2018 by Laura 3890
Posted Feb 19, 2018 by Rachel 4410
Posted May 29, 2019 by Nicci 3070
Posted May 30, 2019 by Chloe 3120
Posted May 30, 2019 by Cassandra Katharina Minerva 4050
A child may be suspected to have CVS if the following apply:
they have had at least five vomiting episodes, or three separate episodes over six months
the episodes of nausea and vomiting last from one hour to 10 days
the episodes are similar each time
they vomit at least four times an hour for at least one hour
the vomiting is not caused by another disorder
they are well between episodes
Similarly, an adult may have CVS if they have had three or more vomiting episodes in the past year that have each been similar, with no nausea or vomiting between episodes.
The high frequency of vomiting, and the fact that it often starts at night or early morning, are clues that the cause may be CVS and not another condition.
Blood or urine tests may be carried out (to rule out infection or kidney problems), and scans such as an endoscopy or abdominal ultrasound, to see if there is an abnormality in the digestive tract.
Only after other conditions have been ruled out will a diagnosis of CVS be made. At this stage, the patient may have been referred to a gastroenterologist (specialist in digestive system disorders).
Pattern or cycle of symptoms in children
A doctor will often suspect cyclic vomiting syndrome in a child when all of the following are present:
at least five episodes over any time period, or a minimum of three episodes over a 6-month period
episodes lasting 1 hour to 10 days and happening at least 1 week apart
episodes similar to previous ones, tending to start at the same time of day, lasting the same length of time, and happening with the same symptoms and intensity
vomiting during episodes happening at least four times an hour for at least 1 hour
episodes are separated by weeks to months, usually with no symptoms between episodes
after appropriate medical evaluation, symptoms cannot be attributed to another medical condition
Pattern or cycle of symptoms in adults
A doctor will often suspect cyclic vomiting syndrome in adults when all of the following are present:
three or more separate episodes in the past year and two episodes in the past 6 months, happening at least 1 week apart
episodes that are usually similar to previous ones, meaning that episodes tend to start at the same time of day and last the same length of time—less than 1 week
no nausea or vomiting between episodes, but other, milder symptoms can be present between episodes
no metabolic , gastrointestinal , central nervous system , structural, or biochemical disorders
A personal or family history of migraines supports the doctor’s diagnosis of cyclic vomiting syndrome.
Your doctor may diagnose cyclic vomiting syndrome even if your pattern of symptoms or your child’s pattern of symptoms do not fit the patterns described here. Talk to your doctor if your symptoms or your child’s symptoms are like the symptoms of cyclic vomiting syndrome.
What medical tests do doctors use to diagnose cyclic vomiting syndrome?
Doctors use lab tests, upper GI endoscopy, and imaging tests to rule out other diseases and conditions that cause nausea and vomiting. Once other diseases and conditions have been ruled out, a doctor will diagnose cyclic vomiting syndrome based on the pattern or cycle of symptoms.
Lab tests
Your doctor may use the following lab tests:
Blood tests can show signs of anemia, dehydration, inflammation, infection, and liver problems.
Urine tests can show signs of dehydration, infection, and kidney problems.
Blood and urine tests can also show signs of mitochondrial diseases .
Upper GI endoscopy
Your doctor may perform an upper GI endoscopy to look for problems in your upper digestive tract that may be causing nausea and vomiting.
Imaging tests
A doctor may perform one of more of the following imaging tests:
Ultrasound of the abdomen.
Gastric emptying test, also called gastric emptying scintigraphy. This test involves eating a bland meal, such as eggs or an egg substitute, that contains a small amount of radioactive material. An external camera scans the abdomen to show where the radioactive material is located. A radiologist can then measure how quickly the stomach empties after the meal. Health care professionals perform gastric emptying tests only between episodes.
Upper GI series.
MRI scan or CT scan of the brain.
Posted Jul 12, 2021 by CVS Network - Angie 2875
Posted Nov 3, 2017 by Betty 1700
Posted Nov 4, 2017 by Fanny 2000
Having ruled out other effects at the brain level.
Feeling of nausea involuntary.
Pain/ heartburn.
Sensation of dizziness (present or not)
Posted Nov 4, 2017 by Paola 1750
