CYCLICAL VOMITING SYNDROME
What is cyclic vomiting syndrome (CVS)?
CVS is characterized by episodes or cycles of severe nausea and vomiting that last for hours, or even days that alternate with intervals with no symptoms. Although originally thought to be a pediatric disease, CVS occurs in all age groups. Medical researchers believe CVS and migraine headaches are related.
Each episode of CVS is similar to previous ones, meaning the episodes tend to start at the same time of day, last the same length of time, and occur with the same symptoms and level of intensity. Although CVS can begin at any age, in children it starts most often between the ages of three and seven.
Episodes can be so severe that a person has to stay in bed for days, unable to go to school or work. The exact number of people with CVS is unknown, but medical researchers believe more people may have the disorder than commonly thought. Because other more common diseases and disorders also cause cycles of vomiting, many people with CVS are initially misdiagnosed until other disorders can be ruled out. CVS can be disruptive and frightening not just to people who have it but to family members as well.
The Four Phases of CVS:
Symptom-free interval phase. This phase is the period between episodes when no symptoms are present.
Prodrome phase. This phase signals that an episode of nausea and vomiting is about to begin. Often marked by nausea with or without abdominal pain this phase can last from just a few minutes to several hours. Sometimes, taking medicine early in the phase can stop an episode in progress. However, sometimes there is no warning; a person may simply wake up in the morning and begin vomiting.
Vomiting phase. This phase consists of nausea and vomiting; inabilities to eat, drink, or take medicines without vomiting; paleness; drowsiness; and exhaustion.
Recovery phase. This phase begins when the nausea and vomiting stop. Healthy color, appetite, and energy return.
Sufferers may vomit or retch six to twelve times an hour, and an episode may last from a few hours to well over three weeks and in some cases into months, with median episode duration of 41 hours. Acid, bile, and (if the vomiting is severe) blood may be vomited. Some sufferers will ingest water to reduce the irritation of bile and acid on the esophagus during emeses. Between episodes, the sufferer is usually otherwise normal and healthy but can be in a weak state of fatigue or have muscle pain. In approximately half of sufferers the attacks, or episodes, occur in a time related manner. Each attack is stereotypical: that is, in any given individual the timing, frequency and severity of attacks is similar.
Episodes may happen every few days or every few months. For some there is not a pattern in time that can be recognized. Some sufferers have a warning of an attack: they may experience a prodrome, usually intense nausea and pallor sometimes heightened sensitivity to especially light but also smell, sound, pressure, and temperature with sometimes-oncoming muscle pain and fatigue is reported by some patients. The majority of sufferers, but not all, can identify "triggers" that may precipitate an attack. The most common are various foods, infections (such as colds), menstruation, extreme physical exertion, lack of sleep, and psychological stresses both positive and negative.
During an attack, a sufferer may be light sensitive (photophobic), sound sensitive (phonophobic), and, less frequently, temperature or pressure sensitive. Some sufferers also have a strong urge to bathe in warm or cold water. Some sufferers report that they experience a restless sensation or stinging pain along the spine, hands, and feet followed by weakness in both legs. Some of these symptoms may be caused by dehydration rather than any underlying cause for the CVS.
Expert consensus is that CVS is a distinct disorder and is a part of the migraine spectrum (migraine headaches, CVS, and abdominal migraines). Once patients are properly diagnosed, treatment is highly effective. Because of renewed interest in CVS since the 1990’s, many more patients in all age groups are being recognized who suffer from this disabling disorder. An increase in basic Science and clinical research in CVS will lead to better patient outcomes.
What triggers CVS?
Many people can identify a specific condition or event that triggered an episode, such as an infection. Common triggers in children include emotional stress and excitement. Anxiety and panic attacks are more common triggers in adults. Colds, allergies, sinus problems, and the flu can also set off episodes in some people.
Other reported triggers include eating certain foods such as chocolate or cheese, eating too much, or eating just before going to bed. Hot weather, physical exhaustion, menstruation, and motion sickness can also trigger episodes.
What are the symptoms of CVS?
A person who experiences the following symptoms for at least 3 months—with first onset at least 6 months prior—may have CVS:
- vomiting episodes that start with severe vomiting—several times per hour—and last less than 1 week
- three or more separate episodes of vomiting in the past year
- absence of nausea or vomiting between episodes
A person with CVS may experience abdominal pain, diarrhea, fever, dizziness, and sensitivity to light during vomiting episodes. Continued vomiting may cause severe dehydration that can be life threatening. Symptoms of dehydration include thirst, decreased urination, paleness, exhaustion, and listlessness. A person with any symptoms of dehydration should see a health care provider immediately.
Treatment has generally been based on anecdotal reports. Treatment focuses on:
- symptom management aimed at terminating episodes
- antimigraine medications to prevent an episode
Treatment varies, but people with CVS generally improve after learning to control their symptoms. People with CVS are advised to get plenty of rest and sleep and to take medications that prevent a vomiting episode, stop one in progress, speed up recovery, or relieve associated symptoms.
Once a vomiting episode begins, treatment usually requires the person to stay in bed and sleep in a dark, quiet room. Severe nausea and vomiting may require hospitalization and intravenous fluids to prevent dehydration. Sedatives may help if the nausea continues.
Sometimes, during the prodrome phase, it is possible to stop an episode from happening. For example, people with nausea or abdominal pain before an episode can ask their doctor about taking ondansetron (Zofran) or lorazepam (Ativan) for nausea or ibuprofen (Advil, Motrin) for pain. Other medications that may be helpful are ranitidine (Zantac) or omeprazole (Prilosec), which help calm the stomach by lowering the amount of acid it makes.
During the recovery phase, drinking water and replacing lost electrolytes are important. Electrolytes are salts the body needs to function and stay healthy. Symptoms during the recovery phase can vary. Some people find their appetite returns to normal immediately, while others need to begin by drinking clear liquids and then move slowly to solid food.
People whose episodes are frequent and long lasting may be treated during the symptom-free intervals in an effort to prevent or ease future episodes. Medications that help people with migraine headaches, such as propranolol (Inderal), cyproheptadine (Periactin), and amitriptyline (Elavil), are sometimes used during this phase, but they do not work for everyone. Taking the medicine daily for 1 to 2 months may be necessary before one can tell if it helps.
The symptom-free interval phase is a good time to eliminate anything known to trigger an episode. For example, if episodes are brought on by stress or excitement, a symptom-free interval phase is the time to find ways to reduce stress and stay calm. If sinus problems or allergies cause episodes, those conditions should be treated.
During an episode, anti-migraine drugs such as sumatriptan (Imitrex) may be prescribed to stop symptoms of migraine headache. However, these agents have not been studied for use in children.
Existing pathophysiologic evidence points towards CVS as a brain-gut disorder involving neuro-
endocrine pathways in genetically predisposed individuals.
How is CVS diagnosed?
CVS is hard to diagnose because no tests—such as a blood test or x ray—can establish a diagnosis of CVS. A doctor must look at symptoms and medical history to rule out other common diseases or disorders that can cause nausea and vomiting. Making a diagnosis takes time because the doctor also needs to identify a pattern or cycle to the vomiting.
There are established criteria to aid diagnosis of CVS; essential criteria are:
1. A history of three or more periods of intense, acute nausea, and unremitting vomiting and sometimes pain lasting hours to days and even into months are reported.
2. Intervening symptom-free intervals, lasting weeks to months
3. Exclusion of metabolic, gastrointestinal or central nervous system structural or biochemical disease e.g. individuals with specific physical causes (e.g. intestinal malrotation)
During episodes of vomiting, blood sugar, fluid-electrolyte balance, and acid-base balance are monitored. Once formal investigations to rule out gastrointestinal or other etiologies have been conducted, these need not be repeated in future episodes.
The prevalence of the condition is not clear. Two published studies on childhood CVS suggest nearly two percent of school age children may have CVS. However, diagnosis is problematic and as knowledge of CVS has increased in recent years, more and more cases are emerging. This suggests a tendency to under diagnosis, and thus the true figure may be higher.
CVS and Migraine
The relationship between migraine and CVS is still unclear, but medical researchers believe the two are related.
- Migraine headaches, which cause severe, head pain; abdominal migraines, which cause stomach pain; and CVS, are all marked by severe symptoms that start and end quickly and are followed by intervals without pain or other symptoms.
- Many of the situations that trigger CVS also trigger migraines, including stress and excitement.
- Research has shown that many children with CVS either have a family history of migraine or develop migraines, as they grow older.
Because of the similarities between migraine and CVS, doctors treat some people with severe CVS with drugs that are also used for migraine headaches. The drugs are designed to prevent episodes, reduce frequency, and lessen severity.
What are the complications of CVS?
The severe vomiting that defines CVS is a risk factor for several complications:
- Dehydration. Vomiting causes the body to lose water quickly. Dehydration can be severe and should be treated immediately.
- Electrolyte imbalance. Vomiting causes the body to lose important salts it needs to keep working properly.
- Peptic esophagitis. The esophagus—the tube that connects the mouth to the stomach—becomes injured from stomach acid moving through it while vomiting.
- Hematemesis. The esophagus becomes irritated and bleeds, so blood mixes with vomit.
- Mallory-Weiss tear. The lower end of the esophagus may tear open or the stomach may bruise from vomiting or retching.
- Tooth decay. The acid in vomit can hurt teeth by corroding tooth enamel.
Points to Remember:
- People with CVS have severe nausea and vomiting that come in cycles.
- CVS occurs in all age groups.
- Medical researchers believe CVS and migraine headaches are related.
- CVS has four phases: symptom-free interval phase, prodrome phase, vomiting phase, and recovery phase.
- Many people can identify a condition or event that triggers an episode of nausea and vomiting. Infections and emotional stress are two common triggers.
- The main symptoms of CVS are episodes of nausea and vomiting that come and go. Vomiting can lead to severe dehydration that can be life threatening.
- Symptoms of dehydration include thirst, decreased urination, paleness, exhaustion, and listlessness. A person with any symptoms of dehydration should see a health care provider immediately.
- The only way a doctor can diagnose CVS is by looking at symptoms and medical history to rule out any other possible causes for the nausea and vomiting. Then the doctor must identify a pattern or cycle to the symptoms.
- Treatment varies by person, but people with CVS generally improve after learning to control their symptoms. They may also be given medications that prevent a vomiting episode, stop one in progress, speed up recovery, or relieve associated symptoms.
- Complications include dehydration, which can be severe; electrolyte imbalance; peptic esophagitis; hematemesis; Mallory-Weiss tear; and tooth decay
There is no known cure for CVS, but there are medications that can be used to treat, intervene in, and prevent attacks. There is a growing body of publications on either individual cases or experiences of cohorts of CVS patients. Treatment is usually on an individual basis, based on trial and error.
The most common therapeutic strategies for those already in an attack are maintenance of salt balance by appropriate intravenous fluids and, in some cases, sedation. Having vomited for a long period prior to attending a hospital, patients are typically severely dehydrated. Abortive therapy has limited success, but for a number of patients potent anti-emetic drugs such as ondansetron (Zofran) or granisetron (Kytril), dronabinol (Marinol), and more recently dextromethorphan may be helpful in either preventing an attack, aborting an attack or reducing the severity of an attack. In some instances, sedatives or painkillers (particularly morphine based) can be helpful. Lifestyle changes may also be recommended, such as extended rest and/or reduction of stress.
Since Dr.Gee’s initial description, at least six large series of CVS patients have been published. In the 1990s, renewed interest in CVS led to international conferences in 1994 and 1998.
Course and outcome:
Fitzpatrick et al. (2007) identified 41 children with cyclic vomiting. The mean age of the sample was 6 years at the onset of the syndrome, 8 years at first diagnosis, and 13 years at follow-up. As many as thirty nine percent of the children had resolution of symptoms immediately or within weeks of the diagnosis. Vomiting had resolved at the time of follow-up in sixty one percent of the sample. Many children, including those in the remitted group, continued to have somatic symptoms such as headaches (in 42%) and abdominal pain (in 37%).
Most children who have this disorder miss on average of twenty-four school days a year. The frequency of episodes is higher, for some people, during times of excitement. Charitable organizations to support sufferers and their families and to promote knowledge of CVS exist in several countries.
There is little hard evidence of death because of the condition. However, in severe cases the fluid loss can lead to potentially life-threatening salt imbalances and extremely high blood pressure often develops during an attack. The patient can also become undernourished or underfed if the attacks last too long. In underdeveloped countries, it remains probable that CVS may contribute to mortality. In the developed world with adequate medical interventions, most sufferers can be supported during an attack and will recover from the episode.
The average age at onset is between three and seven years of age. CVS has been seen in infants who are as young as 6 days and in adults who are as old as 73 years. Females show a slight predominance over males; the female-to-male ratio is 57:43. CVS occurs in all races but seems to disproportionately affect Caucasians.
Many affected individuals have a family history of related conditions, such as migraines, in their mothers and maternal relatives suggesting mitochondrial inheritance. Single base pair and DNA rearrangements in the mitochondrial DNA have been associated with these traits. Charles Darwin's adult illnesses have been suggested to be due to this syndrome.
The English physician Samuel Gee first described CVS in 1882.
My son has a mitochondrial disease and recently diagnosed with Cyclic Vomiting Syndrome. I myself have migraines. My son has entered a chronic nausea phase and always feels sick. I understand that is highly unusual as patients are typically fine between episodes. When this started, he did feel great following an episode, and he was probably more ‘typical’ at the outset. The doctors are confident that it is CVS and that my migraines are related. How young is the youngest patient you have treated with marijuana? Have you ever seen worsening symptoms with treatment?
After 7 YEARS of in and out of hospitals, I found that I have CVS. I discovered it on the web, NOT the doctors! You have to be your own doctor! Since my last 3-month illness in 2009, I started using a Vaporizer I knew this would help me (of course I had already discovered pot for my nausea) I got one and I have not been sick for 15 months (knock on wood).
I have stopped the Vomiting Cycle 7 times or more BECAUSE OF POT! In addition,
vaporizing it. I have been in the hospital 14 times over the years, it is absolute agony! I vomit blood like a volcano – red blood! I am so stripped raw in my stomach… I feel half-dead when I get out of the hospital. It takes a month or more to get back to feeling normal. It is HELL.
I know that VAPORIZING POT STOPS THE CYCLE!
If I start to get sick, I vaporize and lay down.
(I think smoking it was too harsh on the stomach) The switch may be the key.
(It helps with the stress of HAVING CVS too! I thought 2009 was going to kill me)
PS: My heart goes out to those of you with this horrible DISEASE.
(Yeah I found that out too – -it is #9 on the top ten Rare Disease List.
Your best bet is to present your medical history and if possible, get documentation from your doctor to show that marijuana helps you with the symptoms (and hopefully to get the court to understand the severity of your condition, since many people have never heard of CVS). Even without medical marijuana laws in Oklahoma, a sympathetic jury might move for acquittal, and (less likely) a sympathetic prosecutor may drop the case (DA’s are elected or appointed officials and must maintain decent public opinion, or their career is over, so they sometimes drop unpopular cases.) I have a friend in the Oregon Medical Marijuana Program who was arrested in Washington State (which also has medical cannabis laws) with less than an ounce. The DA dropped the case because he thought prosecuting medicinal marijuana patients (even though the defendant was not officially offered protection when outside Oregon) would make him look bad to the voting public (especially since WA voters are sympathetic medical marijuana use, and many would like to see an end to cannabis prohibition altogether).
What I have found from evaluating patients with CVS is that they seem to do extremely well with cannabis. Their episodes of vomiting are less frequent. When they experience nausea, vomiting it is less intense, and their appetites are greatly improved. Many times patients will medicate with cannabis on a regular basis to keep episodes from occurring (prophylactic treatment). Once a patient identifies the triggers for his /her vomiting, they can time when they medicate.
Cannabinoids (medically active ingredient in the cannabis plant) have incredible anti-emetic (vomiting) properties. The FDA has approved a drug called marinol, which is THC (tetrahydrocannibinol) in the pill form. THC is only one of over 70 cannabinoids that exert their effect. The plant has all of the additional cannabinoids that make it the ideal treatment for CVS. It is easily tolerated and does not cause any harm to the major organ systems. It is also an incredible appetite stimulant. Ironically, this is one of the side effects of using cannabis.
Cannabis is an incredible treatment for patients who suffer from this disorder. CVS is characterized by recurring episodes of severe nausea and vomiting which last from hours to days. Patients typically have periods of weeks to months without an episode and then can have episodes unexpectedly. It typically starts in children ages 3-7 and remits in early adulthood however; it can persist throughout a patient’s life. The medical community is unclear as to what the cause is but they seem to think to genetics on the maternal side. Many times patients also experience migraine headaches. This disorder can be very debilitating and lead to hospitalization if a patient becomes severely dehydrated because of vomiting or develops an imbalance in their electrolytes (i.e. Sodium) typical treatments are anti-emetics (Zofran/Compazine etc), IV fluids and rest.
It is now known that, although cannabis improves nausea and vomiting at low doses, higher doses actually
Worsen nausea and vomiting. This suggests that cannabinoid receptors in the body may be involved in CVS; however, their precise role remains to be determined.
When having a CVS episode I am physically unable to swallow Amytriptilene medication due to vomiting but luckily I am able to smoke cannabis to fight off nausea and uncontrollable vomiting fits and it allows me to eat despite days of vomiting/nausea. Is marijuana a possible cure for CVS/abdominal migraines? If so, it needs to be publicized so that those with CVS are not suffering and or dying. I would like your opinion on the medical benefits of marijuana and CVS because it seems to be saving my life and I would like to help others with the same problem.
Psychiatric co morbidities are common in CVS and in some instances act as triggers. One such trigger is anticipatory anxiety, which conditions patients for increasing intensity of future emetic episodes. One study found that 44% of adult CVS patients had a history of physical, emotional, or sexual abuse, and 70% had a prior anxiety, mood, or substance use disorder (cannabinoid use was not included). Panic attacks occurred in 66% of the patients during the prodrome and emetic phases. Patients with chronic low-intensity nausea and abdominal discomfort persisting between episodes of cyclical vomiting identified emotional stress or excitement as a trigger for interepisodic dyspeptic nausea. In another study, ~50% of adult patients reported that stress was a trigger for CVS and that 84% were suffering from anxiety and 78% from (mostly moderate) depression.
Psychiatric co morbidity is also common in children with CVS, high rates of anxiety disorders and depressive symptoms, and family history of psychiatric disorders. Psychodynamic explanations for the etiology of CVS have related anxiety and depression to disturbed parent-child relationships. However, it seems more plausible that psychological characteristics noted in children with CVS and their relationships with parents are effects of the disease rather than a cause. Regardless, children with CVS require psychological assessment and support because of the burden the disease has placed on them and their families. The irritation of dealing with an erratic, mysterious illness without many answers is exhausting for an entire family. It is an economic burden, since the primary caregiver must provide constant availability for care, precluding holding a job and diverting attention from other children. Absence from school is frequent and teachers should be involved, if possible, in the treatment plan.
A number of natural substances also have antiemetic properties. Among these is the very controversial substance marijuana or products made from it. Though marijuana, or cannabis, has been proven very effective in nausea control during chemotherapy or with the use of certain opioids, it is not always legally available. In other regions, patients can obtain the drug or its byproducts through doctor prescription.
Clinical studies have demonstrated its effectiveness in relieving nausea and vomiting
Fourteen of 15 patients had a reduction in nausea and vomiting on THC as compared to placebo. Delta-9-tetrahydrocannabinol was significantly more effective than placebo in reducing the number of vomiting and retching episodes, degree of nausea, duration of nausea, and volume of emesis (P less than 0.001). There was a 72% incidence of nausea and vomiting on placebo. When plasma THC concentrations measured less than 5.0 ng/mL, 5.0 to 10.0 ng/mL, and greater than 10.0 ng/mL, the incidences of nausea and vomiting were 44%, 21%, and 6%, respectively. Delta-9-tetrahydrocannabinol appears to have significant antiemetic properties when compared with placebo in patients receiving high-dose methotrexate.
Chang AE, Shiling DJ, Stillman RC, Goldberg NH, Seipp CA, Barofsky I, Simon RM, Rosenberg SA.
Annals of Internal Medicine 1979
Use medical marijuana as an adjunct to other treatments. You may find you can use less of the pharmaceuticals prescribed for CVS condition. Medical marijuana will have far less to no side effects.
Also, take L-carnitine and Coenzyme Q10.
Use cannabis suppositories (make your own, buy a kit at health food store or online), or vaporize cannabis.
Tincture (alcohol base) also very good-under the tongue. Edibles also good (if you can get them down).
Stick with low doses. Very important!
Best Strains: Indica dominant hybrid
AK47, AK48, Big Bang, Jack Herer, Blue Satellite, Cali-O, Cinderella 99, CIT, Kali Mist, Lifesaver, Lowryder, LSD, Master Kush, Skunk #1, Super Impact, Super Silver Haze, Wakeford, White Russian
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5. a b "North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition Consensus Statement on the Diagnosis and Management of Cyclic Vomiting Syndrome". Journal of Pediatric Gastroenterology and Nutrition 47: 379–393. 2008. http://www.cvsaonline.org/pdfs/adams1-1.pdf. Retrieved 21 March 2011.
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