I am CVS by Bob Brophy

I am CVS

By Bob Brophy

#CyclicVomitingSyndrome

CVS Supporting Organizations

• Cyclic Vomiting Syndrome Association
  • 1050 W Bluemound Road, Suite 106
  • Milwaukee, WI 53226 USA
  • Phone: (414) 342-7880
  • Email: cvsa@cvsaonline.org
  • Website: http://www.cvsaonline.org
• Genetic and Rare Diseases (GARD) Information Center
  • PO Box 8126
  • Gaithersburg, MD 20898-8126
  • Phone: (301) 251-4925
  • Toll-free: (888) 205-2311
  • Website: http://rarediseases.info.nih.gov/GARD/
• International Foundation for Functional Gastrointestinal Disorders
  • 700 W. Virginia St., 201
  • Milwaukee, WI 53217 USA
  • Phone: (414) 964-1799
  • Toll-free: (888) 964-2001
  • Email: iffgd@iffgd.org
  • Website: http://www.iffgd.org
• National Headache Foundation
  • 820 N. Orleans
  • Suite 411
  • Chicago, IL 60610- USA
  • Phone: (312) 274-2650
  • Toll-free: (888) 643-5552
  • Email: info@headaches.org
  • Website: http://www.headaches.org
• NIH/National Institute of Diabetes, Digestive & Kidney Diseases
• Office of Communications & Public Liaison
• Bldg 31, Rm 9A06
• Bethesda, MD 20892-2560
• Phone: (301) 496-3583
• Email: NDDIC@info.niddk.nih.gov
• Website: http://www2.niddk.nih.gov/
• Cyclical Vomiting Syndrome Association - UK
  • 77 Wilbury Hills Road
    Letchworth
    Herts
    SG6 4LD
  • Phone: 0151 342 1660
  • Email: info@cvsa.org.uk
  • Website: http://www.cvsa.org.uk/

Affected Populations

Cyclic vomiting syndrome affects females somewhat more often than males (55:45). It most commonly occurs in children between the ages of three and seven, although it can begin at any age, from early infancy through to old age. A diagnosis is often delayed for many years. Although cyclic vomiting syndrome may be seen more often in children, it is being recognized with greater frequency in adults. The incidence of cyclic vomiting syndrome is unknown, although it is not rare. Two studies in Scotland and Australia have suggested that as many as 2% of all school-aged children suffer from cyclic vomiting syndrome. However, researchers believe the disorder is underdiagnosed, making it difficult to estimate its true frequency in the general population. Cyclic vomiting syndrome was first described in the medical literature in 1806 in French, and 1882 in English.

Causes Of CVS

Causes of CVS #CyclicVomitingSyndrome

The exact cause of cyclic vomiting syndrome is unknown. Although nausea and vomiting are the main features of cyclic vomiting syndrome, researchers now believe that the primary organ affected is the brain and that the symptoms of the disorder develop due to abnormalities in the normal interaction between the brain and the gut (brain-gut disorder).

Although the specific cause of cyclic vomiting syndrome is unknown, likely there are several causes. Researchers have noted a relationship between cyclic vomiting syndrome and migraines, and some theorize that cyclic vomiting syndrome may be a migraine variant. Many children with cyclic vomiting syndrome have a family history of migraines or develop migraines when they get older. Cyclic vomiting syndrome may be referred to as a type of “abdominal migraine” and the terms are sometimes used interchangeably. An abdominal migraine is a migraine variant in which there are recurrent episodes of abdominal pain. Vomiting may or may not accompany an abdominal migraine.

Additional factors that may be associated with the development of cyclic vomiting syndrome include dysfunction of the autonomic nervous system. The autonomic nervous system is the portion of the nervous system that controls or regulates certain involuntary body functions including heart rate, blood pressure, sweating, the production and release of certain hormones, and bowel and bladder control. Autonomic disturbances are common during episodes, including fever, tachycardia, high blood pressure and urinary retention (blockage). Vomiting itself is an autonomic disturbance. Autonomic or “functional” disturbances can also occur between episodes, such as reflex sympathetic dystrophy (a chronic pain condition), syncope (fainting), and disorders of gastrointestinal motility. The latter are particular common, and can include gastroesophageal reflux (GERD, explained below), delayed gastric emptying (resulting in bloating during meals), irritable bowel and/or constipation.

Additional conditions sometimes seen in individuals with cyclic vomiting syndrome include depression, anxiety, attention deficit hyperactivity disorder (ADHD), seizures, autistic spectrum disorders and learning disabilities.

QR Codes for our Blogs

QR Codes for our CVS Blogs on blogger #CyclicVomitingSyndrome

Just scan with your scanner and you'll be taken to the blogs in question.

QR Codes for our CVS Network

QR codes for our Cyclic Vomiting Syndrome Networks. Scan the code with your scanner to be taken straight to the sites in question

CVS Facebook QR Codes

Facebook QR Codes just scan and you'll be taken to the facebook pages and Group #CyclicVomitingSyndrome

Updated CVS App

New updated version of the CVS app. Just follow the link below and save to your homepage or desktop. if you have the old version it should work automatically if it doesn't just replace the old link with this new one. It works on all types of mobile phones, tablets and computers. I hope you like it.
Any questions please message me or comment on this post.

Cyclic Vomiting Syndrome App 

About our other CVS social media sites

My name is Angie and I'm a Cyclic Vomiting Syndrome (CVS) sufferer. I've had the rare illness CVS since I was 14 years old I was diagnosed in 2008 at the age of 31. I was sitting at home one day thinking what I can do to help people with CVS even when I'm stuck at home unwell. The answer came via my computer as it's sometimes the only way for me to reach the outside world. 

I started a Facebook group in 2012 called ‘Cyclic Vomiting Syndrome (CVS) Support Group’ with the intention of using it for supporting people with CVS and adding CVS information to raise awareness. The group really took off and soon we had Thousands of members from all over the world. The members love the group and are so happy to find people who can relate to what they or their loved one has. We talk about all kinds of subjects like symptoms, medication, feelings, medical staff, hospital visits, raising awareness and lots more. We also offer support to each other when times are rough which has proved valuable to many members. I have made some amazing friends from within the group which have become more like family to me. We share stories of sadness and joy and we help one and other daily it’s amazing. I also started a Facebook sister page in 2012 called ‘Cyclic Vomiting Syndrome’ which has over 2000 likes from people worldwide. 

Approach Considerations

Because no biochemical markers for cyclic vomiting syndrome (CVS) have been identified, the guidelines formulated by the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) suggest that physicians must initially look for alarming symptoms and then tailor the workup accordingly. Suspicious symptoms include the following:

• Bilious vomiting, abdominal tenderness, or severe abdominal pain
• Attacks precipitated by intercurrent illness, fasting, or a high-protein meal
• Abnormal neurologic examination findings, such as severe alteration of mental status, abnormal eye movements, papilledema, motor asymmetry, or gait abnormality (ataxia)
• Progressively worsening episodes or conversion to a continuous or chronic pattern

Depending on the presenting symptoms and signs other than vomiting, different diagnostic approaches are recommended. In addition, certain subgroups of patients are thought to be at high risk for metabolic disorders. If the following conditions are met, early referral to a metabolic specialist or neurologist should be considered:

A video for all my Cyclic Vomiting Syndrome Friends

A video I made for my CVS friends to say thank you for their support. I got a bit emotional at one point in the video but who can blame me they mean so much to me.

❤❤❤❤

Family Support

Families are encouraged to contact the Cyclic Vomiting Syndrome Association, which is an international voluntary organization that serves the needs of CVS patients in the United States, Canada & UK, for ongoing support and information. Various resources, including local support groups and scientific and family conferences, are available to help families understand this disorder and to provide them with coping mechanisms for battling this often disabling illness.

Cyclical Vomiting Syndrome Association - USA & Canada

Cyclical Vomiting Syndrome Association - UK

Supportive Pharmacological Therapy

When both prophylactic and abortive therapy fails, supportive care becomes an essential aspect of treatment during acute episodes.

IV glucose-containing fluids may diminish the severity of episodes by as much as 42%. Glucose may serve as the active ingredient by truncating the ketosis. However, the abdominal pain may be severe enough to necessitate the use of nonsteroidal anti-inflammatory drugs (NSAIDs) or narcotics once a surgical abdomen has been excluded. Caution must be exercised when narcotics are administered for moderate to severe pain and patients must be monitored to ensure that they do not become dependent on or addicted to these agents.

Chronic opiate use can result in hyperalgesia, for which various mechanisms have been proposed. Sustained morphine administration increased substance P (SP) and NK-1 receptor expression in the spinal dorsal. Morphine-induced hyperalgesia was reversed by spinal administration of NK-1 receptor antagonists in rats and mice and was observed in wild-type NK-1 receptor positive mice but not in NK-1 receptor knockout (KO) mice.

Prophylactic and Abortive Pharmacological Therapy

Pharmacological therapy is used to prevent episodes of vomiting or to decrease their frequency and also to abort or attenuate episodes once they begin. Preventive medications are normally used in patients with more than a single episode of CVS per month. The mainstays of prophylactic therapy include the following:

• Cyproheptadine
• Amitriptyline
• Anticonvulsants such as topiramate, zonisamide, and levetiracetam
• Propranolol
• Phenobarbital
• Erythromycin

Medications used for aborting episodes include the following:

• Ondansetron
• Promethazine
• Prochlorperazine
• Triptans

Avoidance of Triggers

In some cases of CVS, avoiding identified dietary triggers such as chocolate, cheese, and monosodium glutamate (MSG) can prevent episodes without the use of medication.If psychological stressors trigger episodes, stress management techniques or benzodiazepine anxiolytics (eg, lorazepam or diazepam) may help to abort attacks in the early stages. However, avoiding common triggers such as car rides and infection may be impractical or impossible.

Sleep deprivation is also cited as a common trigger for patients with CVS and proper sleep hygiene should also be emphasized. Interestingly, a 70% decrease in frequency of episodes (placebo effect) on consultation and lifestyle changes without drug therapy has been noted.

WHAT IS CVS?

CVS has been recognised for over 100 years, but we still know very little about the cause of the problem and there is still no recognised treatment.

CVS is characterised by recurrent, prolonged attacks of severe vomiting, nausea pain and lethargy, with no apparent cause. Vomiting persists at frequent intervals, 5-6 times per hour at the peak, for periods ranging from hours to days or even weeks. 

- Severe and constant, unremitting nausea
- Onset of vomiting is most commonly during the night or early morning
- Repeated vomiting, peaking at up to 5-6 times per hour maybe more
- Retching, often violently
- Pallor, often extreme paleness of the skin
- Headache/ Migraine
- Severe abdominal pain
- Low grade fever
- Vomiting episodes may repeat with regular spacing of days or weeks
- Lethargy or unresponsiveness
- Dizziness
- Perplexing " or unusual behaviours
- Anxiety

For more information, please see the websites of the UK & US Cyclical Vomiting Syndrome Association (CVSA) 

www.cvsa.org.uk or www.cvsaonline.org

Cyclic Vomiting Syndrome (CVS) Awareness Story - Video

This is my new CVS Video

Please watch share and like