The Chronic Pain of CVS



Sculpture by O. Zadkine, Paris - photo by Green Eye


  CVS = Cyclic vomiting syndrome


Cyclic vomiting syndrome (US English) or cyclical vomiting syndrome (UK English) (CVS) is a condition whose symptoms are recurring attacks of intense nausea, vomiting and sometimes abdominal pain and/or headaches or migraines. Cyclic vomiting usually develops during childhood at ages 3–7; although it often remits during adolescence, it can persist into adult life. (Wikipedia definition, link below post)
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The young woman awakes, hoping for ‘normal’ but fearing the worst. Will there be more gut-wrenching pain that wraps around from the stomach to the back, and the unbidden nausea that is a chronic side effect? On a good day, she will be able to get up early or mid-morning and eat breakfast. If that poses no problem, then she may be able to do some household chores, or even work when that occurs. When it’s a bad day, everything squeals to a halt until the pain is attended to or runs its course for one to several days.


For relief and the ability to do the basic things, she has medications to help quell the effects of the CVS syndrome. There are pain medications prescribed including nose sprays or pills that melt in the mouth, hydration to replace the lost fluid, and nausea pills. Sometimes a combination of these will work and sometimes they won’t. As a last resort, the doctor’s office will administer a shot to stop the spasms of the stomach. Sleeping for several hours is usually needed to recover from an intense bout, or incidences that last longer than three days.

A mild attack of CVS will last one day, but the length of time can vary depending on other factors that come into play. Hormone fluctuation, stress, a lowered immune system due to a cold, lack of sleep/insomnia -- any of these can trigger the start of the pain spasms in the stomach. One doctor said we all get butterflies in our stomach, but a person with CVS gets “tigers” in their stomach.

There are websites for this rare condition, but no cure that this young woman has been able to find. Managing the disease may be an ongoing factor in her life, even though some believe that the frequency and intensity will reduce, if not disappear at certain ages, e.g., after puberty, in early adulthood, etc. That hasn’t happened yet. Various tests can be scheduled to check the condition of the stomach. Other tests which must be done in a hospital, such as scoping of the upper or lower digestive system, are sometimes required after other causes such as ulcers are ruled out.

All the basic mundane things that we have to do everyday become a real chore when the body fights itself, or causes intense pain. When that pain is internal and not visible like a wound, others can doubt its validity, forcing the person who is ill to be constantly on the defense.

CVS affects males and females, with more incidences occurring in the female gender. That may be due to the difficulty in diagnosing this rare condition that has symptoms common to several other diseases. The search will be ongoing to find better solutions, but finding support is difficult when costs are being cut in many health services. Researching several different mobile nursing services revealed that they aren’t prepared to take on-call requests for administering injections.
 
There are many voices in the cities that we don’t hear. This post is an attempt to promote understanding of this debilitating disease, by describing some of the challenges of the person coping with it. 

Sites to check for more detailed information:

Cyclic Vomiting Syndrome Association

Definition of the disease

National Digestive Diseases Information Clearinghouse (NDDIC) (US)

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Reference Post: The Parent, the Child and the Disability (a parent's viewpoint)


NOTE: The name of the person referred to in this post has been withheld for privacy.

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Mural in Vancouver, BC - photo by DGH

The Parent, the Child, and the Disability

Is motherhood agony? I don’t mean the obvious -- birthing the child. I’m referring to the long time commitment to that child in the face of debilitating illness. It seems that the umbilical cord between the mother and child has a lot of significance when your child is hurting. Not all mothers may feel the empathy, and absorb the pain, but many do. Fathers are not exempt from the pain either, if father-child bonding exists.
An illness which is interior is especially difficult as no one seems to believe that it exists. It must be something that the ill person is doing, which is causing or contributing to the problem. One such illness is called CVS, cyclic vomiting syndrome, which is not an eating disorder, but a rare condition affecting a segment of the young population. The ages of the victims of this illness can vary from young children, or teenagers, to young adults. There are some cases of this condition lasting into middle age with less severity.

CVS is characterized by episodes or cycles of severe nausea and vomiting that last for hours, or days, which can alternate with intervals with no symptoms. Originally thought to be a paediatric disease, studies now show that CVS occurs in all age groups. There is a description of cyclic vomiting in Wikipedia, which also shows the number of physicians who have published articles on this little-known disease.

The effects of this illness are especially difficult for the person suffering the unexplained, and unpredictable manner of the onset of these bouts. Vomiting can occur for a few days, or continue for two weeks at a time. Nothing will stay on the stomach, and even liquids don’t stay down. Our family doctor explained it like this, ‘most of us feel butterflies in our stomachs, but the victims of this illness feel tigers gnawing at their insides’.

Our daughter has had this illness since she was sixteen, and still continues to suffer in her twenties, albeit on a lesser basis. The bouts have become less frequent and further apart, but the intensity is only lessened by a pain patch or injections of pain relievers. The pain patch she must constantly wear, but the injections are needed only when the pain becomes unbearable. The condition promotes feelings of depression, often exacerbated by the medications. The person suffering sees no end in sight, wondering what kind of life lies before them. A mental lethargy can occur, as one of the side effects of the pain-relieving drugs.

Along the way, we have taken our daughter to specialists in digestive disorders, to naturopaths, to herbalists, and to specialists in neurology, and psychiatry. She’s been seen by the top doctors in our area in western Canada. She’s had a few periods of hospitalization as a minor under the care of a paediatrician, but eventually all specialists advise us there’s nothing they can do. As parents, my husband and I were at our wits end, when I asked our doctor if he would take on the responsibility to support us in searching for relief to her pain. Our family doctor agreed to monitor the condition and to help her when she needs medication or shots. He has been an enormous help, and has counselled us as parents when we were stressed to the hilt. The other doctors in the clinic in which he works also back him up if he’s away. They have given our daughter some hope, although her objective is to try and get off the medication, if and when the pain and the bouts lessen.

We continue to look for alternatives, but they are few and far between. The illness has interrupted my daughter’s life, and for a while, she didn’t want to continue. She battles all the time to put weight on in between bouts of being sick. She can be well for several weeks at a time, then some unknown trigger brings her down for a few days, negating all the progress. It used to be two weeks out of every month, so the intensity has lessened. She is currently on disability, as she can’t work full-time, but is trying to work with a government agency to find companies that will employ disabled persons.

A parent’s life if filled with trepidation and worry about their child, and any disability puts a whole new light on raising a child. Love and support will help ease that person into society; even so, we cannot always be there when a disabled person becomes an adult.

In summary, a mother’s pain or a father’s pain is tied to the child’s ability to survive the roles that life assigns to each one of us. Challenges we can handle, but when your child is sick, it takes patience without understanding. Right now, there are no answers, only hope.

February 2009

Revised May 2009