My name is Lisa. I am 34 years old, I am a wife, a mother of two beautiful daughters, and I suffer in silence with Cyclic Vomiting Syndrome.
It was March 2010, my family and I lived in Hawaii. My husband was serving in the United States Army and he was preparing for his first deployment to Iraq. Our whole life was about to change.
I began getting severe nausea every morning; it woke me out of my sleep. The nausea would go on for hours and then the vomiting would start. I would begin vomiting yellow bile and would get severe stomach pain. We would make countless trips to the local emergency room. They would spend hours trying to get an IV in me, then would began the same workup, zophran, fluids, and pain medication but no one could explain why it was happening. They would assume I was pregnant until they find out I had a hysterectomy in 2006, and then they would blame it on a stomach bug or food poisoning. They even removed my gallbladder, assuming it was that making me sick.
This continued throughout my husband’s yearlong deployment to Iraq, so I decided to leave Hawaii for two months and return to my parents house in Ohio, near Cleveland. They wanted me to try and see a doctor at the Cleveland Clinic because they are one of the best hospitals in the country, and since nobody else could figure it out why not give those doctors a shot. The Cleveland Clinic began a big regiment of test to try and rule everything out from Chron’s disease to autoimmune diseases such as lupus. Everything was coming back negative. I went for endoscopies, colonoscopies, gastric emptying studies, blood tests, MRI, biopsies of my esophagus, stomach, small intestine, etc. The list just goes on and on but throughout all this testing I continued to get sick, random episodes of nausea and vomiting to the point I required trips to the emergency room, but they didn’t know what was wrong with me. Once my husband returned from Iraq we decided to move back to Ohio and I started going back to the Cleveland clinic for treatment and I finally found doctors that were able to diagnose me.
In 2013 I was diagnosed with Cyclic Vomiting Syndrome. Cyclic vomiting syndrome is a disorder that causes recurrent episodes of nausea, vomiting, and tiredness (lethargy). The episodes of nausea, vomiting, and lethargy last anywhere from an hour to 10 days. An affected person may vomit several times per hour, potentially leading to a dangerous loss of fluids (dehydration). Additional symptoms can include unusually pale skin (pallor), abdominal pain, diarrhea, headache, fever, and an increased sensitivity to light (photophobia) or to sound (phonophobia). In most affected people, the signs and symptoms of each attack are quite similar, but when they are not experiencing an attack the person appears completely healthy. These attacks can be debilitating, making it difficult for an affected person to go to work or school. Episodes of nausea, vomiting, and lethargy can occur regularly or apparently at random, or can be triggered by a variety of factors. The most common triggers are emotional excitement and infections. Other triggers can include periods without eating (fasting), temperature extremes, lack of sleep, overexertion, allergies, ingesting certain foods or alcohol, migraines, and menstruation.
Once diagnosed, I felt relieved to finally have answers to why I was getting sick, but it was not the answer I thought it was going to be. There is no cure for Cyclic Vomiting Syndrome and it is chronic and very debilitating. Most people, including doctors and most of the health care system, have never heard of it because it is a rare chronic illness only believed to affect 2% of the worlds population. This can make getting proper treatment impossible. I finally found the right doctors at the Cleveland clinic and I am currently receiving proper treatment from a gastroenterologist and a neurologist because Cyclic Vomiting Syndrome is a Brain-Gut Disorder. Thankfully, I have been in remission for 5 months with my current medications. I pray that one day we will find a cure for Cyclic Vomiting Syndrome.