Cyclic Vomiting Syndrome… a rare disease characterized by recurrent episodes of nausea and vomiting with no known cause or cure.
I started getting sick around age four with these mysterious episodes of severe nausea and vomiting that would last for days to two weeks at a time. I couldn’t eat, drink or hold any meds down during the episodes. My mom said that I was non-responsive and during episodes she would rush me to the ER for IV meds and fluids.
Doctors were baffled as to what was wrong with me. I saw doctors of every kind including primary doctors, cardiologists, gynecologists, mental doctors, neurologists and more. I was put through all sorts of medical tests including CAT scans, MRI scans, Gastric Emptying tests, blood work, urine analysis, sleep studies, endoscopies, feeding tubes, stomach pumping and more. I was put on so many medications– from nausea meds to depression meds.
Nothing was showing up on any of the tests the doctors were doing, so eventually my mom told me I was doing it to myself and it was mental. So I was admitted twice to two different mental hospitals around the ages of nine and 12. I was stuck in a padded blue room during one of my vomiting episodes and told that I was doing it to myself and until I stopped making myself puke, I was going to stay in that padded blue room as punishment. I ended up vomiting all over myself and also going #2 on myself before being let out of the room some five hours later.
As time went on I kept having the severe nausea and vomiting episodes up to 4 times a month for two-seven days each episode, and I continued to go to doctors to try to figure out what was wrong with me but no one knew. I had my gallbladder taken out at one point for no reason other then the doctor “thought” that was what was making me so sick. I missed up to 47 days a year at school in those years and nearly got my mother in trouble with the school board. I ended up having to graduate high school a year later than I was supposed to because of being so sick and getting so behind.
At age 23, I was watching a show called The Doctors I found out about a very rare condition called Cyclic Vomiting Syndrome, which is related to Mitochondrial Disease and I took the info to a GI doctor who didn’t believe in CVS so I found another GI doctor in that same office and finally got diagnosed after 19 years of hell and torture. I have lost five out of five jobs trying to work as a 25 year old young adult, so I applied for disability and I am on year four of fighting for it as well as Medicaid. It has been a long hard road and not one I’d wish on anyone, but I am so thankful to have answers now and although there’s no cure, I have some hope for a future with meds.