My name is Katelynn Leonardelli. I am 20 years old, and I have been dealing with CVS for 15 years of my life. I am currently being treated by Dr. Lee in Milwaukee and rarely have episodes, but I have had a long journey to get to this point. I really would like to share my story and give others hope that you can find treatment and get back to living a normal life without episodes.
It started when I was five years old and in kindergarten, I would have random days when I would get up for school early in the morning and throw up until around 1030. At first my family assumed it was just a persistent stomach flu but after these symptoms were on going throughout the years, they knew it wasn’t. My family and even my doctors were puzzled by these strange symptoms. During my episodes, I couldn’t keep anything down and would throw up multiple times until I felt well enough to eventually start consuming water. These symptoms lasted throughout grade school and into high school, some years, even months having multiple episodes and some having none. I went to multiple doctors, have had two scope procedures and many other tests, but everything came up negative. For awhile, people thought it was my anxiety or just thought I was faking it, which got pretty frustrating.
Things started to go downhill during the beginning of my sophomore year of high school. I woke up and knew right away that I was going to have an episode and as always my mom allowed me to stay home from school. The next day the same thing, I woke up to an episode, I was used to this because most of the times when I have episodes they happen two or three days consecutively. But as the week went on so did the episodes. I got to the point where I missed a full week of school and the episodes weren’t stopping. My family set up appointments with my counselor and teachers to inform them what was going on and what the next action was to take. For the next thirty two days my school day went as followed: I would wake up overflowing with anxiety (knowing I was going to have an episode) puke multiple times until my car pool came to pick me up. I would carry a plastic bag with me and usually puke a few times in the car (one time I forgot to bring a bag and had to puke on the side of the car). When I arrived at school I checked in with my homeroom teacher and went straight to the second floor guidance room. There they had a small supply closet that they let my use, it was about 10ft long and 7ft wide. They gave me a waste basket and let me sit there until I was done with my episode and could go to school around 10:30am. I was horrible, I remember I tried to puke quietly because I didn’t want anyone to hear me let alone open the door and see me puking. I remember when I was in the car one day one of my friends mom made a comment like, ‘I think it might be your anxiety. Why don’t you just try to take deep breaths?’ Even my homeroom teacher questioned me once thinking that I was faking it to try to get out of school. One day I remember sitting on the floor in my kitchen feeling so hopeless, thinking that I would have to plan my job, my school, my life around my episodes.
My mom was trying to comfort me when all of a sudden she remembered something that my doctor mentioned years ago, Cyclic Vomiting Syndrome, but since there was no way to prove it and I was an atypical case they just pushed the idea to the side. We immediately went on the computer and searched the symptoms, and I fit them like a glove. That was the first glimmer of hope that I had in awhile. We called my doctor right away and he told us about on of the leading CVS doctors who happens to be right in my own town! I was ecstatic! I counted down the days until my appointment. Finally the day came and Dr. Lee started me on the drug called “amytriptylne”, which happens to be the same drug that my mom takes for her migraines, and who would have guessed, but it worked!
I have my life back. I can finally wake up in the morning without worrying about having an episode and missing out on anything. I am writing this not to make people feel bad for what I went through but to give them hope that their life can turn around and things can get better.