Living with the Devil in my stomach

Cyclic Vomiting Syndrome. That’s what the nurse said to me at Connecticut Children’s Medical Center (CCMC) and I will never forget it. I threw my bag of medications on the floor and said “So what? I’m just going to keep throwing up every month until I grow out of it?”

Cyclic Vomiting Syndrome or “CVS” is defined as “a disorder that causes sudden, repeated attacks called episodes of severe nausea or vomiting.” Episodes can last between a few hours or several days. Personally, my episodes usually last three days with treatment and 5-10 days without treatment. Most people with CVS find triggers, which help define why the episodes are happening. I found my episodes are a result of anxiety. Anytime I get too worked up or find myself having panic attacks, I will wake up out of a dead sleep and vomit until there is nothing left. Even if I have nothing left in my system, my body will still convulse with pain. Sometimes I get breaks, but most of the time I cannot eat, sleep or move. It causes debilitating pain in my abdomen.

Recently, I posted online regarding CVS awareness day, which was on March 6. I later found out that another student on campus, Andrew Pacheco, was also struggling with this condition at one point in time. He developed the syndrome at around 6 or 7 years old and he eventually grew out of the syndrome in his teens, around 14 or 15. However, he was never able to figure out his triggers. At such a young age, he would be brought to the emergency room immediately. In comparison to my episodes, I was 17 when I had my first one. I remember it perfectly because I was at soccer practice and threw up after we ran a ton of sprints. That night, it never stopped. I thought I was dehydrated or I had not consumed enough food, but little did I know there was a devil in my stomach.

Cyproheptadine was the medication that saved both of our lives. As soon as Andrew said that he was prescribed this medication, I was in awe of the similarities. It was absolutely heartwarming to have found someone who understood my pain the way no one else could. This condition is rare and extremely hard to diagnose. It took four hospital trips before I was finally diagnosed. This medication slows down the episodes but also acts as a preventative for future attacks. However, it can only do so much.

Going to the hospital is the only way to turn the episodes off. You could provide anti-nausea at home, but because it is taken by mouth it is more likely to come out when throwing up. Most of the time, it was just too late to take my anti-nausea. I would wake up out of a dead sleep with the urge to hurl immediately. By taking anti-nausea through IV it makes it extremely easier to stop nausea.

It did not always work. Sometimes I would go to the hospital too many days late and end up having to try multiple medications before one was able to stop me from throwing up.

I found it interesting when Andrew shared that brushing his teeth and smelling rubbing alcohol were two ways that decreased his nausea. The only thing that helps me during my episodes is hot showers. On days when I have episodes, I will take up to 20 showers a day. It is the only thing that provides just a little bit of relief in the times I need it.

Since being diagnosed with this disease, I have lost 27 pounds. I have also developed acid reflux, stomach migraines, IBS, food intolerances and I am getting tested soon for gastroparesis. Vomiting for so long and so violently has a huge effect on the body. When I was 18, I found that my back was really bothering me and it was hard for me to breathe in certain areas. Later, I found out that I had fractured my right scapula from throwing up so hard and for so long. It was a stress fracture and later gave me scoliosis because of the ways I needed to compensate so much.

The worst thing about this syndrome is that it is completely different for everyone. While Andrew was never able to find his triggers, everyone is different. Finding out what is making you sick is the worst part because you never know what to avoid. Certain foods can give you episodes, not enough sleep, anxiety or even digestive difficulties. If you look up CVS on the internet, it explains that the cause is unknown.

The syndrome is completely mental. Before an episode occurs, one can feel extremely tired and certain feelings in the stomach that can be described like no other. Andrew and I explained, “you just know.” It feels as though there is a rock in your stomach or a fullness and once the episode occurs, it is like you have no control of your body anymore. You are lethargic, pale and sometimes your eyes look “bugged out.” It is hard to walk or stay awake. I have fallen asleep in the shower, on the toilet seat and even in my puke bowl with my head bobbing. It is disgusting and it takes almost a full week to feel normal after it occurs.

In the few days after, we found that we are completely disgusted by food. Some may call us “picky-eaters” but nothing seems appetizing once it is over. Now, in between episodes, I’m scared to vomit all the time and I have to be extremely careful with how I take care of my body. Andrew described it as “you’re scared to push yourself to having an episode, because that feeling is constantly hanging over your head.” There is no other feeling in the world that compares to what it is like or words to explain how it feels.

I have joined support groups on Facebook and talking to people like Andrew who have been through it and grown out of it really helps. It gives me hope that one day I won’t have to worry about this anymore. I wish I could tell my past self in the hospital room, throwing my meds, that one day I would find a way to deal with it. I would find a way to deal with the anxiety. I would find a way to deal with the pain and exhaustion. Because I did and it made me strong because of it.

To all the people who fight this demon in their stomachs, I wish you the best because it is not easy. We need to continue to raise awareness of this syndrome, to understand that some people are fighting battles that you just know nothing about.