Cyclic Vomiting Syndrome Awareness Day – 2021

March 5th is Cyclic Vomiting Syndrome Awareness Day, which is a rare chronic illness that I have. It leaves those of us who suffer from it throwing up continually, almost like clockwork, for days on end. Many of the people who suffer from it are children, but there are many of us, too, that in our adult life have been struck with serious bouts of episodes, with no previous experiences.

It’s something that I have had my entire life but didn’t know. It is, in fact, hereditary and there are others in my family who suffer from it. It was only by the grace of God that I ended up in an emergency room where an ER doctor whose son happened to have it asked if we had ever heard of it. We hadn’t and after a quick google search and look at the symptoms, we knew that it was exactly what I had.

Despite all the symptoms showing that this is what it was, I felt like I had to convince this to the doctors that I would see. I had one doctor who told me that it was only in children, and so that couldn’t be what it was. Then there was another doctor who told me that it was psychological and told me I needed to go to a psychologist, he wouldn’t see me again until I had. I did go and the psychologist told me I was one of the most self aware people he had met and that my vomiting had nothing to do with my psyche. I didn’t go back to the doctor that had told me to go him. Instead, Jason, my husband, took me to the Mayo Clinic where I was properly tested, observed, and then diagnosed.

Many of those who suffer the illness aren’t as lucky as me. Many have been put through unnecessary surgeries, extreme diet changes, and are diagnosed with like illnesses that aren’t treated for what is needed for the episodes to stop. Because treatment can vary depending on the patient, for years after I was diagnosed, I still suffered from episodes. It was again, by the grace of God, that I ended up in my hometown hospital of Excelsior Springs.

After being admitted to a hospital room and continually throwing up, passing out, and then being woken only to throw up again, I had the emergency room doctor on duty ask me if I would be willing to try a medication that he thought could help. I told him that I would try anything just to get it to stop. He said that he had a special interest in migraines and believed that I might be experiencing them, not in my head, but in my stomach. He had been successfully treating patients suffering with migraines on the medicine with great results. He said he would have the nurses give it to me that night, as it makes you drowsy.

My episodes each time on average lasted from 9-11 days at a time. I was on day four of the episode when I took the nortriptyline medication in the hospital that night. By the next morning, on day five, I was well enough to get up, take a shower, pack, and be waiting in the hospital chair for my husband to come and check me out. That’s how fast the medicine worked for me. It also immediately worked for my dad, who was also suffering continuous bouts of episodes.

We are grateful that we happened upon those in the medical world who had some kind of connection or experience with the rare disease that led to a proper diagnosis and finally treatment that has given us our lives back. Both Dad and I had lost considerable amounts of body weight and at one point we were both dangerously skinny. I was getting episodes every month and a half, so by the time I was getting well enough to gain weight, I was getting hit again.

On top of the deterioration of my physical health, my mental health was also suffering. When you’re getting sick continually for days and weeks on end, it can take you to a dark place. Each time that I got it I felt like I was dying. And sometimes, I even wished it, just so I could stop feeling that way.

Again, being fortunate, I was grateful to have worked for people who showed me compassion and understanding through my struggle with an unknown and unpredictable illness. I was able to keep my job, where many who suffer lose their livelihoods. The monumental amount of debt that we were going in from insurmountable medical costs kept us living from paycheck to paycheck in those dark days. And that’s with insurance. This is why I feel so passionate about health care being a right of life and not a privilege. We cannot live in a country that is great if we willingly allow our people to suffer.

Despite not having any full blown episodes since being on the new medicine, there are still times that I do not feel well. There have been a couple of times that I have woke in the night, feeling like the medicine has turned off, and gotten sick or come close. But not repeatedly like before, and for that, I’m so grateful.

I’ve done my best to try and use my own journey to help others that are suffering. Every time I put up a Facebook post regarding it I will have someone new contact me asking if I can help their friend or relative that is suffering from an unknown and similar sounding illness. All we have is each other when it comes to a rare disease.

If you know someone who is suffering or you yourself might be that person, there’s a Cyclic Vomiting Association and also a ton of online groups that people who are suffering or those who are caretaking for those suffering can go and get immediate support. I love my CVS community and know that together, we can help others who are going through the experience.

Click here for a list of blogs that I have written prior on the subject to try and help. Feel free to reach out to me if you know of someone who may have questions or is experiencing this difficult disease. Thanks for reading about something that has done a lot to shape me.

For more articles written on this subject, click here!

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