Cyclic Vomiting Syndrome Awareness Day 2019

10 min readMar 5, 2019

This is the first CVS awareness day in 5 years where I’ve had a cycle in the past 12 months… I went from October 2014 to June 2018 with no cycles. And then suddenly last year, out of nowhere, BAM. I was in the ED 3 times in less than 48 hours, then admitted for three days. It had been so long since I had been sick, that I was essentially out of practice. I felt better the morning after my second ED visit, after sleeping an entire day, waking up and having a light dinner and a shower, and sleeping all night. So I tried eating a few bites of banana, a little bread. And BAM. Straight back into a cycle. I immediately thought “I should have known better” because aren’t I supposed to be an expert at this by now?

Cyclic vomiting spells are… horrific. I’ve tried to describe them several times, and each time I cycle I find new words for it, but the most important thing to understand is that it is truly horrific when the nausea descends upon you. I’ve spent a lot of time brushing off cycles as “no big deal” and wanting to focus on the fact that I feel better now. But once a year I like to pause and remember and remind everyone that CVS is truly awful.

The nausea isn’t like the normal nausea you think of with a stomach bug or food poisoning or anything else like that. It’s Nausea. An external force that descends upon me and takes over my body. It’s a heaviness that weighs me down, and that strangles me so I feel that I can’t breath. I spend a lot of time leaning over, trying to help gravity take the weight of Nausea off of my stomach, my chest, my throat. I can’t take deep breaths because every time I do Nausea twists my stomach. Every time I throw up, there is a brief, so brief, release of the heaviness, and then immediately it starts building again. Heavier and heavier and heavier. I can’t think straight. I can barely talk. All my energy is focused on not being suffocated by Nausea. I can’t sit still because if I stay in one position too long, Nausea sinks its claws in deeper. Maybe if I keep moving around it can’t take total possession of me. When I have to hold still for lab sticks or to start an IV… it takes all my energy to concentrate, and every second feels like a minute or longer. I find myself completely helpless, completely useless, completely dependent on someone to provide the sweet relief that can only come from knocking me out. And hope that when I wake, Nausea has left.

I’m a nurse. A critical care nurse. And I’m about to be a Family Nurse Practitioner. So I’ve spent quite a bit of time taking advantage of the extensive medical libraries available to me to look up the very limited research there is on the pathogenesis behind CVS. I know that two of the medications that bring me relief affect the neuropeptide CRF. CRF stimulates ACTH, which activates the HPA axis and the stress response. The HPA axis being dumb is to blame for a lot of stress-related illness. I know my daily amitriptyline inhibits the promotor activity of the CRF gene. I know that Dilaudid reduces CRF secretion from the hypothalamus. I know that Ativan has antiemetic properties (mostly commonly used for chemo-induced nausea) and also interrupts the brain-gut-axis. I know that there’s some thought that the vagus nerve is involved, and I also had vasovagal syncope and vasomotor rhinitis. I know that my white count spikes during every episode (up to 24.4 my last cycle, and back down to 8.4 two days later). I know that there are neurons and synapses in our gut, not just our brain, and neurotransmitters released during stress also affect our gut. I’m doing my entire capstone project for my masters degree on using tricyclic antidepressants to treat functional GI disorders, because finding the right dose of amitriptyline changed and saved my life.

I know that my mom can hear me say one word on the phone, or take one look at my face, and immediately know if she’s talking to me or if Nausea has taken ownership of my body and mind. I know that when I get Ativan and Dilaudid during an episode, I wake up and Nausea has left and I am me again, and it’s the only thing that works. I know that makes me sound like a drug addict to many of my professional peers. I know that I get doses of the drugs that would make me pause if I were the nurse giving them. I know that the last time I got Ativan and Dilaudid, I was given half the dose that I usually get of each, and that instead of being knocked out, I slowly felt Nausea lift and leave my body. And it didn’t come back. And I spent 3 days in the hospital with Ativan and Diladud available to me prn on my MAR and I didn’t ask for it once. Because I hate the stuff when I’m me. I once got a dose when Nausea had already left and I was me again (when I was still figuring out how and why the meds worked) and it took me away from myself again, made everything a fog, and I hated it. But when Nausea is sitting on top of me, weighing me down and strangling me, I know that Ativan and Dilaudid cut off the pathways that are short circuiting in my brain-gut-axis and give me back ownership of my own body and mind. I know that when I felt Nausea leave me with the dose of Dilaudid I last got, I felt myself come back into my body, I felt myself return. In the exact opposite way of how I felt that I lost myself when I once got a dose when Nausea wasn’t there, when I didn’t need it.

Having Cyclic Vomiting Syndrome has fundamentally changed my life.

It’s changed the type of nurse I am, how I approach my patients and how I approach the medical care I provide, and the empathy I have when I do it. It’s made me maybe too trusting, too empathetic with my patients, because I would rather believe their stories and take the chance to help alleviate their suffering than cruelly push away their reports of suffering because of the few people who take advantage of the system. I’ve been turned away from the ER and returned hours laters with critical labs. I know that it’s not just demoralizing but dangerous to not be believed by the people who are supposed to treat you.

It’s changed the way I approach life, because I have to deal with stress in a new way. It forced me to realize that my health and physical and mental control over my body are not guarantees but a gift, and every day I have them is a gift. I’ve had to embrace that I can’t know what the future is going to bring, so I have to live in what today has given me. I went to therapy, and I realized that I didn’t realize how much living with a chronic illness makes you need therapy. And I learned how to check in with my body and my emotions. I learned how to prioritize self-care because I saw how not taking care of myself takes me completely out of commission. If I don’t take care of myself, then I can’t help anyone else. I had been told about “putting the oxygen mask on yourself first” growing up and thought “but I can’t do that, I’m a helper!” and finally learned that if I don’t take care of myself, I will never be able to care for others.

My GI doctor and I aren’t really sure why I had an episode last June. I had no normal triggers. My CT showed colitis, so we think I must have gotten some sort of GI bug, and it triggered my CVS, which was really discouraging for the lingering fear I’ve had about whether or not I’ll be able to handle “normal” nausea in the future (say, like, during a pregnancy). But then in November, I went to Nashville, and I had an amazing trip, with some pretty big, unexpected exciting events. Triggering levels of excitement (oh yeah, I forgot to tell you about triggers… guess what? Having an intense surge of joy and excitement is a strong trigger for me… especially if it’s mixed with anxiety or there was anxiety beforehand. Other triggers include not getting enough sleep, not eating regularly, and making out with people. That last one definitely didn’t mess me up at all.).

Well, I had an intense prodrome come on- that’s when you hear Nausea knocking at the door, but it hasn’t descended yet. It maybe even walks into the room, but it isn’t sitting on you yet. It’s saying “hello, I’m here, can we talk?” and I’m saying “please go, and don’t come back” as calmly as I can. Well, I did that. I said goodnight to my friend and hello to my meds (I take Ativan and Phenergan when I’m at home. I don’t have and will never have or want a home prescription for Dilaudid) and slept. I switched to a liquid diet for a full day. I spent that whole day with Nausea trailing behind me… on the way to the airport, waiting to board, switching flights… Nausea was there. “Can I came too?” “No thanks,” I said, and eventually Nausea got lost somewhere over the midwest.

If you can believe it, my prodrome in November was the biggest comfort to me. After last June, I was so worried that maybe I was going to stop having any warning signs for my cycles, that they would just start springing up out of nowhere like this, with no chance for me to try to fend them off. Because from October 2014 to June 2018 I was cycle free, but I certainly wasn’t prodrome free. I’ve learned to recognize Nausea the moment it knocks on the door. Nausea doesn’t even get in the room most of the time anymore. But in June Nausea didn’t knock, it barged in and climbed on top of me with no warning. In November, I was reminded that I do have the tools and the knowledge to stay healthy.

I can never forget that all the tools and all the knowledge isn’t a guarantee that Nausea won’t sink it’s claws into me, even if I do everything right. I can never forget that I know what it’s like to lose ownership of my body and my mind, and I can’t fully predict or protect it from happening again. My health is a gift, and I am so thankful for every healthy day. I am thankful my GI doctors who believed me and who treat me. I’m thankful for my therapist who gave me space to acknowledge the trauma and suffering I had been through, and gave me invaluable tools to deal with the post-traumatic anxiety I had developed after spending 3 years relentlessly hit by Nausea with seemingly no warning time and again.

I find it striking that you can clearly tell that on the left, I am not myself, and on the right I am. And particularly that you can look back at photos of me during cycles over the past 8 years and see the same expression and weighted down look when Nausea has descended upon me. The contrast is so sharp, and these photos were taken hours apart.

Some really exciting news this year is that the Cyclic Vomiting Syndrome Association has funded and worked with medical professionals to develop adult treatment guidelines for CVS. CVS is typically thought of as a child’s disease, and if medical providers know it exists, they tend to assume it only presents in childhood. CVS already released pediatric treatment guidelines, which are so important and helpful. But I didn’t have CVS as a child. I developed it at age 22. And the treatment for adults and children, even the pathophysiological understanding of child vs adult onset is so different. I am so excited for these guidelines to be available, and so grateful to the CVSA for pushing to have them created. These guidelines can make such a difference, because most medical providers simply don’t even know CVS exists, so they definitely have no clue what the best way to treat it is. And access to the limited specialists who have intimate knowledge of CVS can be difficult. Even GI specialists are often unfamiliar with treatment options, especially for adult patients. So if you want to do something, other than share this post to simply spread awareness, because awareness truly is so important to help people get diagnosed and treated and controlled faster, consider donating a few dollars to the CVSA.

Read more:

Cyclic Vomiting Syndrome Awareness Day 2019

Written by Erin Wert