I made the mistake of googling “cyclic vomiting syndrome and Dilaudid” because that’s what broke my last cycle and I was looking for any current research/rationale of why, and came across a forum post with several nurses rolling their eyes at this disease and request. I found their attitudes very hurtful, and ended up drafting a very long reply. It’s rare that I talk frankly about what it’s like living with CVS, as I like to brush it off as not a big deal, not dwell on it, and not remember the public cycles I’ve had as mortifying memories but as laughable series of unfortunate events, so to speak (“lol, RTT I threw up in a plant in the hotel lobby at leakycon lol!”). But I felt sharing my honest, real experiences is important.
I feel I can offer a very unique perspective here as I have been a critical care nurse for 4 years, and had my very first CVS episode the very first Thanksgiving week I worked post graduation at my new job, maybe two weeks off orientation after an intense and demanding residency program…. Had to call out sick for my very first holiday, and spent 4 days in the med/surg wing unable to keep anything on my stomach. I didn’t find out for another two years that what I was suffering from was CVS.
I completely understand the temptation to start to question a patient when they come in with very specific requests, but since I now suffer from a confusing, rare chronic illness myself, I also understand very well the patient’s side of this.
CVS is a brain-gut disorder, so there is a huge psych component, but not necessarily in the way you think. My episodes are primarily triggered by anticipatory excitement. So, for example, before or after a date or a big vacation, etc. Also, things like altered eating and sleeping patterns can really lower my threshold for an episode (night shift is a bitch right now). Stress is a very common trigger, but myself and most sufferers find that it’s positive stressors in our lives that are the most triggering. I’ve also found that the mix of excitement and anxiety together is my strongest trigger (my best and yet worst example of this is imagining the type of emotions that go into preparing for a wedding. Very very happy but also very very stressful. I’m already planning to spend my eventual one day honeymoon if I ever get married in the hospital throwing up, because it’s better to be prepared for it now.) I don’t go on any vacation without looking up the closest hospital under my insurance anymore, because the stress and excitement of traveling? Yeah, intense potential triggers. I can’t travel without a very strict regimen with my eating and sleeping schedule, because those are the factors I can control. And I have to find the balance between feeling prepared enough for the trip that it’s not stressful but also not dwelling enough on my feeling of excitement and anticipation that it may become too triggering. Not exactly an easy thing to do. I challenge you to think about every time in the next week or two that you have feelings of anticipated excitement and imagine if these emotions would trigger potential days-long vomiting spells. If you’re not a strong-feeling personality person, imagine that you are. That is my reality.)
I only have a couple of true episodes a year, and I actually didn’t have my second episode until almost two years after my first, but then had a week long episode and another short episode within a month of each other. When I do have episodes, I am a completely different person. They knock me down to where I can barely function. The best way to describe the nausea is suffocating. My breathing patterns become altered because if I slow my breathing down, I can feel the nausea rising in my chest to the point that it feels I can’t breathe. Whenever someone comes in to try to talk to me, I inevitably end up dry heaving or throwing up what little bile I have in my stomach. It’s frothy and acidic and burns like hell. I literally will have not had anything to eat or drink for hours or days, and I’m still throwing up 100ml or more of bile regularly. When I’m awake I am restless and antsy, always searching for some position that may provide relief from my nausea (it often ends up hunched over or curled in a ball with my head at the feet of the bed. I look a hot mess.) I have hot and cold flashes, meaning I’m constantly throwing my covers on and off. Even the thought of pulling out my phone to text my parents or friends an update is completely overwhelming and exhausting. If i’m not awake and restless from the nausea, I am thankfully zonked by medication and dead to the world. Every time I hope that when I wake I’ll find the nausea has finally resolved. I am not always lucky.
When cycling, there is a frequent desire from sufferers to drink water or eat even though they know it will trigger emesis, because at least that way we are throwing up something substantial, there actually IS something to throw up, because that brief moment when you’re throwing up is the only relief we get from the nausea. I often began dry heaving and realize that I have nothing substantial to throw up, but I can’t stop from retching. I recognize that to an outsider, this may seem like I’m trying to force myself to vomit. Please understand that we act this way because of our overwhelming nausea.
Episodes follow very predictable paths…. everyone’s cycle patterns are slightly different, but typically follow a consistent pattern for them. For me- I usually have a day or more where food is just…. meh. I’m not interested in it, and the thought of eating just turns me off. When I do try to eat, I usually find it burdensome and exhausting. I’ll take just a few bites of food and I want to go lie down for a long nap. It’s quite frustrating, because I also will feel quite hungry, but any time I think about actually eating, everything sounds unappetizing. In this period I have sometimes been able to take my prescribed prn meds and sleep off an episode. Other times, even with taking my prescribed meds, I can’t prevent the inevitable progression to, what I now call “code vomit.” I eventually get to a point where I just can’t prevent throwing up anymore, and the key to prevention of my episodes is preventing throwing up. I haven’t once since 2010 been able to throw up and stop without IV intervention. Hence code vomit means, prep the calvary, because it’s time to visit the ED, and I’m about to become completely out of commission. The first time I throw up, I get a brief reprieve from my nausea…. but usually within 45 minutes or so the nausea has come back, and within an hour and a half, I usually vomit again. At this point, the nausea is unrelenting, and I will continue to dry heave or vomit about every 20 minutes or so. This continues until I have some sort of outside intervention. I hold on long enough to reach my parents and whatever contact is going to be able to take me to the emergency room (sometimes that contact ends up being a taxi in the middle of the night because everyone is asleep or out of town). I try to keep functioning enough to walk into the ED and sign myself in. By the time I get to the triage room, I’m slowly fading, trying as best I can to answer questions when every time I open my mouth I’m gagging from the nausea. My answers are short and clipped and as to the point as possible. Usually soon into my true cycle, within an hour- my hands start to lock up and my arms and sometimes legs begin to go numb- likely caused by a mix of my rapidly dropping potassium levels and my altered breathing pattern.
The nausea in CVS is very hard to treat, since it is not your stereotypical pathophysiology for nausea. It’s nausea stemming from the enteric nervous system, not from some other more identifiable cause like food poisoning or a stomach bug. This is why treatment for CVS nausea is often things that seem bizarre or unusual. Typically my strongest antiemetic is ativan. Though typically known as an antianxiety medication, ativan does have antiemetic properties, and is commonly used as an antiemetic in chemo patients. It wasn’t until I got a home prescription for ativan that I was ever able to abort an episode before I started vomiting at home. Ativan, together with phenergan, have, in the past, been able to end my episodes during my prodrome phase or vomiting phase. Zofran, unfortunately, has not once touched the nausea I suffer from during CVS, and it’s gotten to the point that I cannot tolerate taking it, particularly the sublingual form, because the aftertaste has become a sort of pavlov trigger for me since I used to always start with zofran, and would end up vomiting shortly after.
The key to treatment and ultimate abortion of the nausea in CVS is deep sleep. Because the nausea is linked with the enteric nervous system, basically the treatment is a reboot of the system. I have to be knocked out. This is also why phenergan and ativan are so helpful in aborting my episodes, as they both help induce deep sleep. This is also why my episodes have turned into days-long torturous affairs when doctors have chosen to be cautious or conservative with my treatment and do things like alternate my ativan and phenergan instead of giving them together. I understand this request sounds specific and suspect, but after you’ve spent four days in a semi-conscious state getting alternating drugs and never quite being fully knocked out or fully recovered, vs getting something together and being able to be back up and running and living my life again within two days…. you develop these sort of requests. It becomes not only expensive, but also emotionally crushing when you lose a week or more of your life due to a chronic illness like CVS.
I hate having to go into the hospital. I hate getting ativan and phenergan. I hate the way my brain feels fuzzy and out of focus for days after. I hate that I can’t even remember what my doctors or nurses looked like because my memories are so weak thanks to the short-term memory impairment of our lovely friend ativan (I actually can lose memories up to two days before and after getting a dose of ativan. Complete phone conversations forgotten, TV episodes I watched while recovering that I rewatch and feel like a vague dream I once had.) It is the worst feeling. I usually sleep very poorly for first several days after being discharged as I’m coming off of days of drug-induced sleep. I don’t like anything associated with getting these medications, because I only ever get them when I’m suffering from overwhelming nausea. I take them because I must.
Because of the nature of the disease- I mentioned it’s triggered most commonly by intense and anticipatory excitment? Yeah, myself and many sufferers most commonly have episodes while traveling. Which means I am rarely ever treated by a doctor who actually knows me or my history. Which means I’m now the type of person who travels with pages-long letters written to whom it may concern: the doctor who is suddenly trying to obtain information from a person who can barely say two words without dry heaving. But yes, showing up in an ED and stating I have CVS and I need an IV liter bolus, ativan and phenergan given together now please…. makes some doctors become very suspect.
I have been sent away from an emergency department and told to “take some benadryl and sleep it off” while dry heaving, crying, and trying to explain that I’m in the middle of an cyclic vomiting spell and I can no longer tolerate anything on my stomach. I returned to the same ED six hours later with a critical potassium of 2.6. That was the second time in my history with CVS that I’ve had a critical potassium level. The nature of CVS means that we become dehydrated and lose our electrolytes much quicker than the average person who is vomiting due to a stomach virus. I have been hospitalized or in and out of the hospital for 4 days to a week now on 3 separate occasions because I have been unable to tolerate anything PO for that entire week. I’ve lost twenty pounds in a week. CVS is real, and is intense and unrelenting when it hits.
My last two episodes of CVS have been harder to abort. My normal routine of ativan and phenergan, which used to work so well for me, is now becoming more inconsistent with its effects. I was last admitted just this past week, over the last several days of October. I got my usual drugs, woke up and thought I was feeling better, but about an hour later began throwing up again (at least, this is vaguely what I think happened based on fuzzy memories and reading back typo-filled texts; I think I asked for broth, but I don’t remember eating anything until the next day… the deepest, worst part of my episodes I don’t remember that well. This is a blessing, but also a curse as it makes it harder for me to recall and explain). The GI doctor consulting on my case suggested trying scheduled dilaudid to abort my episode as his associate works with several CVS patients and has had good success with that treatment course. I didn’t really want to try it, I certainly did not suggest the treatment myself, and would never have even thought of trying it, but I was at the point where I’d been given ativan and phenergan multiple times and was still feeling no improvement. Basically anything that he would want to try I was willing. (I also had a compazine suppository on two occasions after this point, and my attitude was, sure, stick whatever you want up my butt, it can’t make it worse.) Less than 24 hours after trying the dilaudid I was able to leave. You can bet I remember the dose (0.8mg) the frequency (q6h) and the effectiveness (DISCHARGE I CAN FINALLY BE NORMAL AGAIN PRAISE). I am now terrified of the impression I will give to the next doctor who treats me the next episode I have, when he asks me “what has worked to help with your episodes in the past?” and I have to reply “dilaudid”. But I can’t ignore the fact that the dilaudid is what finally got me home and eating and back to normal. And that’s all I want. To be normal again, to end my episode so I can get back to my life.
I love my life. I have great friends, I love my job, I love working in critical care and having challenging and interesting patients, and being able to provide compassion and support to patients and families in some of the worst times of their lives. I am active in a church, I volunteer, I organize complex involved fan events for webshows I like, I attend conventions and love to travel and see and experience new things. I am typically a very active, excited, energetic, compassionate, caring, serving, and helpful person. When I have episodes, I become basically nonfunctional. And like I said, my episodes usually hit when I have something coming up I’m looking forward to, when the last thing I want to do is be stuck in a hospital bed barely able to function.
Yes, CVS has a psychological component. Most of the triggers are emotional or psychological in some way. But the physical reality of the disease is real and intense. I do not consider myself an anxious person. Or, at least, I didn’t use to. Before I had CVS, I never once felt overwhelmed with anxiety. I went to live in France for three months in high school. I was nervous and excited and I was fine. I competed in intense dance competitions, I excelled in rigorous school programs while also maintaining several extracurriculars. My final year of nursing school I also led a ministry team with my campus ministry, was a Resident Assistant (my third year being an RA), and was the President of my school’s Ministry Choir. (If you’ve never been through or known someone who went through nursing school… trust me, going through the program and still having ANY sort of life is kind of a big deal.) I thrive when I am busy and can take responsibility and leadership roles. I am talented and dedicated and skilled at what I choose to do in life.
Since my diagnosis of CVS, I have been resilient, but I can’t deny that it’s had an effect on me. Choices I used to not blink an eye at, I have to second guess now. Should I really volunteer to lead this project, because I feel excited but anxious about it, and what if it triggers an episode? I am afraid to date, because twice now I have been admitted as an inpatient after a date because my CVS has been so severe. If you ask me today if I struggle with anxiety, I think the answer is probably yes. For the first time in my life I feel like I want to seek out counseling or therapy in some way, because I’m becoming aware of an increasing anxiety in my life that I’m not sure I can fully handle on my own. (I love therapy, huge therapy advocate, I’ve just never felt I personally needed it before.) But when I feel anxious, I feel like I have valid concerns, a valid reason to feel anxious. My anxiety issues have been CAUSED by my CVS; my CVS did not develop because of uncontrollable anxiety. My anxiety issues have slowly increased over the four years I’ve spent dealing with this illness. However- the anxiety about having another episode? Yup. A total trigger for another episode. It can become a vicious cycle for CVS sufferers, and it can be completely disheartening. In the days leading up to my next episode, when I can feel it coming on but it is not responding to my interventions (my last episode I took meds and slept for almost 14 hours, and two days later took more meds and slept for 17 hours. This should have… would have aborted an episode for me two years ago. This time, nothing.) it is completely discouraging and disheartening. I feel helpless against my body. The days after an episode, when I’m feeling back to my normal self, I get a high- everything about life feels great, every single bit of food I eat feels like an amazing gift. When I have episodes close together, it’s an emotional rollercoaster back and forth.
I’m lucky. The majority of my life I still live in my well-state. Living with a chronic illness but basically asymptomatic. I feel more semi-queasy than I used to when I’m stressed or excited or anxious, but still, overall, my personal experience with CVS hasn’t been that bad. I have heard much worse stories from fellow sufferers, and my heart goes out to them. But- when I do cycle, I am transformed. I am restless, unable to be soothed, completely overcome with nausea. One admission this year I needed a midline placed because my vein access has become so poor over the past four years thanks to my frequent admission with drugs that tear away at your veins. (The vein in my hand from my IV last week is still tender to the touch- not the access point from the needle stick, but the vein itself.) I’ve been doing a year-long project where I take a selfie every day of the year, which means I’ve now captured the transition from well to cycling back to well in daily pictures twice now. Feel free to check out my instagram and review the photos as you watch me become a woman transformed by a debilitating chronic illness and then recovered back to her normal state. (My most recent episode was just last week, the end of October. Before that, you’ll have to scroll back all the way to March, but if you do, it is a very clear progression of happiness and excitement to being knocked down hard, and then soon after being right back to having a great time in life).
Please, please do not make snap judgements about these patients. Please do not place Cyclic Vomiting Syndrome into your box of “made-up, theatric disorders” typical of drug seeking patients. We are suffering from a real symptoms that tear our bodies apart and completely shut us down. Our suffering is real, and we need your compassion and support, not your judgement and refusal to give us the treatment we know will work. All we want is to get back to normal or as close to normal as we can as fast as we can. We want to live. Every time a doctor decides to not take me, my diagnosis, or my symptoms seriously, they prolong my suffering and my ability to participate in life. It is cruel and unfair for me to be treated like a drug addict, seeking patient whose problems are all “in her head.” Please give me the dignity and respect I deserve. When I’m not being knocked down by my disease, I am one of you, working in the trenches to treat, heal, decrease the suffering, and give compassion to patients like myself, and people in situations far worse than I have ever been in. Recognize me. Recognize my suffering. Do not minimize or demean it. That is not within your scope or calling as a nurse or a medical professional.
And maybe, take a second to consider patients coming in or people you know with any other sort of chronic, debilitating illness. Migraine sufferers are the closest correlation with CVS, and current research believes that CVS follows the same pathways and migraines, but in the synapses in the gut instead of the brain. It’s so easy to quickly dismiss someone who has symptoms that aren’t easily explained or treated. It doesn’t mean their suffering and their symptoms aren’t real. It just means we don’t fully understand it yet.
I wouldn’t wish this disease, or any chronic illness on anyone, but I do think that being an inpatient changes the way you view the care you give as a nurse, and I think that I have become a better nurse because of my experiences with this illness. For that, I am grateful. But I still hope every day that my last cycle might be my last ever. And I still live every month, every year knowing that there is a very real possibility that my life and plans might have to be put on pause for days or weeks because of an illness that I cannot control, cannot heal, cannot cure, but only manage the best of my ability.