“I Think I’m Gonna Puke” - My Life With Cyclic Vomiting Syndrome + Anxiety
Let’s get real. (Let’s talk about throwing up.)
I’ve been a pukey person for thirteen years now. And by that I mean I’ve been living with chronic (but thankfully more intermittent) Cyclic Vomiting Syndrome (CVS) since my early twenties. A lot of my close friends and family know this about me — but the majority of the people in my life don’t. Turns out talking about your proclivity for puking and anxiety isn’t considered interesting or fun small-talk… So I typically just deal with it and don’t talk much about it and try not to think much of it.
CVS has ruined many vacations, birthdays, concerts, roadtrips, and countless other special occasions for me over the years. I’ve backed out of European vacations and backcountry hiking because of my uncertainty about whether or not my brain/stomach would behave — and from the fear of then ruining everyone else’s trip. I’ve spent more than one Thanksgiving and Christmas by myself in a hospital room.
Source: my own photo
I’m sharing my story because I’m not alone and it’s time. No sympathy needed, I’ve given myself enough over the years. I know there are lots of other adults out there like me who struggle, who are still searching for answers and trying to understand their bodies better, and are paying the medical bills all the while, just hoping to shed more light on the topic.
So here’s my journey with CVS. What it is. How it began for me. The triggers and catalysts I’ve recognized over the years. My methods for self-treatment, some rambling rants here and there, and more. If you’re struggling with cyclic vomiting syndrome or someone in your family is, I’m here for you and I’m with you, too.
Also: Check out the Cyclic Vomiting Syndrome Association
What is Cyclic Vomiting Syndrome?
Here’s my first-hand analysis in non-science speak:
Some specialists refer to it as an “abdominal migraine”. It’s a neuro-gastrological disorder that causes you to experience (potentially days worth of) extreme nausea, vomiting, lethargy - and for me, usually a big dollop of anxiety along with it. Basically the hard-wiring between your brain and your stomach gets upset or messed up; and your brain tells your stomach to revolt against you.
Nothing stays down —not even water— which, for me, causes my anxiety to snowball, making it more likely for a CVS episode to set in. If I’m lucky I can nip an anxiety attack in the bud when it comes on. If I’m unlucky and don’t stop the anxiety/vomiting in time — I’ll usually reach a point of dehydration that only a trip to the ER and a fluid IV hookup can remedy, and by this point I’m a zombie and can barely walk or talk. (It’s not ideal.)
If you’ve never heard of CVS before you’re not alone. I think the statistics for adults dance somewhere around 1% in the United States. It’s more common in children than in adults; though females are usually more susceptible than men. Maybe that 1% thing is why most doctors looked at me somewhat bewildered; and even though I could list years worth of the same recurring symptoms, more than half the time they mis-diagnosed me. (More on that frustration later.)
My first CVS episode
My first episode happened twleve years ago. I was 21 and was en route with my brother, his best friend, and my future sister-in-law from Gainesville Florida to meet our parents in Orlando for the weekend to celebrate my brother’s birthday, stay in a hotel, and go to some theme parks.
We went out to eat together that first night, and because it kicked off my life with CVS, I’ll never forget my dinner order: a mint mojito to drink and some kind of creamy Alfredo pasta. (I also remember it still because that combination sounds pretty gross to me now… Clearly an indicator of my 21-year-old inability to pair food and drinks at all.)
I almost made it to the park the next morning when it began. Sparing you all the details, (which to be honest is a funny story looking back on it) I’ll just tell you that I puked up my life force in a tiny shuttle van that morning. Into my own lap and into the sports section of a newspaper my brother had been enjoying only seconds earlier. (Thanks mom for your maternal-catlike-reflexes! Sorry, brother for your birthday barfscapade.)
Needless to say, I didn’t make it to the parks. My mom took me back to the hotel and stayed with me, waiting for the puke storm to pass. But it didn’t.
Rather than let me go back to school in Gainesville with my brother, the next day my parents drove me home to Sarasota Florida so they could take care of me until I got better — which still wasn’t happening.
By the next day I was in the emergency room and we were all freaked out.
I was still puking. Up what? There was hardly anything in my body. Only the water I was still drinking and still throwing up. But the nausea, gagging, and anxiety persisted.
My doctor was clueless. He had few ideas of what had prompted this or why I couldn’t make it stop. He ordered stomach-emptying tests and a CT scan and bloodwork and poked and prodded and speculated. . . But not once did I ever hear ‘Cyclic Vomiting Syndrome’. If I remember correctly, I think at that point he thought it was gastroparesis — even though my stomach-emptying tests ran normally — and he diagnosed it as that. (Gastroparesis focuses more on problems around the stomach muscle itself not working and the stomach not being able to correctly digest food)
I think I was in the hospital for about four days during that first episode. They wouldn’t discharge me and let me go home until I could “not puke for 24 hours”, or something dreadfully impossible like that. I actually did like that doctor. But he still didn’t look at the whole picture; and ultimately, I wasn’t nearby enough to continue working with him.
Many more episodes came in varying levels of severity over the next few years. We’d decided based on that first experience that I needed to be avoiding greasy foods and alcohol.
But the latter is easier said than done by a 21 year old college student. I did my best and I took a good break from drinking.
But being naive and testing the strengths of my youth, I eventually started going back out to bars and drinking a bit. Now, I should disclaim that I’ve always been a lightweight. I’ve never blacked out once in my life, and never fully enjoyed that moment that comes once you drink past tipsiness. Going out to have “drinks” for me might mean three drinks, but nothing crazy.
And as it turned out, some nights that was no problem. I could go have fun with my friends, sleep it off, and keep rolling on the next day. This irregularity didn’t help me learn any lessons — maybe alcohol wasn’t the issue, I thought? But once every few months I’d be painfully reminded. I remember going out, having one drink, and being sick for days and winding up back in the hospital.
It was hard in the beginning. I knew nothing about what was happening to my body. It was fresh and new and I wasn’t yet looking at it like a science-experiment that I needed to learn and evolve from. I’d behave myself for a small period — find I felt better — misbehave again — and be upset when I’d get sick all over. (I distinctly remember my mother telling me at some point during these years that I was living out the definition of insanity — doing the same thing and expecting different results.)
Because I couldn’t explain it all that well - my friends didn’t know what to think, either - and didn’t completely believe what little and muddy knowledge I had about it all. I was so much skinnier by the end of my senior year than I was at the beginning of it. I remember a few of them berating me -albeit lovingly- because they thought I was lying about having an eating disorder. That sucked. I felt helpless.
Or when people saw me afterwards, thirty pounds skinnier now from having been so sick, and congratulated me for looking so ‘great’. I weighed about 100 pounds. That really sucked. If I recall correctly, I think I snapped on someone and reprimanded their praise, saying something like “Well I’ve been quite sick and have thousands and thousands of dollars in medical bills because of it, so, maybe don’t glorify my 100 pound body. . . And definitely don’t do it before you know why. . .” (Please take my experience as an important body image lesson. I’ve worked with too many women who had perfectly healthy beautiful bodies and thought they were fat. And I’ve had just as many women over the years give me grief and envious criticism because they wished they could be “my size”. I’ve told any/all of them that’s not what it’s about, and my struggle behind size, weight, and body image because of CVS.)
Many more episodes came over the subsequent decade after college, and with them more trips to the hospital, though they were growing a little less frequent at least. I learned here and there and got a bit wiser with each setback; but I never said I wasn’t stupid some of the time, either. (Like I said before — definition of insanity.)
But I got better at looking for all the patterns. I already knew my body was sensitive to alcohol. I knew one of the few things to make me feel better was hot showers. Now I noticed a recurring answer when being checked in at the hospital. While taking my vitals they’d always ask: “Do you think you might be pregnant?” — to which I usually deliriously scoffed, saying: “Definitely no. I’m on my period right now.”
That was the point when I started looking at my personal experience with CVS as a science experiment. What were the constants? What were the variables? What was going on in my environment at the time? I decided after a few years of suffering with this that no one would ever know my situation or circumstance better than me — so the job of understanding my body was mine and mine alone.
Because by this point, too — only a few years in — I was already skeptic of every doctor I had met with. None of them asked deeper questions. None of them wanted to look at the whole picture. The wholistic picture. None of them wanted to analyze the variables and talk about the psychological potential behind this; or talk about my past. None of them at this point had even suggested Cyclic Vomiting Syndrome - which is more well known now than it was when they were getting their degrees — so lots of doctors are still unfamiliar with it. I left one doctor’s office with a prescription in hand for pancreatitis — even though I’d thoroughly described the nature of my recurring condition at that point. I wanted to call that doctor a moron, but didn’t. Instead I shut my mouth and paid him hundreds of dollars, even though I knew he was 100% wrong anyway.
Wanna know how I finally figured out it was cyclic vomiting syndrome. . . ? INSTAGRAM.
That’s right. Freaking Instagram.
I was nearing the end of an episode, laying in bed in agony, searching for answers. I’d still never heard the term Cyclic Vomiting Syndrome. Not from any doctor or journal I’d met or read thus far. I started searching hashtags on instagram (what a millennial) and searched something like, #incessantvomiting, #nonstoppuking . . . You get the idea.
And one of the pictures that popped up from my search was a girl about my age in a hospital bed. I clicked on it and start reading about her exact same recurring symptoms. Her exact same experience. Her exact same hot shower coping method. Same. Same. Same. It was all a perfect match. And she was being treated for Cyclic Vomiting Syndrome.
I took this new information and ran with it. Googling deeper for more answers and medical opinions. I felt frustrated that I’d stumbled on the answer on my own. How could no doctor have known this? But more elated that at least I finally had an answer and a name for this debilitating attacker.
I found that the only things that helped during an episode were hot showers (and by hot shower I mean the hottest shower possible, 2nd degree burns preferable) and cannabis. Cannabis was (and still is) the only medicine that’s been able to curb, ebb, or stop my anxiety — and truly the only medicine I can take. (My body can’t keep any liquid or pill prescribed to me down long enough for it to do its job without puking it up. I have okay luck with Zofran dissolvable anti-nausea tablets, too, for anyone here looking for any/all solution options!)
So over the years I pretty much got my doctorate in hot showers and the art of self-soothing.
I am familiar with cannabinoid hyperemesis, but I’ll probably always personally prefer natural medicines to pharmaceutical alternatives; like I said, it’s a bit tricky when you can’t ingest any medicine during an episode.
(I’m a firm believer that cannabis should be legal in all 50 states by this point. I’m not saying it’s the answer to CVS and I’m not saying it’s for everyone. But if you disagree then I’d encourage you to read up after this on how beneficial medical marijuana is for millions of patients around the world.)
Source: my own photo
My Triggers:
Stress / Anxiety / Excitement (good or bad)
Change To My Routine / Visiting New Places (good or bad)
Red meat (I can eat it, but it has to be cooked well done)
Greasy foods (greasy, oily, buttery, fatty)
Alcohol (with more sensitivity to liquor than beer or wine)
My period
These variables can play around with each other to create the perfect storm if I’m not paying close enough attention to my body. I’ve learned over the years to be extra-conscientious of my energy levels and needs around ‘that time of the month’ and that my self-care routine is absolutely essential. If I am going to cheat and eat or drink something from my trigger list nowadays — cuz hey, I’m not perfect — I plan it out and look at my life, my health, my schedule — to try and predict if it’s an okay decision for me to make at that time.
Excitement and change to my routine were biggies that were giving me trouble, too.
I learned that there’s such a thing as “good and bad" excitement and “good and bad” anxiety. The holidays would approach, and I’d get so excited to see my family for Thanksgiving I’d get sick enough to wind up in the hospital. Or once I got invited to a work trip/vacation at an awesome mansion estate. I made it to the house, but got so sick upon my arrival I spent days puking in the insanely luxe bathroom instead. Or like the episode that began after dropping a friend off at the airport to go home, and feeling so homesick wishing I was headed home, too — by the time I got back from the airport drop-off I was sick for days.
Stress and anxiety are just as powerful. Over the years I’ve just started calling my brain my “superpower”, whether it’s working in my favor or not.
A build up of too much negative stress, exhaustion, or anxiety can start the cycle. I’m stressed or anxious about something. Then I feel nauseous. Then I’m anxious about being nauseous and worrying it will develop into an episode; thus beginning the snowball effect of self-torture.
Greasy, excessively buttery or oily food, alcohol, and red meat are my biggest food triggers.
While I’ve gone through phases where I’ve weeded each out completely, I go through other phases where if I do want something, I look at all the other variables at the time to determine if it’s okay. For example - a burger and a cocktail? Not in the cards anymore. Just the cocktail? What time of the month is it? If Aunt Flo will be here soon, is here now, or just left town a few days ago, that’s gonna be another hard no.
Another example - I was drinking a few glasses of red wine per week earlier this year with no problems. Then COVID began, the world got a little wackier with it, and my job went on furlough for three+ months. I was doing okay - even excited about the prospect of so much free time - but just as quietly stressed as the rest of the world. Within a few weeks of living my stay at home quarantine life, drinking my evening red wine — I got crazy sick and fell into a barfing episode. So no more wine for awhile. . . Or only one glass, around the right time of the month, when life isn’t so crazy.
The point of this isn’t to list you all my triggers so you can eliminate them from your routine, too. Everyone is different; triggered and affected, positively and negatively, by different things. The point is to start listening to your body and paying attention to the signs it gives you. No doctor will ever know what you ate or what you were doing or how you were feeling or what was going on in your world when X, Y, Z happened — so in that way you have to be that doctor for yourself.
Start writing it down if you have to! (I started a Google Doc at some point years ago, and whenever I’d have an episode I’d get on the computer the next day and write out everything I could remember having eaten in the past 2-3 days; if I was on my period or not; what was going on in my life or coming up; etc etc etc)
Working Through Anxiety Attacks
I’ll be honest . . . The puking part is terrible. I wouldn’t wish it on my worst enemy. I’ve had bruised ribs and seen stars from throwing up so hard. I’ve been certain I was puking up my own soul and life force, because how could there be anything left inside me but that after days of gagging?
But the anxiety. . . The anxiety is the worst part. The anxiety is the tipping point where a decision will be made. By you. By your brain. By your body. By some unseeable force in the universe. The anxiety arrives, and it’s that moment when you either surrender to it and let the puke-fest begin, or you acknowledge its presence and try your damndest to not feed it a single scrap.
For me anxiety starts like this:
I wake up in the middle of the night or in the pre-dawn morning and my heart is pounding so loudly it could be confused with someone banging on the front door. And I immediately feel foolish and silly and I just want to laugh because I know my feelings of doom and dread and impending death are irrational - but they show up anyway.
So I want to laugh but can’t. Because if you’re like me, these perniciously cunning little thoughts are being doused with lighter fluid by our superpowered brains and they’re about to light a cerebral bonfire for us to thoroughly unenjoy.
It’s my brain’s fault.
At some point I recognized that my stomach wasn’t the biggest offender in all this — it was my brain. My superpower, to a fault. As my anxiety has risen up to meet me over the years I’ve learned that I have to also rise up to meet it. To acknowledge it but not accept it. To greet it right back, but not invite it inside to stay. I have to accept that my brain is amazingly powerful, but sometimes to a fault; and not always steering my in the right direction.
When it comes to this particular exercise, it is most definitely a sprint and not a marathon. If an anxiety attack starts to come on I will drop everything and work to squash it as quickly as I can.
Everyone has their own ways for coping with stress and anxiety…
My best method? To divert my attention elsewhere.
When I start to get that shaky, sweaty, heart-pounding onset of an anxiety attack I take a shower with all the lights off and sing Disney songs in my head with as much music and visual detail as I can muster. Sound crazy? It sure is! But making myself recreate Beauty & The Beast in my head demands enough of my focus that I generally feel much calmer after 5-10 minutes.
(Yoga and stretching are hugely helpful for me, too - but I find that singing and replaying things in my head is the only way to keep my brain busy enough that it won’t fill itself with anxious thoughts.)
I’m also a big proponent of verbal affirmations. There’s science behind the term “fake it ‘til you make it” — and this goes for your brain, too. Even if I’m green and nauseous and most assuredly barfing, I am going to tell myself over and over — and out loud — that “I AM OKAY.”
That “THIS WILL PASS.”
That “THIS IS HAPPENING BECAUSE YOU KNEW BETTER BUT ACTED DUMB AND ATE A GREASY BURGER ANYWAY. YOU ARE GOING TO BE FINE.”
If the anxiety comes on and I surrender to it — I’m doomed. I’ve given up. If I rise to meet it, accepting it as nothing more than my super-fueled brain — I’m usually much more successful in beating it. If I acknowledge its presence — tell myself I’m fine on repeat — then politely ask it to back up, step off, and leave me be. . . I’m usually much more successful at nipping it in the bud.
It also kind of comes down to this famous quote from Henry Ford:
“Whether you think you can or you can’t you’re right.”
my cvs self-treatment routine / what an episode looks like for me:
If I know I can’t stop an episode from fully coming on, I immediately stop any/all food and liquid intake. This is hard, and it includes water, too. If I know I’m going to throw it up anyway, I do my best to let my stomach REST and not give it any fuel. I will be hungry and thirsty, but it’s my best bet at stopping the cycle. If I am starting to feel the effects of dehydration I’ll usually chew a few ice chips or suck on a Ricola lozenge.
I immediately take a Zofran dissolvable anti-nausea tablet and a chewable drowsy Benadryl to hopefully help me just rest and sleep it off. (Sleep is my best chance at my brain/stomach resetting themselves back to normal.) The first medicine-go-around is usually unsuccessful; and I end up throwing it up within 15-20 minutes. Then I try to tough out a few hours and hope that at least a little medicine stayed in my system, and just continue trying to get some rest.
If my anxiety is debilitating me I’ll take as many hot showers as our water-heater tank can allow me and use my vaporizer a few times throughout the day at a low temperature setting to help ease my nerves and nausea.
If I’m still episodal another 4-5 hours later I’ll take another Zofran and Benadryl; often I’m tired enough by that point that the medicine usually does its job and I’m able to fall asleep.
MY arsenal: SOLUTIONS, REMEDIES, + self-treatment supplies:
Stopping food/liquid intake until recovery. (Yes. You will be hungry and thirsty, but your stomach needs to rest. No drinking/eating anything if you’re just going to throw it up and continue the vomiting cycle. If you’re getting dehydrated: chew ice chips; Ricola or another throat lozenge, etc.)
Hot Showers
Mental Distraction (Sing those Disney songs all the way!)
Yoga / Stretching
Massage (Anxiety causes my body to ache. I use a Thera Cane back massager which is amazing for daily deep tissue and a vibrating Homedics massager for daily aches and breaking up muscle knots!)
Cannabis (I live in Oregon where this is legal and viable. I don’t smoke, but prefer vaporizing and eating edibles so you don’t combust the elements that are most helpful for anxiety and nausea.)
Zofran dissolvable anti-nausea tablets (Works 60% of the time. I usually end up throwing up even from this, though.)
Benadryl chewable drowsy allergy medicine (eventually helps me fall asleep so I can rest it off)
Ricola throat lozenge - helps if you’re feeling thirsty/dehydrated and keeps you from drinking water
SLEEP
(I’ve discussed with doctors and/or lightly experimented with other options over the years, too. Probiotics and CoQ10 to help promote a healthy gut; a mild anti-anxiety to take daily (that was a doctor’s suggestion that I was really not keen on and declined); and potential to treat an episode with migraine medicine- which I haven’t tried yet!)
This rice cake was my SWEET SWEET VICTORY after a 30+ hour puke-fest.
It’s crazy episodes like this one that make you so thankful when you’re finally able to eat ANYTHING or start drinking water again!
Post-episode days:
For the few days following an episode I’m incredible ginger with myself. Plans get canceled. No work. No running around and moving a lot in general. I keep it pretty still and chill and continue to allow my body to reset back to ‘normal’. My diet goes to a flu patient’s: broth, rice, applesauce, toast, hot tea, gatorade, water, and nothing seasoned or tremendously exciting.
I’m 33 years old now; and while my episodes have grown less and less frequent (I once went almost a year and a half without an episode) they’re still there.
CVS isn’t something I’ve grown out of, yet, and while it’s gotten easier to manage, I still have to be aware of and keep an eye on the weird intangible and immeasurable aspects of my health.
(Several medical journals do believe that CVS is somehow linked to hormones and is most active for 20-somethings, with decreasing episodes as adults age into their 30s+). So hopefully that’s me: a thirty-something on the downslope of this wild, pukey ride.
I’ve learned enough about my condition and my body and how I react to it that I’ve been able to minimize the severity. In the two years we’ve lived in Oregon I’ve gone through a few episodes but never had to go to the hospital for any of them — which is a major win in my book! That probably wouldn’t have been the case ten years ago.
If you have other tools in your CVS arsenal, I’d love to hear them! How you cope, how you manage and self-treat symptoms, any medicines that have worked (or not worked!) for you. . . etc! Feel free to drop me a comment here or if you’d like to speak about your experience with CVS more privately you are welcome to email me at meggan@fireflyandfinch.com
Check out the Cyclic Vomiting Syndrome Association (CVSA) that I mentioned earlier, too. It’s a great resource for CVS patients and caretakers alike, with useful educational tools and medical journals, forums, tips for hospital visits, and other resources to make your life easier as well as a network of people to connect with.
Whether you’re new to this, or you’re a parent helping your kid navigate through this, or you’re like me and you’ve been on this road for years — just know you’re not alone. Actually, there are thousands of us in this barforama-fest together.
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