“I Think I Might Barf!” Life With Chronic Cyclic Vomiting Syndrome.
If you’re clicking into this post going, “What the heck is Cyclic Vomiting Syndrome?”… don’t worry — you’re part of the majority! CVS only affects 2% of Americans; which means most Americans have never even heard of CVS. (Lucky you, I guess!)
As someone who has lived with CVS for almost 20 years, I decided to write my first blog post about ‘life with chronic Cyclic Vomiting Syndrome’ back in 2020.
Life with chronic Cyclic Vomiting Syndrome means owning every single type of antacid on the market - am I right?? :)
(Personal picture; taken a few years ago when cleaning the bathroom counter and laughing at the ridiculousness of my upset-tummy arsenal.)
When writing that post four years ago (YIKES - that was FOUR years ago?!), my intention was to share the ups & downs of my own journey with CVS, in hopes that my experience might provide insight for others struggling with diagnosis or treatment.
As this isn’t a high-traffic blog, I never expected to get any feedback or comment, let alone dozens of comments from fellow CVS patients!
However, since publishing that first post, I’ve connected with dozens of fellow CVS warriors (and members of their support system alike) to discuss our mutual struggles, triumphs, treatment strategies, and more.
As someone who felt isolated by this syndrome for many years - that has been such a huge feeling of victory. Not only is CVS more understood within the medical industry, it’s also become evident to me that I’m certainly not alone in this battle.
While awareness has grown over the years within the healthcare industry - CVS is still not unanimously understood or known by all doctors.
With that being said, we have come a long way with medical understanding. (At least … that’s my opinion since I had my first severe episode in 2007 - when I was hospitalized for a week and no doctors could pinpoint was going on.)
I have had to endure more trips to the ER than I can honestly remember or count because of CVS - though thankfully they’ve grown less and less over time.
(Hospital Emergency Room visit # who-knows-what. Battle-weary but just thankful to be coming out of a CVS episode.)
I recently received the article linked and pictured below from a member of my CVS support circle, and thought it was so well-informed that it was worth writing a follow-up blog post for!
Written by Carolyn Crist with input from several doctors, the article is (in my humble opinion) the most accurate and concise medical explanation of CVS, plus suggested treatment paths.
Check out the 2024 article from MDEdge here: AGA Issues Guidance on Identifying, Treating Cyclic Vomiting Syndrome
Feel free to bookmark this article link (or save this photo) if you need to share this information with a healthcare provider or family member who is unfamiliar with CVS.
As mentioned, Grist’s article also provides helpful insight from Doctors Levinthal and Frazier, who specialize in neurogastroenterology and gastroenterology, respectively.
The only disparity that I find interesting in this journal article is the omission of ‘hot shower’ treatment; which is mentioned in most other CVS literature/analysis I’ve read over the years. (Hot showering is also one of my own personal / main self-treatment practices during a flare up period - so it is interesting that it isn’t mentioned here.)
With that being said, I have heard feedback from CVS warriors who oppose this, and claim that hot-showering can actually amplify their anxiety (or surrounding nausea symptoms), and that hot-showering unfortunately does not alleviate their CVS symptoms.
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As mentioned in my original CVS blog post, while I am a warrior of chronic-CVS, I am neither a doctor nor a medical professional. While I welcome discussion, feedback, and comments within this CVS community,
I recommend that you always confer with a medical professional or primary doctor to establish a CVS treatment plan that is best for you.
What CVS looks like for me these days…
What’s changed since my first CVS blog post?
I’ve become seriously addicted to my portable back massager.
Okay so let me explain…
I’ve always carried tension in my neck/shoulders/back area. One CVS coping mechanism I’ve adopted over the years is the general notion of an ‘override’ button. (In other words, if my body is experiencing a flare of nausea or anxiety I need to try and ‘override’ that feeling.)
Enter: the portable back massager.
When nausea or anxiety flares up, I use my portable/cordless back massager and try to focus as intensely as I can on alleviating aches and pains in my neck/shoulders/back area, which in turn, is a huge help in overriding and diminishing my anxiety or nausea. No need to be plugged into a wall - I will honestly walk around the house using it wherever/whenever.
I got re-established with a primary care doctor.
(This doesn’t sound like a big deal, but it was for me!) After a period of bad experiences with doctors or clinics that dismissed me because they didn’t have familiarity with cyclic vomiting syndrome - I swore off all doctors for a bit and did not see a primary doctor for years. (I’M NOT ADVISING THIS, AND REALIZE THIS IS STUPID… I’m just being honest with my own path. Bad doctor experiences + Doctor skepticism turned into the personal decision to learn to manage CVS on my own.)
Once again, let me reiterate - I’m pretty sure no one would ever tell you not to see a doctor for years - and again… that’s not what I am advising here… so please, do better than me, okay?
When re-entering the medical waters, I did some research and chose a female doctor with a focus in internal medicine (which typically means, a better chance that she’d be familiar with CVS), which thankfully, she is.
We spent most of my first appointment with me unnessecarily apologizing for being a bad patient and neglecting my annual checkups - and then proceeding to tell her WHY my journey had led to skepticism and feeling generally bummed about the CVS ‘treatment’ I’d received over the years.
I told her my full CVS history as of 2007 and my typical self-treatment methods… which is a nice way of me saying I spent the appointment telling her all the weird hacks in my arsenal and things I do to try and stop triggers or flare-ups around nausea or anxiety.
“Hey Doc, here’s what my CVS toolbox includes:”
Hot showers
Being addicted to my portable back massager
Having quick grab applesauce cups (unsweetened) all over the house (to avoid ‘hangry’ anxiety flares)
Over the counter sleep-aid chewables (sleep helps curb CVS flares/episodes and associated anxiety)
*Cannabis (sorry, can’t link that for sale) (to combat nausea/anxiety)
*I’m not condoning this as a tool for everyone/anyone, I’m simply being honest about my treatment path and what I’ve used over the years.
Brain tricks + mental distractions (to help during anxiety flares)
Endless supply of peppermint tea (the best for an upset tummy)
No triggers / avoidance of triggers (triggers = stress/anxiety, alcohol, red meat, excess of dairy, lack of sleep)
I think at one point she raised her eyebrows and smiled and was either amused or impressed by all of the weird coping mechanisms I’ve adopted over the years. (‘Brain tricks’ is a shortened way of saying I sing Disney songs in my head, or pretend I am teaching a yoga class. Ya know…? Just like an ‘override’ button. Whatever works!)
After discussing my medical history (and similar to the suggestions from the medical article linked above), she ultimately prescribed me with the lowest dosage of Zofran - to combat nausea, and Diazepam - only to be taken during CVS flare-ups or extreme anxiety.
(I typically only resort to taking this medicine if a flare-up is starting to look threatening; and unless I am battling a particularly nasty flare-up or episode, I typically break all medicine doses in half, so that my body does not develop any reliance on them.)
I will say it again: I am neither a medical professional nor a doctor.
I am very thankful my doctor spent time to discuss and determine that I was a fit and suitable candidate for an anti-anxiety option, with a very clear mutual understanding that this isn’t a medicine to fuck around with - pardon my French.
I am abundantly aware of the opioid crisis in our country and know people who have lost loved ones due to overdose. I am also abundantly aware of my own needs as it pertains to CVS, and told my doctor that my basic rationale is:
- I need to avoid trips to the hospital due to CVS (ever again, ideally) - which means,
- I need any medicine that I take to be able to work effectively within my body - which means,
- While I experience frequent mild anxiety, I need to use normal/healthy coping strategies, and need only take an anti-anxiety medicine when extremely necessary
I say all of this because, if you are looking for help with diagnosis or treatment - it is important that you work with your healthcare provider to determine the most suitable - and importantly, the safest option for you. (I will say it again - this isn’t a medicine to fuck around with.)
What hasn’t changed? (In other words, what do I still need to work on?)
Cyclic vomiting syndrome doesn’t go away, but hopefully (for some of us), it gets better over time - with symptoms that show up less and less … or that we learn to manage with greater ease.
I do think this is thankfully the case for me; and that as I get closer to my 40s I have done enough work to understand my body’s triggers and needs; and now have better support from a doctor with more effective treatment options - to hopefully have fewer episode days. With that being said, I know there is still work to be done within my own ‘health and wellness’ path. Some of my goals for 2025 are:
Get re-acquainted with a regular yoga practice routine;
Get acquainted with any kind of meditation practice (because let’s be real that’s non-existent right now; and
More time reading + writing; less meaningless screen-time.
I’m also trying out a new self-care app called Finch. (The app’s name is all-too-appropriate, considering the blog’s name!) Finch Care is essentially a mindfulness, self-care, goal-setting/coaching app, and has good reviews thus far for its incredibly cute and engaging design. You basically ‘take care of’ a baby bird and help foster your own self-care and growth by taking care of your little birdie.
Check it out in the App Store here if you’re interested!
They offer a free two week trial, and then it’s about $40 per year. I can justify the cost (which breaks down to about $3.33 per month) because it’s still less money than buying one Starbucks per month - and hey… it’s good for me!
RECOMMENDATIONS FOR CVS WARRIORS WHO ARE WEARY:
REST
You deserve it - and typically, CVS warriors require a little bit more of it. (And while you should never have to justify ‘deserving’ rest - I recognize it’s not always easy for us all to come by.)
LEARN TO SAY “NO”
(OR, LEARN TO MAKE THINGS WORK FOR YOU, SO YOU CAN SAY “YES”)Learning to say “no” kind of goes with the REST concept above - but it is different and equally important. (Saying No isn’t always easy - and sometimes you feel like you miss out on fun; but it’s an important concept to learn.)
Say “no thank you” to activities that don’t serve your health or interest, or that might trigger your body into a flare up.
Understand that ‘it’s okay’ if things need to look a little different for you as a result of saying “no”.
Understand that ‘it’s okay’ if things need to look a little different for you to make something work so you can say yes.
FIND YOUR ‘OVERRIDE’ BUTTON(S)
What’s your override button? In other words, what helps distract you from your symptoms right away? As I mentioned above, the notion of an invisible ‘override’ button has been a very important tool in my CVS toolbox.
While these tools may be different for each person, my three main override buttons are:
1) eating an applesauce cup (if I’m hangry/anxious/queasy);
2) jumping into a very hot shower; or
3) grabbing my cordless back massage gun and trying to channel all my focus on making my aches and pains feel better
FIND A PRIMARY DOCTOR WHO IS FAMILIAR WITH CVS, AND WHO SUPPORTS YOU
REAL-TALK TIME:
To be able to connect with fellow CVS-warriors over the years has been an honor, and has honestly brought me to tears on multiple occasions (when I get to connect with others who read and feel less isolated, confused, or frustrated).
I do truly hope that if you are reading this -and a warrior, too- you know that you are not alone! I’d love to connect however you feel comfortable; as with my original CVS post, please feel free to leave a comment on this post, send me a message on Instagram, or drop me an email at thefireflyandfinch@gmail.com.
::insert big giant hug here::
If this post or my original may help someone you know - please feel free to share!
(Original post linked below)
See you on Instagram, @fireflyandfinch
