I was diagnosed with Cyclic Vomiting Syndrome, also known as CVS, when I was 17. I created this blog post to share my experience with the illness and to hopefully reach some people that have been newly diagnosed or are struggling to get a diagnosis.
What is Cyclic Vomiting Syndrome?
CVS is a rare illness, that normally presents itself in children, where the sufferer experiences repeated, and or prolonged episodes of vomiting or nausea.
Personally, I have suffered from prolonged episodes of vomiting that occur relatively frequently, as well as a lot of nausea.
Why Am I Sharing My CVS Story?
About a while ago, I posted a video on my YouTube channel explaining my illness, my journey to being diagnosed, and how I have and am still dealing with my illness. As I write this blog post that video is sitting at over 3k views (2020 update: it’s now over 11k) and is my most engaged with video. I get at least one direct message a week (normally over Instagram) in regards to my diagnosis, either by fellow sufferers or from people who think they are a potential CVS patient. I wanted to write this blog post in hope that by sharing my story on another platform I’ll be able to expand my reach to more people who are struggling with CVS or trying to find an answer to their debilitating symptoms pre-diagnosis.
This post is going to be a long one so feel free to grab yourself a cup of tea before settling down into it.
My Experience with Cyclic Vomiting Syndrome:
It’s fair to say I can’t tell you the exact moment Cyclic Vomiting became prevalent in my life, my mum says that she now recognises a vomiting episode that led to me being admitted to hospital for dehydration as a baby as where it first started, but I went numerous years without any sign of vomit in my early childhood. In infant school I was one of those kids who used to get the 100% attendance certificate at the end of the school year – this being a very far cry to my attendance during A levels but more on that later.
I personally pinpoint my first episode somewhere towards the end of my Year 9 school year. I was meant to attend a school trip to the Natural History Museum and The Science Museum in London, as you can imagine at age 14 wandering around big interactive museums in the capital with your friends is quite exciting. Yet, I spent the night previous vomiting persistently, to be exact 20 times, each exactly twenty minutes apart. At this time we didn’t have a bathroom upstairs so my mum made up the sofa bed downstairs so I could be somewhat comfy and as close to a toilet as possible. (I’ve since acquired a pink bucket with a lid, nicknamed my sick bucket, which has proved to be a lifesaver – if you have CVS I highly recommend getting yourself one). This was the largest episode I had for a while, looking back I think I felt nauseous quite often after this but I don’t remember any other massive vomiting episodes during my GCSEs.
That brings us to A Levels when I started having full-blown CVS episodes. If you’re familiar with Cyclic Vomiting you’ll know that many things contribute to an episode happening: stress, anxiety, viruses (even a simple cold), excitement and that’s just to name a few. It’s fair to say I had my fair share (possibly for life) of the first three contributors I mentioned during my A levels. Stress – the obvious one, A Levels are difficult and I’d never struggled with school before, my school didn’t really have the right systems in place to support struggling students and it wasn’t until my parents stepped in that the school attempted to help me with my stress. Anxiety – this played a massive part in my CVS, I was diagnosed with anxiety around the same time as CVS, I was under a lot of emotional stress for a large variety of reasons which I won’t go into now. As we all know a common symptom of anxiety is nausea and this was only exacerbated by my CVS. That brings us to viruses – if there was a cold going around, you’d be sure I’d get it. Instead of simply making me sniffly for a week, a cold would make me vomit for a week instead.
These three elements added together led to my Cyclic Vomiting being awful during this time. During my first six months of Sixth Form I had a week off every single month suffering from an episode. During an episode I would be uncontrollably vomiting for days on end, even when I hadn’t eaten or drunk anything in three days my body would somehow still find something to bring up. As you can imagine this is quite painful. As if going through a week-long episode like that every month wasn’t enough I had other symptoms too. I was never not nauseous, due to this I could barely eat and lost a lot of weight. I sometimes would have a random vomit before having to go into school, this was definitely triggered by anxiety (my sixth form was an extremely toxic place for me and I did struggle to bring myself to go in every day). Another symptom I would have frequently was violent hiccups, and unless you’ve experienced these yourself I can’t explain to you how painful they are, unlike the annoyance of normal hiccups these would shake my whole body and would last for ages.
Being Diagnosed with Cyclic Vomiting Syndrome:
Now I’ve told you a bit of my medical history I’ll take you through my process of being diagnosed with CVS.
As I stated previously I was diagnosed with anxiety in the same year as CVS. If you’ve ever suffered with anxiety along with other health conditions then you’ll know that your other conditions go un-diagnosed with doctors telling you it’s just your anxiety. My GP brushed off my CVS symptoms for months before my mum finally managed to persuade them to refer me to the local hospital’s gastroenterology department. The doctor at the hospital was nice and didn’t dismiss me as my GP had but he did admit that he personally couldn’t do anything for me. However, he suspected that I might have Cyclic Vomiting and not knowing much about it himself referred me to another local doctor who specialises in CVS. This was the first time I had ever heard of this illness.
A few months later I had another gastro appointment with a different doctor (it seemed the direct referral hadn’t worked and that I had been taken up by another doctor) who yet again dismissed me (somewhat rudely) telling me it was simply my anxiety I was having issues with. So I went back to school that day, again, disappointed that I was nowhere nearer knowing what was wrong with me. However, after I’d been at school about half an hour my mum called me to let me know the original doctor I was supposed to be referred to had called her to say an appointment had become free later that day and that he was interested in my case. This is when the real movement began with my diagnosis.
My new consultant ordered numerous tests to rule out anything other diagnoses – this is how they diagnose CVS (very similar to chronic fatigue – there’s not one specific test that can tell you yes or no). The first and most simple was an ultrasound, this is self-explanatory. The second is possibly the weirdest test I have ever had done, and possibly will ever have done, and that was a gastric emptying study. In this I had my stomach scanned multiple times at different stages of digestion. How do they do this you ask? Well, you’re supposed to eat radioactive scrambled eggs, me being me however thought I’d throw these up so the doctors let my dad make mashed potato and they added the radioactive substance to this. So yes I can say that I have eaten radioactive mashed potato!
The last test is one of the most traumatic things I have ever been through physically, this was an endoscopy. To clarify this is when a doctor puts a camera down your throat. I’ve had some bad experiences with doctors (especially since being at uni) but this definitely tops the list. Before the procedure you’re asked whether you would like a simple numbing spray on your throat or a sedative, having CVS I have an extremely strong gag reflex so decided to go with the sedative. At this point, I’d expect to be weighed, have my height taken etc so they could work out exactly how much sedative they needed to give me but the nurse simply took one look at me (at this point I was possibly at my lowest weight) and stated that I was tiny (I’m not, I’m 5’7 which is well above what I would consider ‘tiny’) and gave me a dose based purely off a glance. It’s fair to say this dosage didn’t suffice, and I really struggled having the camera down my throat, my body just didn’t want it in there and so the procedure took far longer than it should have. There were many other issues with the way I was handled at this particular hospital appointment (especially as I was only 17 at the time) but that’s another story.
So eventually these three tests all came back normal, which meant at my next gastro consultation I could be formally diagnosed with Cyclic Vomiting Syndrome. Over the next couple of months I tried out numerous medications until I was finally put on one that seems to control my episodes. Since being on this medication I’ve had far fewer episodes and my nausea is far less frequent.
If you’ve made it this far, well done and thank you for taking the time to read my story. If you’d like to share your own story with CVS then please feel free to leave a comment or contact me on my social media!