About Me and Cyclic Vomiting Syndrome

Do I look “healthy” to you? Do I look “normal” to you? On most days, I’d say that I’d superficially fit under both of those descriptions. That’s the trouble with an invisible illness – others can’t always see it…

The picture above portrays me at my very best. I’d just hiked over 5 miles, to an elevation over 8,000 vertical feet, to the tip-top summit of Mt. St. Helens. Climbing and standing atop a massive and active volcano is one of my happiest physical and mental accomplishments to date. And, luckily – I felt great doing it! That was July of 2016. However, it hasn’t always been this way… Nor is it always still that way.

The past 10 years have been quite a journey. One which continues to this day. One which I have learned, worked towards healing my body and mind, and accomplished gradual yet extraordinary results from my efforts. I will endeavor to continue to do this forever. I invite you to read about how I deal with this monster of a chronic illness, and I hope you take away something that will help you or a loved one who is struggling to overcome this debilitating disorder.

Cyclic Vomiting Syndrome, or CVS, is a relatively rare medical disorder with which I was diagnosed in 2008. I began having episodes in 2006 when I was entering my final and clinical year in vet school. It took 1 ½ years along with countless appointments and tests to finally get the diagnosis. I had never heard of CVS before my diagnosis, and neither have very many doctors, due to the lack of knowledge of the disorder. It MIGHT have been given a paragraph’s worth of space in a FEW medical textbooks in recent years. Thankfully, awareness of the disorder is spreading, and I found a doctor who recognized my symptoms.

It sucks. The cause is unknown, the cure is only a dream of ours, and treatment in is complicated and different for each individual that has the disorder. It takes a long time to figure out what will help each of us. Proposed and likely factors to having CVS include chronic, severe anxiety, mitochondrial disorders, hormonal and/or dietary imbalances, and pathways related to migraines. It is neurological in nature as opposed to gastrointestinal – although we are learning that the brain and gut are linked in ways we didn’t appreciate before. It is a form of dysautonomia. You can liken it to a seizure of the brain and stomach, which induces vomiting.Only, unlike with epilepsy – we’re fully conscious and aware of what’s happening. (Here’s a great book about that: The Second Brain: A Groundbreaking New Understanding of Nervous Disorders of the Stomach and Intestine by Michael Gershon) You can read about the Enteric Nervous System by clicking here, and about the Gut-Brain-Axis by clicking here.

Now imagine: You begin to feel nausea. It grows. It feels like someone has grabbed your stomach with their hand, and they are squeezing and clamping down on it as hard as possible. Now you can feel that nausea in every other cell of your body in addition to your stomach. You are paralyzed with nausea. You cannot do anything but lie as still as possible and attempt to breathe the nausea away. It does not subside. You begin vomiting…

Usually when a person vomits, the nausea typically subsides somewhat, or completely, for a period of time after person has vomited. Not with CVS. The nausea does not stop after vomiting. It does not subside. It does not ease. It just keeps right on making you feel paralyzed with nausea. Making you feel that you  must vomit constantly. The intensity of the nausea is thought by many to be the greatest on the planet. There are rumors of cancer patients with CVS, who claim that nausea from chemo is nothing comparatively.

The intensity of the nausea is debilitating physically and mentally. I routinely fall into a “conscious coma” where I am vaguely aware of my surroundings, but don’t respond to them regardless of most stimuli. My mind turns inward, to the primitive and instinctual depths of myself which are involved in survival, and I remain there. The effort of response or emergence from within usually induces nausea and vomiting of a greater intensity, so I avoid it. I cannot stand straight, and when I attempt to walk I’m unable to rise above a 90 degree angle and will typically vomit quickly from the effort. I must carry a bucket when I attempt to move from bed to toilet. (Did I mention it’s coming out the other end also? At nearly the same frequency?)

Now that the vomiting has begun… Imagine: In addition to the relentless nausea comes relentless retching. When there is nothing left to vomit, the disorder does not care. I will  dry heave violently at the same frequency as I was previously. That frequency is known for me to begin anywhere from every 30 seconds, and gradually subside over the next 24 hours to a frequency of about every hour. It becomes painful after a few hours. Acid begins to erode my esophagus and teeth. Muscles begin to cramp from dehydration and acid-electrolyte imbalance. The thirst is intense and overwhelming, even in the face of the relentless nausea. My body desperately needs hydration. So I sip what I can. Ice chips. Diluted electrolyte drinks. Straight water. Whatever goes down well. No matter, because it always comes right back up. Just give it a minute or two…

Here are a couple of pictures of me after sedation in the ER several years ago. I still look half-way decent in this picture because the episode had lasted only a few hours by the time I was treated properly.

Finally sedated. It will be over soon.

Finally sedated. It will be over soon.

Me after sedation. Ponytail decorated with a puke bag for some much needed comic relief :)

Me, unconscious after sedation. My ponytail was lovingly decorated by friends with a vomit bag for their own much needed comic relief. 🙂

Imagine this happening consistently and without fail, for 5 hours – or 12 hours – or 24 hours – or 3 days – or 5 entire days!!! Not one drop of liquid stays down for longer than a few minutes. Not one morsel of food enters your body. For 5 days!! (That is my record to date.)

I typically become dehydrated and electrolyte depleted within a few hours. Most of the time I keep that in check with the small amount of fluid likely absorbed by my constant attempts at hydration. Sometimes it’s necessary to visit the ER for IV fluids, electrolytes, and medication to attempt to stop the vomiting and nausea. But the medications rarely stop it. Nothing will stop my nervous system from over-firing once it begins. Mostly, I’m there to stay hydrated and prevent electrolyte imbalances from becoming dangerous. I’ll keep right on vomiting in everyone’s face even after they have just shot me up with a terrifying IV medication which should knock out an elephant. Then, in misery and desperation, I’ll cry and beg for any drug in the universe, in any dosage, which will give me relief. (I’ll even secretly wish for death.) This causes people to think I am a drug seeker in the ER. Let me tell you – if you are perceived as a drug seeker by ER staff, you will not be treated kindly. I have been in those “perceived” shoes SO MANY times. It isn’t a fun experience.It causes me to avoid the ER like a plague.(Hopefully, never to my detriment.) And sadly, amidst that situation, I’ll likely show unkindness in return…

Some people who are educated to the disorder can be a wonderful source of support. Others can be judgmental and accusatory of things ranging from drug seeking to making it all up in your head. If you have ever had the misfortune to see me in a full-blown CVS episode, you know that it isn’t possible for anyone to do that to them self. And, if you know me personally, you also understand how ridiculous that is. That isn’t me. This disorder isn’t me. It’s just a part of me. A part of me which I hate and fear.

CVS is a real disorder. Despite anything you might hear to the contrary. The research is in its’ infancy, but we are making leaps and bounds every day. It has affected my life in the most extreme way. It forced me drastically alter my career path. It tore me from the path I wanted to take, and forced me to live and work in an entirely different way than I ever imagined I could.

I have altered my diet and lifestyle to accommodate the disorder and help to have as few episodes as possible. When I first began having episodes in 2006, they occurred nearly every month, and lasted an average of 3-5 days. Now, nearly 10 years later, I still have episodes that sometimes occur as frequently as 2-3 weeks apart, however they aren’t nearly intense as the ones from the earlier years. And – sometimes I go several months without an episode! During 2016 I only had 5 episodes which I was either able to abort, or which lasted less than 24 hours in my home. I haven’t been to the ER in since 2013! That’s HUGE!! The difference is unfathomable to someone who hasn’t experienced it.

I could write about this all day, but I just wanted to paint you a little picture here. Check out the other pages on this blog for further information and more details. You’ll also find information and links about the disorder, as well as some information and links from the Cyclic Vomiting Syndrome Association. Also, be sure to read my blog posts, which will be updates about my episodes and coping with the illness.

I’m not embarrassed to talk about my disorder. It might be gross, but it is MY disorder and I didn’t ask for it. I have the right to talk about it just as others do about their illnesses. I refuse to sugar-coat my story, because that leads to stigma. Feel free to ask me any questions at all about it. Don’t be shy. Please help us spread the awareness that this disorder is horrible, real, and vastly unknown. Spreading awareness to doctors and ER staff is the most helpful thing that could be done to help us until we can find the cause and cure!

 

85 thoughts on “About Me and Cyclic Vomiting Syndrome

  1. Anonymous says:

    Hi Natalya,

    This may be a bit lengthy so read it at your leisure but I’ll give you a complete rundown of my experience with Cyclical Vomiting Syndrome and I hope that it may help you.

    I’ve never been able to abort an episode with Zofran alone. As you said the violence and severity of an episode comes on so quickly that Zofran can’t stop it alone in my case and yours. As I had stated it’s absolutely key to treat your cycle immediately at the onset. Mine were almost always in the early morning usually anywhere between 4:30 to 7:00 am. The very first time a had a cycle I woke up completely alert and actually felt great and had a positive outlook for the day ahead. Within no more than ten minutes I was overcome with severe nausea followed by irretractable vomiting and unbelievable abdominal pain that put me in the emergency room. I agreed with the doctor that I had food poisoning because I had Jack in the Box the night before. I was back in the ER 3 days later with the same symptoms. The doctor that time said I had a stomach virus. I was back 3 days later and this time they hadn’t a clue and sent me to a GI doctor. Much later on I found out that they had interrupted the cycle and not broken it.

    The GI doctor ran some tests and said it looked like Cyclical Vomiting Syndrome. That was the first time I had ever heard of CVS. He went on to say that I was probably smoking too much marijuana. I told him that I hadn’t smoked weed in over 25 years and my blood work and urine would show that. This guy was a complete dope but had half-assed diagnosed CVS so I researched it thoroughly. I’m a retired detective and investigate things tenaciously. Thus began my foray into the world of CVS.

    I would get an episode or cycle every three months like clockwork. I was in the ER over 30 times the first year. I would bring the empiric guidelines on the treatment of CVS with me each time and not one doctor even glanced at them. A consistent problem that I faced in the ER was being labeled a “drug seeker” because of the pain I’m in, having a hard time articulating what’s wrong with me and telling them that I need Dilaudid to treat the abdominal pain. This is a common problem with CVS patients in the ER. They also often assume that you have Cannabinoid Hyperemesis Syndrome. This is a medical condition that people who smoke a lot of marijuana develop. I find it quite ludicrous that the ER staff are familiar with this Syndrome and are ignorant about CVS.
    Once they take blood and urine and see that there is no THC they just assume that you are a drug seeker. It’s awful.

    I found a better GI doctor who was familiar with CVS and finally diagnosed me with it after more tests that excluded other conditions.

    I had two doctors who recommended medicinal marijuana for the nausea. There are two different strains of marijuana, Indica and Sativa. Indica makes you relaxed and mellow, that’s what you would want to use.
    I felt the nausea that signals my cycles coming on and smoked a small amount and it stopped the nausea right away. Another time I used it, it exacerbated my condition because I had a coughing fit. I then used the oil which worked extremely well. Another very effective way to use marijuana, specifically Indica is to vaporize it.
    I can’t use the cannabidinol oil or any other marijuana because I live in a Texas now. I’ve been in remission from the CVS for quite some time with the exception of that one episode the day after Christmas which was coupled with a virus of some sorts. I’m hopeful that that remains the case as it’s been a great relief and it appears that though the ER staff here is knowledgeable with CVS, they won’t treat it with the lorazepam and Dilaudid that breaks the cycle.

    I keep up to date on the various treatments of CVS on a message board that’s connected to a hospital in Wisconsin that researches and treats CVS. They also have a new forum on the use of marijuana. The main website is cvsaonline.org There is a ton of information and links on that main page and you can access the message board there or go to cvsa.websitetoolbox.com you can also find the empiric guidelines if you go to the research tab on the main page and in the drop down menu you can click on empiric guidelines for treatment.

    I wish you luck with this awful condition and with the medicinal marijuana in either the oil or leaf form.

    Like

  2. Anonymous says:

    Sorry, I was just reading over my post, I’ve been to the ER a total of about 30 times since I had my first episode in January of 2012 not in the first year, that was about 10 times until it was properly diagnosed.

    Like

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