Cyclic Vomiting Syndrome… a rare disease characterized by recurrent episodes of nausea and vomiting with no known cause or cure.

I started getting sick around age four with these mysterious episodes of severe nausea and vomiting that would last for days to two weeks at a time. I couldn’t eat, drink or hold any meds down during the episodes. My mom said that I was non-responsive and during episodes she would rush me to the ER for IV meds and fluids.

Doctors were baffled as to what was wrong with me. I saw doctors of every kind including primary doctors, cardiologists, gynecologists, mental doctors, neurologists and more. I was put through all sorts of medical tests including CAT scans, MRI scans, Gastric Emptying tests, blood work, urine analysis, sleep studies, endoscopies, feeding tubes, stomach pumping and more. I was put on so many medications– from nausea meds to depression meds.

Nothing was showing up on any of the tests the doctors were doing, so eventually my mom told me I was doing it to myself and it was mental. So I was admitted twice to two different mental hospitals around the ages of nine and 12. I was stuck in a padded blue room during one of my vomiting episodes and told that I was doing it to myself and until I stopped making myself puke, I was going to stay in that padded blue room as punishment. I ended up vomiting all over myself and also going #2 on myself before being let out of the room some five hours later.

As time went on I kept having the severe nausea and vomiting episodes up to 4 times a month for two-seven days each episode, and I continued to go to doctors to try to figure out what was wrong with me but no one knew. I had my gallbladder taken out at one point for no reason other then the doctor “thought” that was what was making me so sick. I missed up to 47 days a year at school in those years and nearly got my mother in trouble with the school board. I ended up having to graduate high school a year later than I was supposed to because of being so sick and getting so behind.

At age 23, I was watching a show called The Doctors I found out about a very rare condition called Cyclic Vomiting Syndrome, which is related to Mitochondrial Disease and I took the info to a GI doctor who didn’t believe in CVS so I found another GI doctor in that same office and finally got diagnosed after 19 years of hell and torture. I have lost five out of five jobs trying to work as a 25 year old young adult, so I applied for disability and I am on year four of fighting for it as well as Medicaid. It has been a long hard road and not one I’d wish on anyone, but I am so thankful to have answers now and although there’s no cure, I have some hope for a future with meds.

9 thoughts on “Living with the Puke Monster– Dealing with Cyclical Vomiting Syndrome”

  1. heather says:

    I have it as well. And I have been doing Botox injections in my politic muscle AMD it helps a little if you haven’t tried it talk with you g.i. doc.

  2. K M says:

    This is an absolute HORRIFIC story. I have a 27 y/o son who developed this when he was 21 years old. I felt so hopeless as a mother and my son clung to me wanting me to help him. I cannot imagine me telling him that he was self inducing this illness. That is HORRIBLE that your mom participated, as well as medical personnel, in isolating you!! SHAME on them! On a positive note. I diagnosed my son with CVS after multiple hospitalizations and diagnostics. Then I sent a letter out about CVS to all who misdiagnosed him so that they would never make that mistake again. Finally I found some research that had been done with children, but can be applied to adults as well. There is an 83% cure rate for those who take Elavil, L-Carnitine, and Coq10! I put my son on this regimen last week and he has not had one day where he has woken up nauseated which he has not had in years. He is also sleeping better. Everything has changed for him. I wish you well. And, I hope you got a HUGE apology from your mother and the horrible medical professionals who punished you!!!!

  3. Clifford Hajek says:

    My brother-in-law has CVS; he’s 65. My sister has been “all over” trying to get answers. I will pass on these comments to her to see if they have or have not been tried. Thank you so much.

  4. Andrew perry says:

    Hi I’m no doctor I have no medical experience but I do have a wife that has had this for over 2 years it is caused a lot of health issues with her and she’s lost a lot of weight lost a few teeth and after endless studying of different things on the internet YouTube blogs I literally can cure her well I won’t say cure her but I have stopped it in its tracks literally with just a touch I know it sounds weird I know it sounds strange but it did work maybe it’ll work for one of you guys it’s the vagus nerve I only know that it runs from your head and I believe it is in your stomach I looked up things on YouTube stumbled across it just by chance different techniques to stimulate and massage the vagus nerve along with pressure points on the feet the first time I tried it she had been in bed for roughly a week after she got out of the hospital which she had spent probably two weeks in there she was she was still throwing up when they released her just not as much with all the 10 to 15 different drugs they usually prescribed while watching the videos I massage the nerve starting at your neck worked away down around the shoulders jumped up to the back of her head with just where the spine meets the skull massage Tupper around to the front to The Ridges just above her eyebrows massage your face just a little just because she liked it like the way it felt I went to her feet did the pressure points she immediately started retching and threw up twice after that it completely stopped there was a look on her face prior to that it was of sickness sadness pretty much just giving up but after that last time that she threw up there was little glow of Hope of relaxation in her face I had stopped to vomiting something the hospital had never done none of the prescriptions after after that she ate kept the food down drank a little bit of tea and slept probably for a few hours which was more than she had slept before the next day she woke up in the morning and it would be what I would call a little spit up and that was it I had found the Cure or at least a temporary patch whatever it is it gave her relief and I hope it gives you relief as well it doesn’t cost anything just some time on YouTube studying which massages how to massage and the foot pressure points all for the vagus nerve I myself have anxiety attacks and I found it that also will stop an anxiety attack in its tracks I wish you all well and if this works for you let me know thank you and God bless

  5. Karen Shoup says:

    My sister is 59, and has had CVS for 12 yrs now. This time her cycle is on week 10 no food, some bits of fluids stay down. Been to ER twice, only seem worried about her potassium level. Even her Dr is doing nothing other then telling her shes severely malnourished. HELP I DON’T KNOW WHAT TO DO FOR HER. Dr says I cant just put you in hospital, yet still she is dropping weight starving to death. We’re afraid shes gonna die.

  6. Andrewp says:

    Please try and do the massage techniques i spoke of i had the same worries and was in roughly the same situation ..the vagus nerve influences quite a few functions of the body…it costs nothing but about 10 mins of time and some you tube videos ..it may cause them to vomit quite a bit for the first few mins but in my wife’s case it stoped immediately after
    .shes had one episode after that I was at work when it happened but as soon as i hot home i did it again and it stopped ..please try it and let me know how it goes

  7. Andrewp says:

    Also just fyi my wife is a diabetic and had very serious bloodpressure drops to the point of blacking out…this sickness causes depression and anxiety which also needs to be treated ..i believe the massage helps relax an overstimulated nerve ..like I posted before im no dr or heath practitioner…just a husband that was desperate to save his wife ..the drs didnt want to see her I the ER again..and I know their job is to just stabilize the patient so as soon as vitals seem good they discharge the patient..the vagus nerve foot massage/ pressure points are very important …thats what made the biggest change when it was done and it was immediate.let me know if it helps

  8. Sisly says:

    Hi I’m no doctor I have no medical experience but I do have a wife that has had this for over 2 years it is caused a lot of health issues with her and she’s lost a lot of weight lost a few teeth and after endless studying of different things on the internet YouTube blogs I literally can cure her well I won’t say cure her but I have stopped it in its tracks literally with just a touch I know it sounds weird I know it sounds strange but it did work maybe it’ll work for one of you guys it’s the vagus nerve I only know that it runs from your head and I believe it is in your stomach I looked up things on YouTube stumbled across it just by chance different techniques to stimulate and massage the vagus nerve along with pressure points on the feet

  9. Steph says:

    I’ve had CVS as long as I can remember. My first real memory of an episode was when I was 10 but my mom is convived that it was earlier. I was just diagnosed 2 years ago (I’m 31) by someone else who has it as well. I have to keep zofran (an anti nausea medicine) on me at all times. I can typically feel an attack coming and can spot some triggers (stress and excitement- basically anything too high on the emotional spectrum) but zofran stops the attack MOST of the time. I’m so sorry to all of you living with this or who have loved ones living with it. I’ve been told that hot baths help a lot of people who are having attacks but it hasn’t done a ton for me. I hope any of this helps.

Comments are closed.

X