I happen to have a rare, chronic disease, called Cyclic Vomiting Syndrome (CVS). The name itself is terrible enough, but the effects that come along with the syndrome are even worse. It’s something that I’ve had all my life, but not to the extreme of which it has shown itself the past 8 years.
Those who have CVS, a majority that are children, will feel nauseas, get sick, and then are unable to stop. Our bodies then run a cycle of getting sick continually until the episode has run it’s course, and then we are well again. We will sometimes get sick multiple times an hour, lasting days, and often weeks, until then slowly we start feeling better again. The next part of the cycle is to then go through a recovery period, after having lost weight and nutrients to our body that are important for us to live. Then we go through a period where we are fine, and then the symptoms start coming on (hiccups, nausea, dizziness, headaches, sensitivity to light, irregular bowels and sleeping) and the cycle will start over again.
If you’re familiar with migraines at all, then you’ll know something about CVS. We have the same symptoms and the doctors are unable to detect, like in head migraines, why stomach migraines occur exactly. To get through, we do a lot of the same types of things for relief: make the room dark, low sound, take hot baths, sleep. It’s very difficult to keep anything down, even water, so much of the time is spent trying to rest between the sickness. Almost every time I have an episode, I have to be admitted to the hospital to be rehydrated. The longer that I can wait until the end of my spell, the greater the chance of it knocking the episode altogether. Sometimes I’m left with no choice, though.
I struggled not knowing what was wrong for three years before going to the Mayo Clinic in 2014 (pictured at 90 pounds above with friends I made while at Mayo and my husband Jason). The story of that struggle leading up to the diagnosis is one in and of itself, but this is a recovery story. After being diagnosed, I was assigned a specialist from KU and was administered medicine. For the first time I felt like I had been given something that had made a difference. I celebrated a year episode free last year on July 26th and was prepared to do the same this year for two years when I got sick again, on July 23rd. I thought I would never get sick again. Truth is, the doctors told me that I would. I just didn’t want to believe it.
CVS is very difficult to detect, for all tests that are done on the body show that everything is normal. There is a possible hormonal imbalance, that can be genetic (my father and cousin also has this disease), which makes finding a cure difficult. This is a disease that dates back to the 1800’s, and in some studies has been shown to affect one in every two thousand individuals. It’s been stated that there are probably more people who are affected by this disease, but it is often misdiagnosed.
I hope to work to find not only a cure but support for those who are living with this nightmare of a disease. Especially considering children are the ones affected the most.
My daughter has this but is able to control somewhat with timely administered, very strong anti nausea meds. I suspect my brother had this as well. I remember several episodes throughout his life, though he was never diagnosed. My grandmother had and my sister has migraines. I suspect some sort of genetic link but I wish there was more research.
Yes, they say that it travels with the mother’s line, but my father is the one that has it. My grandfather was also treated with the same medication that we have been given while he was in WWII. They believed that he suffered from ulcers, but that could easily be mistaken for stomach migraines. Thanks for sharing, Jackie. Sorry that your family suffers from this as well.
I was finally diagnosed at KU almost a year and a half ago. Dr. Bonino?
My doctor is Sheila McGreevy. She’s wonderful. I don’t know Dr. Bonino, but hope he takes good care of you!
Is this doctor in Milwaukee? My cousin is a young lady battling this illness.
No, this doctor is in Missouri. You might talk to your cousin about the similarities the illness has with migraines. I’m being treated for migraines now and am feeling a lot better.
I would love to know what medication Mayo Clinic put you on that kept the beast at bay for one year?
Hopefully your episodes will be very infrequent
Hello Gina, I’m currently taking mirtazapine that has helped me greatly. As soon as I started taking it, it felt like night and day. Immediate change. I am not on a high dosage, although I believe my body has adjusted to my current dosage, so I’m having it increased. It actually kept me from having an episode for almost two years!
Are you at the chululli glass gallery in Seattle?
No, we were at the Mayo Clinic in Rochester, Minnesota, where they have many of his pieces of work on display.
Firstly I would like to thank you for your post. I am always trying to find how people cope with their attacks/episodes to better help my son.
My son (8) has suffered from this hideous condition since he was 20 months old. We (his parents) have noticed that his episodes occur once his stress (which sounds bizzare, trust me, i know) and or excitement has ended. So far we have been told that he can possibly try a migraine preventative but as most things, it has some pretty harsh side effects. I am just curious, have you ever had blood glucose checked during an episode?
TIA
Thank you for taking the time to comment. I’m so sorry that your son suffers from this disease as well. My doctor is now treating me for migraines and the disease has actually been referred to in the past as abdominal migraines. This would explain why your son tends to get sick after excitement of some kind. When I was young, I used to always get sick on Christmas and before going onstage in a play performance. Now I still get sick around my birthday and after large events that I’ve organized. My doctor has just started me on a medicine meant to treat migraines. So far, it’s working! I feel a lot better and have noticed a considerable change. You should my post about the connection of CVS and migraines here: https://courtneyscole.com/index.php/2017/09/27/cvs_abdominalmigraines/