A Cyclic vomiting syndrome story

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My journey began not long after the sudden death of my sister in 2002. I spend years in and out of hospital emergency rooms. Every time being told I had the stomach flu or just a virus that "needed to run its course". 

GI doctors said it was just acid reflux! 

After years of watching me go through this my bestfriend began doing research online. After the Grey's Anatomy episode featuring CVS, my bestfriend was convinced that CVS is exactly what was wrong with me. I figured if she could figure that out with a little research and watch a tv show that she could not be right. If it were that simple then all the doctors I had been seeing would have already diagnosed me. So a few more years went by. 

In August of 2014 I went into the worst episode of my life. It lasted 6 weeks and produced 2 kidney stones from dehydration. My bestfriend pulled up her research and was insistent that this is what I have! 

I went to my primary doctor and told him that I think I have CVS. He told me I could very well be right about that. He sent me to another GI Doctor who made the official diagnosis in November 2014!

Since being diagnosed nothing has changed! The doctors I see have no clue what to do! Most of the common meds given to prevent episodes, I cannot take! The only medication they give me is Zofran to try to combat the nausea. It doesn't help! 

So my journey is a struggle! Trying to enjoy good days and trying to not get too excited or stressed! When I have episodes now it's a little easier just knowing what is going on! Even having ER staff understand as best they can what is going on with me! 

For me I am lucky! I have a husband who is amazing and spends every possible sick moment at my side trying to help any way he can! I have two kids who have watched me go thru this so much that they are pro caregivers! I have support and love all around me! If I didn't, I know I would have committed  suicide by now! 

I'm glad to take this on myself! I could not imagine having to watch one of my children suffer  with this! 

My hope is that in my lifetime we will make strides against CVS. A cure would be ideal, but I know that is a long shot, so for now I would just like to see development of an antiemetic that actually works for me.

i find it slightly uncomfortable telling people about cvs. An illness involving vomitting is automatically assumed to be an eating disorder. And nobody likes to hear about your puking problems! I wish I knew people in my real life who knew exactly what it feels like to carry the puke monster inside of you!