Discussions By Condition: Rare Disases


Posted In: Rare Disases 3 Replies
  • Posted By: Anonymous
  • March 24, 2006
  • 04:38 AM

I am 26 years old and I am almost 100% sure I have CVS. I believe it is triggered by my period. I wake up sick in the morning as though I have morning sickness. My vomiting started when I got pregnant in late 2004. I was sick during the entire pregancy and was admitted into the hospital 8 times. I delivered a healthy baby girl, 5 weeks early. I was healthy for about 6 months after she was born, but I have since been having episodes about every six weeks. I just got out of the hospital today and I found out about CVS during this visit. My cycles usually last about a week, sometimes two weeks. I cannot keep even water down and my stomach feels like I've been poisoned. I am constantly dry heaving and vomiting bile. The only relief comes after I drink a glass of water and then I'll vomit and the pain will subside for a few minutes. The pain in my stomach and the stress of another hospital visit are unbearable. When I feel like I can no longer stand it, I go to the ER and wait to be seen by a doctor. By then I am so dehydrated and lethargic that I have to sometimes have an IV put in my neck (after the nurses stick me four or five times in my arms with no luck). Usually IV fluids and Phenergan help, along with sleep, eventually. Every time I go the hospital they give me X-rays, CT scans, sonograms, pregnancy tests, MRI's and the list goes on. As soon as the epidsodes pass, I am completly back to normal, full of energy and hungry as ever. As a result of CVS, I cannot work or go to school full time. I have a daughter that I cannot take care of all the time. My only hope is that my doctors will learn about CVS so that they can make a diagnosis and start treating me correctly. I am not anorexic! I am not making myself sick on purpose! If you have CVS and can offer advise, please respond.

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3 Replies:

  • My 6 year old son has CVS. It sounds as if you do also. Have you checked out the CVS website www.cvsaonline.org? I imagine it would have alot of usual information for you and your doctors. Good luck and God Bless.
    Anonymous 42789 Replies Flag this Response
  • It sounds as if you do, My son is 27 and he is battling with CVS. My advise is to consult with Dr David Fleisher at the University of MO
    Anonymous 42789 Replies Flag this Response
  • Hello, I just found out about CVS, and am just looking for more info on it. My 3 yr old son has presented with recurrent vomiting episodes, usually every 1-2 months since he was 2 yrs old. It only occurs at night, and usually lasts for about 6-12 hours each episode. He is fine before and fine after. It is so scary for us and for him, his behavior is just completely different than normal. He screams, is inconsolable, and will not respond to us. We can' tdo much but cover his bed and the floor around it with towels, and just monitor him. We've tried giving him medicine, water, anything, and he usually refuses. It seems time needs to pass and then after the 6 or so hours, he'll sleep for a few hours and when he wakes up, he announces "I'm not sick anymore". It's just so weird. It doesn't matter what he eats. He has no food allergies. And it's always at night. The next day we are bewildered and he is fine, like nothing happened. I'm encountering some skepticism from family (my father is a doctor) and just wondering what kind of specialist or tests I can request be done. Also I'm wondering if this is the type of condition that can just be diagnosed by offering treatment, and if the treatment works, the diagnosis stands. Know what I mean? I appreciate any info or assistance. Thanks!
    Anonymous 42789 Replies Flag this Response
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