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Posts: 9
Reply with quote  #1 
Okay, so I'm pretty sure that I have CVS. I've been having episodes for about 4 years now. They're always the same. I'll just bullet point symptoms and triggers below to make it easier to read...
- always start between 1130pm and 130am.
- anxiety and excitement are triggers (the night after a party or before a big exam)
- chills with onset
- painful, almost unbearable nausea
- typically a "swimmy" head. Almost like I've had too much to drink.
- attempting to sleep makes it even worse
- reflux & burping
- gastric emptying with onset

It has gotten better while on certain birth controls, but I have issues with them in other ways. The more that I look back on life, I'm pretty sure I've been dealing with this since I was a child, but it was less severe. It was usually only when I was sick or very upset.

My question now is, what helps? I know there are a lot of treatments, but I'd love to know what specifically has worked for you all. Also, who do I see first? Neurologist, obgyn, GI specialist?


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Posts: 4,592
Reply with quote  #2 

Hi Emily, welcome and I am sorry you are struggling with possible CVS.

I don't think it matters too much which specialty you start with but your PCP might prefer a referral to a gastro.  If that does not seem to work for you, your next step is probably a neurologist.  We did get some excellent advice from a gyn as well.

With the nausea and pain being primary, you might be more abdominal migraine than classic CVS.

It is not uncommon to get some relief with BC medications.

Please review the CVSA web page, the Empiric Guidelines for the Management of CVS, the Pedi NASPHGAN paper, Dr. Boles information on supplements.  You might get a better idea how you fit into the various profiles of CVS.

The doctor who starts to diagnose you will be ordering tests to rule out other conditions.  

Sleep is very important to "reset" the brain so I don't know why sleep makes you worse.

It is very possible you could actually have a similar condition to CVS.

ginny CVSA Moderator

Posts: 5
Reply with quote  #3 
My gastroenterologist had the best information that I found useful to my condition.
I have no luck "preventing" an episode by any means, but during an episode I use gravol suppositories. Though I won't sleep, it helps take the edge off while before I need to go to emergency.
I also really enjoy ice chips. Helps me feel like I'm a little more hydrated.

Hope that is some kind of help to you.

Take care.
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