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david

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Reply with quote  #1 

What causes an episode to happen? is it physical? is it something in the stomach? is it neurological? or psychological? 

What in the body causes it to continuously vomit? 




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scooky1

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Reply with quote  #2 

David
Wow, yes to all of the questions you asked, the people who run this board have more answers and they will be right with you. if you have cvs I am verry sorry! I just had to go outside and walk before it happened. it is such a bad thing to live with, the moderaters here are great. good luck. be well, Steve

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ginny

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Reply with quote  #3 

Hi David, Steve is right-- all of the above for many.  We don't really know for sure what CVS is and what triggers a cycle.  Adult onset might be different than childhood onset.  The doctors have been inclined to consider a mitochondrial disorder--not disease-- and when this was first being considered, it was thought all mito was maternal inherited.  Now we know the paternal side can sometimes be a factor as well.

Many with CVS have a family history of migraine headaches.  CVS seems to be a functional condition that can only be diagnosed after ruling out other conditions that have similar symptoms.

There are those who are first diagnosed with CVS and later learn they have a different medical problem.

For many, using a migraine approach to management is helpful.  Regular sleep hours during the week and weekends, possibly staying away from typical migraine trigger foods, keeping as unstressed as possible (especially excitement) can be helpful.  For some, managing hormonal fluctuations helps.

There is helpful information archived on this message board and also on the CVSA web page.  Good starting resources are the Empiric Guidelines (adults and children), 41 Adults, the NASGHAN for pedi guidelines (an adult version of this study is now underway), the Supplements in CVS (anecdotal study).  

Good luck, keep us updated about how you are doing.


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ginny CVSA Moderator
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david

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Reply with quote  #4 
What other things need to be ruled out?

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wynnak

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Reply with quote  #5 
The human body is a complex system. Being that most of your organs are in the area in question... there are quite a few things that needs to be ruled out. But if it is the vomiting or the pain.. those are symptoms of several other conditions. They run tests to rule out any other conditions before diagnosing it as CVS.  Depending on your main symptoms and presentations.. could be scopes, CT, MRI, Hida Scan, bloodwork, etc.. there are quite a few.. Barium swallow.. 

Have you done any of these yet?

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ginny

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Reply with quote  #6 
The Empiric Guidelines and some of the other research articles have a list.  From my memory, UPJ disorder (an ultra sound for that), mito or metabolic problems (metabolic best tested during a cycle), brain problems (tumors, cysts, pressure, malformations & more), endocrine problems, appendix, gall stones, liver illness, intentional blockage, rare disease such as Wilsons.  There is a long list of causes of the pain, vomiting, nausea, exhaustion.  Even some of the medications that add to slowing of the gastro track can have a secondary effect of nausea and for some, vomiting.
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ginny CVSA Moderator
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david

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Reply with quote  #7 
Quote:
Originally Posted by wynnak
The human body is a complex system. Being that most of your organs are in the area in question... there are quite a few things that needs to be ruled out. But if it is the vomiting or the pain.. those are symptoms of several other conditions. They run tests to rule out any other conditions before diagnosing it as CVS.  Depending on your main symptoms and presentations.. could be scopes, CT, MRI, Hida Scan, bloodwork, etc.. there are quite a few.. Barium swallow.. 

Have you done any of these yet?


 I've hat a abdominal CT scan and Xray. I've had an endoscopy. I've had a brain MRI. none of these showed anything out of the ordinary.

I don't have stomach pains. I don't think I have migraines. Some episodes start with a dull headache, but I'm not sure if it's the headache that starts the episode or that the headache triggers my anxiety which triggers an episode, because now i associate a headache with an episode.
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cableguy

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Reply with quote  #8 
I don't have headaches during the onset of an episode. It just hits ne. It's like a light bulb goes off and I know that feeling in my stomach and at the point I take Zofran, and all other meds to abort. Sometimes I am lucky. Most times not. I dont have trigger foods. I have had it roughly 29 years now. Hang in there and good luck.
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wynnak

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Reply with quote  #9 
There's a wide variety. My son's activity of headaches just increase. Not that they trigger or that he has them with his episodes just things to think about and watch for. So people have them. So don't. It is something that has helped us pretreat him.
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wantanswers4S

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Reply with quote  #10 
I am new to this message board but it was suggested that I ask a question that someone might have an answer to.  My daughter who is 24 now and has had this illness (not diagnosed yet, but really sounds like it) for most of her life.  I have pediatrician records from 12 months and up that look like it.  Anyway, she always begins with a sore throat (as she describes is "not a "normal" sore throat like with a cold, but feels very, very inflamed and constricting of airway --makes me super dizzy and I start getting nauseas and the throwing up begins"). Has anyone heard of someone having a sore throat with CVS? 
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ginny

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Reply with quote  #11 

Reflux or maybe esophageal spasms might be a reason for the sore throat.  She will need to be tested to find out if she has CVS.  Must be very frustrating to have her sick for most of her life and not have a diagnosis.

Try reviewing the Empiric Guidelines and some of the other research on the CVSA web site.  

There are some who have POTS and CVS which could be a reason to be dizzy.  But sore throat, dizzy, nauseated make me wonder about her inner ear?  After so many years she has probably had most everything ruled out but it might be worth a consult with an ENT.


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ginny CVSA Moderator
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cableguy

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Reply with quote  #12 
I never got a sore throat and I have had CVS for 29 years. Sounds like Ginny hit the nail onnthe head. See a ENT first. Might just save you alot of time and money. Good luck
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