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Reddamoors

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Reply with quote  #1 
Hi, my name is Loretta. I believe my husband has CVS, currently undiagnosed. One episode after another, no rhyme or reason. We spent last Christmas with a 4 day stay in hospital because his kidney function went down after committing for 9 hours, they released him Christmas eve and we returned Christmas morning after my parents came and picked up our twin girls. Has had endoscopy and colonoscopy with inconclusive results.
He is becoming obsessive with what he eats and doesn't eat but it doesn't seem like anything we do or don't do helps. Currently a full time college student at 36 years old and he keeps having to miss school cause he has been up since 5am vomiting and draining our hot water tank with multiple hot showers.
His doctors just give him Omeprazole and Zofran, pat him on the head and send him on his way.
Any help or direction or advise.
We are driving blind.
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ginny

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Reply with quote  #2 
A good primary care doctor, or GI or neuro can help with the tests to be run to rule out other conditions.  There are many conditions that resemble CVS.  If your husband uses Cannabis then the doctors will want him to stop for a few weeks at least in order to rule out Cannabis Hyper Emesis Syndrome.  This condition can resemble CVS and some doctors are confusing the two.

Dr. Fleisher always said that sedation is key to ending an episode as sleep resets the brain.

If your husband is not getting a steady 3 or 4 hours of deep sleep he might benefit from being admitted and sedated.  

Please review the web site for the Empric Guidelines on the four stages of a CVS cycle,there is information on tests and other conditions in the Guidelines.  There is additional helpful information also on the web site such as the paper regarding the supplements.  I pinned the latest information on the supplements and dosages on the Main Forum.  If your husbands MD approves, you might try this.

If he is cycling often there are daily meds that can be helpful.



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ginny CVSA Moderator
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Cvssufferer2457

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Reply with quote  #3 
Find a doctor with hospital privileges that will admit him until he feels all better and is eating again, and will give him hydromophone-the best pain med- every four to six hours.This will stop his episode and suffering immediately and he will be as good as new. Sometimes it only takes one shot of dilaudid to break the episode depending on how bad it's gotten and how long he has been sick..
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wynnak

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Reply with quote  #4 
Is he only Seeking help in the ER? Becasue they will just make sure he is okay to release. You need to find a GI or Neuro like Ginny mentioned to help with preventive medication after they run more of the tests that will help rule out other conditions with Similar symptoms. If you get a Dr that will be treating your CVS, you can get DSPS stuff at the college. That is how my son manages. 

Send a message to he office (cvsa@cvsaonline.org) for a list of doctors in your area. There is also a tab on the website for health providers if they are open to learning about CVS.

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Blynda
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abigaillinda

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Reply with quote  #5 
Hi Loretta,

So sorry to hear what your entire family is experiencing with these unpredictable vomiting episodes your husband is having.  Ginny and Blynda have given good advice about how to proceed using the empiric guidelines and supplements recommendations.

Related to college... My daughter is in college and has registered with the disabilities department.  She did need a doctor's letter indicating she has a disability-- CVS.  Now when she is sick during class time, she texts/emails the disabilities department, and a person from that department contacts all her professors.  So at least when she is in an episode, she has a plan about how to deal with classes so that her missing classes doesn't add to the stress she's already experiencing.

We too have been in the hospital E.R. over Christmas.  Not a fun thing for the family, but over these last ten years, because of this sickness, our entire family has rallied around my daughter and grown in relationship as we support her.  Always looking for something to be thankful for has helped relieve the mental stress.  None of us want the vomiting to define her.  She is so much more.  So much more. 


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