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ChrisVicky

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Hi, we have just received a potential diagnosis of CVS and found this support site.   I was wondering if our experience is similar and sounds familiar.   Not panicking, we have dealt with severe illness in our family already, my spouse has a rare blood disorder that required several expert visits around the country to pin down and find successful treatment.

Any way, right now we are in the hospital with our son, 19 years old, college student & athlete, who is in his third episode of violent vomiting, nausea and pain in three months.   First episode was in early November, and has been like clockwork since, 6 days of violent vomiting, pain and nausea, with no ability to retain food, every 5-6 weeks.   He has lost 15 pounds, although has been down as much as 25 (from 170 to 145) during the worst of it.  This round we had him admitted to the hospital after the first night.   The attending GI doctor has offered diagnosis of CVS, but he isn't an expert on the syndrome.   Kid has actually been abnormally healthy his whole life.  Good student, athlete, plays soccer at school.  Not great eating habits but not very different from most kids that age.  No history of GI issues or migraines whatsoever.   Had no GI or other health issues as a child outside of normal bouts of flu and strep.   No history of migraines in family.   He is a casual marijuana and alcohol user, but never to excess.   Does suffer from some anxiety, and not currently in therapy.   Has been cleared of other GI and other health issues through endoscopy and ultra sound.   Blood and endocrine functions and levels totally normal and healthy.  After three days in hospital, an alternating med program of IV Zophran & Ativan, alternated with IV Phenergan & Torodol have stopped the vomiting, although also knocked him out.   He has eated nothing since Friday night (today is Monday).  

Just wondering if this seems familiar to everyone.    We have accepted that a diagnosis of CVS or Cannabinoid Hyperemesis is likely here, but wanted to cross check against the experiences of the forum here.   Any thoughts on diet & treatment when episode ends?  He is certainly not going to smoke MJ again, and we have been prescribed L-Carnitine and COQ-10 to treat his belly, but wondering what else we can / should do?   Go vegan?   We are currently looking at a trip to Wisconsin to get in front of Dr. V, bring every resource to bear on this as quickly as we can.

Sorry for the long post, just looking for some answers and help.   Thanks so much for all the participants and thanks for this board.

Chris

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ginny

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Reply with quote  #2 

Diet changes are not the cure for most who have CVS but certainly there are those who do have food problems and might not actually have CVS.  Vegan is a diet I don't recall discussed on the MB but the Paleo has been followed as well as gluten free.  

Simplest thing to start with is to have him agree to do his best for regular hours at college--not the easiest thing with kids who usually start to party at 11 PM, drink, smoke marijuana and otherwise experiment (as kids will do).  The Empiric Guidelines, on the CVSA web page, discusses regular sleep hours weekends and weekdays.  Pretty hard when kids cram for exams all night.  

Keep a journal.  Have him stop smoking.  Get regular rest. Try to do what he can to keep anxiety low (slow deep breathing, meditate-- not easy stuff).  Speak to someone about his anxiety.  Good stress(vacation, party) is often more of a trigger than "bad" stress (exams).

Often a kidney ultrasound, a head MRI, additional blood work during a cycle for metabolic possible connections to symptoms. There are former CVS patients who later learned they had waxing and waning appendicitis, Addisons Disease-- and more.  Never assume a cycle is just a cycle.  Other conditions can be coexistent with the CVS and either trigger the episode or complicate the episode.

Sleep resets the brain so being sedated during a cycle is thought to be helpful to stop the cycle 

Lots of suggestions on CoQ10 and Carnitine on the message board and the latest suggested dosages are pinned to the Main Forum.

After CoQ10 is established, Vitamin B complex and possibly extra Riboflavin are suggested.  Check these over the counter products carefully for add-ons such as Vitamin E or soy.

I hope just stopping the cannabis will be your answer.


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ginny CVSA Moderator
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wynnak

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Reply with quote  #3 
Ginny, great info.

I will mention that although he may be only a casual user, it is hard to know the amount of THC is in what he maybe using there are no regulations on these things. Even the MJ gummy bears that parents are giving their kids are reported to contain significantly more THC than they are said to have. Hard to tell what you are getting. There are statins being developed that are even higher in THC. CVS patients may just be more likely to have issues. So I suggest having a bit more testing to rule out other conditions as well.
I would suggest that the MJ brcstopped for at least 3 months to see if that was what triggered the episodes.

Pleas keep us updated.

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ChrisVicky

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Reply with quote  #4 
Hey Blynda, thanks, I am haphazardly posting multiple replies on various subjects.  He is going to stop MJ for at least 3 months.   We had a full panel of blood and urine tests, along with an ultra sound and endoscopy to rule out other causes.   At this points, his episodes have run 3 times on a pretty consistent time frame, every 4-5 weeks three times.   The first two were 7 days, but this round we got him admitted to the hospital with IV Zophran after about 8 hours of vomiting (we would have gone sooner but it was late night and he didn't tell us - the mind of a teenagers is extraordinary).   Fingers crossed, but the extended hospital stay and IVs appear to have shortened this episode.   I will keep the group updated.

Many thanks.   C.

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ChrisVicky

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Reply with quote  #5 
Quote:
Originally Posted by ginny

Diet changes are not the cure for most who have CVS but certainly there are those who do have food problems and might not actually have CVS.  Vegan is a diet I don't recall discussed on the MB but the Paleo has been followed as well as gluten free.  

Simplest thing to start with is to have him agree to do his best for regular hours at college--not the easiest thing with kids who usually start to party at 11 PM, drink, smoke marijuana and otherwise experiment (as kids will do).  The Empiric Guidelines, on the CVSA web page, discusses regular sleep hours weekends and weekdays.  Pretty hard when kids cram for exams all night.  

Keep a journal.  Have him stop smoking.  Get regular rest. Try to do what he can to keep anxiety low (slow deep breathing, meditate-- not easy stuff).  Speak to someone about his anxiety.  Good stress(vacation, party) is often more of a trigger than "bad" stress (exams).

Often a kidney ultrasound, a head MRI, additional blood work during a cycle for metabolic possible connections to symptoms. There are former CVS patients who later learned they had waxing and waning appendicitis, Addisons Disease-- and more.  Never assume a cycle is just a cycle.  Other conditions can be coexistent with the CVS and either trigger the episode or complicate the episode.

Sleep resets the brain so being sedated during a cycle is thought to be helpful to stop the cycle 

Lots of suggestions on CoQ10 and Carnitine on the message board and the latest suggested dosages are pinned to the Main Forum.

After CoQ10 is established, Vitamin B complex and possibly extra Riboflavin are suggested.  Check these over the counter products carefully for add-ons such as Vitamin E or soy.

I hope just stopping the cannabis will be your answer.



Ginny, thanks very much for all this.   We are pushing all of these strings, and consulting with Dr. V by phone today.    I am hopeful stopping cannabis will be the solution but we aren't taking anything for granted.   I will post updates as they come.

C.

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wynnak

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Reply with quote  #6 
Look forward to hearing how he progresses.
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Blynda
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