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Have you seen this disease before? CVS syndrome

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  • Have you seen this disease before? CVS syndrome

    Hi everyone, this is a medical concern question.

    The daughter of a good friend of mine has been diagnosed with CVS, Cyclical Vomiting Syndrome.

    http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/

    What is cyclic vomiting syndrome (CVS)?

    CVS is characterized by episodes or cycles of severe nausea and vomiting that last for hours, or even days, that alternate with intervals with no symptoms. Although originally thought to be a pediatric disease, CVS occurs in all age groups. Medical researchers believe CVS and migraine headaches are related (see CVS and Migraine).

    Each episode of CVS is similar to previous ones, meaning the episodes tend to start at the same time of day, last the same length of time, and occur with the same symptoms and level of intensity. Although CVS can begin at any age, in children it starts most often between the ages of 3 and 7.

    Episodes can be so severe that a person has to stay in bed for days, unable to go to school or work. The exact number of people with CVS is unknown, but medical researchers believe more people may have the disorder than commonly thought. Because other more common diseases and disorders also cause cycles of vomiting, many people with CVS are initially misdiagnosed until other disorders can be ruled out. CVS can be disruptive and frightening not just to people who have it but to family members as well.

    It has been going off and on for year now and seems to be getting worse.



    Has any one had any experiences with it? They have tried bp meds, beta blockers, migraine meds, brain synapsis delay meds, and more.


    Any ideas, suggestions or directions to articles, etc would be greatly appreciated.

    Thanks!

  • #2
    More info on her cycles.

    Started Jan 20, 2010 - lasted 6 days

    Apr 3rd, 2010 lasted 6 days (10 weeks since last)
    apr23rd, 2010 lasted 6 days (3 weeks since last)
    nov 30, 2010 lasted 6 days (24 weeks since last)
    apr 15, 2011 lasted 6 days (24 weeks since last)
    july 9, 2011 lasted 6 days (12 weeks since last)
    aug 13, 2011 lasted 6 days (4 weeks since last)
    nov 24, 2011 lasted 6 days (12 weeks since last)
    dec 6, 2011 lasted 6 days (3 weeks since last)

    thanks

    Comment


    • #3
      I would find an acupuncturist who also works with Chinese Herbs.

      www.acufinder.com

      IN CHINESE MEDICAL TERMS: She has a severe case of Stomach Qi Reversion and this likely involves her Wood overacting on Earth (Liver Qi stagnation).

      Those episodes seem to start on Tues.., Fri. and Sat. most often. I'd look and see what, if any, stressors line up with those dates, as well.

      -S
      The Book Has Arrived!
      The Book Has Arrived!

      Life's journey is not to arrive at the grave safely in a pristine, well-preserved body, but rather to skid in sideways, used up, worn out, and shouting, "Holy #$&^%$^... What a ride!!!"


      www.TrueNutrition.com

      2012 NPC Master's Nationals HW 5th. Mid-USA HW & Overall
      2010 NPC Jr. USA HW 4th, Pacific USA Heavy 2nd
      2009 NPC Mr. Arizona HW & Overall, Jr. Nationals HW 16th, Smoked at USA's

      Comment


      • #4
        Odd that it is so consistent at 6 days of duration. Hormonal possibly? I am simply stabbing in the dark but the consistency in duration strikes me as significant.

        Skip


        Facebook: Skip Hill
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        Use discount code "SKIP" and get your TEAM SKIP protein here: www.TrueNutrition.com/TEAMSKIPblend

        Comment


        • #5
          Thanks guys. Homon i will pass along info.

          Skip- they have done some hormonal testing bury are still working on it.

          Another consistent is the amount of number of vomits per cycle. Alto between 160 and 180 times. Her body will either speed up or slow down vomits to also end at 6 days between 160-180.

          They have her on promethanzin, gravol, Ativan, zofran, toradol, l-carnitine and interdol . Her episodes are roughly 15-30 mins apart with out meds and30-70 minutes apart with medst

          Comment


          • #6
            Homon, it is funny to see you write things like "Her wood overacting on earth", haha. I am in no way knocking chinese medicine and have no opinion about it either way, it just makes me laugh when I see you use very technical jargon that I don't understand one minute, and the next you are saying things like that which I still don't understand, haha.
            2010 NPC North Star

            Comment


            • #7
              I do not post, but this matter is important to me as I have this.

              It was described to me by a GI as like migraines in the GI tract instead of the head. My episodes as a child we recurrent in the mornings and lasted 1-3 days about once every two weeks. Me and my parents just sort of ignored it. I would vomit every morning, sometimes for up to 30 minutes, and then go on about my day. As I have gotten older my episodes have increased in duration and decreased in frequency. I have had two episodes this past year, the first for about a week. The second was for 13 days and I lost 22 lbs, from 252 down to 230/231 in the ER. It has become a lot harder for me to recover from this due to my training.

              One thing I have to say is find a good GI that will help you treat the symptoms. My understanding is the root cause is not exactly understood, but certain things are common for each person ( length of episode, triggers ( morning for me ), and how to break out of it ). My GI tried a myriad of anti-nausea drugs such as phenergan and zofran. When he watched me vomit after being injected with zofran he told me he was very confused as this medicine is supposed to make it near impossible for your brain to tell your body to vomit. He then prescribed me with a medicine, I am sorry I forgot the name, that makes your digestive tract start working in the right direction again. Normally prescribed for post-surgery.

              I am sorry if this post comes out weird, I don't normally post.

              Comment


              • #8
                Originally posted by Ken "Skip" Hill View Post
                Odd that it is so consistent at 6 days of duration. Hormonal possibly? I am simply stabbing in the dark but the consistency in duration strikes me as significant.

                Skip
                Hormonal or just shy of a week. (The work week and our perceptions of what a weekday vs. a weekend mean can dramatically affect our mood and stress levels. If I just declared the rest of the week a national holiday, it'd be like a super "snow day" for adults... )


                Originally posted by jwwhlr View Post
                Thanks guys. Homon i will pass along info.
                You're welcome!


                Another consistent is the amount of number of vomits per cycle. Alto between 160 and 180 times. Her body will either speed up or slow down vomits to also end at 6 days between 160-180.

                They have her on promethanzin, gravol, Ativan, zofran, toradol, l-carnitine and interdol . Her episodes are roughly 15-30 mins apart with out meds and30-70 minutes apart with medst
                Did she vomit roughtly the same number of times whether on meds or not?...


                Originally posted by Macho Man View Post
                Homon, it is funny to see you write things like "Her wood overacting on earth", haha. I am in no way knocking chinese medicine and have no opinion about it either way, it just makes me laugh when I see you use very technical jargon that I don't understand one minute, and the next you are saying things like that which I still don't understand, haha.
                ...and when you start catching on to what I'm saying, I'll make up another area of "expertise" just to keep you on your toes....

                -S
                The Book Has Arrived!
                The Book Has Arrived!

                Life's journey is not to arrive at the grave safely in a pristine, well-preserved body, but rather to skid in sideways, used up, worn out, and shouting, "Holy #$&^%$^... What a ride!!!"


                www.TrueNutrition.com

                2012 NPC Master's Nationals HW 5th. Mid-USA HW & Overall
                2010 NPC Jr. USA HW 4th, Pacific USA Heavy 2nd
                2009 NPC Mr. Arizona HW & Overall, Jr. Nationals HW 16th, Smoked at USA's

                Comment


                • #9
                  Originally posted by Salcha View Post
                  I do not post, but this matter is important to me as I have this.

                  It was described to me by a GI as like migraines in the GI tract instead of the head. My episodes as a child we recurrent in the mornings and lasted 1-3 days about once every two weeks. Me and my parents just sort of ignored it. I would vomit every morning, sometimes for up to 30 minutes, and then go on about my day. As I have gotten older my episodes have increased in duration and decreased in frequency. I have had two episodes this past year, the first for about a week. The second was for 13 days and I lost 22 lbs, from 252 down to 230/231 in the ER. It has become a lot harder for me to recover from this due to my training.

                  One thing I have to say is find a good GI that will help you treat the symptoms. My understanding is the root cause is not exactly understood, but certain things are common for each person ( length of episode, triggers ( morning for me ), and how to break out of it ). My GI tried a myriad of anti-nausea drugs such as phenergan and zofran. When he watched me vomit after being injected with zofran he told me he was very confused as this medicine is supposed to make it near impossible for your brain to tell your body to vomit. He then prescribed me with a medicine, I am sorry I forgot the name, that makes your digestive tract start working in the right direction again. Normally prescribed for post-surgery.

                  I am sorry if this post comes out weird, I don't normally post.
                  Thanks for the info Salcha! Hope all the best for you and if we find anything out ill relay along.

                  Comment


                  • #10
                    Now that I am home I can give you the name of the medicene that has helped me a lot. When I feel an episode coming on, or an episode has already started, I only have to take one and it breaks the cycle completely.

                    It is called: Metoclopramide 10 mg

                    Maybe you can have your friend asked their doctor about it.

                    Comment


                    • #11
                      Homon - in regards to "Did she vomit roughtly the same number of times whether on meds or not?..."

                      Yes. Same number of times , just larger time spans between vomits meaning she just vomited for longer during the day/night. Always 160-180 times in 6 days.

                      Comment


                      • #12
                        Originally posted by salcha View Post
                        now that i am home i can give you the name of the medicene that has helped me a lot. When i feel an episode coming on, or an episode has already started, i only have to take one and it breaks the cycle completely.

                        It is called: Metoclopramide 10 mg

                        maybe you can have your friend asked their doctor about it.


                        thanks, ill relay

                        Comment


                        • #13
                          Originally posted by jwwhlr View Post
                          Homon - in regards to "Did she vomit roughtly the same number of times whether on meds or not?..."

                          Yes. Same number of times , just larger time spans between vomits meaning she just vomited for longer during the day/night. Always 160-180 times in 6 days.
                          I'm not sure I follow. You wrote:

                          They have her on promethanzin, gravol, Ativan, zofran, toradol, l-carnitine and interdol . Her episodes are roughly 15-30 mins apart with out meds and30-70 minutes apart with medst
                          You lost me when you wrote, "she just vomited for longer during the day/night." Without meds are the episodes condensed during the daylight or night time hours?

                          ------------

                          I wanted to double check this. A friend had a client who's young daughter (about 2yr old) was having these same symptoms for about 6-7 mo. The docs could do nothing for her. She went to a local acupuncturist (specializes in pediatric acupuncture) and her symptoms were gone (at least for many months) after just three sessions.


                          -S
                          The Book Has Arrived!
                          The Book Has Arrived!

                          Life's journey is not to arrive at the grave safely in a pristine, well-preserved body, but rather to skid in sideways, used up, worn out, and shouting, "Holy #$&^%$^... What a ride!!!"


                          www.TrueNutrition.com

                          2012 NPC Master's Nationals HW 5th. Mid-USA HW & Overall
                          2010 NPC Jr. USA HW 4th, Pacific USA Heavy 2nd
                          2009 NPC Mr. Arizona HW & Overall, Jr. Nationals HW 16th, Smoked at USA's

                          Comment


                          • #14
                            Hi Homon,

                            Her vomiting episodes are father apart ON meds with same # of vomits a day.

                            ex. ON MEDS: starts vomiting at 3am til 9pm (30 min intervals)

                            OFF MEDS: starts vomiting at 3am til 4pm (15 min intervals)

                            So longer duration but lower frequency on meds, always being the same # approx of vomits per day

                            Comment


                            • #15
                              Originally posted by jwwhlr View Post
                              Hi Homon,

                              Her vomiting episodes are father apart ON meds with same # of vomits a day.

                              ex. ON MEDS: starts vomiting at 3am til 9pm (30 min intervals)

                              OFF MEDS: starts vomiting at 3am til 4pm (15 min intervals)

                              So longer duration but lower frequency on meds, always being the same # approx of vomits per day
                              Roger that.

                              Frankly, it sounds to me like staying OFF meds (per the above) would be favorable b/c she'd get the episodes out of the way, have more wakeful time without vomiting and perhaps more time to sleep, eat, etc....

                              -S
                              Last edited by homonunculus; 12-15-2011, 04:38 PM.
                              The Book Has Arrived!
                              The Book Has Arrived!

                              Life's journey is not to arrive at the grave safely in a pristine, well-preserved body, but rather to skid in sideways, used up, worn out, and shouting, "Holy #$&^%$^... What a ride!!!"


                              www.TrueNutrition.com

                              2012 NPC Master's Nationals HW 5th. Mid-USA HW & Overall
                              2010 NPC Jr. USA HW 4th, Pacific USA Heavy 2nd
                              2009 NPC Mr. Arizona HW & Overall, Jr. Nationals HW 16th, Smoked at USA's

                              Comment

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