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rachel0421

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Reply with quote  #1 
Hi. So I am a 20 year old college student and I think I have CVS. When I was around 12 years old, I had vomiting spells for around 6 months. They would just come out of nowhere with no warning signs so, after several uneventful doctor's visits, it stopped and I moved on. Last year, I transferred to a new College and began to experience the vomiting spells again. From October-January, I would having puking spells for 12-18 hours. Beforehand, I experienced these terrible burps. They weren't very loud but they tasted so terrible that I could hardly function. Then, the puking would happen along with terrible stomach pains that feel like really bad PMS cramps. Last November, I actually woke up in so much pain that I called 911 because I thought my appendix burst. The Emergency Responders actually refused to take me to the hospital at first because they thought I had a stomach bug (as I was kneeling over in pain, crying, and vomiting right in front of. So rude). But, to my luck, I've been good since January!
But......Just last week I got a stomach virus from my sister and I think that triggered the CVS? I started having the exact same episodes again but this time it felt even worse. I think my triggers are:
-Stress
-Diet
-Sleep 

I know there are certains foods like red meats, greasy foods, and alchohol that mess with me and whenever I'm super stressed out or not sleeping right, the episodes come back. But, I'm a little overwhelmed and need help figuring out preventive measures, supplements, and diet. I would love some advice and maybe some feedback from other people dealing with CVS? 

Thanks! [smile]


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Rachel Lois Forsythe
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wynnak

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Reply with quote  #2 
Rachel,

Welcome. 

First, I would ask for a Doctor list from the CVSA office. Find a GI or Neurologist that are familiar with CVS. Have the tests run. I know that is an issue for a lot of people, but it really is necessary. There are 100s of conditions that have the same symptoms. Literally 100s. You need testing to make sure there is nothing else wrong. I have seen people that have bypassed testing and in the long run, there was something else wrong. So, I can not emphasize this enough. Also, the red meat, greasy foods and alcohol issues could be signs of intestinal infections.. not to say that you don't have CVS, please don't take it that way. But, I have seen so many people suffering because their doctors cut corners, the tests were run wrong, or the tests were too expensive.. that people have suffered unnecessarily. Getting the doctor list from the office, can help you find a doctor that is familiar and has working knowledge of CVS. So they will keep that in mind as they work on the testing to rule out other conditions. 

The issues like stress, and sleep are common among CVS patients. Coping strategies for stress, guided breathing, mediation are ways people have used for stress. My son has a set sleep schedule. So, you may try something like that to help out with symptoms. Probiotics are used by by some patients as well. People have tried a variety of diets for CVS symptoms. There are varying degrees of helpfulness for diet changes. If you have migraines, doctors recommend Low Fodmaps diet. 

Join our monthly Support call for helpful information and coping discussions. Tips and hints that work for others. Next one is in December. 

You may search for the burps and look through the archives regarding that. There are people that have that as a sign of their episodes starting . 

Hope this is helpful.

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Blynda
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kitchen_chick

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Reply with quote  #3 
Quote:
Originally Posted by wynnak
Rachel,

Welcome. 

First, I would ask for a Doctor list from the CVSA office. Find a GI or Neurologist that are familiar with CVS. Have the tests run. I know that is an issue for a lot of people, but it really is necessary. There are 100s of conditions that have the same symptoms. Literally 100s. You need testing to make sure there is nothing else wrong. I have seen people that have bypassed testing and in the long run, there was something else wrong. So, I can not emphasize this enough. Also, the red meat, greasy foods and alcohol issues could be signs of intestinal infections.. not to say that you don't have CVS, please don't take it that way. But, I have seen so many people suffering because their doctors cut corners, the tests were run wrong, or the tests were too expensive.. that people have suffered unnecessarily. Getting the doctor list from the office, can help you find a doctor that is familiar and has working knowledge of CVS. So they will keep that in mind as they work on the testing to rule out other conditions. 

The issues like stress, and sleep are common among CVS patients. Coping strategies for stress, guided breathing, mediation are ways people have used for stress. My son has a set sleep schedule. So, you may try something like that to help out with symptoms. Probiotics are used by by some patients as well. People have tried a variety of diets for CVS symptoms. There are varying degrees of helpfulness for diet changes. If you have migraines, doctors recommend Low Fodmaps diet. 

Join our monthly Support call for helpful information and coping discussions. Tips and hints that work for others. Next one is in December. 

You may search for the burps and look through the archives regarding that. There are people that have that as a sign of their episodes starting . 

Hope this is helpful.

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maryanne brown legere
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Reply with quote  #4 
Hi Rachel, 
             my name is Maryanne ,  I experience all the symptoms you have & then some! The burping is usually the only warning I get & it taste like medal , that's if I get any warning at all because I usually get the attacks upon wakening ! I have had migraines most of my life but only developed CVS about 4 years ago  & my doctor told me it is most common for children that have migraines to be the ones that develop CVS but he also said that if you have it as a child you often out grow it but not always. I also get  severe diarrhea with the vomiting spells . It comes in phases (the burping, nausea,) ( vomiting & diarrhea , headache & stomach pain) ( then I would  feel faint & get very cold & almost incoherent when the vomiting stopped ) but I have good news...my attacks are down from 12-16 a year to 3-4 thanks to tips from my doctor & a little nagging from my husband . First of all to help prevent the attacks in the first place he put me on Q10 capsules, the dose differs for everyone. The druggist wanted me to take 6 a day but that would have been extremely costly so I started out with one a day & it worked for me , second it is important that when you do have the attacks to have a glass of water handy at all times & every time you vomit, drink water to keep you from getting dehydrated , Its the dehydration that makes you feel so awful & weak , also stress , diet & lack of sleep are all factors as well . I started out keeping a diary of everything I ate, how much sleep I was getting & the stresses in my life, it really helped me to pin point the things that affected me the most. I wish you all the best & hope this helps. PS be sure to talk to your doctor before taking the Q10 or anything else. & good luck.

              
                                                                                                                                                        Maryanne

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maryanne brown legere
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wynnak

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Reply with quote  #5 
Thanks for sharing Maryanne! You can find CoQ10 and lcarnitine dosages and suggestions on the CVSA website. It also lists places to get a discount. Dr. boles has recommended Trader Joe’s brand as well due to the purity of ingredients.
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Blynda
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ginny

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Reply with quote  #6 

Just to add to this, unless things have changed (Wynnak just heard Dr. Boles speak), Dr. Boles has suggested that after establishing the dose of CoQ10, Vitamin B be added.  He once told me that the biggest difference is with B.  

 

Epic4Health carries the brand used in research, Tischon.  This is a pharmaceutic product so each capsule should containt the dosage stated on the container.  The reason for 6 per day would be the dosage per capsule.  At some point you would reach your optimium dosgage, divided over two or three times per day. Be sure to not purchase a synthetic CoQ10 product.  You can call the number on the back of the bottle to have your questions answerd.  Epic4Health and Healthy Origins offer discounts to CVS familes.  You will need to order by phone to be sure the discounted price is honored.  Do not take a CoQ10 with a vitamin E suspension. Many adjust their CoQ10 according to what is going on personally-- allergies, upcoming cold, travel, less sleep.    

Check the source of the CoQ10, Kaneka is thought to be optimium.

Carnitine can be prescibed and therefore you would get a consistent dosage.  Do not take D Carnitine.  Some have preferred acetyl Carnitine but generally speaking LCarnitine has been the most helpful.  Again, check your source of the product unless you have a prescription.

As Wynanak states, there is information on the CVS web page, in the Message Board archives, and a forum on this Message Board discussing the supplements.  

 

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ginny CVSA Moderator
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