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Helpme2011

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Reply with quote  #106 
Hi, I woke up on Saturday about 3 in the morning feeling sick. Before I realized it I started vomiting and spent the whole day pretty much in the bathroom.

I would lie down in the bedroom closet to the bathroom.

I would literally run to the bathroom and must have vomited up to 20 times during the day, when I went to the hospital my temples were actually pulsing cause of all the vomiting I did.

I have been like this since 2011 with three to four episodes a year.

I want to be normal again, can someone help?

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wynnak

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Reply with quote  #107 
Have you been diagnosed and had tests to rule out other issues? I see you have posted a few times, but with you posting on the introductory post, so I wasn't sure.

Are you being followed by a Doctor and if you are , what kind, GP, GI or Neurologist? 



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Helpme2011

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Reply with quote  #108 
I go to a free clinic, and the doctors there are students and have never heard of CVS, very odd I know. They give me tests and through the blood tests, urine samples and countless others, they tell me there's nothing wrong. So I don't really know where to go or what to do. I do suffer from constant kidney stones, but that's a different story.
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wynnak

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Reply with quote  #109 
The episodes usually don't coincide with your episodes do they? I've had kidney stones and puked my guts out with each one. 

The students should be being taught about CVS. It is not a widely known condition, but they could get help from CVSA on your case if they were to reach out. If they are at a teaching hospital, I would inquire about having a professor contact CVSA or give them the website. My son is seen at a teaching hospital, and he gets wonderful care there.. they actually know about CVS there (now). But the Doctors were aware of it initially versus our local hospital. 

Hopefully when the Adult Treatment Guidelines come out later this year that will help. CVSA is funding Open Access of the publication so that anyone can see or even print off the document. 

Do you think that they would reach out to CVSA? They are students.. I would hope that it would present an opportunity to learn about a new condition. 

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wickedmystickmuzick1

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Reply with quote  #110 
WELL, I'VE BEEN CRUISING AROUND THIS WONDERFUL SITE, I'M CHERYL. I KEEP THIS HIDDEN FROM ALL THAT I CAN AVOID DUE TO NOBODY EXCEPT FOR THE PEOPLE WHO WITNESS IT WILL WANT TO HEAR IT , IT'S EMBARRASSING, AND THEY THINK YOU'RE EXAGGERRATING WHEN YOU TELL THE\M THAT THE HOSPITAL COULDNT EVEN ACCESS MY PORT WITHOUT ME GOING INTO ANOTHER NON STOP VOMITING EPISODE. I COULDN'T EVEN HANDLE THE NURSE TRYING TO PUT A SUCTION IN MY MOUTH SO I WOULDNT ASPIRATE. I JUST TURNED MY HEAD AND PUKED RIGHT THROUGH MY PORT BEING ACCESSED. THE NURSES WERE REALLY SHOCKED, THEY HAD SEEN MANY OF MY EPISODES, BUT ON THIS OCCASION, IT WAS SO BAD THEY IMMEDIATELY CALLED IN THE SURGICAL TEAM JUST IN CASE..THAT WAS AT A WONDERFUL HOSPITAL IN ORANGE COUNTY, CA WHERE THE DOCTORS AND NURSES LISTENED TO ME, THEY REALLY WENT ALL OUT..UNTIL I LOST MY INSURANCE, STILL GOT HELP BUT HAD TO MOVE TO LOS ANGELES AREA AND HAVING TO START FROM STEP 1 AGAIN! IT'S A NIGHTMARE! THANK GOD I FOUND THIS SITE BY WATCHING YOU TUBE VIDEOS AND TRYING TO FIND ANYONE OUT THERE THAT WASN'T DOING IT FOR EATING/SEX DISORDERS, ETC. IF ANYONE THINKS THEY KNOW WHAT IT IS LIKE TO HAVE CVS, TRY MIXING THE WORST FOOD POISONING, FLU, INCREASE IT BY AT LEAST 10 FOLD, WHAT? NORMAL PEOPLE DONT PUKE LITERAL BUCKETS OF BILE EVERY EPISODE OF VOMITING WHICH CAN LAST NON STOP FOR MANY MINUTES, FOLLOWED BY ANOTHER NOT 2 MINUTES LATER, YOU CAN'T SAY YOUR NAME, YOU'RE LUCKY IF U CAN SQUEAK FOR HELP, IF YOU'RE ALONE...ALL U HAVE IS GOD..AND THESE WONDERFUL PEOPLE THAT HAVE DECIDED ENOUGH IS ENOUGH, THIS IS DEADLY! I HAVE CODED TWICE AS A DIRECT RESULT OF CVS! AT LEAST NOW I HAVE HEARD OF A GASTRONEUROLOGIST! THAT'S GENIUS! I HAVE EVERY OLOGIST IN THE BOOK ABOUT, NEVER HEARD OF THAT! MAKES PERFECT SENSE WITH THE NEURO SYMPTOMS THAT COME W/ CVS, I CAN'T BELIEVE THAT MORE STUDIES HAVENT BEEN DONE! LIKE I'VE SAID BEFORE, 48 YEARS OLD WITH CVS SINCE INFANCY, AND I'M JUST HEARING ABOUT THIS NOW? HAVE THE DOCTORS NOT NOTICED THE OBVIOUS SIGNS(SEVERE RETCHING-NON STOP! I NEVER GET DRY HEAVES, ITS ALWAYS BILE THEN BLOOD. THEN SEVERAL EPISODES IN A WEEK WHERE I HAVE TO B RUSHED TO THE HOSPITAL 911.) YOU WOULD THINK THE DRS COULD TELL THE DIFFERENCE, BUT ITS THE NURSES WHO HAVE TO EMPTY YOUR BUCKET, ETC. THE DR SEES YOU FOR A MINUTE AND JUST SAYS ITS STOMACH FLU! REALLY, THERE'S NO SUCH THING AS STOMACH FLU. THERE'S SEVERAL VIRUSES/DISEASE PROCESSES THAT CAUSE VOMITING, BUT THE REASON FOR ALL OF THE TRICYCLIC ANTIDEPRESSANTS LIKE AMINOTRYPTALINE IS THE SAME REASON THEY USE COMPAZINE, THEY ATTACK THE VOMITING SIGNAL TO YOUR BRAIN. I'M NOT EXACTLY SURE HOW ZOFRAN WORKS, BUT IT IS THE ONLY PRESCRIBED ANTI EMETIC OTHER THAN MMJ/CBD THAT DOESNT GIVE ME BAD SIDE EFFECTS. FOR SOME STRANGE REASON, MY BODY IS ABSOLUTELY INTOLERANT OF ANY OF THE PSYCHOTROPIC MEDS. I TRIED A VERY MILD DOSE OF ZOLOFT ONCE EVEN BECAUSE I WAS DEPRESSED AFTER HEARING THAT I HAD TO STAY IN THE HOSPITAL FOR AT LEAST ANOTHER COUPLE OF WEEKS, THEN HAVE TO GO TO A NURSING HOME, AND THAT STUFF MADE ME BONKERS! I CAN'T EVEN TAKE PHENERGAN OR REGLAN. I GET HORRIBLE SIDE EFFECTS FROM THOSE. SO FOR NOW, WHEN ITS LIQUID DIET TIME, I HAVE MY USDA NON GMO FRUIT PUNCH AND HEMP OIL(TO AID W/ DIGESTION AS WELL AS FOR THE CALORIES/AMINO ACIDS, ETC.) FULL LIQUID, I HAVE TO MAKE MILKSHAKES TO KEEP WEIGHT ON. REALLY GOOD DAYS SUPER SOFT PASTA W/ NOTHING BUT LIGHT OLIVE OIL ,SALT AND A LITTLE GARLIC. THAT GARLIC SEEMS TO GIVE ME AN APPETITE. I JUST CANT HAVE ANIMAL FAT. I GET SICK AS A DOG FROM ANY ANIMAL FAT/BYPRODUCT, THE ONLY MEAT I CAN TOLERATE ON A REALLY GOOD DAY IS RAW TUNA(MUST BE SUPER FRESH), THEN I HAVE TO TAKE MY ABORT MEDS BEFORE AND AFTER EATING. TODAY IS SEEMING TO GO OK. NO APPETITE YET, BUT I JUST GOT A CALL THAT MY INFUSION SUPPLIES AERE ON THEIR WAY! YIPPIE!! NO MORE FIGHTING W/ THE DR'S TO FLUSH MY PORT OR ACCESS IT!! TIME TO REST NOW, GETTING A HEADACHE...THANK YOU ALL, BY THE WAY, HOW MANY PEOPLE GET GREETED AT THE ER AS THEY ARE BEING WHEELED IN ON A STRETCHER,"AND HOW ARE YOU TODAY??"LOL!! DUMBEST QUESTION EVER ASKED IN THE HOSPITAL!!NEXT TIME, I'M GOING TO SAY-IF I CAN SPEAK..,"WONDERFUL!! CARE TO JOIN ME?"LOL!
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ginny

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Reply with quote  #111 
I am sorry you have had such a terrible time.  Glad you found us and I hope you can keep posting about what helps you as well as look for support from the message board members.

Please look through the CVSA web page for some information that might be helpful.  On the page there is information that might be helpful to understand some aspects of why certain medications helps some but not everyone.  There are also papers explaining CVS stages, helpful supplements, research papers.  

Having a supportive hospital staff is a huge benefit.  I hope the home infusions work well for you.



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Emily67

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Reply with quote  #112 
Hi, my name is Emily and I have a 17 year old daughter who has what we now believe to be CVS, and most likely brought on by her periods. We do not yet have an official diagnosis, but considering what I've been reading on here, there is no clinical diagnostic test for it, it is diagnosed by ruling everything else out, which we just about have by now. She has been suffering from abdominal pain and diarrhea for about a year now (diagnosed with IBS Oct. 2017). The nausea and vomitting started last December. She has been to the ER 4 times since then and they have diagnosed it as a stomach virus each time. I have had her tested for food allergies and Celiac, and she had an Endoscopy with colonoscopy last month. Everything came back negative. The GI who performed these told me again, it was IBS. When I questioned the vomitting as not being a typical symptom of IBS, he said the vomitting was most likely due to her marijuana use (she had admitted to occasional marijuana use when questioned by the doctor). I won't go too deep into that, I will just say that we do not believe it has anything to do with that. The only food triggers she has noticed for each episode were beef, eggs, and chocolate. The one common denominator for each episode has been that she has been on her period or the day before her period when it started. We didn't even realize this as a common denominator until a week or so ago. We have an appointment to see a GYN on Tuesday (5/22/18). I really, really appreciate you reading this if you have gotten this far!! I'm at my wits end, and not impressed at all with the doctors we have seen thus far. Questions: Where do we go from here? What kind of specialist do you suggest we go see next? Thank you!!!
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ginny

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Reply with quote  #113 

You might be fortunate that the hormones are the major trigger for your daughter.  There is a lot of information in the archives regarding which BC medications might be helpful for her.  For us it was Yasmin which prevented almost 100% of the episodes.  Episodes started again once Yasmin was discontinued (for reasons of side effects).  I was told the formation of the progesterone can be very important for the effectiveness of the BC med.  

We were also instructed to start something like Ibuprofen around 7 days prior to the expected period. This helps decrease prostaglandins (which might be a factor).

Try the archives for more information.  Regular sleep is thought to be very important, same time to bed each night, same time to get up each day. Some do well on all natural organic diets, some do well vegan or gluten free or Paleo. The one thing the various helpful diets seem to have in common is lack of additives.  Not everyone will respond to a diet change.  MSG and soy seem to be frequently mentioned as non tolerated additives and even triggers for some.

The gyn might be the doctor that is helpful to you, or you can also try a GI as well.  Some end up with a neurologist, esp if there is migraine involved (head or stomach migraine).

On the CVSA web page you will find helpful information.  Please review some of these important papers.  There are also various journals you can print to try and help with triggers and patterns.

Please let us know how she is doing.



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wynnak

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Reply with quote  #114 
You are correct that it is more of a rule out scenario when it comes to being diagnosed.

First and foremost I would make sure that the marijuana is cut out completely to be sure that it isn’t involved. Unfortunately, because CVS has very similar symptoms to CHS (cannabinoid hyperemesis syndrome) it makes it harder to get a CVS diagnosis as the assumption will be made based on her age. My son is 19 and was treated poorly in the ER, for just having CVS on his medical records. Unfortunately, due to the legalization in many states, CHS is more prevelant and most doctors have not heard of CVS.

Have you gotten a referral list from the office of doctors near you? That would be my second suggestion.
But I would start with a GI. They will most likely look at other issues still, since she has rapid emptying.

I have heard from a few people that their GYN was helpful. Being that her periods maybe the trigger, a birth control pill, or even an anti inflammatory for a few days prior to the period can be helpful to avoid having an episode.

Let us know how it goes.

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Emily67

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Reply with quote  #115 
Thanks for the information, Ginny! What sort of side effects did your daughter have using Yasmin? Her GYN gave her a couple samples of "Lo Loestrin Fe" on her last visit, but she hasn't started them yet. She is concerned about side effects, but I guess we'll have to weigh them out against the CVS if they do indeed prevent episodes.
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Emily67

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Reply with quote  #116 
Thanks so much! Yes, I agree that she should eliminate all possible triggers including marijuana to rule that out as well. She is also getting migraines, I forgot to mention that. She had a really bad one the other night and I had to go pick her up because she couldn't see to drive home. She has already been to a GI and they haven't found anything. I will try to see if there are gastroneurologists on my healthcare plan. I never knew they existed until I saw it on this forum. Her primary care referred us to a regular GI, but that was a dead end and unfortunately until she is 18 there are no other GI's on our plan that will see her.
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ginny

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Reply with quote  #117 
Loestrin was the CVSA birth control choice at one time.  For my daughter, Yasmin caused edema on one leg and foot.  This was a serious concern and had to be discontinued.  We are going way back in time, and I don't recall but think it was suggested she stop taking a week off Yasmin and just continue it week after week.  Maybe had she taken Yasmin 3 weeks with one week off, the edema might not have happened.  

If she is having migraine headaches it could be that she is transitioning to a migraine patient as some kids do or she might have both abdominal migraine and head migraine.  Many ERs and doctors are familiar with abdominal migraine.  You might do better describing that rather than stating CVS.  It is a matter of semantics and I am told many places have discontinued the term abdominal migraine.

I don't think it matters much what kind of MD you try as long as that doctor will work with you and offer strong support.

I agree with Blynda regarding stopping the marijuana as even traces on her testing will often shut down the willingness of some doctors to work with her.  There is a huge misunderstanding about cyclic vomiting due the Cannabis Hyperemesis Syndrome and Cyclic Vomiting Syndrome.  IBS and CVS can go hand in hand, they fall into the functional disorder category so the doctor stating IBS is not all wrong.  Just different manifestations of a "nothing is wrong that we can find" condition.

There are many who were diagnosed with CVS and are later found to have other conditions.  And she can of course have more than one condition at a time.

Dr. V states that CVS patients usually have rapid gastric emptying which slows down as an episode nears.  Diarrhea is common at the time of menses as well.  Journaling might be very helpful to figure out what the patterns are. 

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Emily67

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Reply with quote  #118 
Wow thanks so much for all the great info!!!
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CJKKmom

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Reply with quote  #119 
Hey! I am the mom to an undiagnosed 13 year old boy who fits the description of CVS. He has been having his episodes since he was a toddler and his pediatrician has never taken us very seriously. I am relieved to know there are others out there going through the same situation who understand.
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wynnak

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Reply with quote  #120 
Welcome! My son was 11 when his started being unrelenting. I ended up switching him to my physician. He did what he could for us. Have you asked to be referred to a GI? Or gotten a list of drs in your area from the office?
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