That is one very important reason to have the rule-out testing done. Many conditions can be misdiagnosed as CVS and CVS misdiagnosed as something else. Very important information to share!

My sons CVS was finally SOLVED! 🙏 It’s completely healed now. It was not a stomach disorder like his gastroenterologist thought. Instead, by a fluke, at a new ER, they ran more tests and after imaging his kidneys they found a polyp in his ureter (the tube leading from his kidney to his bladder) that would occasionally block the flow of urine, where it would build up in his kidney and cause excruciating stomach pain (really it was kidney pain that he felt in his stomach) and vomiting. The polyp was removed and he has never had a single episode now in years! I know this may not solve everyone’s CVS, but I hope it will point some of you toward other potential downstream organs, not just the gastro region.

Please contact the CVSA office at cvsa@cvsaonline.org for a list of providers or options that may be available.

Did you find help yet...Debbie's An angel but the doc i went to lied about multiple forms of treatment i got there and doc said just 1 treatment for all. Im 6'3 130 he had my heartbeat upto 166 and told me i needed more. Unfortunately docs cant tell u what works anymore. Its very dangerous the give so many ppl this medication without a cardiac assessment test. Only 1 pill works for me and unfortunately i had to do my own research to find it. I can eat anything without vomiting the heat dosen't trigger noise ,weather, the sun. If your still stuck LmK it sucks to suffer like this. God bless debbie and down with the bastards that have let us suffer for so long

Did you find help? If not lmk its too simple to cease CVS

Hi I need help with this please

It took 51 and a half years for me to get a diagnosis.... I had to get my partner to video tape an episode ( the beginning, the middle and the end) he sent it took a mystery diagnosis website, where doctors from around the world watch it, then they talk among themselves, ask a few questions and then give you a diagnosis, but then you have to get your doctor to confirm it... I live in Canada and the doctors here are either completely clueless, or their personal bias against the medical use of marijuana, even when prescribed by a doctor or specialist, prevents them from seeing the true cause of my illness... They say " just stop smoking pot, and it will go away" as if my parents were blowing me bong hoots in my crib...and because of their bias against drug use, they refuse to give you ANYTHING, not even a iv line, pain is your punishment for being a 'drug addict'...that's how nasty they can be to anyone using medicinal marijuana.... I hope you are able to get a diagnosis for your child sooner than I have...as these episodes are deadly... Amitriptyline 25 mg works for me, I had my first full blown episode in 16 months, and it was a bit milder than normal...my abort meds we are still working on a program, so far I haven't found anything besides Ativan that works to put me to sleep...a warm bath and watered down ginger ale or pop cycles help...

😢 are you still in need of help. Lmk...God bless debbie down with the bastards who let us suffer

Julia, Nottingham UK? CVSA UK would be a great place to start. www.cvsa.org.uk/

i have cvs and ive spent the last year going to the hospital about once a month, if you’d like you can text me and i can try to help you with what i’ve found out so far 🤍

My 16 yr old son has CVS and abdominal migraine, but we need a good GI doctor that is experienced with it. We are willing to travel. Any recommendations of who is the top notch doctor to see? It's so hard to watch him struggle year after year.

@@heidis4686 hospitals in areas with 20 million citizens are a wonderful place to look for a doctor / specialist as they see this disease more frequently than smaller city emergency room Dr's. I had video taped a couple episodes and sent them to a mystery diagnosis websight, and the Dr from India knew what it was immediately!! I gave my specialist his diagnosis and she went off for a month and did her research- looked at my file, all the tests done over the past 37 years, and she said she couldn't believe no one saw it sooner!! She agreed with the diagnosis... Until then my Dr used to roll her eyes at me, believing I was 'putting on a show' as they say to get opiods...( don't know why, I have never asked her for anything and I already had a pain management specialist prescribing me meds recommended by the college of physicians and surgeons... Dr in Canada have no balls, they are pussies, unable to write a prescription without permission from their fellow peers at the college ) I hope you find the help you need...sorry for the late response

@@heidis4686 my daughter too 😢. It is too hard to see her everytime she is getting an attack. But now we are slowly getting some solutions into her problem. She just turned 17 last week and yesterday she threw up again nom stop and that we need to rush her to an emergency. The next morning she started feeling normal. Her vomitting is shorter than before. She had endoscopy, ct scan and all is normal. Tomorrow she will undergo eeg. The neurologist saud if eeg will be normal then she will do treatment for CVS. Hoping it will work