Adults with Cyclic Vomiting Syndrome - John - Email from an Adult with CVS

I am an adult with CVS. At least I have diagnosed myself that way even though I have never been formally diagnosed by any physician.

I am 42 years old and my episodes started just over a year ago. My symptoms were very similar to those described in the CVS literature, consisting of vomiting episodes that lasted 10-12 hours with the peak intensity of vomiting 4-5 times per hour. These episodes repeated every three weeks like clockwork and I felt very well in between episodes.

I am diabetic so the diagnosis by the doctors was diabetic gastroparesis a condition that produces similar gastrointestinal problems. We tried treating that with drugs that are often used in the treatment of CVS (propulsid, reglan, erythromyicin). None of these gave any relief.

In the past year I have seen several specialists (gastroenterologist, endocrinologist and a specialist in gastroparesis at the Mayo clinic). The tests I have had done include upper endoscopy, small bowel exams, several gastric emptying studies, and some testing of nerve function which ruled out gastroparesis as the cause.

I have tried relieving the symptoms once an episode begins with compazine intravenously, in pill form and by IM injection. I have also tried zofran tablets and imitrex tablets. The only thing that gave any relief has been compazine IV or IM, the pills did nothing.

I learned of CVS in May of this year through the CVS web page and have followed the list serve since then. I shared as much info with the doctors as I could. All of them seemed receptive but none of them were familiar with it. My family doctor has always been very willing to prescribe things I suggested, so was ok with me bringing suggestions of meds that I saw being used by other members of the list serve. The most recent medication I have been using is amitryptiline(sp?) also called Elavil. I am thrilled to report that I have not have an episode since I began taking it.

It's still a little too early for me to believe that I have this solved but it has been almost seven weeks without an episode. That is the longest I have been episode free since it first began in August of 1997. I am taking one 10 mg tablet per day with no noticable side effects. My symptoms have always been less than what I have seen others report and from the beginning.

I have been heartsick at what the children and their parents have gone through and continue to go through. I feel very fortunate to have found the CVSA, the listserve, and all the info they have provided.

I am also fortunate to have a family physician willing to listen to me and accept my suggestions. He was also very willing to admit he did not know what was going on so was quick to refer me to specialists that he thought could help. If I had to give anyone advice on dealing with this I would suggest finding a doctor you can work with, follow the list serve to see what meds are being used and keep trying and hoping that something will bring relief. Good luck. John

PS. Feel free to share any of this info with anyone you care to.

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