Finally Dx with CVS

[mindylee1]

After 2 years of this insane naseua and vomitting, They finally dx me at Cleveland with CVS. I've been on everything you name it..Zofan, Phenergan....ect. Well On tues we are starting at home Iv treatments once a week of Anzemet and fluids. I have recently been on the ancement pills and no luck.

I am excited about this for two reasons 1. hopefully on a weekly regimen this may actually stay in my system 2. Bring on the fluids!!!!

But I've never had Anzemet in IV.. has anyone??

I'm really having some complications with all this vomitting. I've been on Coummidin for a year now due to my blood clots and I've been vomitting so much that there is often blood. I get really worried that if I can see it, what is going on on the inside of me. It has to be tearing me up.

Any advice would be great

thanks

mindy

[briarrose]

I'm not sure about the med but it's certainly nice to have a diagnosis and plan. I believe CVS is aka Abdominal migraine so you might be interested in this website as there is a listing for NORD towards the bottom and they usually have some good info.

Cyclic Vomiting Syndrome

National Organization for Rare Disorders

Topic Contents

Synonyms

Disorder Subdivisions

General Discussion

Resources

For a Complete Report

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Important

It is possible that the main title of the report Cyclic Vomiting Syndrome is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

Abdominal Migraine

Childhood Cyclic Vomiting

Chronic Vomiting in Childhood

Periodic Syndrome

Recurrent Vomiting

Bilious Attacks

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Disorder Subdivisions

None

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General Discussion

Cyclic vomiting syndrome is a rare digestive disorder that affects children and adults. This disorder is characterized by chronic nausea, vomiting, extreme fatigue, motion sickness, abdominal pain and, in some cases, dizziness (vertigo) that may last for hours to days. These episodes of symptoms seem to be similar in onset and duration for each affected individual. The exact cause of cyclic vomiting syndrome is not known.

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Resources

Cyclic Vomiting Syndrome Association (CVSA)

3585 Cedar Hill Road NW

Canal Winchester, OH 43110

USA

Tel: 6148372586

Fax: 6148372586

Email: waitesd@cvsaonline.org

Internet: http://www.cvsaonline.org

National Headache Foundation

820 North Orleans

Suite 217

Chicago, IL 60610-3132

USA

Tel: 3124605399

Fax: 3124609049

Tel: 8886435552

Email: nhf1970@headaches.org

Internet: http://www.headaches.org

NIH/National Digestive Diseases Information Clearinghouse

2 Information Way

Bethesda, MD 20892-3570

Tel: (301)654-3810

Fax: (301)907-8906

Tel: (800)891-5389

Email: nddic@info.niddk.nih.gov

Internet: http://www.niddk.nih.gov

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For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ? (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report.

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated: 4/25/2002

Copyright 1992, 1998, 1999, 2002 National Organization for Rare Disorders, Inc.

[Sunfish]

mindy -

congrats on the diagnosis. i know that it isn't a magic answer, but also know what a relief it can be to have a name in terms of moving forward. as someone who has had lots of issues with nausea/vomiting in the past year, i'm curious as to what the diagnosis of CVS was/is based on? i know the symptom patterns, but is there any specific testing other than ruling other things out? such as if one has gastroparesis does that negate the possibility of CVS? just curious! hope your new plan gets things headed in a better direction for you....

:-)melissa