faye - 12/22/00 16:31:05
My Email:southpawleo@aol.com
How did you find this page?: surfing for answers

Comments:
Jackie, I thank you for your story. I have not eaten since Sat. It is now Fri. I can not smell things w/o vomitting. I think the life drenching nausea is the worst symptom.I have lost 17lbs. since Sat.I have had this episodically most of my life. I vommitted for a week after the birth of all 5 of my children. I am a falling thru the cracks person who gets no help because even though I've worked hard as a waitress, I could never afford the luxury of insur. People like me don't get help.We just fall thru the cracks so I have learned to live with it. It comes around every two years now.The only thing that helps is a hot bath when I am nauseated & vomitting. Sometimes I have to take 20 a day. The spells seem to come every 20 mins.-I guess it takes that long for my body to reproduce the bile that makes me so deathly ill. I have no pain just don't care if I die tiredness after about the 3rd day cause I am so sick.That's about it. I am pulling out of this one .It will take a few more days.Yesterday, I felt like a person.The emergency room sent me home telling me, if I don't pay $15 or $20 in the next few days- they'll get their lawyers. I raised 4 kids for 6 years with no help whatsoever from anyone.I guess I can hold em off. Please remember those of us who fall between the cracks of medical care.

jason sibley - 12/09/00 08:05:31
My Email:vwmcbee.aol
Do you or someone you know suffer from CVS?: me
How did you find this page?: by looking up cvs

Comments:
I would like to speak with you. I was diagnosed about 4 years ago. I am 25 years old and I am sick quite often. I would like to discuss my situation further, you appear to have quite a bit of experience/knowledge....,perhaps we may both benefit by talk ng a little bit. 7077476036 located in California.... Please call. Thank you.

Lisa Sherwood - 12/01/00 02:45:19
My Email:arklaman@centurytel.net
Do you or someone you know suffer from CVS?: yes; Myself
How did you find this page?: through MSN

Comments:
Dear Jackie, Me and my mom were very interested in your story. I am 13 years old and I just got CVS two months ago.I have had an upper GI, a lower GI, an ultrasound, an endoscopy, and a MRI, and it's really frustrating to me. My pediatrician has concluded I have CVS. Yet they have not prescribed any medication to m as of yet. My symptoms are a little different from yours. I don't throw up as often as you. I may go days with no vomting and then weeks of vomiting like only once a day. But then, I have a week like this one where I am sick every day for 5 days, so f r. I don't vomit every time I eat something every day but then today I have thrown up every time I eat. I'm really bummed. There is many things going on now with my Youth group at church that I would like to be involved with and yet my parents are afra d to let me go off with them.

Tammy - 11/25/00 04:04:15
My Email:altamm@telepak.net
Do you or someone you know suffer from CVS?: My daughter
How did you find this page?: surfing

Comments:
My 14 yr. old daughter has been vomiting for 4 mo. Seems to be no pattern. No headache, no abdominal pain, nausea, just vomiting. GI doc. ran several tests, everything negative so far, "h ealthy girl". Tried different meds., did 24hr. monitoring (tube nserted through nose & down esophagus); (vomited 36 x in 24 hr. period)finally some relief. Gave no name or cause. Is currently on Elavil. Working!!!! Hasn't vomited in 2 weeks. Possibly CVS??? I think so.

Loek Lempers - 11/05/00 12:00:07
My Email:ljb.lempers@wxs.nl
Do you or someone you know suffer from CVS?: yes, my dougther
How did you find this page?: searching the web for CVS

Comments:
I'll give the story of my doughters CVS in short, because I want to search for more information, specialy the books or articles that are written about CVS. I'm lkiving in the Netherlands, so my English writing is not perfect. My douther Jennifer is now 25 years and is expecting a baby (3 months). At this moment she is in hospital for CVS. From the age of about 6 years she had seviere attacks of vomiting during a few days that later couldn't be treated anymore with medicin. In the regional hospital they sai : its in your mind and if you want to stop it, you can! Our local doctor thought this vomiting could be related to migraine (it was 14 years ago) and send her to a university-hospital. There they excluded al other possibilities (never had a healthy girl ike her!)and at the end, they found in an E.E.G (Electro Encephalogram, a kind of braindetermination) a pattern, that if she had a haedache, they should call it migraine. She was then treated with medicin for migraine, what decreased the number of attacks 6-7 Years ago she stopped taking the medicins, because - as a new doctor told - one of de side-effects was the possibility for the Parkinson-desease (trimbling hands a.s.o.). She still has the CVS, two/three times a year, vomiting up to six times an hour for a few days, and till now it only stops when she had IV (kind of salt licquid in her vains). Only this time that didn't work. Perhaps here vomiting now, is a combination of CVS and pregnancy. The doctor in this hospital (regional, not university) told s a few years ago that abdominal migraine doesn't exists, but since I found the CVSA the day before yesterday, I know better. Thanks.

Adam Kuntzelman - 10/30/00 19:57:31
Do you or someone you know suffer from CVS?: i do.
How did you find this page?: carefully

Comments:
Thaank-you soo much for the inspirational story. It makes me more hopeful now that I know I am not alone. Once again, thanks! Write me sometime at my address. 1870 Sextant Dr. Davis, Il. 61019 Adam

Adam Kuntzelman - 10/30/00 19:56:38
Do you or someone you know suffer from CVS?: i do.
How did you find this page?: carefully

Comments:
Thaank-you soo much for the inspirational story. It makes me more hopeful now that I know I am not alone. Once again, thanks! Write me sometime at my address. 1870 Sextant Dr. Davis, Il. 61019 Adam

Brandi - 10/25/00 03:14:24
My Email:FAERIESXDOXEXIST@aol.com
Do you or someone you know suffer from CVS?: No
How did you find this page?: Looking for help

Comments:
Hi, I am eighteen years old and for a while I have always had problems with my stomach. Certain foods, scents, even car rides would make me sick to my stomach. I have been able to sleep in alot over the summer but now When I have to wake up early, any tim before 10:30 I am nauseated. Just the thought of food makes me sick and if I have to go somewhere, the car ride is torturous.Today I woke up to go down to the DMV and took some pepto busimol (sp?) Because I knew I had a ride ahead of me but ny the time I got there I couldn't stay so we rushed home and I threw up all morning and haven't ate anything for the rest of the day. I don't know what is wrong with me but it's ruining my life and I don't have the money to see a doctor. What do you think.

Lisa Davis - 10/24/00 04:20:03
My Email:lisadavisgri@aol.com
Do you or someone you know suffer from CVS?: no-but similar
How did you find this page?: rare disease search

Comments:
My son aged 7 suffers from severe gastric reflux where his food comes back up in a surge over and over, for a few days at a time. It is very uncomfortable and socially not fun. He has had it since he was about 4, probably before, and besides suffering f om apnea as an infant, has been pretty healthy. I myself got this same condition when I was 18 years old, suddenly after taking huge doses of penicillin for strep throat that the doctors couldn't seem to treat. Anyway, my son has had all the tests for r lated disorders and they've come up with nothing. Every morning and every night he yelps in pain from what? and we give him tums and it helps a little. He has been on Propulsid, Tagamet, and many other drugs, some which made his heart race or seemed to m ke things worse! When he was three, he had projectile vomiting for a couple of months. We could see it coming, his eyes would get dark circles under, he would look a little woozy then boom! This then would go on for a couple of days. Then he would be ine for several days. Finally, the doctor ordered a stool test and he had giardia (spelling?) a parasite. Vomiting is atypical, most have diaherria. He was treated with flagyll and the vomiting lessened but didn't stop. We then went to a naturopathic hysician who prescribed a strict no sugar diet and herbal medicines. He got better! Not long after this other condition started however. We hope that he can get help eventually for his problem. My heart went out to you that you had to go through what you described physically, and also the mental agony and the not knowing. I hope things get better and better for you. Thank you for sharin your story, it can only help others, which I'm sure you know. Good luck!

Gayle - 10/16/00 22:10:28
Do you or someone you know suffer from CVS?: No
How did you find this page?: Stumbled across it

Comments:
I'm proud of you.

gress23 - 09/30/00 02:47:24
My Email:gress23@aol.com
Do you or someone you know suffer from CVS?: no
How did you find this page?: looking for a health sub.

Comments:
Im sorry, that youve been suffering all these years from chronic nausea and vomiting, but didnt that give you palpitations or arrythmia? Well anyway good luck, and god bless you. You are very brave, and strong. Gress 23

Amber - 09/25/00 09:19:36
My Email:JustMoo13@aol.com
Do you or someone you know suffer from CVS?: No, just curious
How did you find this page?: Looking for another disease

Comments:
I never even knew a disorder like this existed, and I am incredibly amazed by your strength and perseverance.I am genuinely impressed. Thanks for the education.

tamara mccoy - 09/01/00 19:28:58
My Email:tammy@aol.com
Do you or someone you know suffer from CVS?: yes, i do
How did you find this page?: browsing

Comments:
i have been having episodes of vomiting since the age of 4. back then, doctors diagnosed it as a "stomach virus". when i reached 20, the bouts became more frequent. i had every test done imaginable. the doctors have come up gastroparesis, pancreatitis to ame a few. ireally became fed up 4 mponths ago and went out searching for answers. i am glad that i finally have a true diagnosis.

Melissa - 08/24/00 19:20:20
My Email:Flitter30@aol.com
Do you or someone you know suffer from CVS?: possibly
How did you find this page?: web search

Comments:
Hi Jackie- I;m so glad I found your web-site. I am almost 20 yrs old & have been dealing with alot of the same things you did since I was 7 years old. Because the Dr.'s can't figure out whats wrong with me, they too have dismissed it as "all in my head". It's rea ly frustrating to know that there is something medically wrong with you & have everyone tell you that you're making it up. My current Dr. has mentioned CVS & I have an appointment in 2 weeks to do some tests & get to the bottom of this. I hope my story nds happy like yours seems to have.

Christine - 08/23/00 01:28:49
My Email:LiLswiftyC@aol.com
Do you or someone you know suffer from CVS?: yes, my 25 year old boyfriend
How did you find this page?: researching CVS

Comments:
Hi Jackie, I was just reading your story and I dont know firsthand what exactly you go through but I see what my boyfriend goes through and I know its hard. I hope you are feeling better now as you are getting older. Hopefully more people can become aware of this syndrome ( especially the doctors!!) Take care and God Bless -Christine..Boston,MA

Jess - 08/16/00 05:59:50
My URL:http://www.angelfire.com/boybands/suckazz
My Email:JeSsMeSs20@aol.com
Do you or someone you know suffer from CVS?: No
How did you find this page?: Just Surfed On

Comments:
I had never heard of CVS before I found your web site. I think it's very important that this disease get's recognized because people suffer for so long before getting treatment. I'm glad you put this website together. I hope the medications are helping yo . :) God Bless.

BRENDA - 07/29/00 20:22:49
My Email:NINEGRANDGIRLS
Do you or someone you know suffer from CVS?: NOT SURE?
How did you find this page?: ON THE WEB

Comments:
I HAVE BEEN THROWING UP FOR ABOUT FOUR YEARS NOW. HAVE HAD SEVERAL DIFFERENT TEST DONE, STILL DON'T KNOW THE REASON FOR IT. GOING TO MILITARY AND CIVILIAN DOCTORS. I AM A 57 YEAR OLD FEMALE, AND I AM REALLY CONCERNED ABOUT THIS AND WANT TO FEEL GOOD AGAIN SEARCHING THE INTERNET TO SEE IF I CAN FIND SOMETHING OUT. THANKS

LAURI - 07/19/00 02:01:54
My Email:LUCY9365@AOL.COM
Do you or someone you know suffer from CVS?: NO

Comments:
THE REASON I STUMBLED ONTO YOUR PAGE IS THAT MY CHILD HAS BEEN ILL THIS EVENING AND I WAS LOOKING UP SOME INFO ON VOMITING. IT SOUNDS LIKE YOUR TIMES HAVE BEEN VERY TAXING, TO PUT IT LITELY. I HAD NEVER HEARD OF CYCLIC VOMITING BEFORE SO THIS HAS BEEN VE Y INFORMING TO ME AND VERY EDUCATIONAL. IT IS NICE THAT YOU CAN SHARE THIS WITH PEOPLE AND BE OF A HELP TO OTHERS. HOPEFULLY I WILL NEVER HAVE TO DEAL WITH THIS, BUT IF I DO I WILL REMEMBER WHAT YOU HAVE SAID AND HOPEFULLY HAVE THE SAME OUTLOOK THAT YOU HAVE.

Laura - 05/25/00 21:15:17
My Email:Violet9258@AOL.COM
Do you or someone you know suffer from CVS?: Yes, I Do
How did you find this page?: Searching on Web

Comments:
I have had vomiting episodes since I was 18 months old. Decided to do a little searching on the web, to see if I could find anything. (I always thought I was the only one in the world who does this) I have always thought that there couldn't possibly be anyone else who does this! When I found websites and E-mails and stories, of people with these same sysmptoms I could not believe it!! I am 29, and my episodes have really slowed down to 1-2 a year. But it doesn't make them any easier. I get so scar d when I start to throw up! I usually do it for 24 hours. Then it just stops. Was never diagnosed by a doctor, but I know that I have CVS. Thanks for sharing your story. Now I know I'm not alone!!

Donna Kucaric - 05/23/00 17:29:08
My Email:AmeriKooch@aol.com
Do you or someone you know suffer from CVS?: My son Jonathan
How did you find this page?: Through CVS sight

Comments:
Hi Jackie, I don't know if you remember me About 2 years ago my son was in Rainbows Babies and Childrens Hospital,and I came to see and talk to you about CVS? So how have you been? I also mentioned to you about a DR Li in Columbus Ohio were you able to see him? We till see him once a year Jonathan is 14 now and has not been in the Hospital for over a year now but we had to have Home Care come to our house twice this winter for two days of IV fluids as he was dehydrated, he still has alot of episodes. I am so sorr that you and your family had to go through so much I know it was not easy on you or your family. It was also very hard on us well good luck look forward to hearing from you soon ! Sincerely, Donna

Alli Dean - 03/31/00 16:47:37
My Email:dimple771@aol.com
Do you or someone you know suffer from CVS?: i do
How did you find this page?: researching CVS

Comments:
I have CVS, but I only throw up when I eat something. Most of the time I have to go to the hospital to get an IV. This happens about once a month. Can someone tell me if it's still CVS if you just throw up when you eat or drink something? Thanks a lot

JUDIE ZYRA - 03/18/00 23:11:53
My Email:Sbells120@aol.com
Do you or someone you know suffer from CVS?: my son alex 8 years old
How did you find this page?: web

Comments:
alex has been 6 since about after dotors tests ect. finally agood one and diagnosis when he was 5. he cycles evry 3 to 5 weeks always hospitalized trying differnt meds. propulsid seems to be helping we'll keep trying. thanks for your story it makes me fee there is hope. judie

jUDIE ZYRA - 03/18/00 23:07:30
My Email:sBELLS120@AOL.COM
Do you or someone you know suffer from CVS?: SON ALEX 8 YEARS OLD
How did you find this page?: CYCLIC VOMITING WEB

Comments:
MY SON ALEX HAS BEEN SICK SINCE ABOUT 2. VARIOUS TESTS ECT A GOOD DOCTOR FINALLY A DIAGNOSIS.

Renee Bianucci - 03/18/00 18:29:28
My Email:rmb203@psu.edu
Do you or someone you know suffer from CVS?: no
How did you find this page?: I was looking for information on mononucleosis and your page came up in my search.

Comments:
I read your story after it came up on my search for information about mono. I read it and I feel terrible for you, that you suffered that long. I am a college student majoring in the health field and I was disgusted that you could not be diagnosed soone . A lot of things that go on in the health field upset me, and that is one of the reasons I want to go into the health field to try make things better. Once again, I am glad I took the time to read your story and hope that you are feeling much better no .

June Wilde - 03/01/00 02:21:34
My Email:wilde7@erols.com
Do you or someone you know suffer from CVS?: my nephew
How did you find this page?: Looked for it

Comments:
Excellent website....my nephew was just diagnosed and he's really sick. It helps to know that he's not alone.

romeo tolentino - 02/11/00 17:57:54
My Email:romeo333971@aol.com
Do you or someone you know suffer from CVS?: yes
How did you find this page?: i look up vomiting

Comments:
hi jackie,, i know what your going through,, and i feellike i have the same thing too.. i went to the doctor a number on times and they treat me like a number.. so i stop going to them,, now im doing my owm studying... and im glad that i have a computer now, it makes it alot better,,, well... i still have this vomiting poblem.. and i dont know what to do anymore.. if you can please help me out i would be relieved..... thankyou very muc

Laura - 12/30/99 14:04:31
My URL:http://fireone.tripod.com/
My Email:ldb64@midwest.net
Do you or someone you know suffer from CVS?: No
How did you find this page?: CVS webring

Comments:
Your page is done well. Best wishes for the new Millennium.

graham green - 12/16/99 11:55:36
My Email:greenone@voyager.co.nz
Do you or someone you know suffer from CVS?: no
How did you find this page?: looking for information on migraines using altavista

Comments:
i think i'll stick to ordinary migraines thankyou, yours has been a trip to hell and back see ya

- 11/06/99 16:52:50

Comments:


Stephanie Augustine - 11/04/99 19:22:54
My Email:saugustine.@berkshire.ca
Do you or someone you know suffer from CVS?: my daughter
How did you find this page?: I looked for it

Comments:
I took my 12 yr. old daughter to the walk in clinic last night after she had been vomiting steadily since 4:30 am, every 15 min. non stop.After listening to her health history the Dr. told me she had this. I needed to find more info. thanks very much

Deanna - 10/28/99 00:49:05
My Email:AnGeLDeE9@aol.com
Do you or someone you know suffer from CVS?: Yes. My 14 year old brother Steven
How did you find this page?: My Dad sent it to me

Comments:
Hi. I just wanted to sign this, because my brother has CVS. I am trying to learn more about it, because I'm concered for him. I want to know what's going on with my brother because I love him to death, and it frustrates me to see him suffer like he is. If anyone has information that they could email to me (AnGeLDeE9@aol.com) PLEASE send it to me. Thanks!!! -DeAnna

Sharon Wager - 07/22/99 05:39:44
My Email:jcwager@earthlink.net
Do you or someone you know suffer from CVS?: my 4 yr old daughter
How did you find this page?: through CVS searches

Comments:
My daughter is on the verge of major testing - which we aould like to avoid. It is very interesting to read your story and see how similar my daughter's story is to the beginning of yours. I am glad you mentioned "perfectionism". Paige tries to pretend she is never sick.

Renee - 07/21/99 04:53:48
My Email:pjschultz4@yahoo.com
Do you or someone you know suffer from CVS?: I think that my son is suffering from cvs
How did you find this page?: searching on the web

Comments:
I think that my 8 yr old son is suffering from cvs. He has been throwing up since he was just a small baby. I would bring him to the doctors and they would tell me that its the flu or a nervous stomach. His episodes usually start very early in the morning. It would last about 3 hours. He would throw up off and on for those 3 hours. Then he would be ok. But he would get sick off and on for about a week. Does this sound like cvs to you? The GI dr want to rule this out. Thank you, Renee

Helen Bartoloni - 04/07/99 01:14:26
My Email:bartscott.@aol.comm.
Do you or someone you know suffer from CVS?: daughter name jackie age 10
How did you find this page?: browsing the web

Comments:
My daughter is ten and has had cvs for about 4 years now. We switched doctors because they started to say it was all in her head. we found an excellent doctor with new treatments for cvs for her so far the episodes are shorter, still coming but shorter. k ep up your good work in batling this illness.

mary anne mcgee - 03/20/99 02:22:10
My Email:daisy272@hotmail.com
Do you or someone you know suffer from CVS?: i believe i do
How did you find this page?: researching migraine

Comments:
i am overwhelmed with relief to find out that i am not alone in this struggle. i am 20 years old and i am only now finding CVS as the diagnosis i am looking for. just two months ago i was diagnosed with 'abdominal migraines' and put on a drug called thora ine with a heavy dose of naproxen. this seems to help so far (knock on wood), but everyday i live with fear and anxiety of being sick. i always thought i was crazy, and actually believed it was in my mind. nobody seemed to understand. i find it hard to ex lain, then they get scared when they see me go through an episode. for me an episode starts at about 7 A.M. i lose color in my face and feel nauseaus for about an hour. then, i throw up. once this happens i can not even lift my head up. in order to swallo back at all i need some kind of soda. it seems easier to just let my head hang over the edge of my bed and spit, but i try to force my self to sit back and sip soda. of course i know i will throw it up. this goes on for 12-14 hours every time. i know wha it is to be in a stupor and not talk. i use hand signals to tell people that i will be okay. finally, i force myself to fall asleep with a towel under my chin. it takes at least a day to recuperate. these episodes happen about 4-5 times a year, which is ood. recently, i experience anxiety everyday because i fear going to sleep. i hate the thought that i might be sick in the morning. i thought i was alone until today. thank you for sharing your story...i am grateful. i am extremely interested in updates o stories anyone has to tell.

Molly Heron - 02/07/99 19:46:38
My Email:Mollyheron@aol.com
Do you or someone you know suffer from CVS?: I suffer from CVS
How did you find this page?: browsing

Comments:
I began suffering from cvs at the age of 4. I was not diagnosed until after a lot of suffering adn tests...probably not until I was 6 or seven. I missed alot of school. It has been very frustraing growing up with this disease. I am now 25. I have mostly g own oout of the disease. I now have gone about 2.5 years without a major episode. I say major because i still have episodes of sleeplessness and severe nausea but no vomiting. Although I have known for quite a while that what i have is real, I have never nown of anyone else who has it. It is a releif to read stories about people who suffered symtoms similar to mine. Thank you

DeAnn Elkins - 11/17/98 06:44:28
My URL:http://www.geocities/Heartland/Pointe/2975
My Email:MOM2LE4@aol.com
Do you or someone you know suffer from CVS?: Yes, my son Lantz, who is 10.
How did you find this page?: RubyRed's Parlor

Comments:
Nice page! Keep up the good work! I sincerely hope there is a cure, and it's found soon! DeAnn

10/03/98 01:29:11

Name: Bad Bunny

My Email: Email Me

Comments:
Nice page. Very informative. Keep it up.

chicky-ma-ma - 08/21/98 04:25:56
My URL:/Heartland/Acres/8911
My Email:chicky_ma_ma@hotmail.com
Do you or someone you know suffer from CVS?: no
How did you find this page?: I am your GeoCities Community Leader

Comments:
WOW. I am very impressed with your page. It tells a great story. I am your Community Leader for GeoCities, so if you have any questions about GeoCities, please let me know. I usually just scan through the pages I am supposed to check... but I read eve y single word on yours. I hope everything works out for you:) I would love to see more in the future.

- 08/02/98 00:37:11

Comments:


Donna CHaffins - 07/16/98 21:31:11
My Email:hillbilly@apollo trust.com
Do you or someone you know suffer from CVS?: yes my 5 yr. son
How did you find this page?: listserver-cvs

Comments:
Dear jackie, Skyler has been sick since he was 8 weeks old. I hope he grows up as stong as you. Good luck with your new web page. I think many people will be visiting for extra help. God Bless You!! Love Donna

Joyce - 07/16/98 18:58:40
My URL:http://www.geocities.com/Heartland/Hills/4675
My Email:-rubyred-@geocities.com
Do you or someone you know suffer from CVS?: Yes, my son Jeremy.
How did you find this page?: I was given the honor of helping create this page for you.

Comments:
Jackie, you have shared one of the most powerful stories I have ever read about CVS. I am so proud of you for writing this. So many people will read your story and see themselves or their child in the story you've told. Some of these people will have n ver heard of CVS before. This page will be the answer they are searching for. Some of them will already know a lot about CVS and will relate to your story of how you've found the answers. All will be all too familiar with the illness and the heartbreak ng effect it can have on individuals and families. Still others will be physicians who are learning more about the illness. Others will be people who have never seen anything like this before but who MIGHT, someday... and because they have read your pag they may be able to pass on invaluable information. All of this leads up to one thing Jackie. Thank you for sharing this story. You are one special lady.