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Horanimals

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Reply with quote  #1 
Hi everyone!

I thought it might be nice to have a single place to share who we are, and a bit of “our story”.  Many of us know each other, and many of us don’t.  I thought this would be a good way for us to get to know each other and why we are here.

This is posted in both the main forum and in the Adult forum.  Please introduce yourselves in the adult forum if you are an adult with CVS or have an adult family member with CVS.  Post in the main forum if you have a child with CVS or a child in the family with CVS.

Click on the  “  marks in the top right corner of the following post and this will start a new message with the questions you can then answer.

Please do share.  I’m really looking forward to hearing more about you all.
I will start the ball rolling.

Thank you!!

__________________
~Lesley
mom to Riley-12, CVS since age 2, & Autism, Jake-21, and Josh-16

There are two ways to live your life:
One as though nothing is a miracle and the other as though everything is.
~Albert Einstein
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Horanimals

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Reply with quote  #2 
Your name:

Who is the CVSer in your family and what is their age?

Please tell us your story, and how you came to be here:

In my current or ‘previous life’, I am/was a:

__________________
~Lesley
mom to Riley-12, CVS since age 2, & Autism, Jake-21, and Josh-16

There are two ways to live your life:
One as though nothing is a miracle and the other as though everything is.
~Albert Einstein
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Reply with quote  #3 
Hi all!

My name is Shannon (aka Frippledip) and I am a 33 yo female from San Diego.  I found this site just a couple weeks ago, and I am so glad I did.

Briefly, I started getting violently sick a couple years ago at my friend's wedding, so bad that I had to go to the ER.  I thought that was the first time it happened, but thinking back over the last 5 years, I remember feeling ill, sometimes puking, sometimes not, whenever I saw my friends who live across the country, when I met my fiance's parents, or going out to dinner, on vacation, etc.  It started to become a joke among my friends, how I always got sick.  Well it's only started landing me in the ER for a couple years now, and I've been on Prilosec for heartburn for almost a year now.  My regular doctor suggested anxiety, so I started taking Xanax when I felt anxious, but part of the problem was that it still seemed to happen during times of "positive stress", but I didn't necessarily feel anxious or stressed.  I'd always puke at a party!

So, long story short, I googled my symptoms, found out about CVS, and even though I have not been diagnosed, I think the odds that this is what I have are very good.  I still have to get some more tests done, but my fight has only just begun.

In my other life I am also a psychology major, the worst kind of patient.  Anyways, it's been great meeting all of you...let's keep the ball rolling!
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jessever

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Reply with quote  #4 
hi am Jessica, 60, been doing this since 1950, Complex medical history. I have written  my story out twice today,spending hours and when i go to preview itand spell check,I touch something and it gets dumped.Can anyone help me with this?Id really like to talk.
Thanks.
Jessica

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Jessica- 60,Monterey,California, diagnosed last year.
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jessever

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Reply with quote  #5 
I'm Jessica.Well, the little message got in OK, so ill keep trying without spell checking it.

I'm 60, been vomiting for decades. Threw up all the way to Japan on the ship,1950, kept throwing up when we were quarantined in Tokyo harbor for mumps for another 3 wks. One of those lovely family stories they kept talking about.I first remember a parent dead in the bed, but me still vomiting in the moonlight, Taiwan, age seven.Vomiting and pain with periods, at 11, mother gave me Darvon and rum and coke till it stopped., always with sleep. ( not a bad solution, given some others MDs have tried.)She was a surgical and public health nurse. My dad ran hospitals for the navy, and was a corpsman in the war, so a lot of health care happened at home while we lived on islands throughout Asia.At 19, the shand clinic decided I had endometriosis, and stopped my periods for 2 years with heavy, heavy estrogen.got mono and hepatitis from that stress. Went on to work hard many years, cvs always lurking.

I became pregnant at 35, threw up all day everyday for 9 mos. Realize now that I went into prodrome 2 days before labor,, knew i was  in labor as I vomited seven minutes apart. Another great family story, except that my husband got so disgusted with my vomiting instead of "getting on top of the pain" that the marriage eventually did not survive his attitudes about health and illness. Especially since I kept being ill had to eventually leave my career as the director of the health care practice for an old, esteemed consulting firm and the only diagnosis was depression and chronic pain.

Then there was a decade of an undiagnosed severe C +L spine injury, allergies, asthma, copd, arthritis, fibro, shingles, depression and eventually, they said bipolar was why I was dragging into the ER, and put me in the psych ward for 2 weeks, and never stopped the vomiting. That treatment has been medieval and the meds mindbending.Even since I found CVSA last year, and gave the info to my doctors,I've had a few admits that started in the ER with vomitingand turned into horrible treatment in the psych ward, in general. Shower forbidden. Water forbidden, forced to sit and eat with others who are eating, then scolded for throwing up, and told to "work on my anxiety.' A self inducing adult just makes nurses  and doctors insane. The only reason I am still with my shrink is that he was at least trying to care of me so I wouldn't be at home alone. The internist just didn't careand frankly couldnt be bothered to contact anyone.

So I have a new MD- she's talked to Fleisher, and we're off on a new adventure. Except I am still so full of fear and rage about what has happened to me in their hands. I trust no one except Fleisher. How do we work though this stuff? Anybody working with the CVS preventative drugs well? With any of my conditions? I'd like to hear from senior cvs'ers, since we have certain challenges, but welcome all. Tell me how you are living with this.

Jessica
Not a typist, sorry

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Jessica- 60,Monterey,California, diagnosed last year.
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Reply with quote  #6 
Im Lindsey... i am 25 years old- born and raised in Muscles Shoals, Alabama but i am currently living in Birmingham... I am a single mommy to my WONDERFUL 3 year old daughter- Emma.. and i am also raising my cousins daughter Alisha- she just turned 2 in September! MY GIRLS ARE MY WORLD!!!
 Like Shannon- im not diagnosed yet.. but my doctor feels that we are on to something with CVS and we are reasearching it more and just have to rule out a few more things... although- i dont know how there could possibly be ANY tests that i havnt already had done.. most of them ive had more than once!! - im sure most of you feel me on that!
i found this place by searching online for my symptoms since no doctor can figure me out... my story.... uhhh i was 21 years old when i got pregnant... i was sick for the entire 9 months.. night and day- in and out of the hospital no meds were working for me- i just threw up my guts 24/7 and that was my life pretty much... i thought that it was pregnancy sickness... but after she was born- i still continued to get sick almost daily until about February and then it slacked off a little... not for long... it started back up and ive been misdiagnosed with everything from acid reflux to a nervous stomach to anxiety/depression....None of which were correct... and still to this day almost 5 years later am throwing up at least twice a month- with the exception of a few good months with no barfing!.. i have my good times- but i live a very stressful life, and it has been made VERY obvious to me that stress affects my stomach- i throw up more when i am really stressed out!.. i tend to get sick the most this time of year... or when im really stressed out... i dont care when or where we go- if we take a vacation.. i will throw up... ive thrown up in just about every public place that i go to regularly... I teach dance and when ever my girls perform or i perform- i am usually fine until it is over.. its like i hold it all in and stress to the max over it then it ends and i just throw up my guts! last year at the recital i was puking back stage after my last dance went! i guess theres not much else to say.. Im still a very happy person- i really try to stay positive threw all of this.. kuz when i let myself get sad- i get really sad sometimes... and that just makes me more sick.. i have 2 baby girls to live for and they are my life- i dont care what is going on with ME... its all about them- like i said.. they are my world!!
I havnt let this stop me totally yet.. im still teaching dance/gymnastics part time... i do the best i can with that, sometimes its rough since its so physical when im really not feeling great.. i also work at a gym part time.. and im a full time mommy... im lucky to be able to bring my kids to work with me alot of the time! I cant leave out another important member of my family... my sweet pitbull.. Dixie! she is an angel and i love her and i dont care what anybody says about pits being dangerous.. shes the sweetest dog ive ever owned! Anyway- thats me!! and you will learn from my posts.. i tend to ramble alot.. if i drive anybody crazy just tell me to shut up! hahaha im great at running my mouthhhhhhhhhhhhhh...... its nice to meet everyone- i look forward to getting to know you all!! THANKS
Lindsey
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Guitargirl

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Reply with quote  #7 
My name is Nicola, I'm 21 and I live in the North of England.

My parents tell me I was always a little bit of a sickly child. I used to get travel sick easily and there were a few times when I was a todler that I got sick for no apparent reason and it was just assumed I had a virus or stomach bug of some kind. However I usually recovered from these things fairly quickly and so nobody thought much of it.

When I was about 6 I got sick, only it was a lot more severe than anything I had had before. I coul;dn't keep any food or drink down and it dragged on for days. My parents got quite concerned and called a doctor. The doctor ssaid it was a virus and that I should be ok in a day or two. The next day there was no improvement, so my mam called out another doctor. He said more or less the same thing as the previous doctor. The next day, as I was no better my mam called out yet another doctor. I seemed to be getting worse and she wasnt happy to just sit by and do nothing when I was so ill. The third doctor said I was severely dehydrated and needed to go to hospital and so that was where I stayed untill I recovered.

About six months later a similar thing happened again. I can't remember the details very much, except for lying ina  hospital bed while my mam answered loads of questions, I remember her telling the doctor that something similar had happebed six months before.

After this my episodes started to get more regular. I had many tests done, but all of the doctors and everybody else was at a complete loss as to what was wrong with me. My parents started to get quite worried and a bit frustrated with the docs as there didnt seem to be much anyone could do to help me.

The patturn of getting ill and going to hospital and having more tests and being ona  drip until I could drink and keep it down on my own became a regular one and hospital became something of a second home over the years. I didn't really like it there though, abd would plead with my mum not to take me to the hospital. As soon as I felt remotely better/ablew to talk I would make it known to the doctor that I wanted to go home.

Many things were suggested, I've already mentioned stomach bugs and viruses, but I think the thing that sticks in my mind the most was the suggestion that it was "all in my head". This was a confusing thing for a child to be told, and as I grew up I started to wonder if it could possibly be true and felt guilty that it was something I was doing wrong.

One day when I was about thirteen my parents had asked for a second opinion and we were given an appointment to see a specialist at a hospital at a city near by. This man explained CVS to us, and showed us some studies and told me thats what I had. When we got home my parents looked up CVS on the internet and printed out loads of information and stories of people that were just like me  (the internet was just starting to kick off around this time). I cant tell you how it made me feel to know that there were other people who were going through the same thing as me, that there was a name for the condtion and it was an actual illness. I felt so moved I wrote a letter to the CVSA UK. My health actually started to get a bit better a little while after this point in time, I think the medication I was on had something to do with it, possibly also a 'grew out of it' slightly. My mam thinks that knowing what was finally wrong with me helped to, maybe because I felt more in control of the illness I was able to recover more quickly because I didn't feel quite so helpless. I dont really know what it was, but for whatever reason when I was about 15/16 I noticed my attacks rarely lasted longer than a couple of days, whereas before they had dragged on for over a week or more, and were happening every other week. They were still pretty regular, but I was able to manage them at home without having to go into hospital. Every now and again I would have an attack that dragged on for a while, that would last over a week, but it was never quite as intense as before. 

I still get ill, in the last five weeks I was ill for two weekend in a row. But luckily it was the weekend so I was able to go to uni as normal during the week. Often my trigers seem to be things like not enough sleep and stress/anxiety. For example, I was once ill the day of an interview for university. I think nerves about the interview were a factor, but I was also quite run down in general and hadn't had much sleep. (stress, anxiety seems to be more of a triggor for me than positive stress). I get tired a lot, I dont know if this is CVS related but I strugglwe to concentrate for too long and get worn out very easilly. However, I did manage to complete a degree in june, dispite a few minor CVS-related hiccups, including my inability to turn up to an exam as I was cycling. I also managed to hold down a job this summer for seven full weeks without missing a single day sue to illness (this was a big deal for me). I did have an episode or two during this time, but luckily they were on days I was off work anyway.

And thats about it, I stop there 'cause I've been talking for quite a while!

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Nicky

xxxx
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Reply with quote  #8 
Hi everyone!  My name is Kiley and I live in Texas.  I have had CVS since the age of 13 and am now 23 - just diagnosed in April.  I was very active in school activities:  volleyball, cheerleading, track, softball & was on the honor roll.  By the time I was 15 I was missing so much school that I had to withdraw and ended up just getting my GED because I couldn't even go to school since I was sick all the time.  I have been to the ER too many times to count - and for several years I didn't even have insurance.  Of course, every test had been run on me.  One doc did a laporoscopy on me when I was 15 to see if it was endometriosis and it wasn't.  After the surgery, she came into the recovery room and told me my mom she would no longer see me and said it was all in my head and walked out of the room with both my mom and me in tears.  About an hour later a psychologist came in and sent my mom out and kept asking me if I was trying to attempt suicide and if I was a drug addict and once again left me in tears.  Since then I have been and out of the hospital numerous times needing phenergan, dilaudid and IV fluids.  I finally found a GI doc that had "heard" of CVS and diagnosed me with it but he didn't actually know anything about it and was not willing to research it.  He set me up on a treatment plan to receive anti-spasmodics when I am in the ER (which are technically for IBS) so of course they don't even help me whatsoever.  I have since found a new PCP who is willing to help me in any way he can - he found me a new GI doc that I am going to see later on today for the first time.  The ER/hospital will not let my PCP override the previous GI's care plan because technically he's a specialist in this!!  So, we're at the point to where I am going to see if this new GI will be able to override the pointless treatment plan so that when I go into the ER I will actually be able to get the proper treatment that works for me.  I used to have several episodes a week but with my PCP's help it has reduced to 1 every two weeks.  He has put me on klonopin, propanalol, and Imitrex nose spray PRN.  Sometimes I am able to abort an episode with this and sometimes I am not.  I've had doctors accuse me straight out that I am a drug seeker even after they have spoken to my PCP - they won't listen to him.  My last ER visit the nurse told me that the doctors there don't like to listen to other doctors and will do it their own way.  I asked him if he had heard of CVS and how to treat it and he said no so I tried to give him articles from here and he refused to take them and left the room.  My triggers are negative and positive stress and anxiety and food - I can't eat an actual meal, I have to eat small snacks throughout the day otherwise I'll get sick.  So anyway, that's the "short" story...hopefully today I'll get some assistance from this GI doc.  Thanks for reading y'all!

Kiley
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jessever

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Reply with quote  #9 
Hi Kiley,Thanks for sharing your story, it helped me a lot. Im Jessica.Seems like no matter our age, medical psychiatric prejudice is there. Do the children get it like we  adults do?I  think I read on this site once that there is a protocol for informing your hospital ER of your diagnosis and your rights, inclding   a copy to hospital counsel (I liked that!)- anyone know about, or ever used this approach?
Before I met my new MD I was ready to launch an info campaign on our ER since I know it is a contract company and the Dr.s could care less what the local mds think.Everyone squwaks liability if you dont do it the way the ER wants to do it, yet if they believe you are having certain things, they can  really hop to it. How to get on that list?Thouhgt Id get their names and mail them hardcopy of the Fleisher article with a  brief heartrending you know me letter,even thought ofpaying for an office appointment, between episodes ,with the MD Director of the ER, cause they have all seen me for 20 years.Anyone done  any of that? Any thoughts?

But my new Doc says shes going to meet with them! she does regularly, and right now she thinks she cantreat me and keep me out of episodes, and ERs.And she just did. She shut down a 3 day  in 12 hours  at home  ten days ago and  then this past weekend again i began an event and the new cocktail shut it down and put me to sleep in the early emptying phase, under 6 hours.AMAZING. Yet, after all the long episodes ive had, I cant  believe,( because im so fearful of the place, im sure) we wont be back to the hospital for dehydration  IVs again, unless she can order them to my home from some care company.Any experience with home care ,VNA,anyone?
Most of you talk about managing ang reudcing# of  episodes, not getting rid of them altogethr.When CVSers talk about episodes x times a year, are you talking about throwing up for a week or two, or a day or two? I need a yardstick.

I now  actuallybelieve I can abort sometimes.I think I did"make one miss" last week with belladonna.This is amazing ly goodfor my mental health and makes me want to strangle all the psych people who have been promoting mental illness to me as mysymptoms got worse. Besides  my shrink, I even went to an Rn therapist  for months who claimed to know CVS, but most of her patients were eating disorder. Didntgo near my primary problem with  treatment, knew none of that.Seems like I have, andmany of us could have, normal reactive anxiety and depression to real, traumatic events , isolation, lack of hope and failure of medical care.Doesnt seem a bit nutty.What are your shrinks and therapists doing with you? Anything useful?Or dont we talk about that here?Private message me, whatever. I ve never been on a message board before.
Thanks again-
Jessica


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Jessica- 60,Monterey,California, diagnosed last year.
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JewelsIM

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Reply with quote  #10 
Jessica,
    I have responded to this post in the thread "Jessica (jessever)" I found on the Adult CVS Patient Forum.

Julie

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Julie Kennedy, CVS sufferer for 40 plus years,
Mother to Adam, 23, CVS sufferer since age 2


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mahler1987

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Reply with quote  #11 
Hi, I'm Pattie, 44.  I remember my first episode at 18.  I wasn't diagnosed until a few years ago.  I just got released from a 4-5 day hospital admisson, so franlky, I'm still very worn out.

I will say the key  is to get an internist who will listen  I too have been on that medical merry go round.  Ithink we all have  been from time to time.  I've posted my story numerous times.  Just do a search of our names.

Welcome aboard

Pattie

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I may have CVS but CVS is not me.
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Smokeater42

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Reply with quote  #12 
Hi All
I am Smoke, i have had CVS for 15 yrs,10 yrs un Dxed, for that 10 yrs i was puking everyday from anywhere from 5 mins was the shortest to 61 hrs straight gasping for air between heaves, then about 5 yrs ago i found CVSA web site by accident and asked for help as the stories sounded alot like mine, A AWESOME Lady on the Board named Ginny gave me the name of a CVS Doc and between her and Amy with the Voodoo pills got me down to 2 cays a week.
BUT i have many triggers so it can be more than twice aweek,
i lost my Job as a City Fire Capt due to calling in or going home from a shift sick, i am also a Disabled Vietnam Veteran and a Ordained Minister , and if ya have guess can't spell for my life, most of the folks on the board know me as i go to the puke walk in CT except for this yr becouse of CVS and i try to go to the support group meeting in MA when i can i live in Northern New England and am the King of Puke
Heave hooooooo
Smoke

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When you have CVS life is one puke after another
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Reply with quote  #13 
Hello,
My name is Valerie and my daughter has had cvs for 4 years now. It started when she was 18.  I just found this site and have told her to join.  She has an episode every month.  It usually lasts about a week or 2.  She almost always ends up in the ER on IV's.  The problem there is that they just don't understand CVS and some of the DR's she has seen has never even heard of it.

I am so glad I found this site.  We are now going to find a DR who knows CVS and go from there.  I talked to DR. Venkatesan today and am going to try to get my daughter to her.  It will be hard because traveling always is a trigger.  I live in Hawaii and my daughter goes to school in Oregon.  Every time she comes home for a visit it triggers an episode coming and going.  Needless to say, she doesn't come home much.  I end up flying to Oregon about 6 times a year (at least) when her episodes are major.

If anyone has advice for me I would really appreciate it.
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Lori

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Reply with quote  #14 
Quote:
Originally Posted by Horanimals
Your name:

Who is the CVSer in your family and what is their age? I am and I am 43 years old.

Please tell us your story, and how you came to be here:  I have had CVS most all my live but did not know what it was called until about 6 years ago when I read a News Paper in Florida that talked about a teenager that sounded just like what i had so my mother and I took the article to the doctor and asked him.  He told us that is what he thought I had and give me an RX for the ER when I went to the ER so they would know what to do for me. About 2 years ago I find a nurse that said her husband had the same thing that I had.  We got a web site and a doctors name to call about what I had.  The doctor was in Missouri.  After my mother talked with him he told her he would like to see me  to tell if I had CVS.  My husband , mother and step-father  all went with me to see the doctor in Missouri.  The doctor in Missouri said yes you have CVS and gave me Med's to take when  I have an attack of CVS and also changed one med and added two more med's.  He is a great doctor.  This year has not been a good year for my CVS.  I have been sick each month with CVS.  My doctor like for me to try to go to the IV Clinic before going to the ER.  It has worked one time and one time it did not work.  This is my story about my CVS.
I do not like having CVS at all.
In my current or ‘previous life’, I am/was a:
Office worker and now I work in a cafeteria at a school.





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Lori Roswold
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klconner

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Reply with quote  #15 
I am Kate, a 41 year old CVSer from Kansas.

I have been dancing with the Puke Monster for 17 years now, I was diagnosed in 2005.  There is some doubt as to wether or not I had CVS episodes as a child.  I'm an army brat with lost medical records from birth to about age 6.  The records I can find have entries where I was taken to the hospital for vomiting, all concluded it was food posioning or gastrointeritis of some kind.  I remember waking to find I had vomited in my sleep in grade school.  In middle school I was diagnosed with spastic colon, but all that went away before high school. 

As an adult I sarted haveing symptoms in 1990.  Being a new teacher in a room full of 1st graders it was always chalked up to stomach flu.  I noticed that when I worked a full day and ran my 3 miles a night I would end up exhausted and wake up to vomit in the middle of the night.  I was diagnosed with chronic fatigue syndrome and told to cut back.  As time progressed the exhaustion and fatigue continued and I was vomiting so hard I pulled my back, legs, and just about anything else that can be pulled.  Fibromyalgia was added and over the next few years I took 2 short term leaves of absence from work.  They didn't help much.  I simply puked at home instead of at work.  I was sent to a 3 week inpatient chronic pain clinic.  Still puked.  Went to the ER and was sent to a psych ward for evaluation.  Left a week later with the diagnosis of manic depression and possible psychosis.  That started some really serious medications that left me a zombie.  All that accomplished was to make me a zombie suffering from cfs and fibro who puked.  My psychiatrist added somatization disorder to my list of diagnoses, so then I was a zombie suffering from cfs, fibro who puked when seeking unappropriate medical attention.  When my pcp was at her wits end she called KUMed to see about yet another psych work up, possibly another pain clinic, and she was told to refer me to Dr. McCallum.

This was before KUMed had the CVS clinic.  I was seen by Drs. McCallum, Namin, and Hyman.  I left with the diagonsis of CVS and a slip of paper with cvsaonline.org written on it.  I credit my online family as being just as important in my turn around as the daily medications I'm on.  I couldn't believe there were so many people out there who knew what I was going through.

In my former life I was an elementary teacher (kg was my favorite) for 11 years before CVS drove me out of the classroom.  Currently I am taking classes part time in hopes of  becoming a  radiography tech.  With my love for working with kids and my experience with chronic illness - not to mention the hours spent all by myself in a cold room with big machines - this just feels like the right direction to go.

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With perseverance, the snail made it on the ark.
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