Hi welshsarah18,

It does feel good to finally have a name to put with this horrible disorder,
doesn't it? Just finding out it had a "real name", and was a "real
disorder" made me feel a lot better. I think some of us think that we are
going crazy before we hear the term "CVS". At least I did. My name is
Patty and I am 47 years old. I started exhibiting the usual symptoms of CVS
about 9 years ago, although the more I learn, the more I am beginning to
think that maybe some of the things that happened to me when I was younger
were the beginning of CVS, I don't know. I am a divorced mother of 2 adult
children, and my first real "episode" happened the first day of my first
"real" job after I got divorced. I missed the first 3 days and had to start
the next week.

I consider myself a CVS survivor because I am surviving CVS. It is hard to
hold down a job missing time like that. I was lucky in a way. My immediate
supervisor was the person to suggest to me that it wasn't all in my head,
and that people just don't vomit for the attention it brings. He encouraged
me to keep going to doctor after doctor (and I bet I went through almost 10
doctors) until I found one that would listen to me, and not just "label" me.
When the "big bosses" were starting to get annoyed, he intervened for me
because he had talked to me during an attack, and had visited me in the
hospital, and he know how really sick I got. He also knew how hard I worked
during the other 27 days in the month. I have actually never gotten a
definitive diagnosis of CVS, but my "sort-of" new primary care doctor was
willing to listen to me, read the materials that I gave her on CVS, and
believes me! I haven't had an attack in almost a year, so she never had to
experience a full blown attack with me yet, but she was willing to believe
in me enough that she is keeping the medical literature with my chart, and
promises me that if I ever have to go to the ER because of another attack,
she will call ahead and let them know what I have and how to treat it.

Start journaling your attacks. Journal everything about them. What you
were doing the day before it happened, how you felt-stressed, level,
depressed, excited, etc., keep track of what you ate, when your last/next
menstrual period was/is, were you feeling worn out or a little more tired
than you normally are, had you been doing any hard exercise, anything, even
if it doesn't seem important. In the beginning, the episodes were very
sporadic, and I kept thinking that I must have eaten something bad. And
you're right, life is stressful. How can you possibly change that. But by
keeping a journal, I could actually see when and where and how I would get
an attack. It also helped me to see that the episodes were getting more
frequent, and they were much more intense and they took longer to recuperate
from. But because of journaling, that is how I finally figured out that
mine is related to my menstrual periods. Mine happen 1-3 days before my
period is due. The minute the attack ends, I get my period. After seeing
this correlation in my journal, I took that information to my doctor.
Because I am near menopausal age, the doctor put me on hormone replacement
therapy. Well, wouldn't you know it, the very same month that I started the
hormones, I never had another attack. After 2 years of being on HRT, I
wanted to get off of them, especially in light of the new findings. The
same month that I stopped taking them, I had my first CVS attack in 2 years.
Aha! A connection. As long as I am on those pills, I don't get attacks.

My attacks are pretty bad when I do get them. I start out with severe
cramping. For me, it was more painful than childbirth. After an hour or
two of the pain, I would become nauseous. Then the vomiting would begin. I
would vomit probably every 10 to 15 minutes. I would be nauseous and vomit
like that for the next 24-36 hours, if not treated. I also shiver, feel
freezing, but sweat like crazy. Sometimes I just sit in the shower trying
to keep warm. I got through 3 laundry loads of clothes from sweating so
much. I craved ice, or icy water. I know it will make me vomit, but for a
few minutes after having it, the nausea will go away. I know that I will
only vomit it back up within 5 minutes, but it hurts less to vomit water
than to dry heave. I am also one of those people that try to force
themselves to vomit. Not because I enjoy making myself sick, or even
because it would help, it is just a behavior that I exhibit. I know that
vomiting wont make the nausea go away, there is just this "knowing" or
"feeling", that I would feel better. I also knew that if I could just fall
asleep, when I woke up the nausea would be gone.

In the beginning, I would go to the ER as I knew I was getting dehydrated.
Most of the time I got very bad treatment from the medical profession. It
wasn't just at one hospital. I have been to 3 different hospitals because
of CVS (and going through so many different doctors), but no where was
anyone knowledgeable about CVS. Not only weren't they knowledgeable about
it, but when they couldn't find anything physically wrong with me after all
their many many tests, they would either label it Irritable Bowel Syndrome,
or they would try to blame me, saying that I was bulimic (see above-trying
to make myself vomit), or drug seeking (asking for just a shot a Ativan,
just to knock me out so that when I woke up, the episode would be over), or
just wanting attention (after all, they blamed it on depression. Who
wouldn't be depressed with all those test-most of them very unpleasant,
especially when you are sick-having doctors suspect brain tumors, cancer of
the GI tract, and the whole time, terrified that I would have another
attack, dreading how they would treat me if I had to go to the ER again).
Let me tell you, I work at a medical university in upstate New York, in the
Dean's office, and I have to deal with many doctors there, and wanting to be
doctors, supposedly, some of the best in their field, and I got no better
treatment from them. "Cyclic Vomiting Syndrome? Oh yeah", then they turn
their backs and walk away. They don't give a crap about CVS. There are
much more interesting diseases for them to give their time to. (if you
think you hear hostility in these words, you do. CVS, at first, nearly
killed me. It made me depressed, it had me scared all the time, it had my
family thinking I was nuts and just wanted attention (I just started talking
to my only brother again after 5 years because he got a little nasty with me
and told me to just grow up and quick faking for attention), made me fear
losing my job (my coworkers treat me like I am some sort of a hypochondriac,
no matter how long its been since I called in work sick), and finally,
pushed me to the edge where I tried to kill myself because I just couldn't
go through another attack, not wanting to go to the hospital to get the help
I needed, because the lack of compassion (not to mention when the nurse
restrained me because they caught me trying to get some water too many
times) was too much to bear when you are so sick and so weak.)

Then, one day at work, I was reading MSNBC on the computer, and I spotted an
article about "The Girl Who Couldn't Stop Vomiting". I read that article
and I knew immediately, that was what I have! I did more and more research,
found CVSA on the internet, and all I can say is Thank God! Knowledge is
power, and if nothing else, CVS can not scare me anymore. We (Me and CVS)
are now on equal footing, it is now a fair fight. It isn't a killer
disease, it is just an inconvenience to me. I wont let it control my life.

I am going to a new GYN in October and I am going to give her the medical
literature I have on CVS, and ask her to agree with me to let me get off the
HRT. I just don't want to take them anymore, even if it means that the
attacks will start again. Maybe with all of my doctors knowing that I have
CVS, and being willing to work with me by calling the hospitals if I have an
attack and prescribing to them the treatment for CVS, it wont be so bad this
time around. We'll see.

If you ever need to vent, feel free to email me. And know now, that this
thing finally has a name, and there are others who also go through what you
have been going through. And there is life beyond CVS.

In health,

Patty