Monday, January 12, 2015

Cyclic Vomiting Syndrome

I went to the doctor today.  I sat in the waiting room feeling so nervous I thought I might actually throw up--when I got back there, I started sweaty and breathing quickly.  Turns out, I'm terrified of the doctor.  I've never had a particularly bad experience at the doctor, at least no specific event that I can pinpoint and say, 'yes, that is what led to this White Coat Syndrome.'  All I have is a series of frequent, frustrating doctor appointments in my past.

As I was discussing my apprehension with the doctor, I said to her "When I was younger, I had Cyclic Vomiting Syndrome," I added "I'm not sure if you know what that is," and she said that she did. I was amazed-- and immediately transported back to my show choir classroom when I was 16 years old.  A Junior in high school, I was sitting on the steps in the room clutching a piece of paper, feeling such utter elation that they finally knew what was wrong with me.

According to my mom, it started when I was about 2.  These bouts of severe nausea and vomiting that were pretty much unable to be explained.  This continued for several years, and I definitely have vivid memories of it when I was older.  I remember sitting in the nurse's office, after having had to run to the bathroom in the middle of class.  I remember the sheer suddenness of the onset.  I could be feeling fine one minute, and the next, I would begin feeling nauseated and in desperate need of a bathroom.

Doctor's visits proved fruitless--no one knew what was wrong with me.  When I was 8, one doctor basically suggested to my mom that I was bulimic. (He asked her 'do you actually see her throw up?). She knew this wasn't the case though--one time, on the way to school, we were almost to the campus, and I suddenly said "I don't feel well," and she started to protest, saying we were almost to school--until she saw my face.  The color had drained from it, and I ended up needing to roll down the window.

For many years, this unknown thing kept following me around, it could strike at any time.  My mom & dad received several calls from me in the nurse's office on various days, and they had to come pick me up because I couldn't stop vomiting.

One time, I was going to Science Camp on Catalina, and I was so excited! But, that morning, I started to feel an 'episode' coming on. Sure enough, it hit.  But, not wanting to let my partner for the Science trip down, I went anyway.  I spent the whole time on the boat sick.  Everyone thought it was sea sickness, and I tried to explain that it wasn't.  Nobody would listen to me.  When I finally got to the camp, the counselors (who thought I was sea sick) didn't really know what to do.  Eventually, I asked them to bring me a chair into the bathroom, where I proceeded to sit in front of a bathroom stall for the next 4 hours while all of my classmates went snorkeling.  I threw up about 17 times (yes, I used to keep count). After the episode was over, I crawled into the top bunk and sipped some ginger ale the counselors had brought for me and proceeded to sleep.  Luckily, the next day I felt better, and the trip ended up being great by then.

The sickness itself was terrible--nobody likes throwing up, and having done it so much as a kid, teen, and young adult, I like it even less.  But, what was even worse was the fact that no one knew what it was.  We went to see so many doctors, and nobody knew. Finally, my primary care physician sent us to go see a specialist. I remember feeling hopeless, though.  I knew that no matter what tests they did, they wouldn't know what it was.

Nevertheless, we went to the specialist.  I had to eat radioactive oatmeal for one test, and the other I had to drink a huge thing of barium.  The barium was the worst.  The oatmeal was kind of fun--just tasted like regular oatmeal.  But the Barium?  Awful.  To this day, that day remains one of the worst days I've ever had. Barium is chalky and gross and terrible all around.  I remember not being able to do it, crying to my mom-- she got mad at me (side-note: years later, she had to drink Barium, and immediately apologized to me for getting so angry), and I just cried 'They're not going to be able to figure it out anyway, so this will just be for nothing!' Finally, I got the barium down. They took a couple pictures of my insides--and then the barium wasn't digesting fast enough, so they made me drink something else that tasted exactly like bile.  More tears, more pictures, and finally a few days later we were called back into the specialist's office.

I was right. They hadn't found anything wrong with me from the radioactive oatmeal and barium.  But, the doctor handed me a printout and said "I think you have Cyclic Vomiting Syndrome." He explained that the diagnosis was new, and that not that many doctors were even aware of its existence.  As I read the printout, and read through the symptoms, I felt so happy.  I had all of those symptoms--and they finally knew what was wrong with me!

I told everyone who would listen at school (no one really got the gravity of the situation, or at least they did not appear to, but that didn't really matter).  For years I had suffered with this thing that didn't have a name, and now it did: I had Cyclic Vomiting Syndrome.  They don't really know what causes it--different theories are around, one of which says that a traumatic head injury can cause it, another says a traumatic birth can cause it--but it had a name for me, finally, after years of not knowing what was wrong with me.

I don't really suffer from episodes so much any more, though I always have a sensitive stomach, and seem to be more prone to nausea than most-- but I spent years with this nebulous thing hanging above me, and now I wonder if that has any sort of bearing on the severe "white coat syndrome" that I experience now.

Back when I was first diagnosed, there were few resources for me, which is probably why I clung so desperately to that little printed page from the specialist.  But, now, with the advancement of the internet, there is a community out there-- there is an association! There's a board of directors! There's fundraisers! The Mayo Clinic AND the CDC list the condition.  

Even though I'll probably have white coat syndrome for the rest of my life--I am so glad there's a community out there talking about cyclic vomiting syndrome.

To learn more about Cyclic Vomiting Syndrome (CVS), go here: CVSA




*also, probably the last thing you want to do after reading an entry about CVS-- however! New food on the food page! :D

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