kristina's CVS Story
My name is Kristina, I'm nearly 29yrs old, and I live with a rare illness called Cyclic Vomiting Syndrome.
Cyclic Vomiting Syndrome causes severe episodes of nausea and vomiting that can last for just a few hours to several days, weeks or even months for some patients. CVS affects just 2% of school aged children but it can occur in people of all ages. There currently is no FDA approved treatment for CVS and no known cure.
Things became severe for me at age 4 but I've had symptoms since birth to a lesser degree. I didn't always have a name for what I was suffering from, in fact, I went 19 long years with no diagnosis for what I had. I saw a lot of different doctors through the years but none of them knew why I was extremely sick. Eventually, doctors started saying, "well since we can't figure out what's wrong with you and all tests are negative it must be in your head." My mom didn't know what else to do so she agreed with the doctors and around the ages of 9 and 11 I was placed in mental hospitals. At one mental hospital I went into a severe vomiting episode and I was locked in a blue padded room and told, "it's a behavior you need to get out of." I was locked in that room for 5hrs where they wouldn't even let me out to use the restroom so I puked and had a bowel movement on myself. My mom found out and pulled me out of that hospital the next day. After that I stopped really trying to figure out what was wrong with me and dealt with it at home only going to the ER for the episodes we couldn't stop at home. I saw a few doctors who we mentioned the episodes to during that time but none had answers.
During my schooling years it continued with me missing as many as 47 days of school in grade 10. I was having CVS episodes several times monthly and each episode lasted 2 to 7 days with the longest episode lasting 2 weeks. I had to miss my high school prom, I had to graduate high school a year late and even missed my high school graduation. At age 15 I tried to get help again by going to a GI doctor who did more of the same tests finding nothing and I later found out he said in paperwork that he thought I was "malingering in an effort to miss as much school as possible and I believe she may be bulimic" but he never told myself nor my mom this. I again stopped seeking treatment and dealt with it at home by myself whatever way I could to get me through each severe vomiting episode.
In February 2011 I saw an episode of The Doctors TV show that got my attention. Actress Chandra Wilson from Grey's Anatomy was on the show talking about her daughter, Serena, who has episodes of severe nausea and vomiting that was diagnosed as Cyclic Vomiting Syndrome. Every symptom fit mine exactly and I knew I had found the answer to 19yrs of severe episodes of nausea and vomiting. I took the info to my primary doctor and got a referral to a gastroenterologist who didn't believe in CVS saying it was just my gallbladder which he later took out. I then decided to switch GI doctors and found Dr Steven Harrell. Dr Harrell has been my savior diagnosing me with Cyclic Vomiting Syndrome and giving me the correct treatment I should have had a LONG time ago. Because of Dr Harrell for the first time in my life I went 8 months episode free and 10 months episode free. Currently episodes have been several times weekly but each lasting only several hours instead of several days at a time. I also now have home health and a central line implanted into my chest to receive the IV meds and IV fluids I need to stop episodes in their tracks much quicker which helps.
I 've lost 5 out of 5 jobs trying to work so in 2011 I filed for SSI and currently 6yrs in I am still fighting to win my SSI case. CVS needs more awareness and CVS needs to be listed as a disability in my opinion. In addition to CVS I have also been diagnosed with Polycystic Ovarian Syndrome, Restless Legs Syndrome, Irritable Bowel Syndrome, severe GERD, chronic migraines, major depression, neuromuscular disease (mito) and Dysautonomia...Postural Orthostatic Tachycardia Syndrome and Neurocardiogenic Syncope. I am also thought to have intermittent gastroparesis and possible Mast Cell Activation Syndrome.
The battle has been hard but I am a warrior and won't give up the good fight. I always have HOPE...
Cyclic Vomiting Syndrome causes severe episodes of nausea and vomiting that can last for just a few hours to several days, weeks or even months for some patients. CVS affects just 2% of school aged children but it can occur in people of all ages. There currently is no FDA approved treatment for CVS and no known cure.
Things became severe for me at age 4 but I've had symptoms since birth to a lesser degree. I didn't always have a name for what I was suffering from, in fact, I went 19 long years with no diagnosis for what I had. I saw a lot of different doctors through the years but none of them knew why I was extremely sick. Eventually, doctors started saying, "well since we can't figure out what's wrong with you and all tests are negative it must be in your head." My mom didn't know what else to do so she agreed with the doctors and around the ages of 9 and 11 I was placed in mental hospitals. At one mental hospital I went into a severe vomiting episode and I was locked in a blue padded room and told, "it's a behavior you need to get out of." I was locked in that room for 5hrs where they wouldn't even let me out to use the restroom so I puked and had a bowel movement on myself. My mom found out and pulled me out of that hospital the next day. After that I stopped really trying to figure out what was wrong with me and dealt with it at home only going to the ER for the episodes we couldn't stop at home. I saw a few doctors who we mentioned the episodes to during that time but none had answers.
During my schooling years it continued with me missing as many as 47 days of school in grade 10. I was having CVS episodes several times monthly and each episode lasted 2 to 7 days with the longest episode lasting 2 weeks. I had to miss my high school prom, I had to graduate high school a year late and even missed my high school graduation. At age 15 I tried to get help again by going to a GI doctor who did more of the same tests finding nothing and I later found out he said in paperwork that he thought I was "malingering in an effort to miss as much school as possible and I believe she may be bulimic" but he never told myself nor my mom this. I again stopped seeking treatment and dealt with it at home by myself whatever way I could to get me through each severe vomiting episode.
In February 2011 I saw an episode of The Doctors TV show that got my attention. Actress Chandra Wilson from Grey's Anatomy was on the show talking about her daughter, Serena, who has episodes of severe nausea and vomiting that was diagnosed as Cyclic Vomiting Syndrome. Every symptom fit mine exactly and I knew I had found the answer to 19yrs of severe episodes of nausea and vomiting. I took the info to my primary doctor and got a referral to a gastroenterologist who didn't believe in CVS saying it was just my gallbladder which he later took out. I then decided to switch GI doctors and found Dr Steven Harrell. Dr Harrell has been my savior diagnosing me with Cyclic Vomiting Syndrome and giving me the correct treatment I should have had a LONG time ago. Because of Dr Harrell for the first time in my life I went 8 months episode free and 10 months episode free. Currently episodes have been several times weekly but each lasting only several hours instead of several days at a time. I also now have home health and a central line implanted into my chest to receive the IV meds and IV fluids I need to stop episodes in their tracks much quicker which helps.
I 've lost 5 out of 5 jobs trying to work so in 2011 I filed for SSI and currently 6yrs in I am still fighting to win my SSI case. CVS needs more awareness and CVS needs to be listed as a disability in my opinion. In addition to CVS I have also been diagnosed with Polycystic Ovarian Syndrome, Restless Legs Syndrome, Irritable Bowel Syndrome, severe GERD, chronic migraines, major depression, neuromuscular disease (mito) and Dysautonomia...Postural Orthostatic Tachycardia Syndrome and Neurocardiogenic Syncope. I am also thought to have intermittent gastroparesis and possible Mast Cell Activation Syndrome.
The battle has been hard but I am a warrior and won't give up the good fight. I always have HOPE...
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