Ashley's CVS Story
This is what CVS looks like…
Cyclic vomiting syndrome, also referred to as CVS, is an increasingly recognized disorder with sudden, repeated attacks—also called episodes—of severe nausea, vomiting, pain, and physical exhaustion that occur with no apparent cause. The episodes can last from a few hours to several days and in some cases weeks. Episodes can be so severe that a person must stay in bed for days, unable to go to school or work. A person may need treatment at an emergency room or a hospital during episodes. After an episode, a person usually experiences symptom-free periods lasting a few weeks to several months. It is a very disruptive and life changing disease not only for the patient but also for the family and friends.
My story…
I am a 30-year-old woman who started getting sick when I was about seven years old. I have been hospitalized more times than I can count. I would have these episodes when I would start irretraceable vomiting and horrible pain in my stomach, no one could ever tell me or my parents why. When I started puberty, I started to associate my pain and vomiting with my menstrual cycle. They told me when I was fourteen that I had endometriosis and that surgery was the only way to alleviate the pain, which we always thought caused the vomiting. Over the years, they lasered and cut out all of the endometriosis eight times before me and my family said enough. They also removed my gallbladder and appendix which in all reality didn’t give me any relief and didn’t really need to be removed. I have had over ten surgeries and no relief. If it wasn’t for my parents, they would have given me a complete hysterectomy at the age of seventeen! After years of emergency room visits, hospitalizations, and testing they found nothing.
One of two things usually happen when I seek help from the emergency room or hospital for dehydration, vomiting, or pain - they simply tell me to get therapy assuming that all of this is in my head or else call me a drug seeker and tell me my withdrawals are not welcome at their hospital and send me home treated or in most cases untreated and still vomiting. Unfortunately, there are some doctors out there who literally immediately dismiss any vocalization of CVS with the mention of usage of marijuana, claiming it's not CVS and instead Cannabinoid Hyperemesis Syndrome. Most patients who have been medicating with marijuana symptoms began far before their desperate reach for relief - Unfortunately some people who consider themselves medical professionals feel their quick assumption is cause for dismissal of an invisible disease that many stare in the face every day. I was lucky enough to find a supportive doctor that was familiar with CVS and after years of seeing me and treating me they finally diagnosed me with the disease at age 26. They would often treat me in their office when they could because they knew the ER was no help. I was later diagnosed with stomach migraines and they say that often the two go hand and hand.
My hospitalizations have led to IV nutrition, TPN (total parental nutrition) which is feed through a pic line, and dangerously low potassium levels which can cause heart attack, stroke, and even death! There are a lot of triggers but the main ones include food, stress, sleep, and excitement positive or negative. If I am overly excited about something it will in most cases cause an episode. I missed countless days of school as a teenager; now as an adult it has been increasingly difficult to keep a job! I have missed out on so many things in my life I have stopped counting. This life altering disease has taken so much from me both physically and mentally. It is exhausting trying to fight for the “good days” and even harder to find a support system that is strong enough to deal with this disease. I have lost people in my life who I have loved dearly that just don’t understand or who just can’t handle it. I thank the universe every day for my wonderful family and friends that have helped me and continue to support me, I would be lost without them! A special thanks to my parents who were there for me unconditionally and continually fighting for me! Sometimes I feel sad and other times I feel lucky to be so strong and able to live with such a debilitating disease. If I can get through this I can get through anything! I just take one day at a time and cherish every moment! My thoughts and love go out to all those suffering!
There is a significant sized group of us out there who are fighting an invisible illness called cyclic vomiting syndrome, and we need your help to spread awareness. We need understanding, education, acceptance, and a cure!
Cyclic vomiting syndrome, also referred to as CVS, is an increasingly recognized disorder with sudden, repeated attacks—also called episodes—of severe nausea, vomiting, pain, and physical exhaustion that occur with no apparent cause. The episodes can last from a few hours to several days and in some cases weeks. Episodes can be so severe that a person must stay in bed for days, unable to go to school or work. A person may need treatment at an emergency room or a hospital during episodes. After an episode, a person usually experiences symptom-free periods lasting a few weeks to several months. It is a very disruptive and life changing disease not only for the patient but also for the family and friends.
My story…
I am a 30-year-old woman who started getting sick when I was about seven years old. I have been hospitalized more times than I can count. I would have these episodes when I would start irretraceable vomiting and horrible pain in my stomach, no one could ever tell me or my parents why. When I started puberty, I started to associate my pain and vomiting with my menstrual cycle. They told me when I was fourteen that I had endometriosis and that surgery was the only way to alleviate the pain, which we always thought caused the vomiting. Over the years, they lasered and cut out all of the endometriosis eight times before me and my family said enough. They also removed my gallbladder and appendix which in all reality didn’t give me any relief and didn’t really need to be removed. I have had over ten surgeries and no relief. If it wasn’t for my parents, they would have given me a complete hysterectomy at the age of seventeen! After years of emergency room visits, hospitalizations, and testing they found nothing.
One of two things usually happen when I seek help from the emergency room or hospital for dehydration, vomiting, or pain - they simply tell me to get therapy assuming that all of this is in my head or else call me a drug seeker and tell me my withdrawals are not welcome at their hospital and send me home treated or in most cases untreated and still vomiting. Unfortunately, there are some doctors out there who literally immediately dismiss any vocalization of CVS with the mention of usage of marijuana, claiming it's not CVS and instead Cannabinoid Hyperemesis Syndrome. Most patients who have been medicating with marijuana symptoms began far before their desperate reach for relief - Unfortunately some people who consider themselves medical professionals feel their quick assumption is cause for dismissal of an invisible disease that many stare in the face every day. I was lucky enough to find a supportive doctor that was familiar with CVS and after years of seeing me and treating me they finally diagnosed me with the disease at age 26. They would often treat me in their office when they could because they knew the ER was no help. I was later diagnosed with stomach migraines and they say that often the two go hand and hand.
My hospitalizations have led to IV nutrition, TPN (total parental nutrition) which is feed through a pic line, and dangerously low potassium levels which can cause heart attack, stroke, and even death! There are a lot of triggers but the main ones include food, stress, sleep, and excitement positive or negative. If I am overly excited about something it will in most cases cause an episode. I missed countless days of school as a teenager; now as an adult it has been increasingly difficult to keep a job! I have missed out on so many things in my life I have stopped counting. This life altering disease has taken so much from me both physically and mentally. It is exhausting trying to fight for the “good days” and even harder to find a support system that is strong enough to deal with this disease. I have lost people in my life who I have loved dearly that just don’t understand or who just can’t handle it. I thank the universe every day for my wonderful family and friends that have helped me and continue to support me, I would be lost without them! A special thanks to my parents who were there for me unconditionally and continually fighting for me! Sometimes I feel sad and other times I feel lucky to be so strong and able to live with such a debilitating disease. If I can get through this I can get through anything! I just take one day at a time and cherish every moment! My thoughts and love go out to all those suffering!
There is a significant sized group of us out there who are fighting an invisible illness called cyclic vomiting syndrome, and we need your help to spread awareness. We need understanding, education, acceptance, and a cure!
Click here to SHARE this story on Facebook