I read this book because I heard the heroine of the story has the same rare disease that I have. Cyclic Vomiting Syndrome, or CVS. The author of the book is the mother of a child with CVS. I’m so grateful she wrote a book where the main character is ill and they are trying to find out what she has, because this is very relatable to me and everyone I know who lives with CVS.
I will say however that as the author is a caretaker to a child of CVS, and though she consulted with an adult with CVS, there are a couple of things with the female protagonist Chloe, that aren’t typical for adults with CVS. For instance while some adults can have a 24 hour episode, most adults have 4-7 day episodes or episodes even longer. My longest episode lasted 10 days. I also experience full body tremors the first couple of days. Also, the ability to bounce back and eat pizza the next day seems to be solely a thing only children with CVS can do. Since I got CVS as an adult, I asked many friends of mine who have had CVS their entire lives and they said while they could bounce back and eat whatever they wanted after an episode as a child, as an adult, they usually have to wait 24 hours after the end of an episode before attempting to eat toast. On the whole, Chloe’s episodes are on the least severe end of episodes for any adult I’ve met with CVS. In fact, I kept finding myself wishing my episodes were like Chloe’s. However, the most important thing about this book is that CVS was featured.
CVS is a mitochondrial disease and migraine variant, so many of us also experience intense abdominal pain during our episodes, as we are also having abdominal migraines. In the book Chloe is able to get on a medicine that is able to control her episodes. For some of us, being put on Amitryptiline or Nortryptiline can be enough to control the main episodes and then it’s up to us to avoid all our triggers. Some of us (like me) need a few more meds, like the “Mitochondria Cocktail” which is a few supplements in addition to Amitryptiline, to minimize the frequency of our episodes.
As in the book, when Chloe was under extreme stress but after she was on the meds, she was still able to go into an episode and that’s how it is for us with CVS. Even on meds, we can still be triggered into an episode. Our triggers could be anxiety, stress, not getting enough sleep, eating a certain food, heat, and even good excitement about an upcoming event can send us into an episode.
I like how it showed the relationship Chloe had with her mom Liz, as Liz was the caretaker, something the author knows a lot about. Also the author showed Chloe being in what’s called a “Conscious Coma” and that’s a thing many CVS sufferers do have. I personally don’t, but like most of us, I find it very difficult to talk when I’m in an episode. I whisper and use as few words as I can. I also can’t handle light or sound when I’m in an episode.
Overall, the most important part of this book is that the author chose to highlight Cyclic Vomiting Syndrome in her book and I applaud her for that, because this is a horrible disease that needs more awareness, so maybe one day we can get a cure.
If you’re reading this and you think you have CVS or you’ve just been diagnosed with CVS and want to know more or need a friend, don’t hesitate to drop me a line. I’ll get you into some great support groups and help share some great resources with you and make sure you’re getting the right treatment you need. If you’d like to read more about CVS, go to cvsaonline.org
A special thank you to the author Tricia Andersen for writing this book about CVS!
I read this book because I heard the heroine of the story has the same rare disease that I have. Cyclic Vomiting Syndrome, or CVS. The author of the book is the mother of a child with CVS. I’m so grateful she wrote a book where the main character is ill and they are trying to find out what she has, because this is very relatable to me and everyone I know who lives with CVS.
I will say however that as the author is a caretaker to a child of CVS, and though she consulted with an adult with CVS, there are a couple of things with the female protagonist Chloe, that aren’t typical for adults with CVS. For instance while some adults can have a 24 hour episode, most adults have 4-7 day episodes or episodes even longer. My longest episode lasted 10 days. I also experience full body tremors the first couple of days. Also, the ability to bounce back and eat pizza the next day seems to be solely a thing only children with CVS can do. Since I got CVS as an adult, I asked many friends of mine who have had CVS their entire lives and they said while they could bounce back and eat whatever they wanted after an episode as a child, as an adult, they usually have to wait 24 hours after the end of an episode before attempting to eat toast. On the whole, Chloe’s episodes are on the least severe end of episodes for any adult I’ve met with CVS. In fact, I kept finding myself wishing my episodes were like Chloe’s. However, the most important thing about this book is that CVS was featured.
CVS is a mitochondrial disease and migraine variant, so many of us also experience intense abdominal pain during our episodes, as we are also having abdominal migraines. In the book Chloe is able to get on a medicine that is able to control her episodes. For some of us, being put on Amitryptiline or Nortryptiline can be enough to control the main episodes and then it’s up to us to avoid all our triggers. Some of us (like me) need a few more meds, like the “Mitochondria Cocktail” which is a few supplements in addition to Amitryptiline, to minimize the frequency of our episodes.
As in the book, when Chloe was under extreme stress but after she was on the meds, she was still able to go into an episode and that’s how it is for us with CVS. Even on meds, we can still be triggered into an episode. Our triggers could be anxiety, stress, not getting enough sleep, eating a certain food, heat, and even good excitement about an upcoming event can send us into an episode.
I like how it showed the relationship Chloe had with her mom Liz, as Liz was the caretaker, something the author knows a lot about. Also the author showed Chloe being in what’s called a “Conscious Coma” and that’s a thing many CVS sufferers do have. I personally don’t, but like most of us, I find it very difficult to talk when I’m in an episode. I whisper and use as few words as I can. I also can’t handle light or sound when I’m in an episode.
Overall, the most important part of this book is that the author chose to highlight Cyclic Vomiting Syndrome in her book and I applaud her for that, because this is a horrible disease that needs more awareness, so maybe one day we can get a cure.
If you’re reading this and you think you have CVS or you’ve just been diagnosed with CVS and want to know more or need a friend, don’t hesitate to drop me a line. I’ll get you into some great support groups and help share some great resources with you and make sure you’re getting the right treatment you need. If you’d like to read more about CVS, go to cvsaonline.org
A special thank you to the author Tricia Andersen for writing this book about CVS!