- Posted February 28, 2014 by
St. Paul, Minnesota
This iReport is part of an assignment:
Living with a rare disease?
CVS: My life as of late.
The following is a summary of real events that I've experienced in my life due to cyclic vomiting syndrome. It's a disorder I have that has no known cause or cure. Please use discretion, it's slightly graphic and not for the squeamish or vomit-phobic.
Almost two years ago, I started having CVS attacks on a monthly or bi-monthly basis. This is a rare disorder that was hard to diagnose due to the fact that I have a few other disorders including Dysautonomia, Ehlers-Danlos Syndrome, Syringomyelia and Arnold Chiari Syndrome. Currently, CVS is my greatest battle, due to the unpredictability and limited treatment options.
It all kind of starts out of nowhere. I'm sitting on the couch, watching TV with my boyfriend, or at work, or at school. It's a sudden realization... "Oh my God, I'm going to have an attack."
This is the beginning of something called the prodrome phase. Sometimes I'm lucky enough to have my emergency medication available before prodrome is over, because if I don't take it fast enough, there's no turning back. I take 4 or 5 different medications and sit, waiting. It's a gamble because there's always the chance that I will start to throw up before they kick in. It feels like someone's punched me in my stomach. I start to sweat and shiver uncontrollably. It becomes impossible to be comfortable, no matter what position I'm in, and it gets harder to breathe. I can only think of sleep, and wanting to sleep. That is the only light at the end of the tunnel for sufferers of CVS. It feels like someone is sitting on my chest and I can't believe how cold my hands have become.
I feel the muscles in my stomach and esophagus start to spasm and I know it's too late, the medicine didn't work. The attacks are almost always typical, and mine last between 12 and 18 hours. I realize that there's nothing I can do but accept the fact that I will be very sick for the next day at least. I will not get sleep for at least 12 more hours. This is a tough realization. I always just sit and think 'why?'. Did I do something to deserve this? And then it really starts.
It's a bit startling at the beginning. I never know for sure how bad things are going to be. It starts violently, and I spend the first couple hours just throwing up until there's virtually nothing left. This is not like the stomach flu, and it's not like food poisoning. There is no relief. You don't get any time to recover. It's a seizure of the stomach muscles, and they will keep seizing no matter what you do.
By the time I've run out of stomach contents, I am in full swing of the attack. This is when the retching starts. With nothing coming up anymore, the stomach spasm results in a gurgling scream. I only have between 30 seconds and 2 minutes before it happens again.
This is when the delirium starts. I lose my ability to differentiate between what's real and what not. I hear things, I hear people talking. I see spots and stars that float around the periphery of my vision. I close my eyes for about 10 seconds and wake up to a jolt, thinking I was asleep for hours. My mind starts to go on autopilot in an attempt to escape this new reality. If there are words anywhere in the room, I read them over and over until they become meaningless or completely change into nonsense. There's junk mail on the floor and I can make out one word. Doorbusters. ...Doobsters. Doublers. Dubsteppers. Darstraps. Stoobstars. This is how my mind starts working. I can't grasp words and their meanings. Songs get stuck in my head until they're maddening. All the while, I'm still heaving and sweating and shaking.
The vomiting doesn't stop, I keep bringing up straight stomach acid. My throat starts to burn and I've torn muscles in my stomach before that have caused me to throw up blood. I keep a drink close by so I can rinse out my mouth and attempt to save myself from the burning. My lips start to burn too, and sometimes crack because of the acid. It's only been about 3 hours.
The time gap between when I'm throwing up slowly gets longer, but the pain doesn't slow down. It feels like I swallowed a baseball covered in icy hot. I can't lay down, I can only sit up. If I feel exhausted and lay back, I immediately have to throw up again. I'm held captive in a state of semiconsciousness and searing pain. This part of the attack lasts about 7 or 8 hours. 7 or 8 hours of misery. I have to hold my head up and often nod out for a minute. Laying down causes my esophagus to burn, and I can't take any medicine for it so my only choice is sitting up. I can't feel my hands, and my arms and legs are tingling. I get bad spasms in my facial muscles and end up making contorted faces. My fingers and toes claw up and I find it hard to control them. I get heart palpitations and it feels like someone's pounding on my chest. By this point, I'm usually silently praying for death, or at least sleep. I don't receive either.
By the time I get to the last phase, I'm already weaker than I would think someone could be and still be alive. My body has cast out every liquid I had inside me and now I just have to sit and shiver. I always try to sleep by this time. It's torture, I just keep watching the clock. Any sounds or moving light distort my brain's ability to function and so I sit in silence. I lay back and only throw up about 60% of the time. I still can't roll over on my side, or move at all. But being flat takes much less energy than sitting up. I fall asleep, and open my eyes again, just hoping it's been a couple hours, and it's closer to the end of all of this. It's only been three minutes. Repeat.
This part is less predictable. it could be 2 hours, or it could be 6 or 7. I never know when the throwing up will be over, but it continually slows down. All I want is to sleep. I keep rolling through the temperatures. Hot. Cold. Hot. Cold. Sweat. Shiver. Sweat. Shiver. I start drinking water, even though I can't keep it down. It almost always ends the same way, I will go maybe up to an hour without throwing up, then I have one grand finale [usually partially through my nose] and then it's over. The pain and nausea won't be gone for another day or so, but the time for sleeping has arrived, and I'm no longer throwing up.
I spend the next day on a strict diet of gatorade, and don't eat again until the next day after that. The time in between attacks is basically constant fear. I never know when it's going to happen. Every time I feel anything in my stomach, I start getting scared that I won't be okay. Every day is a struggle. I've been on preventative medication for almost a year now but it hasn't been entirely effective. I'm trying more options. I am willing to undergo any treatment to make my CVS go away. Anything is better than this, I promise you. Thankfully, I currently have an injection pen that I can use if I feel an attack coming on. It hasn't proven entirely effective either, but it has saved me a couple times.
But I want you to know what my life is like, currently. I'm constantly trying different medications and treatments. I haven't found anything that works yet. But this is my main focus right now, I've essentially stopped my life in order to try to get better. There's no known cause for CVS. It's just something that happens, unfortunately. It's something that's very hard to cope with. I want to know why it happens, and I want to know that there's something I can do about it. Currently, I'm powerless. I'm waiting to find something that works.