Lucy's CVS Story
Hey there!
So, I was diagnosed with cyclical vomiting syndrome when I was 7 years old; I’m now 18, although I’d had the symptoms of cyclical vomiting syndrome pretty much all my life. When I was diagnosed with the disorder the doctors didn’t really give me a lot of information about what the disorder was and what I could do to help it. All that they used to do was prescribe me pill after pill despite me telling them they don’t help my disorder in the slightest because by the time I know I’m going to have an episode, it’s too late. This led to them giving me tablets I’d take every day. These tablets made my disorder 10x worse and the number of episodes I got tripled and they’d last an increased amount of time too. From reading other people’s stories too I’ve learned that doctors very rarely listen to sufferers and ignore when they tell them certain medication doesn’t work. A typical episode for me consists of the three typical stages that come with most CVS cases The prodrome phase- This is the phase where suffers will start to feel an episode coming on, the nausea will build and build until you realise that you are going to have a full blown episode and it isn’t just a sickly feeling. I start to shake uncontrollably, and my breathing becomes very erratic, the pain will become so unbearable that I can no longer walk, talk or move and I can often become unconscious several times. This is what people call a “conscious coma”. I will also start to go incredibly cold, but my body will stay red hot and I’ll feel worse if I try to warm myself up. I’ve often missed this phase as my episodes tend to happen either late at night or early morning, so I’ve sometimes been asleep and only woken up once I’ve been sick on myself or I’ve had only seconds notice before I’ve been sick. The emetic phase- This phase is by far the worst phase of a CVS episode. I can vomit up to 30 times and I usually have around a 20-minute period ‘break’ in between each vomit. The pain is very unrelenting now and I often go into panic and my arms and legs and hands can seize up because of the constant ongoing panic attack, a lot of people panic during a CVS episode as there is often a sense of dread and a feeling that something really terrible is going to happen to you. After I vomit, I might feel better for around 30 seconds and be able to talk or drink some water, but the nausea very quickly sets back in again and you feel just as bad as you did before. My whole body will ache from the severe shaking and I become very disoriented. After several nonstop hours of an episode I can become very dehydrated and need to be taken into hospital to get iv fluids pumped into me, the waiting room at A&E can be dreadful as you can’t stand, you’re shaking , crying and vomiting and trying not to faint. Last time I was in A&E I had to struggle to the desk and beg the receptionist to get somebody for me as I could feel myself almost passing out , I collapsed on the floor twice and when the nurse finally got me she had to take me out in a wheelchair. In the ward the nurse came out to see me, but I just about managed to tell her what the condition I had was. She went to get a doctor and he said he knew what the disorder was but later told me he’d only ever seen it once before. My veins often go very weak and shrink up when I have an episode because of dehydration so it can take several attempts to find a vein. Which leaves you with lots of nasty bruises. When you’re sick and you have no more food or fluids in you, you’re body still tries to vomit so you can be heaving for minutes and be unable to bring anything up, I often end up bringing up a bright green looking substance, dry heaving makes your stomach ache like mad and is probably worse than vomiting as you know you won’t feel better until you’re sick The recovery phase - Once I’m sick for the last time, I often know pretty much straight away that I’m not going to be Ill again and the episode has ran its course . I’m normally able to talk, walk and drink fluids again and this point. I’ll feel very very tired and very hungry. It can take up to a week to fully recover from a bad episode and you often sleep for hours and hours even if you slept okay the night before. My whole body will ache like mad for days and I can struggle to sit up, walk or stand for long periods of time or I’ll be in pain when I cough and sneeze. This is because of the amount I shake during an episode and the amount I heave or be sick Currently I’ve found no relief for my episodes. I can have them up to 3 times a week though they normally stay at one every 6 weeks. It’s gotten so bad that I can go to a doctor and end up in tears because I’m trying to explain to them that I feel like I’m going to choke or seriously hurt myself when I pass out but they always tell me there’s nothing that they can do for me and they suggest I just go into A&E so that I can be monitored and given any treatment I need . Even though I can’t move to get a phone or speak to an operator and I’m usually alone when I have an episode. My advice for anyone who has CVS would be to stand up for yourself when the doctors don’t listen to you and trust your instincts because nobody knows your body better than you do, and try not to stress if you’re having to miss work or school as you’re only going to give yourself more episodes and your health is more important than any job or any grades.
So, I was diagnosed with cyclical vomiting syndrome when I was 7 years old; I’m now 18, although I’d had the symptoms of cyclical vomiting syndrome pretty much all my life. When I was diagnosed with the disorder the doctors didn’t really give me a lot of information about what the disorder was and what I could do to help it. All that they used to do was prescribe me pill after pill despite me telling them they don’t help my disorder in the slightest because by the time I know I’m going to have an episode, it’s too late. This led to them giving me tablets I’d take every day. These tablets made my disorder 10x worse and the number of episodes I got tripled and they’d last an increased amount of time too. From reading other people’s stories too I’ve learned that doctors very rarely listen to sufferers and ignore when they tell them certain medication doesn’t work. A typical episode for me consists of the three typical stages that come with most CVS cases The prodrome phase- This is the phase where suffers will start to feel an episode coming on, the nausea will build and build until you realise that you are going to have a full blown episode and it isn’t just a sickly feeling. I start to shake uncontrollably, and my breathing becomes very erratic, the pain will become so unbearable that I can no longer walk, talk or move and I can often become unconscious several times. This is what people call a “conscious coma”. I will also start to go incredibly cold, but my body will stay red hot and I’ll feel worse if I try to warm myself up. I’ve often missed this phase as my episodes tend to happen either late at night or early morning, so I’ve sometimes been asleep and only woken up once I’ve been sick on myself or I’ve had only seconds notice before I’ve been sick. The emetic phase- This phase is by far the worst phase of a CVS episode. I can vomit up to 30 times and I usually have around a 20-minute period ‘break’ in between each vomit. The pain is very unrelenting now and I often go into panic and my arms and legs and hands can seize up because of the constant ongoing panic attack, a lot of people panic during a CVS episode as there is often a sense of dread and a feeling that something really terrible is going to happen to you. After I vomit, I might feel better for around 30 seconds and be able to talk or drink some water, but the nausea very quickly sets back in again and you feel just as bad as you did before. My whole body will ache from the severe shaking and I become very disoriented. After several nonstop hours of an episode I can become very dehydrated and need to be taken into hospital to get iv fluids pumped into me, the waiting room at A&E can be dreadful as you can’t stand, you’re shaking , crying and vomiting and trying not to faint. Last time I was in A&E I had to struggle to the desk and beg the receptionist to get somebody for me as I could feel myself almost passing out , I collapsed on the floor twice and when the nurse finally got me she had to take me out in a wheelchair. In the ward the nurse came out to see me, but I just about managed to tell her what the condition I had was. She went to get a doctor and he said he knew what the disorder was but later told me he’d only ever seen it once before. My veins often go very weak and shrink up when I have an episode because of dehydration so it can take several attempts to find a vein. Which leaves you with lots of nasty bruises. When you’re sick and you have no more food or fluids in you, you’re body still tries to vomit so you can be heaving for minutes and be unable to bring anything up, I often end up bringing up a bright green looking substance, dry heaving makes your stomach ache like mad and is probably worse than vomiting as you know you won’t feel better until you’re sick The recovery phase - Once I’m sick for the last time, I often know pretty much straight away that I’m not going to be Ill again and the episode has ran its course . I’m normally able to talk, walk and drink fluids again and this point. I’ll feel very very tired and very hungry. It can take up to a week to fully recover from a bad episode and you often sleep for hours and hours even if you slept okay the night before. My whole body will ache like mad for days and I can struggle to sit up, walk or stand for long periods of time or I’ll be in pain when I cough and sneeze. This is because of the amount I shake during an episode and the amount I heave or be sick Currently I’ve found no relief for my episodes. I can have them up to 3 times a week though they normally stay at one every 6 weeks. It’s gotten so bad that I can go to a doctor and end up in tears because I’m trying to explain to them that I feel like I’m going to choke or seriously hurt myself when I pass out but they always tell me there’s nothing that they can do for me and they suggest I just go into A&E so that I can be monitored and given any treatment I need . Even though I can’t move to get a phone or speak to an operator and I’m usually alone when I have an episode. My advice for anyone who has CVS would be to stand up for yourself when the doctors don’t listen to you and trust your instincts because nobody knows your body better than you do, and try not to stress if you’re having to miss work or school as you’re only going to give yourself more episodes and your health is more important than any job or any grades.
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