Emily Wrote this when she was 10, She has suffered with CVS all her life
When I feel sick I cant stand light or noise or people around me. I hate taking 5 medicines a day I am so fed up. I visit the hospital about every 3 months (12 weeks).Its different for everyone with cvs, no-one is the same some are in hospital on drips for weeks. I am luckier than others but I hate having cvs. I also have 2 other problems which makes me feel worse. The most amount of times I have been sick in one night is 34 times I was being sick 4 times an hour. When I would have an episode I would wake up at about 4 O’clock in the morning run in to the bath room and start being sick. I would stop at about 8 or 9 O’clock am. I don’t usually feel like eating much, I always say ”Why me? Why not someone else?” I also get the worst tummy ace’s in the world and really bad headaches. Not many people have heard of CVS when I told my friends one of them said ”Is it contageous?” and others say ”Is it something you eat?” they just don’t understand. Some people think that they are fed up when they have antibiotics but if they took 5 or more medicines a day then they really would get fed up. I am often off school but I try to go if I can because last year I missed 30% of the school year.
What It Feel’s Like During An Episode
I know when I’m going to have an episode but I can’t explain how. Before I wake up I have these weird dreams, I can’t explain it, then I wake up and have a fit and throw my head in between my legs it’s pretty scary because it’s like I’m not in control of my body, but I am and I just don’t know what to do. I often end up asleep in the living room or the bath room and I just cant get comfy in my bed and I cant go to sleep because it scares me when I have the dream and I know that before I’m sick I have the dream, and I know I won’t be asleep for long. I seem to spend so long in the toilet room that I get bored of it!
Dad’s note: In recent years Emily started having a dream before being sick, she sometimes describes it as a racing car dream, and it is probably severe dizziness, something she often suffers from. In an episode she seems to suffer from severe spasms in which her body doubles up, it is completely involuntary and frightening to see, unimaginable for me to think what it must be like for her. She started an episode at 2 a.m. and I sat up with her all night. She was frightened to close her eyes. She knew if she did she would feel dizzy, have “the dream” and be sick. We talked and played games until morning, she felt tired and nauseous but otherwise quite happy. By 6.30 a.m I was sinking fast, I started to doze and so did she. Within 10 minutes she convulsed and as she was laid next to me I woke to find her bent double, confused. Every 10 minutes from then she repeated the pattern if she closed her eyes and let sleep take over. After an hour on near misses she started being sick. She was pale and ill all day, the following evening she started again, hourly until morning. She would sleep or doze between bouts then convulse and sit up glassy eyed, calm but looking confused, then wake up and vomit.
To me this is sheer torture, exhausted yet scared to sleep because she knows with complete certainty that she will be ill if she does. As Emily has a strong cycle* this can’t be explained away as self induced, caused by food allergy or any of the other things I hear from well meaning, but misguided people. They don’t understand, I’m not sure I really do either.
Mum’s note: When Emily was two she would have a kind of fit where she would wake up mildly distressed and not recognize us. She did this regularly and was very different from other children waking from a bad dream etc. Emily later progressed to either falling asleep afterwards or actually vomiting in her sleep. As she became older, when I discussed these episodes with the health visitor she told me not to worry as children will automatically turn their heads to the side when vomiting asleep so I should not unduly worry about this. As Emily is my second child I was not entirely convinced by her comments. Many significant health issues we tried to pursue were looked into always resulting in that Emily had no health problems and we should stop worrying about her because we were probably the cause of the problem. We are not the worrying kind of parents our first child had very few childhood ilnesses. The most significant event I recall and I still feel shocked over it was when I entered Emily’s bedroom to wake her up for school when she was six, to find the bed completely covered in vomit, I had to take a deep breath myself before I looked at her face to see if she was still breathing. I have been with Emily during every episode she has had and I feel quite helpless as I ‘m not able to be totally in touch with her because of her altered state.
This doesn’t prove anything, it isn’t a scientific study but hopefully can illustrate just how cyclic the effect can be. For most of 1999 Emily has shown regular 2 week episodes, the only times this changed were during a period of high dose steroid treatment, which abolished virtually all her symptoms, and then later one 3 week cycle (weeks 40-43).
If in doubt if your child has CVS it might help to keep records, this will either convince your doctors that there is a strange biological phenomena or that you are a paranoid parent! Remember not all CVS sufferers show such regular cycles, or as frequent.
Emily is taking regular medication, before she started on any medications she cycled every 6 weeks or so. Because the treatment is changed or adjusted every few months we can’t read too much into this but it is clear that treatment, in her case, changed the periodicity. The episodes are now, in general, less severe although more regular. It is a trade off to improve quality of life.
Emily updated her story when she was 16, read it below:
Emily-Rose Dover Updated
It is hard to understand CVS, so to try and put it in context, right now this is how I feel: I ate a big dinner 2 hours ago, yet my stomach feels empty, I feel sick and I feel hungry, but I know I’m not going to be sick and I also have a headache. And this is a good day.
I slowly grew out of having regular attacks, aided by a cocktail of drugs. Now I am settled on taking 13 pills a day, a combination of 7 different drugs a day. I also have another medication, which I take in the onset of, or during an attack. My last serious attack was 3 years ago, triggered by tiredness from being on holiday for 2 weeks. I have had some periods of vomiting, due to stress or exhaustion, however these were not in a cyclical pattern.
I started to develop a pattern of having an attack, without the vomiting, during menstruation, I was put on a contraceptive pill in the hope of this preventing the severe pain. I have now been on the pill for 5 months and it has broken the cycle.
I now tend to be unwell day to day rather than suffering regular attacks. I regularly feel sick, have stomach aches or headaches. During the rare attack I do have, I loose my personality, don’t speak much, become very pale, have immense stomach pains and nausea, sometimes with a headache and dizziness. I don’t eat or drink much, and just rest all day, in soft lighting in a quiet environment, similar to my younger brother.
In my little brother’s story, he says “One attack I stayed in bed as I’d been sick at about 4 am, and if I slept I vomited, so I stayed up for hours. I tried to go to school, as I was going to miss a play rehearsal, but at the gates I knew I couldn’t face it.” This is exactly what happened to me, I was sick 24 times and still got up and went to school the next day because I didn’t want to miss out on the play practice. Also similar to him, when I was younger I would not go back to sleep in my bed, often opting to stay up all night in the living room with my mum, or occasionally falling asleep on the bathroom floor after vomiting. Strangely sleeping on the floor, curled up, was more comforting than being in the familiar environment of my bed.
The continuous support from my parents has helped me cope, both for always being there for me, from my mum when she is in constant demand whilst I am ill.