His sister has CVS and she first wrote her story when she was 10, and he wanted to do the same. Emily updated her story when she was 16.
For several years he had regular episodes of waking up with dizziness and photophobia, with pallor. At that time he had no headache, no abdominal pain. In recent years attacks have become less frequent, but more prolonged and involve vomiting and headache. This is somewhere in the migraine-CVS spectrum.
My parents started to record my attacks in November 2001. I normally have more attacks in the spring, and roughly every month and I had dizziness, and vomiting only occurred once or twice. Then, in 2005 (age 10), I started to vomit roughly twice an hour for five hours for 3 days, although the headaches, dizziness and tummy aches made me stay off for a week. When I have an attack, I feel unwell the night before. Then when I wake up the light hurts my eyes and makes a dizzy sensation in my head and my head feels heavy, and I feel sick. I close my eyes and am guided to the sofa by my mum and get on to the far end of the sofa, which is the best place to be in an attack for me, and curl up. I can’t stand the light when I am like this. When I’m about to vomit, the muscles in my jaw go tight and about 3 seconds later I vomit, I like to have somebody to talk to, as it gives a distraction. I cannot do anything while in this stage. If I know I need to eat (this is normally around 12pm, so I spend about 3-4 hours on the sofa) and have not been vomiting for a while, I sit on the floor and eat a boiled egg by a table, which is all I can eat during an attack. Then I usually play a board game with my mum or watch television. 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. One attack I will never forget; I was sick when I got up and laid in bed for 5 hours vomiting every half hour. I was also sweating and very hot. When I tried to go downstairs I vomited at the bottom and couldn’t go any further, I laid down and stayed at the bottom for 3 hours, and vomited up frothy acid. Then I went into the living room and watched videos for about 5 hours without moving and in the dark. Normally I fall asleep between vomiting. The attacks can be very tedious and are horrible. And my friends don’t understand what C.V.S is, and they don’t understand what I mean by being dizzy. And while playing sports I feel strange and don’t know how to explain it, but I don’t feel like what’s happening is really happening. Also I get very unusual dreams in the night of an attack. When I see light and it hurts I immediately turn back into the darkness an soon as I can.