Hello,

I am glad to have found this group, as through my own research, I
think my daughter (almost 5yrs) has CVS.

Imogen started getting headaches around 2.5yrs old, but didn't know how
to articulate them properly, so started off by saying she had a sore
eye. She would get these episodes about every 3wks, and we began to
discover they were actually headaches. She would occasionally have
vomiting accompany them, but not always.

The headaches were really bad, so we saw a doctor, who eventually
referred us to a neurologist. She was diagnosed with migraines around
the time she was 3yrs old.

We moved to Edinburgh Scotland (from Australia), and she continued to
get the migraines, but less frequently, more like every 8wks or so.
Towards the end of our 18mth stay in the UK, she started to get
vomiting episodes, with no headaches, approx every 6wks.

I have to say, at first I thought she must be getting frequent food
poisoning, until I started to notice a pattern to it. Not just a
pattern in the frequency, but in the style in which the episode
occurred.

Basically, she wakes around 5am, and calls out that she feels weird,
and I notice she is extremely pale, and then the vomiting begins. She
vomits maybe 20 times an hour minimum (I have never counted, but it is
a lot! constant!) to the point of her vomiting yellow bile. She
cannot stop the vomiting. She gets an extreme thirst, but vomits the
sips of water immediately. She vomits her saliva, and like I said,
gets down to bile and continues vomiting. This continues all day.

During these episodes, she is extremely lethargic, and similar to her
migraines, can't stand the tv, lights, noise etc... etc.., but during
these vomiting episodes she doesn't actually have a headache like her
migraines. If I ask if her head is sore, she says "a bit" (which means
it is just a normal headache IMO, not a migraine). She also doesn't
have a fever at all, though she does feel warm to the touch.

These episodes tend to come approx every 6wks, and last mostly for
just that one day, and, like her migraines, at the end of the day,
approx 12hrs after she wakes, she falls into a deep sleep, and wakes
the next morning starving, but feeling perfectly fine! She has had a
couple of episodes that last 2 days, but mostly it is just one day.
She has had about 4 vomiting episodes that I have actually been
tracking, the last one being Jan 9th.

Although she hasn't officially been diagnosed with CVS, I strongly
suspect this is what she is suffering from, both from the symptoms she
experiences, and the fact that she suffers from migraines. I have
noticed, that as the CVS symptoms are increasing, her migraine symptoms
are decreasing in frequency. She did have a CAT scan for the migraines
(before the CVS symptoms appeared) to rule out a brain tumour, and it
came out clear. The neurologist suggested that a MRI would be a more
accurate test, but because of her age at the time (3yrs) and the fact
that she would need to have a general anaesthetic, which we didn't want
to put her through at the time.

I guess I just wanted to join this list to see if my suspicions of CVS
seem accurate. I know there isn't much that can be done to solve this
issue, but was pleased (and of course sad) to hear that others
experience such similar symptoms to my daughter.

Jen in Australia