Yes, I have the migraine-like symptoms...

I very rarely get a headache, but do get extreme
photosensitivity and severe dizziness for the duration of my
episodes (5-6 days). I also must hold my head totally still for
hours on end... even shifting my eyes will cause waves of nausea
and immediate vomiting. I often say that the dizziness is
almost worse than the vomiting.

For me, this started at age five and has continued for 19 years.
Like your daughter, I'm completely healthy in between cycles,
and tend to vomit 50-60 times during an 8 hour period. I've
just recently tried Zofran and it seems to reduce that number a
bit. Episodes were randomly spaced until age 10; now they occur
every 3 months.




--- Vicki Tripido <mothrotwins@...> wrote:
> I recently started using the Zofran in advance and it doesnt
> stop it but it does cut the vomiting back some . Sometimes
> she gets away with not vomiting on the preday and not until
> later in the afternoon on the full day. Does anyone else have
> the migraine like symptoms with it , the photosensitivity ,
> the dizziness? Thanks...
>
> dale van <dale2ann@...> wrote:I know how frustrated and
> hopeless you must feel. I can't recommend the Chicago Unit,
> but the literature they sent me was helpful. My daughter was
> too old to be accepted. My daughter is doing much better
> since her visit to the Mayo clinic. I highly recommend you
> going to the Chicago Unit if you have the finances to afford
> it. Liv's Physician lets her call and talk to his Nurse
> Practitioner about any question or advice she might need. It
> is a support system that gives all of us hope. Some of the
> things she is focusing on include:
>
> High protein/high carb/ low fat diet
> Routine exercise
> Adequite sleep
> No airline travel
> Decreasing stress.
> She is on an antidepresant and an anti-anxiaty medication.
>
> The main thing that has resulted in her not being sick
> since the consultation is that she now takes her Zophran at
> any sign of maybe triggering and it has helped alot. Since
> your daughter has it every month like clockwork, if it occurrs
> around the same time I would try using it right before she
> would normally trigger as a propholactic approach if it were
> my daughter.
>
> My prayers are with you.
> Ann
>
> Vicki Tripido <mothrotwins@...> wrote:
> My 6 yr old daughter has CVS , has had it since she was 6 mos.
> old every month like clockwork , , she was finally diagnosed
> with it at age 4 by a new neurologist, she gets a preday of a
> half day what we call for ease of naming it , migraine and
> then will be fine by about noon then she gets the full blown
> day where she has vomiting all day long with photosensitivity
> , dizziness , and just inability to function which usually
> starts to ease up around evening and maybe she can eat
> something then . Before Zofran , she would vomit 40 to 50
> times in a few hours but now we have lessened to about 10
> times or so during the day. The last day is the recovery day
> when she still has periods of dizziness and will hold her head
> totally still to not make herself dizzy then between episodes
> , she is totally fine. We went through all the tests , her
> lactate was also elevated at times , she was screened for
> metabolic disorders and had none , she had MRI's which were
> clear and lots of bloodwork of
> various sorts. She has been on every medicine that they could
> think of for her age, phenergan , periactin, inderol,
> propranolol , elavil, verapamil, compazine, diamox, bulbutal
> and a few others I cant remember. Nothing has helped , we
> finally stopped all the medicine except the Zofran and now we
> just deal with it and hope that it doesnt fall on a holiday or
> vacation or important day to her for school which it has and
> will continue to do.
> The only thing with all of the testing is that it yields
> no answers except that if nothing else comes up , it is CVS so
> then what? I have yet to read anyone who actually has found
> anything that helps it or makes it go away ....I have
> repeatedly asked if anyone has gone to the CVS unit in Chicago
> and no one seems to have , I keep thinking of going there but
> wanted to wait till we had exhausted all of the meds. which we
> seem to have. And what are they going to do there that we
> havent already done? So when you say that you heard it can
> get worse as they get older if you dont do something about it
> , what exactly are you planning on doing as there doesnt seem
> to be anything ??? Has someone told you something I dont know
> , it is just so frustrating to watch my daughter suffer each
> month and miss things.... she is so good about it , she doesnt
> know anything else. But now she is starting to get mad at it
> too which I think is good. She has a twin sister who doesnt
> have it....I have
> heard CVS is in the mitichondria of cells they are thinking so
> the mitochondria are not identical in twins so they could both
> be different as far as that goes.
> Please anyone let me know anything that works for you
> or your child to control this horrible disease. Later.
>
> Desiree <licountrygirl@...> wrote:
> Hi. My 8 1/2 year old son is in the process of being testing
> for what
> we think might be CVS. He's been experiencing the symptoms for
> about
> a year now - increasing in frequency in the last few months to
> about
> every 2-3 weeks. They only last for 1-2 hours for one day and
> then
> he's fine as can be. The worst episode lasted for about 2
> hours for 3
> mornings straight. I'm thankful that he's not as bad as I hear
> it can
> get.
>
> The testing is daunting. I've been very fortunate with their
> health
> in the past (I have a 2 year old symptom-free daughter.)
> Watching him
> freak out when he has to go for blood tests is hard - but I
> know it
> can be much worse and I can be thankful that it's not.
>
> He's been seen by a pediatric gastroenterologist who sent him
> for a
> huge blood workup, abdominal and renal sonograms and an upper
> GI
> series. His ammonia and lactate levels came up higher than
> normal,
> but when repeated were in the low normal range. The upper GI
> was
> essentially normal, except there was a delay in the emptying
> of the
> stomach. Once it started, it was fine.
>
> His next stop was the metabolic specialist this week who
> ordered
> another huge blood workup for metabolic diseases. It will take
> weeks
> before the results are back.
>
> We've been asked to wake him up at 2am for juice and a cookie
> to see
> if that helps. We'll see.
>
> The next step would be an endoscopy and an overnight stay in
> the
> hospital to monitor his blood as he fasts to check ketone
> levels.
>
> I've been told by other parents that the tests are pretty much
>
> necessary because if left untreated and undiagnosed, it can
> get worse
> as he gets older.
>
> I've been fortunate enough to never have had to admit him to
> the
> hospital for dehydration.
>
> So, if you would like to chat once in awhile and blow some
> steam -
> I'd listen. I'd also like to pick your brain about what kinds
> of
> testing your daughter went through before her diagnosis.
>
> My email and yahoo messenger name is LICountryGirl.
>
>
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"...you are bound by your silent legacy..."--Melissa Etheridge




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